Mum tried to kill herself Monday night while I slept in the bedroom across from hers. I found her the next day as she woke up from an overdose of morphine. We had just been to the doctor to get something for the constant pain that she is in because of this fucking disease. I am trying to process what happened, between endless tears and anxiety attacks, and figure out where we go from here. I have only told one person so far, a very good friend, AnneMarie, who lives on the other side of the world. I have people around me to whom I can confide, yet I am struggling to find the words and the courage to reach out. I made a couple of phone calls which were not answered. It's the surreal thing about this experience right now: I witnessed and experienced this alone, mum does not remember yesterday. I heard her call my name, and as I walked towards her bedroom asking if she was ok I was not prepared for what Tuesday the 19th of June 2018 became.
She was, at that stage, cracked out. Her eyeballs looked like they were about to pop out of their sockets as she told me not to "make me breakfast because I tried to commit suicide, but it did not work". I felt intense pain at the revelation and burst into a tearful panic. I went to get the activated charcoal first and gave it to her. I asked her when she had taken the pills, and she told me last night but that she had vomited shortly after. She vehemently refused the hospital and told me that it clearly hadn't work, and therefore she was ok. She was hyper yet calm in an eerie way; I could catch glimpses of my mum, and then she seemed in another world, answering questions in an incoherent manner and looking like she was somewhere else... She was, for most of Tuesday afternoon.
I went through a process of detox with her. She took 50 pills and I have no way of knowing how many of those remained in her system, but she was 100% tripping when I found her. She must have drunk 2 litres of liquid in the space of 30 minus. I was focused on getting all the morphine out of her system but also concerned that the overdose had done permanent damage to an already very unwell and tiny woman. I asked her about what had happened and tried to get more details but did not get clear answers, so I proceeded to ask her about the year and month we were in. She responded 2014 before changing quickly to 2018. When asked about the month she insisted on it being December even though we are going through a major heatwave right now with highs of 40+ degrees. I sat there on her bed studying her every move and attempting to decode the mixed answers she was giving. Through unstoppable tears I begged her to stay with me, stay with me. She responded to that request by telling me that she wasn't dead; I looked into her eyes and said: "That is not what I mean mum, I love you, stay with me."
I made a juice to help her hydrate and get some form of nutrients into her fragile body which I already knew would not be able to be fed solid food that day. She drank it all, commenting that she was so thirsty. I then gave her a foot bath and scrub with soapy water to which I added peppermint, rosemary and lavender essential oils. It feels so surreal writing all this. I wanted to take her to the hospital, have her checked, but she wouldn't agree to it, shouting and getting more upset. I did not know how I would get her dressed and to the hospital. Now I read this, and I am thinking that this is what the emergency number is for, yet, at the time, that did not occur to me. I thought she had vomited most of it and I would help her through the detox process. I do not know if I did the right thing by doing what she wanted and stay with her and look after her, but I was in survival mode, for her, and logic is not always part of survival mode I guess. I just knew I wanted to be with her. I was scheduled to teach on Tuesday night for 2 hours and I wanted to tell someone, cancel the classes. I didn't. I gave mum Reiki and herbal teas after herbal teas to help her lymphatic system to work along with bentonite clay and psyllium husk.
Most of all I held her, I gave her kisses and held her hands as I unwillingly envision the thought of losing her on an intellectual level. Times with her were alternated with times when I sat alone in the living room going through my fragmented mind. I debated cancelling my classes and I asked mum if she wanted me to stay. I wanted her to rest and sleep, something she had not done fully yet because she was in the tripping/high stage of the drug. She said I could go. I also wanted to get loads of fruits and vegetables to juice and make smoothies with to start to feed her again the next day. When I came back she was a lot more coherent, almost completely. She told me she had drank a lot and vomited a few times, which was good. I wanted to clean her out in whatever ways it could come out of her body. We laid in bed listening to a beautiful Om Mani Padme Hum chant as I stroke her face and head to calm her down and try to get her to sleep.
Wednesday. Now the come down begins. She is fully mum by Wednesday morning, her eyes are hers again, and I know that today will be tough. Now the numbing effect of the morphine has worn off (due to the litres of liquid, the charcoal and bentonite she alternated in the last 24 hours) and her physical body is in more pain than ever. It would be for anyone after an overdose, but mum has rheumatoid arthritis and I can only imagine that the pain she feels now is something that she had never felt before. Today her body needs to be nourished again. I give her a smoothie for breakfast, but she drinks very little of it. I know she won't be eating a lot today, but she does eat somewhat. Bland food: smoothie, only eggs omelette and avocado. I love her so much, I want her to be free of this disease, I want to free her of all the fucking pain she is feeling, but I can't.
I am a mess right now. I have to answer messages and e-mails and pretend that this is not happening. I leave a voice message to a friend of mine about her plans for the weekend and end the message crying. Of course, she asks me what has happened; I do not know what to say, so I tell her I will tell her when I see her. How do I speak about this? To whom? Then the most unexpected person unknowingly offers words of support: Missy Elliott. My mind is restless, I feel nervous and upset. I go on YouTube to find the chant that my mum and I were listening to the day before and on the YouTube homepage there is a video about how good Missy looks these days. I want to be distracted, so I watch, mindlessly to begin with as some YouTube voice-over comments on her appearance. Then the videos shows clips of Missy talking to my screen, telling me to keep my head up if I am having one of those bad, depressed days. As I listen to her words I begin to feel less anxious as well as somewhat amused by the complete random quality of this moment. I love Missy Elliott, be it 1993 Missy or 2018 Missy. I really dig her music and in this precise moment I dig her as a person. Thank you for getting me through Tuesday night Missy.
It is now almost 2am on the morning of the summer solstice, the longest day of the year. I cannot sleep, and I cannot talk, so I decided to write so that I can somehow let some of the grief and pain spill onto this screen. I am going to the doctor in the morning to check on my own recent health issues. As I write these words, AnneMarie sends me a message: 'I've got your hand darling-always xoxo'. And for the 100th time today I burst into tears because I need to hear this right now, I need to not feel completely alone.
Summer solstice- I slept a nearly not enough 4 hours last night. I was overwhelmed by anxiety and fear and I felt this profound urge to be with mum. I lay down with her in bed, something which I have not done in a long time. I cry into her chest, and we hold onto each other for a while. My tears have come from many different places and for many different reasons in the last 48 hrs or so. One of them is that I know mum does not want to live any more. I can't write any more about this statement right now.
Mum is in a little less pain today, she is also looking more rested. We talked a bit more yesterday about what happened. I told her about how she was and what she was telling me, she does not remember. A part of me is glad that she doesn't because it scared me. I want to be close to her and comfort her as much as I can. I also have to think about what happens next, and I can't seem to get my brain in order.
22.06.2018
I published this post yesterday morning. When I started writing at 2am it was a draft so that I could write what happened and my thoughts and feelings about it. Then later that day I published the post, only to revert it to draft in the evening; the very private person that I am panicked. This is obviously a public platform and I panicked at the thought of letting people into something so private. Then I sat in meditation this morning and decided to publish this again. I created this website to give myself space to talk about things that I love, am passionate about and to be free, so that is what I am doing. Giving myself space to be. I feel the need to write about his experience so that I can understand and remember the details because I feel it is transforming my being in a profound way.
A friend of mine sent me a voice message on Wednesday, but I did not feel like listening to it at the time. When I go through tough moments I usually retreat into myself, so I did not listen to his message until yesterday. I cried, again, listening to his words. He had had a vivid dream of me standing in the corridor of his studio in the UK and reached out to me about working together on teacher trainings. I immediately sent him a message thanking him and telling him how much it meant to me that he had the dream when he did. Richard is one of those people who I instantly felt connected to, we only met in February this year, but his energy has a great resonance. At that moment I realised that the support that I need is coming to me without me going into details right now and that it is ok.
Mum is eating more today, which is very good, and she looks a lot better although very thin still. I just washed her, gave her a foot bath, changed her bed and massaged her. Taking a shower would be too much right now; she has gone to the kitchen once today and yesterday. She has been using her Zimmer frame indoors for a year or maybe a little over a year. It was so disheartening when that day came; this has been one of the most tragic thing about this disease: the slow but unforgiving decline in her physical abilities. Her strength diminishing, things that I take for granted have slowly been disappearing from her routine. She has to gather an enormous amount of momentum and effort just to open the fridge door and gets tired in a matter of minutes. Her hands have also suffered deformities at the joints. In the midst of this overwhelming situation something bright happened today, after I washed her; we sat on her bed and she pointed out that her hands were less inflamed. I looked down at the hand I was holding and noticed that indeed the inflammation in her joints were much less pronounced. And just like that, we smiled together.
For the first time in 4 days I slept 7 hours last night. I was too exhausted to cry any more and faded rapidly into a profound rest. I still look exhausted today; I suppose long periods of crying will do that to the eyes.
23.06.2018
I woke up to mum sobbing and when I went to check on her, she had peed on her bedroom floor. She can still use the toilet (although it is a very uncomfortable experience) but, because of how slow she walks, she started having incidents of peeing or soiling herself before making it to the loo. That started to happen sometime at the end of 2016/beginning of 2017 I think. It's difficult to remember the timeline as I have never written about this. After a few episodes of cleaning pee and faeces from her clothes or the floor I suggested buying adult diapers. It was such a hard conversation to have because I knew that she felt ashamed and yet again defeated by a disease that was stripping her from everything: mobility, sleep, physical strength and a sense of personal independence. She refused my suggestion through tears and despair. I didn't push the conversation any further at the time. Then a few weeks later I noticed a plastic bottle whose top had been cut off sitting on her Zimmer frame. She had cut it out so that she could pee in it and later empty it out in the loo hence saving her from soiling herself. She has been doing this for over a year but once in a while, like this morning, she misses.
I haven't spoken to her about it yet but, when I found her on Tuesday, she asked me for a diaper and put it on. I was surprised she wanted it, although it made complete sense; she had just drank 2 litres of liquid and was out of it, so I thought she was thinking ahead. She even asked me to keep another one out for when she would need to change the one she had on. Now I am not sure that it was a fully conscious act as she was without diaper by Wednesday morning and has not worn one ever since.
When I came to live with mum 2 years ago we spoke about the different scenarios regarding the evolution of her disease and what she wanted to do. By that point she had been living with RA for 4 years. It started with pain in her toes. The year it began I had treated myself to a birthday holiday to Spain (my first time here), first visiting Barcelona and then going to Mallorca from there. Mum was living in the UK at the time. I decided to treat her as well and invited her to come to Mallorca with me. When she arrived I noticed that she was walking funny and seemed in pain and was also very clothed for June in Spain. When I asked her about it, she told me it was just an effect of practising Bikram yoga and that her toes were opening up. She had started practising Bikram yoga after visiting me in Ireland and loving it. I told her that she needed to go to the doctor and that practising Bikram or any other type of yoga for that matter was not the culprit for her pain. A month later she was diagnosed with a very aggressive form of rheumatoid arthritis, 6 months after that Rebecca killed herself. Grieving is challenging, grieving while fighting an auto-immune disease... Four years after being diagnosed, having lost a daughter and steadily losing mobility and independence mum told me she wanted to die if it ever came to the day she would not be able to look after herself at all. I told her I would support her and help with any decision she took. Of course, I did not imagine, at the time, that that day may be in a near future.
Mum took a shower today for the first time since Tuesday and I cut her hair afterwards. She is definitely much better today. I bought CBD oil on Wednesday morning to help with the aches, and I am making her juices and food; generally just making sure that she feels comfortable and clean. It is so eerie and deeply upsetting to think about her alone and in such despair that she decided to take her life. I can’t get rid of the image of her when I found her: out of it, shocked to be alive and deeply disappointed. I keep thinking about all the suffering she has lived, and I feel so powerless. She apologised for causing me pain and I told her I understood why she chose to take those pills. I am upset about what led her to such action more than the act itself; the thought of her in that room, going through all those emotions and deep sadness, makes me sick to my stomach and I want to hold her so tight. Then I start thinking about what to do next, and I feel lost. I am trying my best to stay present.
24.06.2018
I went to the beach today, I needed to submerge myself in the ocean and feel supported from all around. I have always loved water, it is an element I feel very comfortable in. Mum is concerned that I am not sleeping well and of whatever is going on with my stomach. She told me not to worry about her today; I thought it was so sweet. I smiled, and I thanked her and I joked that I had planned to go to the beach today anyway. She laughed and approved. It was a good idea, I needed to disconnect a little. I am exhausted as I am writing this, again. I couldn't sleep last night and eventually fell asleep some time after 3am. I think I will sleep well tonight.
25.06.2018
I was so tired yesterday that I could barely function, yet, when I got in bed I tossed and turned for a good 30 minutes I think. When I finally fell asleep it was a very disrupted sleep; I kept on waking up every few hours, but I did sleep for 7 or 8 hours I think. My face is so puffed out from a week of shitty sleep and endless crying. I haven't spoken to anyone. I feel myself shutting down a bit more every day. The couple of friends I called at the time without success, sent messages later that week to ask if all was good and that they were there if I needed to talk. I don't really know what to say now, I didn't really know then either, so I just answered I was ok. I don't know what I would achieve now to talk about this. We all go through shit and that's that. I think mum is worried about me, worried that I might be in pain; I am. Actually I just thought about it and I don't know what I am. I obviously know that this is affecting me, but I find it hard to articulate the sensations and the thoughts; that is why writing is somewhat helping. I have been thinking about Rebecca quite a lot in the past week, I don't usually think or let myself think about her so much, but I was thinking that it would be nice to have her here right now. She died before all this shit went down with mum, and now I miss her. I think my brain is overloaded with feelings and thoughts and unanswered questions. Life is fucked up, this world we live in is so fucked up. And yeah there is some beauty in it, that doesn't nearly make up for all the bullshit. I feel angry today, I've been feeling angry. I always had this feeling of not belonging, of being out of place. I know Rebecca did too, she was very sensitive to all the things happening in this world: the violence, the hatred and us killing the planet every day. I don't know why she killed herself, I don't need to know, and I don't care actually, but I know she was suffering. I don't think I am making a lot of sense nor do I feel like I can right now. Maybe I am not making sense because what I am feeling comes from my heart, not this fucking annoying habit I have to try to rationalise everything. I feel angry, lost, fed up and powerless in a world that is continuously disappointing.
I want to disappear, I do not want to be seen. I am walking around in a daze, going through the motions. I cycled home tonight, I often cycle home, but tonight I cycled by the river. I love the light at twilight, it is my favourite time of the day, especially in the summer. The cycle path is paved with trees, now in bloom, with flowers of the most beautiful purple. Against the fading light of the sun, and the calm rhythm of the river I felt a moment of peace. Nature is so soothing. I crave being alone, away from people and city noises.
26.06.2018
One week. Time is a strange concept, an illusion according to Einstein. I broke down this morning when I went into my mum's room to check on her. I was talking to her, and then I felt like a punch in my stomach and burst into tears. She apologised again. I told her she didn't need to apologise, I told her that I cry because I can't bear to think about her suffering and despair in that moment. I can't bear that image of her in a stupor. I keep on telling her that I love her, I always told her, but now I want to hold her little body all the time and tell her I love her.
I told another friend of mine today. She is the one I called first after it happened, but she didn't answer at the time. By the time she got back to me in the evening I didn't want to talk, so I made it sound like it was nothing. Then she sent me a voice message on Thursday, to which I didn't reply (Not because of her but because I don't want to talk to anyone). I woke up to another voice message today, she lives in NY, so the time difference is quite significant. She is trying to organise the trip for her birthday later in the year, I said I was going, and now I can't bring myself to think about flights and accommodation. Everything is so uncertain. I suppose it is always, I mean that I don't know what to do about mum. She talked about going back to France to get care there before she tried to end it. It breaks my heart to think that she will end up in a hospice or something like that, but there will be a time (maybe it is already time) where I cannot provide her with what she needs. So I told Lynann this morning, in a voice message, what happened. I was shaking as I went to press the record button and I stayed silent for a good 10 secs before saying the words. I wanted to be as calm and collected as possible when I told her, but the feelings were just too strong, and I cried. I should only mention the times when I don't cry, it would save me some writing. I thought about not telling her, but I felt that 1.she deserved to know, she has a lot of love for my mum and 2. I can't keep dodging phone calls and messages with no explanations. Actually I can but society and etiquette tell us we can't. Fucking technology does my head at times, always connected, always having to answer to something or someone. I am so on edge, irritable. I find solace when I am practising and facilitating classes: moments to disconnect or perhaps re-connect, I don't know.
27.06.2018
The more I want to retreat into myself the more people reach out to me without being aware of my current circumstances. That's how life works, right? A friend of mine whom I haven't spoken to in a hot minute just sent me a message. We haven't seen each other in over a year, we live in different countries. Apparently I showed up in his dreams last night, so he got in touch like good friends do when you show up in their dreams, I know I do. He heard whatever I am sending out there, and I am super grateful for it because it is really good to hear from him. I have been missing him. His message doesn't surprise me, I'm touched. Like I said, I am receiving support even when I don't know how to ask for it. I felt somewhat more grounded today, less irritable. I think the energy of the full moon is helping to lift my own energy, although it makes me restless. I gave class this morning and tonight and I felt very connected. Teaching has been surprisingly healing in the past week. Mum is also looking better, although very skinny still, and she doesn't sleep well either. I got her melatonin yesterday, it helped her to get more hours of sleep time. My sleep pattern is also all over the place and I had very vivid dreams last night involving mum; I woke up crying and out of breath at some point. I miss sleep, proper sleep.
29.06.2018
I asked mum if she remembered anything from Tuesday, she told me she only remembers calling me into her room to tell me not to make her breakfast and being confused about the date. Apart from that, nothing. She cried after answering my question and when I asked her why she said she really thought she was going to die and felt disappointed not to have succeeded. I inquired about her mental state at the moment, and she responded that she felt in better spirits. It’s quite surreal to have a conversation like that although healthy and honest I think. Talking about suicide is still quite taboo from my experience and usually makes people quite uneasy. I’ve lost people to suicide in the past and I have also been in profound despair and seriously contemplated it more than once. Dying, be it naturally or planned, is part of the cycle of life. I don’t believe suicide is something to be frowned upon nor judged for. Is it a sign of mental illness? I don’t know. In the case of my mum it was an attempt to end her physical suffering and die with some form of dignity and choice about it. She also wanted to ‘free’ me of the responsibility to care for her.
It’s definitely a challenging experience to have this responsibility (I don’t know if that is the correct term for what I want to say, but it will do for now). It’s a roller coaster of emotions and thoughts. I often feel like I am going crazy with mixed states of mind from one day to the next, sometimes from the morning to evening. This experience is teaching me a lot about acceptance and knowing that some days will be good and others pretty fucking shitty. Right now we are both doing better. Her body is still ridden with aches and pains, but she is able to do a few things and that makes her feel good. I’m grateful to be able to heal through this together, yet I know I still have to think about what happens if this disease keeps on robbing her of more independence.
03.07.2018
I went away for the weekend; the sea was calling. For the first time in 2 weeks I wanted to see friends and spend time away from Seville and just about everything in it. It was amazing. Very last minute. I didn't think I was going to go at first, I kept going back and forth in my head about why I should or should not go. In the end I listened to my heart and went. I did ask mum if she would rather that I stayed, but she told me to go. My friend Miguel invited me to spend the weekend in Cádiz in a friend's house, so I went up on Friday evening to meet with Maria Del Carmen who was also coming with us. We had a great dinner and chilling out time at her beautiful house, and we drove to Cádiz on Saturday morning. The weather was cloudy when we arrived and even rained once we got to the beach, although it turned into a beautiful day in the afternoon. I love swimming in the sea while it rains; the water was so clear and clean this weekend. I really needed that time. I did not mention what happened with my mum to my friends. I didn't feel the need to, not because I didn't want to but more because the weekend was not about that for me. I wanted to be surrounded by friends and be carefree for a moment.
I went skateboarding with the boys while we waited for Maria Del Carmen to make it to Cádiz later in the day. I hadn't skateboarded since I twisted my ankle last year trying to be a skateboarding queen. It was SO much fun! Antonio is learning surf skate which is basically a skateboard with mobile front wheels. I was hooked, I have been thinking about getting a longboard, but the surf skate was a blast. We went back to the beach after and waited for Maria. The sea felt so cleansing, I always feel (and behave) like a child when I am at the beach, doing cartwheels and handstands and jumping around among the waves. We watched the sun set over a very calm sea. I was so physically and emotionally exhausted after we ate that I just went to bed. I slept 8 hours Saturday night, hooray! and felt ready for Sunday. And what a Sunday Funday it was: delicious wholesome breakfast in the old town of Cádiz and long walks by the beach, ice cream, more cartwheels and handstands and silliness in the waves. I am so grateful.
I had very vivid dreams on Sunday night. In one of them I was with my sister and my mum in our childhood home I think. It felt very strange. I can't remember everything but I remember that mum was telling us that she was done looking after us, that we needed to leave and make it on our own.
08.07.2018
Life after a suicide attempt is probably the strangest experience I have lived. The next few days after I found mum I couldn’t imagine how to go on with the things in my life and part of me still doesn’t yet, we have had to keep going because life doesn’t stop unless you die and even then I’m sure you go on to something else. (FFS, I’m so over thinking, overthinking AND over it). I haven’t talked about it at all, and I really don’t know if I am processing it in a healthy way or just too overwhelmed to attempt to figure it out. It’s actually quite simple: mum is always in pain, and she wanted to end it. It didn’t work and life is the same but different. I am still looking after her not really knowing what to do. I resent having this responsibility and I feel guilt for resenting it. How long can I do this for? I never wanted children, but I am doing everything that being a mother entails, and I hate it. I love mum and I clearly want to help; I just don’t want to have to think about cooking, cleaning, grocery shopping laundry, giving her treatments every waking moments of my life. I feel like it sounds awful, but it is the truth. The worst of it all is to see and hear her constant pain. She was screaming and crying out in pain last night, she is always in bed now. It doesn’t seem like a life anyone would want to live, and she doesn’t. Do I help her die?
09.09.2018
Mum made an appointment with the rheumatologist that the other doctor recommended for this coming Friday. She is in better spirits, she told me herself that she felt more upbeat mentally, which is really nice. I ask her every day how she is, but she mainly responds in terms of the physical pain. Today was the first time that she mentioned her mental state. I do not know what the rheumatologist will say, although I know there has been new discoveries as to how to treat rheumatoid arthritis. Up until now the drugs available have been injections of powerful steroids and such, which destroy much more that the diseased cells. Mum tried it when she was first diagnosed, she had a steroid injection 6 months after being diagnosed, and it helped for a month or so. From what I understood then the effects of those injections did not last and had to be redone every 6 months or so. Mum decided that she did not want to inject something so devastatingly powerful that it messed with much more than just the disease, so she started to look at more holistic treatments and therapies. We have tried everything so far I think: homeopathy, acupuncture, sound healing therapy, essential oils, massage therapy, physiotherapy, yoga, chanting, natural remedies like turmeric, ginger, you name it (the Tibetan cure of garlic at the moment), Reiki, juicing, CBD oil, smoking and eating weed, fasting etc... Some of those we actively integrated in her lifestyle and some she left behind after a few bad experiences. It had truly been a matter of finding what is helping and is not serving. Juanma, her physio, told her that she has improved in the year that he has known her and I agree. Mum didn't think so and yes, physically she still is in tremendous pain although, I told her, she has much less enema and inflammations. Of course that does not mean that the disease is not still eating away at her. She is unbelievably tenacious and patient and powerful to have been living with the effects of RA for 5 years now.
I would fall apart if I was in her situation, the idea of losing mobility and the joy I get from movement was something I often came back to when I fell into despair and fear in the first year of living back with her. I still think about that because I think of how brave she has been and how self-centred I have been on occasions. I want to look after her and make her feel better, yet I also miss the carefree lifestyle I have had the pleasure to live since leaving home. I miss it and I start thinking that, for that exact same reason, a few years spent looking after mum is not exactly something to feel resentful for. I do, I do feel resentful at times, but a few weeks back I finally let myself be ok about it, in that moment, and not try to fight it. I realised that I can have those moments, I'm still living this, and I'm still trying to figure it out, so I make mistakes sometimes. I don't need to punish myself for feeling what I am feeling, but I can try to move past it and learn. Learning takes a while sometimes, especially if there is resistance, for whatever reason. I hope the rheumatologist can offer some form of options for mum.
12.07.2018
I feel fed up today. I went to my pole dancing class, which was amazing, and then I went to look for shoes for my mum. It took forever to find something that would fit her, be easy to put on, be comfortable and also look nice. I ended up spending 2 hours looking around for shoes and do some food shopping. I cycle everywhere, so I had the bike and by the time I got home I just wanted to chill. Just chilling is never the first thing I do when I come home. I came home and I made mum lunch and other things that needed doing around the house. 95% of the time I am ok with that fact but on days like today when I was just so tired and hungry I start to get irritated with the situation again, and I start longing for the days when I didn't have to worry about anyone when I came home. This is how it goes now: I go from being completely accepting of the situation to what feels like a desperate need to get out. I usually feel overwhelmed the week before my periods when they fall on the new moon. My period came yesterday and today is the new moon, and I am actually not feeling too bad considering. I have had PMS moments where I felt like I was losing my mind and seeing zero way out. That's the thing, there isn't a way out and nor should it be. This is the cards I have been dealt right now and the only way out is through it. I know this, and I am doing good for the most part but, fuck, it's hard sometimes.
13.07.2018
We went to the rheumatologist today, and I am now feeling exhausted and drained from crying for most of the afternoon. It was a surreal experience. We arrived at 11:30am for an 11:30 am appointment, we were seen at 12:30pm. Spanish people have really perfected the idea that time is an illusion. That hour is up there with the most awkward and uncomfortable moments of my life, there aren't that many, but I sure did not need to add another one to the list.
When I looked up the address for the doc I was relieved to see that his clinic was on the ground floor. Unfortunately, there were still 2 set of stairs to manage before entering the actual clinic. We made it through the first step reasonably ok. The other two steps were much higher however and mum really struggled to climb up, I had to half carry her up the stairs. When we got into the clinic the receptionist was on the phone, and she signalled for us to go into the waiting room. Mum sat in her Zimmer frame and I sat opposite to her on the sofa, another patient was already sitting on one of the chairs. A couple of minutes passed and when I looked up to mum she was crying. I went up to her and hugged her. At that moment, the receptionist, who was still on the phone, asked me what was happening to my mum. I quietly said "nothing" and started crying myself (to my own surprise). The receptionist finished her phone call and proceeded to come into the waiting room to talk to my mum and I. I have never been one for chit-chat, so I was immediately uncomfortable; Not to mention the fact that I couldn't seem to control my tears. She asked mum some mundane questions about where she was from and that and then started a conversation with the other woman who was waiting. I could tell she was trying to 'lighten' the situation but, in doing so (standing in the doorway talking to that patient while I tried to hold back tears and mum being her ever so polite quiet self) she made me feel very uneasy. She must have talked to that woman for 30mins about mutual friends and family, a conversation neither mum nor myself could join in even if we had wanted to. I am ok with crying, crying in front of strangers about a very personal matter I am not a big fan of. I also felt she wanted us to be cheery and upbeat, and I just wanted to be left alone and sit through this episode of deep sadness. She didn't want to see that. At one point she walked away to attend to the patient who had just been seen and showed in the other patient into the doctor's office and went to do something. Mum and I were finally able to have a moment. When she came back 5-10mins later she said something to mum and mum smiled that cute little smile of hers. The receptionist immediately proclaimed: "Now you feel a bit better! Good! That's the spirit, we can't be having you two crying like this" looking at me then back at mum in a cheerleading manner. I started to cry again, there it was: she was basically saying she was uncomfortable with this display of emotions, and it shouldn't be happening. I wanted to crawl under a rock as far away from this woman. But she kept on, complimenting me on my figure, telling me I could be a model (leave me the fuck alone) and asking me what I did for a living. When I told her she said she wanted to try yoga because she is a very nervous person. She then looked at me and said: "doesn't it help you?". She meant to help me with this situation and my emotions and the fact I was crying. I responded that yes, that that is why I practise it and teach it, but I couldn't help feeling that somehow, in that woman's perception, I was failing at handling the situation. She actually asked me if I was overwhelmed at some point. I told her that no, that this was a moment in time, I just wanted to be allowed to fucking cry. What is wrong with this world when the showing of tears is seen as something that should be fixed? It was the longest hour of my day. We were eventually seen by the doc who was professional and polite. It was a formal first consultation, he took down my mum's history and asked for blood tests to be run so that he could offer the best treatments for mum, and we scheduled another appointment in 2 weeks time because he is going on holiday tomorrow. When we left I had to carry mum down the 2 stairs because she couldn't go down the steps. I had never carried her entire body before and as I hugged her tightly I could feel her fragile bones cracking in my embrace. Her head nuzzled in my neck, I kept telling her that I love her as the receptionist cheered her on like mum was competing for a game show.
I took her for lunch at a Mexican restaurant afterwards before going home. She apologised when we got home, I asked her why, and she said "for all of this". I told her she did not have to say sorry. I'm so tired. I cancelled all the plans I had made with friends this weekend. I want to be alone, I am going to the beach tomorrow.
14.07.2018
I woke up late and rush to get ready for the beach. I wanted to get ready last night, but I felt so exhausted I decided to wake up at 6 and do everything before I left. The thing is that the alarm went off, but I fell back to sleep until 7:45, and I was supposed to get the 8:30am bus to Conil. I knew I was not going to make that, but I decided to go for the 9am bus. I rushed around a bit and managed to get myself ready and mum’s breakfast ready too. She was fast asleep when I was getting ready (I had heard her cry out in pain in the night, so I figured she was only getting her sleep now). She woke up just as I was about to leave, she was sitting up to pee, but she didn’t have the time to stand up and peed on the floor and on her bed. Last year, she ordered those things that are used to train puppies to pee, and she puts one on her bed and one on the floor below because she doesn’t want to wear the adult diapers. Does it make sense? Probably not but I’m probably wouldn’t be too keen on wearing them either if I was in her shoes. So there I was, rushing to clean up before it got her sheets wet, and I kept it together. I wanted to scream in frustration, but I didn’t. I kissed her goodbye and told her I loved her and that was it. I know it’s not it though, I probably will do this again very soon.
16.07.2018
We went to the lab to give blood and urine samples for the tests that the rheumatologist asked for. It was yet another harrowing experience as mum struggled to stand up from her Zimmer frame to get into the office of the lab. I know I must accept this reality right now but every time we leave the house (admittedly it is not often sadly) I am hit with how fragile and broken her body has become. In the comfort of the house it is her and I, and I am coping somewhat with the effects of the disease but when we leave the house I am faced with the gaze of other people. I don't care what they think, but I resent the pity and (this is completely my own imagination) the judging. I know I am the one judging myself and feeling absolutely useless. The doc wasn't sure if he would be able to take the blood out because mum was unable to stretch her arm out fully and the vein was very frail and easy to tear. Another side effect. I couldn't believe it, nothing is ever going to be straightforward again. Despite all that, mum gave blood ok in the end. She is so resilient and so damn cute. The doc who took her blood was very sweet and friendly, chatting to her and making us laugh. The entire staff at the lab was fantastic and so helpful.
When we came home mum and I had a good laugh together. We hired a helper last year, Rocío, because I was going away to Fuerteventura for almost 2 months. Very sweet girl who stayed with us up until last week because she was busy with her other job and has kept cancelling on my mum for the past few weeks. She only come once a week when I am here. I don't mind that she cancels, but she always cancelled 30 minutes before she was due to arrive. For that reason mum told her that she will find someone else. Mum was very polite with Rocío, but then we spoke about it, and she started telling me things that had happened during the year that Rocío worked with us. I started laughing as mum got more and more worked up as she told about me little things that clearly had annoyed her. I laughed and told mum that, just because Rocío wasn't coming back, it was no reason to talk shit about her now :) Mum laughed with me as I said that was the first I heard about those things. It felt so good to have some laughs together.
17.07.2018
I went to bed knackered yesterday and just as I felt myself submerge in that slumber blanket I had a thought about leaving mum alone next week when I go to visit my nieces. Before I knew it I was worrying about things my mind was creating. I managed to calm myself and fall asleep and the next day we found a new lady to help mum a couple of times a week. It is a relief. Mum is fine at home, but I worry that she could fall or something other when I am not around. Worrying is such an annoying activity and inevitably creates more worry.
26.07.2018
I picked up mum's blood and urine results this morning. I don't really understand a lot of it and, although there are a few discrepancies, they are not out of the normal ranges by a lot. The big thing was, from what I could make out, the levels of haemoglobins in her blood and calcium deposits. We will have to wait until her second appointment next week when I get back from France to clarify everything and hopefully work out a treatment of some sort. Mum said she expected the results to be worse than what they were. She is still in pain constantly; I bought her ibuprofen last week because her entire body was aching, and she asked me to get her something.
I am going to France today to visit my nieces for a week. I am really looking forward to spending time with them, as well as being out of Seville for a week. Nothing against Seville although it really isn't somewhere I want to be long term and I just can't connect with the place. It's beautiful and all that, and I have friends here, but I just can't be bothered. Unfortunately I probably will be here until next summer. I've never felt like this for any places I've lived in, probably because I don't feel like I particularly wanted to move here in the first place. I know of course I was meant to be here right now and go through all this; It doesn't change the fact that I still have a hard time coming to terms with 'all this'. Despite everything, I made the decision to give myself and mum a few months to organise ourselves in regard to what to do next and, in the process, exercise my patience it seems. It is a good thing.
For the first time in 4 days I slept 7 hours last night. I was too exhausted to cry any more and faded rapidly into a profound rest. I still look exhausted today; I suppose long periods of crying do that to the eyes. s sweet, understanding of the situation and hard-working. It takes a lot of worry away.
02.08.2018
I came back to Seville yesterday to scorching temperatures and levante. I couldn't imagine a better metaphor for what I feel right now: a feeling of suffocation. I keep on having thoughts of travelling around alone without any care in the world. I have been craving being alone a lot lately. I really can't stand people I think :) Being in complete nature for the past week has re-awaken a desire to disappear and lose myself in a never-ending forest or swim so far out into the ocean that I would end up on the other side of the world.
I came back to mum being worse than when I left her, which doesn't really say much to be honest. She is always bad these days, so it's quite hard to tell any different. However, this time around she cannot eat because her arms have started to give up. I had to feed her food today for the first time since her disease started. Needless to say it was a sad experience for the both of us. I am feeling fed up, again. The feeling of being needed for every single thing she does is really bugging me today. She bought an electrical transcutaneous nerve stimulation machine last week (which arrived yesterday) to help her with alleviating pain. However, she does not have the strength to open the box nor the plastic wrapper that contained the electro pads. In short, I opened everything and worked it out for her. I could never have had children, the dependence of another being awakens some profound discomfort within me. It's probably another damn thing I have to explore. I am feeling so fucking tired of thinking today. This struggle feels real and constant and annoying. I want to detach myself from this world that I don't understand nor care to understand.
While I was away some other plans fell through for work I had here in September. I had a split moment of being bothered by it and trying to compromise for it but, in the end, I just let it go and told the person it was fine. I didn't say that to them but, I actually don't care. I think I haven't cared in a while now. Maybe I never really cared. It's just that not caring is not easy to do with other people around. Maybe that is why I am craving to be alone, not to have people around to judge or ask questions or be concerned. I watched the Whitney Houston documentary last night titled Whitney- Can I Be Me? Most people will say it was heartbreaking and sad, and I suppose it is, to society's standards. She was from the 'hood' originally and starting doing drugs from an early age to then become this cookie cutter superstar who kept doing drugs through her years of fame. She was miserable throughout it because she felt she wasn't allowed to be truly her as an artist and a human being I guess. I finished watching the documentary wondering what exactly is the me that the documentary is referring to in its title? The rheumatologist cancelled my mum's appointment on Friday morning and rescheduled it for tomorrow morning at 11:00. I rented out a wheelchair so that I could help mum get to the appointment without having to get in and out of her Zimmer frame, something that is just too much of a struggle now. I only rented it out for a week, but we will have to buy one in the long term now. Her legs are giving out now, and I must accept the fact that she can barely walk. Tomorrow we find out if there is anything to be done for her.
05.08.2018
The rheumatologist cancelled my mum's appointment on Friday morning and rescheduled it for tomorrow morning at 11:00. I rented out a wheelchair so that I could help mum get to the appointment without having to get in and out of her zimmer frame, something that is just too much of a struggle now. I only rented it out for a week but we will have to one in the long term now. Her legs are giving out now and I must accept the fact that she can barely walk. Tomorrow we find out if there is anything to be done for her.
06.08.2018
Mum was put on a combination of pills to treat the rheumatoid arthritis, the osteoporosis and apparently the urinary tract infection that she seems to have contracted. The rheumatologist explained the tests results, and it was painful to listen to it. Mum has anaemia; No surprise there since we all have it in our family, I have it and Rebecca also had it. He also told my mum that she must eat more animal protein in order to boost her iron levels and also because she needs the protein for the treatment he prescribed her to work (the compounds of the medicine travel through the body with the help of the proteins). On top of adjusting her diet he recommended that she drinks protein shakes every day for 2 weeks to get her vitamins and minerals up. Basically, the inflammation in her body is off the chain, something we were well aware of but when one gives numbers and such it puts a new spin on it. One of the results is that her level of erythrocyte sedimentation (inflammation in the body in more simple terms) is at 115 mm per hour when the common range is around under 20 mm. Absolute madness. He also looked at her x-rays: her left hip and both knees have lost all their cartilage and she more than likely will need to have them replaced in the future. For now, we have to wait and see if she responds to the treatment. I am fighting the urge to look back and think that we should have gone to a specialist way before now but that is not serving anything or anyone. Mum didn't want to go to hospital and be put on powerful medications at the time and that's that. Back then she had hoped she would get better and looked for natural ways to heal herself. Now we are here, a different time, a different space. I can only offer love and support.
09.08.2018
I had to give the wheelchair back today, so I told mum we would go out for lunch when I got back home to make the most out of the wheelchair. It's too early to tell if the treatment is working just yet, but she seems in better spirit. We had a really nice time this afternoon. We went for lunch and then for coffee and I took her for a stroll around Seville before going back home. She hasn't seen much of the outside in the last year and I worry that the lack of sun and seeing the outside world in general is not helping her mental state. I tried a few times to get her outside before she tried to kill herself, but she would always say that she was in too much pain (even though I would have pushed her around with her Zimmer frame). I can push her around with her Zimmer frame, but the wheelchair is definitely easier for both. I will look into buying or renting one longer term if her walking does not improve with the new treatment. I have to be patient but I feel hopeful.
12.08.2018
I went to the beach this weekend with my friend Gemma, we haven't seen each other in weeks, if not months, and I was really looking forward to swimming in the sea, let loose and dance like crazy with her. I always have such a good laugh with Gemma, and she dances like a nutter, which I love. We had a fabulous time. I hadn't drunk alcohol in the amounts that we drank in a very long time and I definitely feel worse for wear today :) But, eh oh, it was all worth it :). We had a great time, stayed up all night, randomly met cool peeps and danced to really good house music (I so miss that, Seville sucks in terms of good music and good clubs. That or I haven't had much luck finding them). In the midst of having a great time together I told Gemma about mum. I didn't know if I would, but it came up naturally when she asked how she was, and it was really good to share it with her. I met Gemma when I first moved to Spain, she was the first close friend I made here, now that I think about it, and she has shown me so much love and support through a lot of my highs as well as my lows. She knows my mum and the journey it has been to cope with her disease. I loved how we talked about it, it was as natural as a conversation could be. We talked, I cried a little, then we laughed, and we went on with our girly weekend.
14.08.2018
Mum looks better, she sleeps better, and she walks faster and with more ease it seems. Her physiotherapist also commented the same thing about her mobility and noted that her muscle tone has improved in her legs. Her energy levels seem much higher than they were a week ago. I don't want to get my hopes up too high but if this treatment works with mum this could get her well enough to move and find her a place close to nature and live a pain free life; Something I was starting to give up on.
16.08.2018
Mum and I had a really nice day yesterday. She is showing some significant improvements in her mobility, her sleep pattern and her mood in general. We went for lunch in our neighbourhood, and she walked most of the time, with the help of her Zimmer frame, at a much faster pace than what I had been used to for a while. To see her in much less pain and beginning to enjoy her body and moving it again is something I am very grateful for. In our darkest times I contemplated the idea that mum could end her life crippled; A thought which brought me much sadness. It is a strange feeling to finally soften in the face of this disease and contemplate the idea that mum may get better or, at least, managed the disease and live pain free. It is challenging to live with a loved one who is suffering. I am watching a documentary called Afflicted, which follows seven different people who struggle to find treatment for their condition. It also questions modern medicine as well as the relationship between the physical body and the mind, how they interact and behave when one is struck by a seemingly random disease and how does that relationship shifts in the case of chronic disease and pain. In the case of mum I have wondered a couple of times in the last few years if she had identified with the symptoms of rheumatoid arthritis. It would take me a tremendous amount of detachment to maintain the mind of an active person if I was in mum's shoes. Although I can only know for sure if I lived it.
18.08.2018
Mum and I had the best day today. She wanted to go and buy new clothes at this charity shop that we used to go to when I first came to Seville, back when she was still able to walk. I took this as a very good sign because when she started to lose more and more ability to move she also lost the desire to take care of herself in the most basic ways. In the past year when she barely left her bed everything was a challenge: she didn't bother getting dressed (she only wore the same tank top or t-shirt for days on end and no bottoms so that she could pee more easily), showered every 2 or 3 days on a good week and lost interest in her own well-being in general. This was particularly hard to manage for me because she had taught us from a young age to look after ourselves. I always remember that she had this shelf by her bed that was stacked with beauty products and perfumes. She exfoliated and took cold showers to keep her skin toned and healthy so when she lost all will to do the basics I knew we were not heading in a great direction.
Two weeks into this new treatment and she is showering every day, putting on her new clothes and changing them daily. I am so grateful to see her well, physically and more importantly, spiritually. She started practising the chair yoga class I had designed for her again and she told me she would like to cook again. I had forgotten what mum used to be like before rheumatoid arthritis took over, or I just didn't think about it for fear of dwelling and feeling sadness (which would not have helped the situation) but it is a pleasure to see her come alive again.
21.08.2018
I went to the dentist today for the first time in 4 years... I hate dentists, I have never had a good experience with them, but I have a cavity in one of my tooth which I need to take care of. It was very interesting on so many levels. First of all I realised how fearful I am of dentists when I started to get emotional out of nowhere, well, not nowhere, but I had not expected it. My dentist was super sweet and understanding, which made me feel better. Second of all, I realised that I may not have acknowledged all the stress that I have felt in the past years and months mainly. My dentist told me I hold a lot of tension in my jaw and clench my teeth together while I sleep which in turns damages my teeth and gums. My father used to grind his teeth in his sleep, and I was aware I had the same "problem" from time to time, particularly during stressful times. I actually woke myself up recently, bothered by the tension I was putting in my jaw. So I have to wear a mouth guard for a while to prevent doing any more damage. All in all it was a "good" experience: I found out that my teeth are actually not as bad I may have feared, and I was made aware of my stress level so that I can take steps towards managing it in better ways. I won't be skipping to my next dentist appointment just yet, but I am definitely not as nervous about it.
26.08.2018
I just came back from visiting Marcelo in Portugal. I love that country, I can't believe I hadn't been in 18 months, way too long. I needed a break from Seville and I needed the ocean close. I had such a nice long weekend, filled with little adventures, good food and good company. I want to write something else about the subject of Portugal, but I feel like if I write it, it will make it too real, so I won't, but I am making a note that I don't want to write it :D Moving on...
When I came home mum had made dinner, something that hasn't occurred in a very long time. Not only that but she was actually sitting in the living room! I had become used to the fact that she was continuously in her room, in bed for most of the last year. It was a very pleasant surprise; we had dinner together and chatted, watched an episode of Vikings and went to bed. My only concern is that her right ankle started to swell yesterday, and she could barely put weight on that foot to go to bed. I am worried that she might have done too much too fast and put stress on her joints. Having said that, it could be nothing. We have another appointment with the rheumatologist this Friday, so we will see how it is by then
20.09.2018
Mum turned 67 today and for her birthday she got to be out of hospital. It wasn't her only present, but it was a big one. I haven't written in ages, not since the accident really. On the 31st of august we went to the rheumatologist for a following, in order to see if the treatment is giving results. It was, it is, even thought the situation has changed yet again. After we left the doctor mum and I went out for lunch. We had a nice lunch and proceeded to go home. I had rented a wheelchair so that we could get to the appointment quicker and to make it easier for mum. Her walking had improved, but the wheelchair was just convenient. We crossed the main street after eating out and as I approached the other side of the street I failed to notice a gap between the street and the pavement. Before I knew it mum had fallen forward onto the pavement as the wheelchair got stuck in the hole between the street and the pavement. It happened surrealistically fast yet in slow motion. Mum did not even have the time to react, her poor little body just fell forward as I looked on in horror. I immediately lost it and started crying and saying oh my god over and over again (as though god was going to help me ). Of course people came rushing to help immediately, and we put her back on the wheelchair. In the mayhem a bystander mentioned that the hospital was just across the street in case my mum had broken anything. That is when I looked down and saw my mum's right foot in a very awkward position and cried some more at the thought of her having broken anything. I sobbed my way to the hospital which, thankfully, was across the street. I was in complete panic and I could not stop myself from crying. It took 6 hours for mum to be assigned a bed. She had fractured both of her tibias and one of them was going to be operated on. I actually thought she had done more damaged the way her foot was turned out to one side, but it was just the way we had propped her back on the chair that had made it looked like her ankle was fucked. I stayed with mum until she settles in her room and I went home (which is also super near the hospital) crying my heart out as I pushed an empty wheelchair. It took me forever to get to sleep that night, it felt so strange to be home without mum there. Travelling has been something that mum has had to put on hold ever since she arrived in Seville, so I have never been alone in the house before. I missed her, and I was overwhelmed by a feeling of guilt and loneliness.
Mum was in hospital for almost 3 weeks. They operated on her legs a week after she arrived, and she was kept in for another 2 weeks before being discharged. They originally were going to operate only on her right leg but decided to do both legs in the end, which is a lot better and makes more sense. It has been so tiring to go to the hospital, work, look after the house and just trying to keep it together as we go through this. I went to the hospital every morning before going to work or running errands and then anytime that I had free time. Spanish hospitals are very different to what I have experienced in France or anywhere else really. They allow one person to stay the night if they wish and the staff heavily relies on the family to take care of the patient. Family and especially the elderly is very important for Andalusian families (as it should be) and they take a very hands-on approach to the hospital stay. I did not stay the night and, at first, felt bad about it. I did ask mum if she wanted me to stay, but she said that there was no need for it, which there wasn't. I know I only felt guilty because I was judging myself, more than anything. However, I also rationalised that I needed the time alone. Those families were taking turn to spend a morning, afternoon or night with their loved ones. I have no one to take turn with, I am doing this alone, and so I decided to be kind and compassionate to myself and stop beating myself up over it. And, guess what, we made it through.
Mum is out. I made her a lovely birthday meal and cake and picked her flowers. She was so touched. I had asked her what she wanted to eat when she would be out of hospital, and she had told me a fig and goat cheese pizza. When she got out on Monday I was just too tired to cook anything, so I decided to make her the pizza for her birthday. We had a really nice day today, we spent it together, had dinner and watched one of her favourite film for the tenth times lol (Our Idiot Brother, I actually love that film too). I love her so much and, after initially feeling like this was such a set back, I had to re-think that it happened for a reason (like every fucking thing in life) and might work out for the best in the long run. They put plates in both tibias to heal the fracture and give more support, which I think will be very helpful once she starts to walk again. For now, I have to prepare for the most challenging part of it all, be a complete caregiver: changing diapers, cooking every meal, wash her and change her. I thought I was tired now, wait for it.
07.10.2018
It has been a struggle to find the time to write. I feel like I am running around non-stop; I am so glad I cherished the time off I unexpectedly had in August because it clearly was time I needed to get some energy for the past and coming weeks. Mum is healing well from what I can observe; A nurse came a couple of weeks ago to take a look at her wounds and change her bandages and I changed them again yesterday. The scarring looks ok, although it looks like it still needs some time to heal completely. Tomorrow we go to the hospital again for them to have a look and advise on the next step in her recovery. I am hoping that she will be told that she can start putting some weight on her feet whilst in a seated position and maybe slowly start to walk again.
It has been challenging but we have managed. I now know what it feels like to be a mum, and it's not fun lol I mean, I feel grateful that I am able to look after mum and be there for her, yet I hate the responsibility that comes with it (I think I have mentioned that before). I was telling friends that the universe can have quite a sick sense of humour at times. Here I am, changing diapers, making every meal, working, cleaning and trying to have a social life after years of knowing and saying that I did not want to have children. The roles have officially been reversed: mum was a single mum who brought my sister and I up while working her ass off so that we could have a happy childhood. I always admired and respected her for everything she gave us; I do so even more now having a little taste of what it feels like. I'm so glad I never had children. I love my nephew and nieces, but I was not cut out to be a mum. Big shoot out to all parents out there, respect and big love. Better you than me haha haha
08.10.2018
Well, I can only say that it is never good to have expectations :) The appointment to the hospital went very well in the grand scheme of things but both mum and I were a little disappointed. Although the doctor had never said so, we both thought that she would be told that she could start walking again (or at least put weight on her feet) on her check-up appointment. This was not the case. The doc told us the healing was great and that mum's body was reacting very well to the metal plates, which are all great news. However, she also told us that there would be no walking until the next check up appointment. We were not told when that would be, the doc told us they would send the appointment details by post. That is quite annoying in itself as we have no idea right now how much longer we have to wait. This all thing is the biggest exercise in patience, compassion and trust that I have ever had to deal with I think. Mum was more disappointed than I was of course. When we left the hospital I could see her tearing up, so I held her and told her that it was all good news despite the fact that she has to keep bed rest for a few more weeks. She is allowed to flex her knees at their full range of motion now (another good news); Up until now the orthotics were set so that she could only flex at a 45-degree angle. She does some exercises in bed, flexing and extending her knees, so this will allow those movements to be much greater and effective in her recovery. The truth is that she is doing amazing, I see her much more upbeat and rested (her treatment for RA is doing wonders). I truly believe that, in the long run, she will be more stable on her feet and stronger in general.
02.11.2018
I am getting ready to go away in a couple of days to Fuerteventura to assist on the 301 training. I am really looking forward to the experience and be back on this beautiful island. It has been almost a year since the last time I went, and I missed it. I miss sitting in the circle and take part in the training. This will be the first training since I certified as a trainer last March :) I am very excited. I am also looking forward to being away from Seville for a couple of weeks and have a break from looking after mum. I have been running around so much in the last few months and I will be happy to have some time to myself. At the same time I can't help worry a little about leaving mum to the care of someone else. I have met the woman who will look after her of course, and she is lovely, the company we used seems very professional as well. I know I do not need to worry, but it is somewhat hard to let a stranger look after a loved one. It is a lot of trust :) It also can't be easy for mum to be so vulnerable and have someone else come in to look after her. I know it will be ok, I'm just being silly.
18.11.2018
Everything went great, both in Seville with mum and in Fuerteventura for the training. I had a great time and I feel very refreshed and in good spirits. Mum is also doing well. She bonded with the woman who looked after her while I was away and had a great time together :) Lorena also came to clean the house once a week, so she was in good company the whole time. We have the second check-up coming up at the beginning of December and I think she will be able to start walking again after we see the doc. I think she is worried that she will be told she still can't walk, but it has been 3 months almost, and she looks very good, considering. The scars are fully healed and the RA treatment is still working. I told her it is unnecessary to worry before we see the doc, but I can tell she is worried anyway.
03.12.2018
Well, it went really well. Mum was SO worried the weekend before our appointment. The doc told her that it is all very well, that the metal plates are very well attached to the bones and that she can start to put weight on her feet and begin to walk with the help of her Zimmer frame. Mum started crying when she heard the news, from relief. I am so happy for her, she can start gaining more independence once again. It is a good time to be told all of that. Hopefully she will be walking a little for Christmas and start the new year in a good healing place.
07.12.2018
Well, it didn't last long :) I have to smile because the situation calls for it I think, if it's not smiling I don't want the alternative. Mum got excited (as I can understand) at the thought of walking again and did too much too soon. As a result she pulled a muscle in her right thigh. I had mentioned to her to take her time and go slow, but she wanted to fly :) She is ok although unable to walk once again. We have to wait and see. Also, her treatment is not having as strong the effects as it had at the beginning. At the last appointment the rheumatologist cut down the prednisone prescription because my mum is having side effects (blurry vision). I don't know if the lesser dose is the cause of not feeling so much relief. We have another appointment in January, and we go back to the hospital beginning of February. She is tired of the situation, understandably, and I feel, like a mum. Those words are giving me a very uncomfortable feeling in my belly. I found it very difficult to have someone so dependent on me.
18.12.2018
Mum is in hospital. What she thought to be a pulled muscle was actually a broken right hip. She is having surgery tomorrow or the day after. She is obviously in a lot of pain, which is difficult to see. I can only be there for her right now and wait and see. This time of year is always difficult; It's the 6th year anniversary of my sister's death. And every year around this time I watch mum fall into sadness, physically and emotionally. Mum is one of those people who re-live events on a physical level. On our birthdays she would feel the labour pains, not to the same degree as when giving birth, but she would have some form of pain in her lower back and pelvic region. There is probably a term for that, but I don't know it (I'll look it up at some point). Anyway, I don't know if it is something she still experiences with our birthdays, but she definitely relives Rebecca's passing every time December comes around. And this year was no different. Rebecca died 6 months after mum was diagnosed with RA and this did not make matters better for her recovery. Grieving, of any kind, is a full-time process, often very taxing on all the systems of the body. I knew that after Rebecca died that it would be challenging on mum's already declining health. I don't know if it will ever stop affecting it...
24.12.2018
Happy mother fucking Christmas!... From the hospital :) It's cool actually, I don't really mind spending Christmas there, but I think mum is a bit sad. I had planned to make dinner and all that and spend it with her and Lorena (although Lorena went to Madrid in the end anyway, so it worked out, well, for her :)). I'm still spending it with her, although it is clearly not the same as being at home. They operated on her hip though so that's good, it went all well. Hip replacement surgery is one of the most reliable and successful procedures in the field of surgery, something I was made aware of as I read up on the subject. Modern day hip replacement surgery dates back to the 1960s and has since then evolved to a high level of safety and quick recovery time. I was very happy to find that out before mum went under the knife, again. Anyway, she is looking and doing good and, as I told her, at least now it is one part of her body that is free of RA! There is always a silver lining.
26.12.2018
Mum came out of the hospital today. I really thought she wouldn't come out in time for me to go to Fuerteventura, but it turns out that I am going after all. I had let go of the idea when she got admitted to the hospital, thinking that it was best to just let go than hoping for something that may not happen. The universe gave me a surprise. I had told Lorena that we may need her and that I would know for sure on Wednesday, today. I am actually very surprised that it all worked out because I really want and need to go to Fuerteventura. I need some time out and some sun.
26.01.2019
Mum's hip is healing really well, according to the doctor. We had a check-up visit at the hospital and everything is good, with that anyway. Mum is walking again, around the house (not so much outside) and is more independent all in all. She had started walking a little while I was away in Fuerteventura in Dec-Jan. She sent me some very sweet videos (made by Lorena) to show me her progress. There are no more changing diapers, which is a welcome development for both of us, as she can now walk to the loo and use them again. She is also doing using the static pedalling machine and has gone back to do the chair yoga class I had designed for her a couple of years ago, which makes me very happy for her. It is not all gravy though, she is in a lot of pain again. She says her RA treatment does not seem to work as efficiently as it did when she was first prescribed it last September. I don't know, we have an appointment with her rheumatologist on the 5th of February.
05.02.2019
Well, it turns out that one of the side effects of Prednisone (one of the "medicine" prescribed by my mum's rheumatologist) is loss of bone mass, otherwise known as osteoporosis! Something my mum was already diagnosed with before meeting with the rheumatologist and something he was well aware of. Pissed off is not even close to describe how I feel right now. He had told us it would take some calibrating and adjusting of the dose in order to find the appropriate combination of "medicine" tailored to my mum's situation and I understand that science involves some form of trials and errors but, come on!, prescribing something that potentially worsens someone's already precarious health is just unbelievable. I remained calm as he explained that he knew the side effects but that he had prescribed it anyway because, combined with the other "medicine" (for lack of a better word), it usually had positive results in RA patients.
As I let him speak, I was first stricken with disbelief by what he was telling us, but that quickly turned into an expected disappointment. Although friendly enough, I had got the vibe from the get go that they (they are a couple, she looks after the reception while he is the rheumatologist) were living very well from their little practice; which they should, and something I think everyone deserves. What I am not ok with is when the desire to make money and live comfortably (if not in luxury) overshadows everything else, and in this case, the health of my mother. My irritation at this blatant fact made way to acceptance as I knew there was nothing we could really do now apart from taking my mum off prednisone. After his speech I asked him what were the other options now, moving forward. He told us that there had been some new research and discovery in the field of RA and that new treatments were available, so-called biological treatments. After explaining a little about the biological treatments, he looked at mum and I and inquired if mum had medical insurance here, in Spain. We answered no because mum is retired and receives her pension from the French government. He already knew this as we have been paying for every consultation (at 60 euros a pop nonetheless) and for all the medications up until now.
I know, I hear you say: "But why come to Spain when she has health insurance in France" and it is a great question. Five years ago mum had much more mobility and after initially (albeit reluctantly) having listened to the doctors and take an injection of aggressive steroids, she decided that she wanted to try a more holistic and natural approach to her treatment. Therefore, the first thing we did is move here from cold and rainy northern England to sunny southern Spain as the heat and the sun bring great reliefs to the symptoms of RA. Now, unfortunately, five years down the line and this just meant that we are somewhat trapped in Spain for now as mum is in no condition of travelling. The plan is to get her well enough to travel back to France and seek treatments there.
Coming back to today, after asking about my mum's health insurance and having been told that she did not have it her rheumatologist told us he was going to prescribe a different drug which she would have to inject every day in addition to another drug which would have to be injected once every 6 months. We had actually already done that a couple of years back, so I knew that that drug was expensive (around 200euros, but it is for 6 months). We took the prescriptions and went to the pharmacy from there. I had a feeling that we had prescribed was going to be quite pricey, I just didn't imagine how much more pricey. Until I saw the face of the pharmacist when I handed her the prescription; she asked me if I knew how much it was, to which I answered "no, but feel free to enlighten me" :) 400 euros a month, that is what this drug was going to cost. She asked me if I wanted it and of course I said no because we do not have enough money to afford this. I could only smile at the audacity of that guy, I knew then that my gut feeling had been right. This rheumatologist was after the nice payout he would get from big pharma if mum and I had bought the drug. I can't say I am surprised, but I am 100% disappointed and, at this point, so done with the so-called traditional medicine. I am tired of paying for drugs which sole purpose is to maintain the patients dependent on them without any form of healing or curing the disease. Above all, I am tired of seeing mum being cheated of time and money and energy and a possible recovery. To see her disappointed time and time again by money hungry "doctors" is the most unbearable part of this story.
08.02.2019
I asked mum what she wanted to do about the next appointment with the rheumatologist; she is supposed to go and see him again in a couple of months for another check-up, but since we cannot afford the drug he prescribed her, there isn't much of a check-up to do suppose. Once again, I find myself at an impasse, failed by a medical system which doesn't give two shits about people recovering from their disease and just prescribing expensive drugs with a list of side effects as long as the Wall Of China. I'm so fucking pissed off, when am I not these days?! But, those are my views on the situation, I wanted to ask mum what she wanted to do before making a decision, it is about her health after all. Needless to say, she is not impressed either. I told her that if she wanted to see that rheumatologist again I would take her tot he appointment, it is her call. She thought about it for a little while, and she came back to tell me that it felt pointless to go back considering the let down that this has been. Why pay someone to prescribe something which will cause injury? Why pay someone who doesn't care? She has two months worth of prescription for the anti-inflammatory drug that was prescribed along with the prednisone, after that I don't know what I am going to do. Through it all, I have continued to nourish her good food, supplements and other things to alleviate the pain as much as I possibly can, so I will continue to do that and keep trying to look for something that can help. It's hard not to give in to the disillusion and despair, I won't lie. I don't know how long I can keep this up.
07.03.2019
Mum is in pain, again, or is it still? The anti-inflammatory drug doesn't seem to provide any form of relief whatsoever. She walks around the house (with the help of a zimmer frame of course), but it is a struggle. I feel at a loss in the quest for finding something which will finally take some pain away, nothing seems to work. I am going to Fuerteventura in a month to co-teach the teacher training for a month, and I once again worry about leaving. This is so exhausting.
13.07.2020
Mum is three hours into her first magic mushrooms trip, well two hours really. We did some pranayama and some meditation before she took them and I played the Tibetan bowls and bells to ease her into the trip. I had also saged the whole house today and saged her room again and gave her Reiki before we began.
This is the latest in my attempt to find something that will provide her with some relief from this disease. She has been in incredible pain in the past 4 days and her bones are painfully cracking with each movement she tries to make. She asked me about ayahuasca a few months ago, and it got me thinking that hallucinogenics may be something to seriously consider as I feel that there is something in her psyche that needs to be healed but that she is not letting herself completely do. Magic mushrooms and ayahuasca (among others) may open her mind to what is in need of deep healing. Honestly I don't know, but I am willing to try. I am at a loss in terms of what to do to "help" her, and it is excruciating to hear her scream and cry in pain 24/7.
I just went to check on her, when I asked her if she felt something yet, she said no, and she was still crying out in pain. I went to get more mushrooms (I gave her a little more than a gram as I didn't really know what to dose her as it is her first time) but when I got back she was talking to herself in a way that made me think that she is indeed tripping. The girl I got them from was only willing to sell 2 grams, so I also saved them to give my mum micro doses to see if that helps somehow. I might be able to get some more from a friend I asked today so if I do get some more tomorrow, I will get my mum on another trip if this one proves to be ineffective.
Well, we will have to try that again. Mum did not feel anything from those mushrooms. Of course, she was disappointed, as was I if I am honest, but it was just the first try, so we'll just have to give another go. On the plus side, I managed to get her some weed, so she did get some relief in the end.
07.09.2020
Round two of mushroom trippin'. Well this time mum felt something alright. I gave her 4grams this time around since1gram did not seem to have any effects. She went to a very dark place, completely in the pain body. We meditated a little beforehand and breathed together before I guided her through a yoga nidra session. I did not expect anything, but I definitely did not expect her to go in such a dark trip. I barely slept through her screaming and suffering. She went through the usual wavelike mushrooms trip, but the highs were taking her further in the despair rather than joy.
I listened to her plead with God to have mercy while she also seemed to speak with someone, asking them to leave her alone. I got the feeling that she was addressing one person but that that person was accompanied by other beings/spirits. This went on for hours until roughly 5am, and she eventually settled.
The next day I let her process it on her own and only asked her about her experience at dinner. She brushed it off as nothing while I could see the tears appear in her eyes. I pressed on, stating that I knew something had happened since I had been unable to sleep through her experience. She gave in, saying that it had been hell, an inferno. She found herself in a dark place where she was alone with her pain, with no one to help her. I mentioned that she pleaded with God a lot and seemed to be speaking with someone, she did not remember screaming and explained that she was talking to her pain to leave her. A lot of the experience was a blur for her, as she fully went into pain mode and nothing else.
A part of me is disappointed as I was hoping she was going to find some relief from the mushrooms, but I also know that whatever trip she had she was supposed to have. To me, the fact that she was alone with her pain reinforces what I think: that the only person with the power to free her from it is herself. I want her to believe in and tap into her own power, but I think she is too lost in her pain.
01.10.2020
This is it, we are leaving Spain today. A part of me cannot believe I managed to organise this craziness. I also can't believe I am doing this again: moving mum to another part of the world; I remember moving her from the UK to Spain only six years ago. It was difficult then, she was already in the midst of this disease, but at least she was more mobile. Now she is in a wheelchair it's a different story. She can stand, but walking is harder and harder. I don't know what I'm doing, but I know I have to do it. It's now or never.
The guy from the truck company came this morning to pick up the boxes I am putting in storage when we get to France, and I picked up the car from the rental company. I'm taking mum on a bit of a road trip through Spain, at least she can say she saw some of this country before she leaves. We leave today, and we will get to France Saturday morning. I haven't found a place for us to stay when we get to France yet, the plan is to get a airbnb when we get there so that I can get some time to figure out what to do. I know this will sound insane to most of the general population, but I guess I'm not the general population and, sometimes, one just has to take the plunge and hope for the best (I tend to do that a lot, I have to say :D). Would that be called blind faith?
12.03.2021
Life: The Biggest Troll. This song came to mind as I sat down to write this blog post.
When I moved mum (and myself) back to France it was in the hope to: 1.get her some help and treatments which would alleviate her pain and give her a better quality of life and 2.find a compromise so that I could start stepping away from being her main carer and improve my own quality of life. But life had other plans, of course.
I am finally coming to accept that my life as I knew it is officially over, and that my mother is never going to get better. I kidded myself for so long, while she just went from bad to worse, hanging on to some blind faith. I am tired of fighting something which is out of my control, I don't have anything else to give to this lost battle. She hasn't been able to walk since we arrived in France, and I doubt that she will walk again now. That in itself has completely shattered any fantasy I had of stepping away from being her sole carer. In fact, I am caring for her more than ever before. What I thought would be a few months to help her settle back in France is now looking to be years of having to look after her, in a country I do not want to live in.
"I lost everything, and I felt free like a butterfly"... Not quite.
27.06.2021:
I feel like I'm being swallowed, by myself.
I told Gemma recently that I am scared that this is my life now (it is now, in this moment in time of course, but I mean now as in this is it): caring after a disabled mother, unable to travel or having a life of my own. This sounds dramatic, and it probably is if you have never looked after someone who cannot do ANYTHING for themselves. People think they know, friends who think that I can get up and go at the drop of a hat, and maybe they think that because, up until October 2020, I still managed to give my adventurous spirit what it needed. Now, the simplest of things has become an elaborated operation. The help from the home assistance is a welcome relief of course, but I remain bounded to my mum's inability to walk. She is still in the wheelchair I used to get her back to France; it is a hospital wheelchair, which requires that she be pushed by someone (me). I have begun the process of requesting an electric wheelchair, but it is taking time, and I won't know for sure if she can get one until next week. She has an appointment with the occupational therapist to assess if she indeed needs one AND is able to use one. If her request is accepted, the wheelchair won't come through until August. And even then, I will most likely have to accompany her for a time, if not all the time.
Right now, the home assistance comes Monday to Friday, lunchtime and evening, to help with the changing of diapers, clothing and feeding and some general cleaning of the house. As always, I think I had big expectations of the 'freedom' it would give me; I ain't free. She has physiotherapy 3-4 times a week (which is great, don't get me wrong), so I have to take her to the cabinet and bring her back 3-4 times a week. I also have to be present on the weekends since the help does not come on those days, making it impossible for me to go away. I also take her out of course, because I don't want her to be stuck in the house all day. My hope is that she does get approved for the electric wheelchair so that she can gain some form of autonomy, at least by being able to move around without being pushed. I keep on telling myself I must be patient, and that, even though I cannot see a way out, things could change, that I cannot fear a future which is solely based on the current situation. I keep on hanging on to this feeling inside that she can and will recover from this (like the foolish dreamer I will always be it seems), only to be disappointed time and time again by a reality which is so far off what I think can be manifested. I also try to acknowledge what I have achieved so far: moving her back to France, finding her a home, putting some form of assistance in place, looking after her to the best of my abilities, supporting her healing with the right foods, supplements and looking for various form of therapies; I see it and yet I feel like I have achieved nothing, because I haven't, not for myself.
I am being swallowed by this disease, along with her. I have been living an extension of her life, giving my whole to finding a way to get her out of this pain (even when I know it is not my responsibility, but how can I not do that). I have a million things I would like to do, things to build a life for myself again, yet, her life is consuming mine to the point I often don't have the time nor energy to dedicate to finding a job (I cannot work full-time right now anyway). There always seems to be something to do: administrative papers, doctor's appointments, wheelchair appointments, surgery appointments, the list goes on. So the time I do have I put in keeping my yoga and meditation practice and spending some time in nature in the hope of hanging on to some form of mental sanity and maintaining my vital energy, which is continuously being drained. I'm running on empty half of the time, beating myself up for the things I cannot do and grieving a life which thankfully I lived to the fullest before the shit hit the fan.
Well, this was a cheerful entry. To be fair, this blog post has never been on the cheery side, so I am being quite consistent.
29.06.2021
Johnnie called me last night to ask me if we could meet up today, it's his birthday today and he is in Paris. I called him this morning to see how long he will be in France, sadly he is only here for the day. Mum has an appointment with her physio this afternoon, otherwise I was ready to hop on a train and meet up with Johnnie and Junior just for one evening even. When he told me he was only here for the day, my heart ached a little, I had suddenly felt like I wanted to hug him super tight and have a good laugh with him. I miss him, I wanted him to hold me and tell me I was going to be ok. And also, celebrate his birthday :D
05.07.2021
Mum was approved for an electric wheelchair. I never thought I would see the day when I would consider this statement to be good news, but life is a constant re-evaluation of my beliefs system, actions and reactions, motivations and what I hold as true at any given time; while knowing that change is the name of the fucking game. So, here I am, semi-celebrating the fact that my mum will get a wheelchair. If that's not a shift in perspective, I don't know what is. An electric wheelchair is, in this moment in time, a step up from a wheelchair which I have to push around all the time; for my mum, an electric wheelchair is a gain in autonomy. Damn, that's painful to write.
25.08.2021
Well, I made the decision: I am moving to Toulouse. I'm not thrilled about moving into a city again, but it is time. I have put a lot of things in place so far which allows me to step back physically. I also need to be closer to the studio, and I need my own space. I found an apartment I will be sharing with a cool dude (we seem to connect anyway). I didn't want to move anywhere other than Portugal, but I have to adapt to the ever-changing situation. I am subletting, so it gives me some freedom to get up and leave whenever I finally can. Another transition, I'm forever transitioning :)
04.10.2021
One year. I returned to France on this day a year ago. Time flies when you're having fun, not. And to think I planned to be here a few months only, boy was I dreaming big. I'm still here, although a lot has happened between then and now. I had to reluctantly enter the French administrative system: social security, healthcare, work related 'paperasserie' etc... I hate red tape fuckery, I just can't stand it. On top of that, I recently moved to Toulouse, because it makes things easier since the studio I teach at is in Toulouse. I am doing everything I did not want to do: making some form of a life here. I just got so sad writing this. I feel so far-removed from this country and its culture that I have a strong physical reaction every time I lose myself in the idea that I could be here for much longer. Thats the worse thing about it all, I have no idea how much longer this is going to last. Mum is still not walking, and I am still waiting on more things to be put in place if I have any hope of actually leaving.
The electric wheelchair I applied for in the Spring has finally been approved, and should be here in the next week or two, I hope anyway. That will be a plus, I'm so sick of having to push her around everywhere. I need a break, from all of it.