My level of disability still isn't something I've properly come to terms with. Even after 9 months, it hasn't really sunk in that I can't currently safely stand up. I can't explain it. It's my every day experience, but that first seizure may as well have been yesterday with how abnormal it all still feels. A lot has happened, and things have changed and evolved, and I've learned a hell of a lot, but none of it is behind me really. 9 months I've lived with the threat of seizures constantly at the front or back of my mind. For 9 months I've been on wheels full-time, apart from the limited number of steps I took during physio sessions while I was an inpatient. But I still find both of those things, and many more, very challenging. There's a huge, huge difference between part-time wheelchair/scooter use and using a wheelchair full-time. And I know that I'm incredibly fortunate to be able to transfer completely unaided- there are people who are far more severely disabled than me. Yes, sometimes I'm completely unresponsive for hours at a time and then only able to move my eyes (without full control of my blink) for a while longer, and that's pretty much at the extreme end of disability, but at least I get to experience something far closer to able-bodied the rest of the time, which is the vast majority. I wrote that and then thought 'some disabled people would argue that their lives are no worse than those of able-bodied people' and they're entitled to that opinion, and I'm truly glad they feel that way, but I can't say I agree to be honest. Partly that's because I've known different, partly that's because I'm ill and in pain and I suffer (which certainly isn't always the case with disabilities), and partly that's because I'm very aware that there are still significant differences in opportunities and a lack of accessibility. Given the choice, I'd opt to be able-bodied again in a heartbeat, but I know of disabled people who wouldn't, or would have to think about it. Neither is right or wrong, but I can't see me ever changing camps on that one.
I've adapted to live with so many new symptoms/conditions over the last 9 months, but I can't say I've always coped well.. The last couple of months I've coped fairly terribly in all honesty, but things are complicated, and sometimes we have to hit rock bottom before we can find our way back up.. After my last post, my mood continued to spiral downwards, kind of into unknown territory to be honest. I wasn't in a good place at all..
Last Wednesday my community OT came and I started using my Butterfly transfer board. To be honest, I was initially a bit disappointed as it seemed quite tricky as I wasn't sure where to hold onto and it seemed like not much of an improvement, but with a bit of perseverance and practice, I've found it easier and it's helping reduce my upper body pain to an extent, although it's not useable for all transfers. Being able to stand briefly for transfers would make a big difference, but I'm not there at the moment, so for now this definitely helps. While she was here we had a bit of a chat about how I was getting on generally, and I had to admit I wasn't making much of an effort with things. I didn't admit to quite how bad my mental health had become, but I think she realised to an extent that I was struggling.
On the Thursday I spoke to my long-term CFS consultant. We did a telephone appointment due to me being out of area and the journey would've been tricky. I admitted to him that my depression was a problem. I also said I wasn't happy to increase my mirtazapine (which was my current antidepressant) because I'd put on so much weight so quickly because of it, and it gives me acne, and increased dosages in hospital made me really unwell and my seizures much more frequent. He agreed that that wasn't a good way forward after I'd explained, but said I'd need to discuss with the GP I'm seeing here in that case, as he obviously couldn't start me on a different medication over the phone. We had significant discussions about uni and career options etc too. I definitely won't be starting back at uni in September. The earliest that's likely to be realistic is September 2017, but I'm going to start looking around at career options with my current qualifications, to make an informed decision about whether to put myself through the significant stress, and relapse risk, of starting back at uni. We'll see. But I'm starting to come round to the idea that even if I can't make it back to uni or my original career choice, then it's not the end of the world. There will be other opportunities that might be better suited to my circumstances.
After speaking to my consultant on Thursday, my parents took me to a farm place with a farm shop/cafe and animals (yes, for children, but I'm still a big kid!). The wonderful staff agreed to get a Guinea pig and rabbit out for me to cuddle- it was fab. Despite being in the depths of a depressive episode, I smiled, and loved it. It's so calming and therapeutic cuddling little furries! I'd love a couple of guinea pigs again, but I'm not able enough to look after them myself at the moment, and mum already has me to look after and isn't well herself, so no luck convincing the 'rents so far, but I'll keep trying..😉
On Monday, I saw my GP about my low mood. I was anxious about it. An hour before my appointment, I quickly typed up a sheet listing my meds and about why I was there (typing is easier than writing) and basically just mumbled something and handed it to him when I got in there.. I then spent the next 5 minutes staring at my hands in my lap and taking my rings on and off my fingers nervously. He eventually started asking some questions and I answered them. But I can't do medical appointments these days- they stress me out. He was nice enough, but has limited understanding/appreciation of some of my conditions (which is fine and to be expected with a complex history like mine, but tricky). He started asking about whether I was walking plenty around the house (a conversation we've had before), I explained again that I couldn't stand, and he said I'd be getting increasing muscle wastage the longer I'm off my feet- not what I needed to hear when I was struggling with feeling unable to ever recover.
I was there about my depression, but he basically said that pills 'won't make me happy'. 'I'm my own best doctor', and 'medications and professionals can only take me so far' etc. He's right to an extent of course, but I was fighting my mind as hard as I could, and was failing dismally- more than anything I needed hope that things would improve and I wouldn't always feel so awful, and that wasn't the message I got in all honesty. I'd ended up at the doctors because I was scared by just how depressed I'd become and some of the thoughts I was having, yet I came away from the appointment feeling possibly more depressed than prior to it, and feeling invalidated in a lot of ways, unheard, and misunderstood. I've been badly depressed once before and the right medication helped hugely (citalopram, but I was taken off that in hospital to try the mirtazapine both for my nausea, and because of concerns about interactions). Sometimes brain chemistry has just gone haywire and needs a bit of help to get back on track. Meds are not always the answer, they're certainly not for everyone, and they don't get rid of the problems in your life/underlying issues, but the right medication can be literally lifesaving. I realise that it's natural to be (perhaps very!) fed up in the circumstances I've found myself in, but it wasn't just my circumstances- they hadn't changed- depression is an entity all of its own, and circumstances are largely irrelevant to be honest, although I was an easy target as someone severely disabled, in chronic pain, with an unknown prognosis. Once it took hold, it was easy for depression to convince me that life would be incredibly arduous and painful and I'd never amount to anything.
Although I didn't feel that my doctor grasped just how low and desperate I was, I was there to get my antidepressant changed and he did do that. To prevent interactions he's also taken me off Amitriptyline, which was to help nerve pain. I think he gave me the choice actually, but I hadn't really considered whether I wanted to come off Ami, so just kind of agreed without much thought. I get more nervous about interactions than I used to after all my problems in October (that led to my current level of disability) were arguably caused/triggered by medication(s). It would be nice to stay off amitriptyline if at all possible because it would mean less risk of interactions and serotonin syndrome etc, but I'm just going to have to see what happens with my pain over the next few days and weeks. I've been moved from Mirtazapine to Sertraline to try to lift my mood- I'm pleased, and think it was an absolutely necessary switch, but am also concerned about my nausea potentially becoming unmanageable again..
Mirtazapine has been incredible for my nausea and appetite! I've put on a lot of weight very quickly which was amazing, and very much needed, although it became a concern as time went on. I don't know what will happen now in terms of weight because my GP said pretty much all antidepressants can cause fluid retention and weight gain to an extent, but I never experienced that with citalopram, and citalopram and sertraline are closely related (SSRIs), so we shall see.. My weight gain definitely isn't just fluid retention though, it was caused by eating lots, due to my lack of nausea, an insatiable appetite and constant drive to eat, caused by the mirtazapine. I'm under no illusions- I ate the food to make it happen (although immobility will have contributed), it wasn't some weird kind of magic. It would be nice if my weight just stabilised and stayed as it is, and my appetite stayed similar, but with a few less sugar cravings! At the moment it's mostly a case of wait and see, both what happens because of the sertraline, and what happens because of the lack of mirtazapine.. Only time will tell whether the medication change was a good call..
After nearly 3 days on the new medication, I'd say there are definite pros and cons. My depression was the absolute priority, as I'd largely lost the will to keep fighting, and in all honesty pretty much lost the will to live, and the new medication has definitely helped that already, which is a huge relief. To be honest, I'm questioning whether the mirtazapine was actually somehow having a negative effect on my mood towards the end, given how quickly I've noticed the difference. I feel much, much more like me again. As hard as things are, I can have a laugh about things again and my mood is pretty normal. It's been a bit more difficult getting to sleep, but I was awake til 2am even on the Mirtazapine, so although the mirtazapine should have helped with that, it's been no great loss in that regard. I've woken up significantly earlier feeling far more alive which is a big positive, and one I hadn't even particularly considered. I'd got so used to the horrendous mirtazapine-induced grogginess after months of it, but it's amazing for that to be gone!! And I think that in itself has helped my mood too.
My biggest concern was my nausea, and that's back- ugh! I've felt really sick and been retching a lot again.. But at the moment, the nausea is actually far preferable to the depression. I'm hoping it might ease a bit once I get used to the new medication and any side effects from that reduce, but mirtazapine was also an antiemetic, that's why I was put on it, and sertraline isn't. Those of you who know me well and/or have been following my blog for a while will know what I've been through with my nausea, narrowly avoiding NJ tube feeding etc, so it's a big concern, but at least my weight is much, much better at the moment. I did wonder whether I could use a small dose of mirtazapine simply as an antiemetic but that is more risky with interactions etc again, plus I don't know whether a small dose would work, or what degree of side effects I'd get at a lower dose, so we'll see (I'd obviously discuss with my doc first!).. Hopefully that won't be necessary. May have found the way to lose some of the mirtazapine-weight though, haha.
When my nausea was so awful a few years ago, I was told it was probably gastroparesis but I decided against a referral for to a specialist for this, because I was suffering from serious test-and-hospital-fatigue so another referral and more prodding and poking really didn't appeal, plus it wouldn't have changed anything in terms of my treatment, and at that point I'd found a medication that helped quite a bit and I was managing to eat alright-ish. When I had to come off that medication in hospital, and lost weight and pretty much stopped eating again, leading to me being tried on Mirtazapine, it seemed pretty miraculous to be able to eat loads and be practically nausea-free. It was a huge relief, but distracted by other significant challenges, I didn't give it much thought. On the return of my nausea, I thought yesterday that if I was managing to eat so much and just get a bit of reflux while on Mirtazapine, then it couldn't be gastroparesis, surely. So out of interest I googled 'Mirtazapine gastroparesis' and a load of scientific journal articles popped up about success of Mirtazapine at treating different cases of gastroparesis, including those that didn't respond to the standard treatments. Oh. I haven't read any of the actual papers, but it's interesting nonetheless. It's definitely not a medication without side effects, but there are times when I'd have given anything for a medication to give me some relief from the nausea, even if only temporarily. All those months with the threat of tube feeding hanging over me because my weight had become 'dangerous', and no guarantees that even that would be a success, the situation was truly desperate. Mirtazapine hasn't ultimately worked out for me, but it's certainly proof that the right medication can get my stomach doing its job/rid me of my nausea! Even just that gives me hope.
The other medication change- reducing my amitriptyline (have halved for now, will stop completely in a day or 2)- has led to increased pain, but nothing too drastic. It's been mostly hip pain, leg pain and back pain.. It's the first time I've been off amitriptyline since my back was hurt, so I hadn't realised it had been helping that.. I'm taking the odd painkiller, but I'm trying to avoid taking tramadol as I'd rather not be taking that daily again, and I know the pain will be ongoing. So although the pain has been bad, I've had other meds I could've resorted to and haven't, so not a disaster so far which is good!
The next potential medication change I'm waiting to see about, is something for spasticity/spasms, depending on the opinion of a specialist when I see her. I've had an appointment through to see a consultant in rehabilitation medicine in a 'spasticity clinic' next week, to assess whether I do or don't have spasticity in my legs, and what (if anything) we do about it if I do. At the moment, if I do certain things with my legs they go into agonising spasms, and it makes it difficult for me to do stuff, and difficult for physios to do things with me. The neuro-physio was keen for this specialist to see me to assess me in terms of what they should be doing with me too. So hopefully it'll be a beneficial appointment and I've been told she's a good and empathic doctor. It doesn't mean I won't freak out about the appointment because I will (hospitals/medical stuff and I don't mix well these days, if only that meant I got to opt-out of medical problems!!), but it's always nice and reassuring to hear positive reports about a doctor in advance!
Yesterday another self-propel wheelchair arrived, which is for upstairs. My stairclimber gets me up the stairs, but then I need to transfer into another chair, having left my main chair at the bottom. I had a chair with little wheels that my parents could push me around in and I could move it a bit by pulling on things around me, but it'll be great to finally be able to move around my room independently and get around upstairs without help. That's if I can negotiate it through all the doorways etc!! Fingers crossed..
Today I was back at the CFS service seeing their OT and neuropsychologist, and it was positive and helpful, despite also being quite tough and distressing at times. I'd met the OT once before, but feel I'm now getting to trust her, which is really important for me, and met the neuropsychologist for the first time today, but she seemed nice and it was good to meet her while with someone already familiar, so would be happy (well as happy as I can be with a medical person and relative stranger) to see her alone in future. Both of them are so understanding and unfazed by all my problems, which is fantastic. The rest of this has been typed over the last few days, and I don't feel well enough to go into today's appointment more than that just now, but it went well and I'm happy with the plan going forward, with input from various different members of their team.
My head has not been a fun place at all just recently, but the last couple of days on the new medication, and my appointment today, have given me some hope back that I can do this, I can get better. I might never be 100%, I probably won't be in all likelihood, but I've known that for years- that's something I can come to terms with and learn to live with. I just need to learn to be kinder to my body and encourage its recovery, to whatever extent is possible, rather than constantly punishing it for not managing what I'd like.. It's not Jess vs Body. I need to be kind to my broken body, because it's doing its best, it's the only one I've got, and berating it isn't going to solve anything!
Who knows what degree of recovery is possible for me, but there are clear areas needing attention, so the obvious thing to do is to start to work on those in the ways I can, as much as I can manage, with advice, guidance and help from professionals, and then see where things go from there.. Onwards and upwards.
(And yeah the irony of me including a picture of a staircase when I'm a full-time wheelchair user at the moment isn't lost on me!😅 I can't take a literal step, but I'm as capable of taking a metaphorical step as anyone 😉🙌🏻)