This week I had my CFS service initial assessment (I've had CFS since 2009, but had an initial assessment due to starting with a different team after moving areas). It was positive and the person I saw was really great. She spent a couple of hours with me, and got a good grasp of my current situation and how I've ended up where I am, and took time to understand things from my perspective. Some of what we discussed, I hadn't anticipated discussing, particularly trauma-related stuff, so that was quite hard, but called-for, and I liked the way she went about it- never pushing me into discussing things I didn't feel able or ready to, and never making me feel unbearably uncomfortable. I always find discussions around the mental health aspect of my problems (and the events that have caused them) difficult, but the lady I saw was understanding, empathic and supportive. I haven't come away feeling full of optimism and hope and positivity- she's not a miracle worker- but she's at least started getting me to think about manageable tiny steps I can start taking to try to turn things around.
At the moment, my mental health is pretty much in tatters, much like my physical health. I'm struggling with PTSD, anxiety and depression.. Yeah, there's no point me denying it (to myself or others)- my depression has relapsed.. It's not just been an isolated day, it's not just me being narked about my circumstances (although they're certainly not helping)- for weeks I've been feeling flat or tearful, and spend little time feeling anything else. The only other time my mood has been this low and I felt this hopeless was a year ago when I consulted my doctors for the first time about a depressive episode.. It was utterly horrific, and it's no easier this time round.. Worryingly I'm still on antidepressants as they are controlling several different things, they were keeping my depression successfully at bay, and there hadn't been a right time to try coming off them with my life in such turmoil, so I don't know what to think. It seems like they're not working, but I don't know what things would be like without them. I don't know if I can cope with changing anything about my meds (i.e. the dosage or type of antidepressant), as that's never straight-forward and always results in some sort of symptom flare- I'm not sure I'm strong enough to deal with that right now.. The last change to my medications increased my seizures from about 1 per week to 4-5 per day and I couldn't even sit up without losing my balance- so my concerns aren't unfounded, particularly as I fear we wouldn't be able to manage with me at home if my seizures increased to that extent again. Plus my current antidepressant is controlling my nausea, and I'm pretty much out of other options for that, and I can't cope with a return of my severe nausea and inability to eat.
I can completely see my mental health conditions for what they are, I'm under absolutely no illusions. But they're debilitating on top of my debilitating physical conditions, and I've lost hope. I can't see the light at the end of the tunnel. I see a vast mountain to climb and feel I have no physical or mental strength left to face it.
It's really hard when a very recurring thought is 'I hate my life'. And while I keep reminding myself of the many good things in my life, the things I'm thankful for, and the things I continue to enjoy, it's true that my life is currently very challenging and scarily far from ideal- that's undeniable. Its hard to struggle so much with every single task I do, when the vast majority of people my age either don't have to deal with it, or do it with absolute ease. It's hard to keep telling myself that things will get better, when I know logically that I actually have no idea how much better they'll truly get, and it could take a very long time. It's hard to convince myself to keep trying, when I fought so hard for so long, and it got me seemingly nowhere. I've learned the hard way that doing too much and trying too hard can be detrimental, and my pushing-through mentality has led to many a set-back over the years. Every time I've got back up, eager to prove my resilience and get on with life; keen not to let my conditions beat me. But you can only pick yourself up from falls and set-backs so many times before you can't take it any more, shrug and admit defeat, unable to see a way forward. That's where I feel I'm at right now.
But somewhere deep down there's a glimmer of awareness that the future may hold a life very much worth living; it may not be the life I've dreamt of in months/years gone by, but I can build a life with enjoyment and meaning. It's a tiny, dwindling glimmer of hope, but it's there. I haven't 100% given up on myself. I still desperately want to get better. But I'm struggling to find the will to battle through each arduous day with all the symptoms each of those days involves. I'm struggling to find the strength to deal with the challenges that are oh-so-present in my life as it stands.
I do still have some good days. I still have days where I can have a laugh and feel like the old me. And it's so important to notice and savour these days. But these days are sadly the minority.
I want to go to sleep and wake up miraculously fixed. But that's just never going to happen. The only way to get the recovery I crave is to work at it- slowly and painstakingly. Nobody can make it an easy, quick process or do it for me.
The lady I saw validated my feelings, and helped me see that they are understandable and to be expected to an extent, given all I've been through over the past year (and the 5.5 years prior to that!). She said that she'd almost certainly feel the same if she were me. But she also helped me see that I need to find a way to move forward from where I'm at.
There are things I can't do, but also beneficial things I can.
I am unable to walk, but I can move my legs a little, to start to build back some strength. I can't stand, but I can sit forward and up straight, working on my core and balance. My hands don't work like they once did, but I can use playdoh and use exercises to work on their coordination. My brain doesn't process things as it should, but I can challenge it and help it start to learn to work with my body again. I can't go out independently, but I can agree to go out when people are willing and able to take me, helping me become less isolated. I can't run in the fields with my dog, but I can sit and enjoy cuddles with him, which will lift my mood. I can't play the ukulele and piano like I once did, but I'm sure I can pluck the odd string of my ukulele and play a few notes on the piano, helping my hands and reminding me of things I used to enjoy.
It's easy to look ahead at my long-term goals and where I want to be and get overwhelmed by how impossible it feels to reach them. It's easy to sit back and feel defeated. It's easy to be frustrated by how far things are from where they were, and easy to become devastatingly demoralised by all the abilities I have lost. Depression has stolen my motivation and desire to do anything; anxiety has made me not even want to try, for fear of being unable to do things; I fear doing anything because of how easily a seizure can be triggered; my PTSD means I am plagued by memories of how badly things can go wrong. But doing nothing will only result in me becoming stuck where and how I am, which is not going to help me become more hopeful, and will definitely result in me not moving towards my long-term goals.
I am where I am, and as difficult as that is to accept, for now I just need to find it in me to start doing the bits I can do. I need to try to focus on the little things I can do to help me move forward towards achievable, non-overwhelming, manageable goals. Achieving these little goals will hopefully rekindle the hope I so desperately need. Right now the bigger picture is too demoralising to look at, so I need to focus on the here and now, while doing the tiny things I can towards making the future I want more likely.
It's easy to focus on the can'ts. It's easy to give up. It's easy to convince myself that I can't get back to where I want to be. It's easy to just curl up and want to block everything out. It's easy to see the mountain I have to climb, and hard to see the light at the end of the tunnel.
It's incredibly, incredibly hard to just accept things as they are, and keep doing the tiny things I can do to work towards some improvement, and really hard to see those things as hugely positive, but that's what I need to try to do. I've come to that realisation, but it doesn't make it easy- far from it. I'm dealing with so many symptoms (mental and physical) every day- nothing I do is going to change that in the immediate future. When every day is a struggle, it's hard to think about doing things that will only be beneficial in the long-term. But if I want to rebuild my life, and see how far I can get with my recovery, I can't do nothing. I just need to start small. But I do need to start. And I can.
Life update
I recently put a fairly detailed update on my personal Facebook, which read as follows (adapted and updated slightly):
I spent a week away from home with my mum and my dog a few weeks ago which went well and was a bit of a break away from everyday life. And it involved cake, scones, goats and monkeys- so was therefore pretty perfect in my eyes!🍰🐒🐐 We were in the county where I grew up, staying with/seeing family friends from 'back in the day', which was really nice and a reminder of easier times! (In stark contrast to now where just to go away for a few days necessitated a trailer with a stairclimber, a wheelchair for upstairs, wheelchair for downstairs, a bath board, a toilet frame etc.. More equipment than was needed for taking me away as a newborn baby!)
I had my second physio session a couple of weeks ago at the local Hospital which was with my neuro-physio, the neurology clinical specialist, and a physio student, all of whom are thankfully really lovely. I was strapped onto a nifty machine (THERA-trainer Tigo) that is like an exercise bike that you use from a wheelchair, and a motor moves your legs around for you (it goes round whether you do anything or not) at the speed that you control from the touchscreen, but you can also actively cycle along and it will record any input from either leg (and it's designed to cope with spasms etc). I did 2 minutes one way and then 2 minutes in reverse, with a break in between, and actively contributed less than 20% of the time, yet I was in a lot of pain that evening and absolutely exhausted, which I was warned would be the case, but it still came as a surprise!😳 It's a very clever machine though, and seems a good place to start, with none of the 'upright-ness' that my body seems to despise so much, and it doesn't matter whether my legs choose to work with the machine or rebel against it (they do a bit of both). I need a machine the same/similar at home really, so that I can use it on a much more regular basis, but am not really sure of options at the moment (may or may not be able to get one funded through the NHS, and options in terms of the actual machine). It's becoming increasingly obvious that rehabilitating me is not going to be a quick or easy process, and my complex mix of conditions makes everyone rather hesitant, but the team were really pleased with how I got on in the session and my body's response to the new equipment was positive.
A really nice community occupational therapist came to see me a couple of weeks ago too, and she's sorting various things for me including transfer boards- she's coming back soon to look at/use the boards with me, and work out what works best. My pivot transfers are fine and safe (after 8 months practice, they should be!), but the banana/butterfly board is to try to reduce upper body pain. We also discussed whether options exist for moving me when I'm unable to move myself (which thankfully happens less frequently than it used to), but a hoist is the only obvious solution, and that's definitely not a route I want to go down as I really don't like being hoisted, so the OT is going to go away and think and see whether anyone she works with has any other ideas!
The absolute low point of the week before last was receiving the response to my hospital complaint about the abuse I suffered while unresponsive a while back. It was an agonising, upsetting and triggering read, and I'm not at all happy with the official response, but I just hope the 2 individuals involved seriously regret what they did, I hope my complaint helped them understand the significant implications of their actions, and most importantly, I really hope they might think twice before acting so inappropriately and hurtfully in future.. I sobbed inconsolably when I read the letter, and I still find the injustice of it all, and the imbalance of power, incredibly difficult to come to terms with. That people can get away with physically and mentally harming me simply because I couldn't give a visual description of the person that physically hurt me (my eyes were shut- I was seizing), as I wasn't 100% sure that it was the same person who later returned, and because it's 'my word against theirs' feels incredibly wrong. They've probably moved on with their lives now, content in the realisation they've got away with it, whereas I live with the implications of their actions every single day.
I've had my properly fitted wheelchair over 3 weeks now, and am pleased with it- particularly pleased that it's not black!!💙 I'm now meant to be getting a self-propel wheelchair for upstairs too, the other equipment from the OT should be here soon, and I recently renewed my blue badge no-quibble for another 3 years.. Honestly these things are considered good times in the life of a chronically ill/disabled person 😉😅♿️
I'm so incredibly grateful to friends who are continuing to make the effort to stay in touch and/or do things with me- it truly means the world.. Won't say more here, but you know who you are.. 💕 And anyone who hasn't been in contact for a while- I completely understand that life is busy, and I won't hold it against you at all, but it's always nice to hear from people ☺️ (Apologies that I'm not always quick at replying though!)
I'll be honest, things are feeling really quite tough at times. The constant symptoms, the uncertainty about my future, my level of disability, the passing of months with little progress, the being passed around between health professionals and waiting ages each time for any help, and my lack of independence, can easily become overwhelming, frustrating and demoralising. I'm trying to focus on the glimmers of hope, the many good things in my life, and the things I'm thankful for. It's hard to always stay positive with my life as it is at the moment, and it sometimes proves impossible, but I'm trying..
My current favourite quote: "Be strong now, because things will get better. It might be stormy now, but it can't rain forever." - I'm waiting for my rainbow!🌧⛈⛅️☀️🌈
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