It's been a while since I've updated on here about everything.. I last posted on 15th July, when I'd recently found out about my impending return to hospital. Those of you who follow my Instagram (@Jess_ME_CFS), Twitter (same) or Facebook (fb.com/jesscfs) will know both that I'm not in hospital yet, and I've had a bit of a rough time just recently..
Let's start on a more positive note. Last time I did an update post, I was about to head off on a week's holiday. Despite not sleeping well, and a day where I was unwell, and another where a seizure interfered quite a lot, overall, I coped well, and had a lovely time. It was a much-needed reminder that I can still experience a degree of normality despite everything. And knowing I was going to be returning to hospital in the not too distant future just made it all seem sweeter in a way. It was lovely to spend some nice time with my parents and a couple of close family friends, and I even met up with a friend who also battles chronic health problems while I was away, which gave me a much-needed chance to chat things through with someone who 'gets it' to a large extent.
While away, on the day I was already unwell, I was contacted about 2 things that were difficult. The first was the hospital that I complained to after a very traumatic experience, wanting to know whether I'd been happy with their response. I told them that I found their response incredibly insulting. I've had a few calls since (from the safeguarding social worker) and I'm meant to be contacting patient relations again on their advice, but just at the moment, I can't really deal with all that. My back pain is still awful though, and my PTSD is a challenge, so yeah- I'm still bitter about what was done to me to be honest, and frustrated/concerned that nothing seems to have been done to prevent a recurrence affecting another patient. The other was news from uni- wasn't completely unexpected, but disappointing. I think if I decide to blog about that, I'll do so some other time separately though.
Since getting back from holiday, it's been really quite stressful constantly waiting for the call to say the hospital have a bed for me. Obviously being hospitalised is something that's incredibly daunting for me, so jumping every time my phone goes off, and waking up each day wondering whether today's the day, is pretty rough. Just being nervous about that is probably throwing me off a bit really.
I'm struggling with my health in lots of ways just at the moment.
I've stopped my preventer inhaler for my asthma, because since a change to my medications (I think), it gives me a bad tremor. I can't deal with that on top of everything else. The worst that will happen is a return of my asthmatic cough really, which is already happening to an extent. I don't pretend asthma is something to mess with, and certainly wouldn't recommend anyone else changing their own meds, but I'd been forgetting it a lot accidentally (like, pretty much all the time), so knew I wasn't having an asthma flare-up as a result. My asthma is mostly related to allergies, and to an extent exertion. My allergies are fairly well controlled with antihistamines at the moment, and exertion is pretty non-existent, so should be fine. I'll discuss with the Drs when I'm in hospital, but I'm avoiding my GP for now.
I'm incredibly tired at the moment. Since changing my medication, I've been getting about 4 hours sleep per night, and that's been over a month now, so I think it's largely simply sleep deprivation. Even 'just' that can have a massive knock-on effect on other conditions though, particularly my CFS.
My exhaustion and CFS worsening has meant I've had some rough days with my N-E Seizures. After a few good months, it feels like a big step backwards, and a stark reminder of how fragile my situation is and how quickly things can spiral. In the space of 7 days, I've had 6 seizures, 1 more than I had in the whole of May, June and July put together. I've spent rather a lot of hours unresponsive, and many, many more with horrible seizure warning symptoms (all spotted in retrospect, as it's so hard to spot symptoms like drowsiness among everything else!) or recovering afterwards. On one of the days I came round after a 3 hour seizure and had just got to the point in the recovery period where I could speak and move all 4 limbs with a little strength and some control when I went back out again. So frustrating. It's been many months since I've had a day as bad as that. Since then, most days have been bad.. I still find the seizures, and the symptoms that surround them, very challenging. And it's always scary when you think you've got some level of control over something and then you're proven wrong. It seems like I can prevent a lot of the seizures that I get warning of, which tend to be ones with a significant psychogenic element (where something had severely triggered PTSD causing a sort of body flashback etc), whereas the ones where my body just physically gives up on me (due to exhaustion etc) just seem to come seemingly out of the blue, with no real chance to do anything to prevent them. Other than try to manage my conditions/symptoms better, which is easier said than done to be honest.
I was told my type of seizures do tend to change over time, and this had already been apparent in a few ways (like how they become far far longer), and now they seem to be involving very short (I think) episodes of complete unconsciousness. I've always been completely aware throughout before, just completely unable to respond. It doesn't make that much difference really, just feels a bit strange. It's like coming round from a dream, but into a state where I'm still not able to respond. I'm still aware throughout that I'm in a seizure and that I've had them before etc, I'm just aware that I'm no longer always fully 'with it' throughout, although most of the time I still am.
I hate seizures with a passion, and another symptom I really hate is my nausea. It's not to the extent that I want to go back on the mirtazapine, as I realise now that it made me feel horrendous, but I really miss the relief I got from it in terms of my nausea. I wonder whether I should've gone through with the referral to the specialist in gastroparesis for testing while I had the chance. I think that opportunity has been and gone now though, and I'm not sure a definitive gastroparesis diagnosis would change much anyway, plus I know why I made the decision I made at the time and fully understand why I had had enough of referrals and prodding and poking, and do kind of feel the same again now. Right now, I'm taking no medications for nausea, for the first time in years (for a variety of reasons- some have been deemed to risky for me now, others just don't work so seem pointless). I'm coping just about, and am managing to eat enough I think (to keep my weight safe), so hopefully it will all be ok, and it's absolutely great not to be having to take antiemetics. I'm nowhere near the situation I was in a few years back with serious threats of NJ tube feeding, and inability to eat with life-threatening weight, so I feel really lucky in that sense. It's still tough though. Thank goodness for mints and acupressure nausea bands!
I saw the CFS team again last week, and am so pleased to have them working with me. I hadn't seen their physio before, but she was as nice as I'd been assured she was, and it was good to discuss things with her. It also made me realise I really need to review all the basics of fatigue management.
She's hoping to do hydrotherapy with me, as she has access to a pool and in deep water I'd be able to practice standing and walking with only 10% of my weight going through my legs. She just needs to check that they have the equipment necessary to be able to get me out of the pool if I've had a seizure, as the hoist they normally use has a seat, but they won't be able to sit me up if I've had a seizure (I'd just flop), so they'd need to hoist me flat IF a seizure happens. Obviously before they can take me in the pool, both me and her need to agree that the situation will be safe whatever my body decides to do! Particularly as feeling unsafe can be triggering for me. The water is at about body temperature, so hot, so we'll also need to be wary in terms of my dysautonomia, as it could cause my blood pressure to drop a bit, but I think that's a 'see what happens' situation. I'm a bit of a nightmare patient really..
Other stuff in terms of physio involved discussions around hypermobility, which I've known was an issue (at least to an extent) for a while. A few different people have commented on it (particularly physios). I need to be careful with my joints is the long and short of it, and try to keep things mid-range rather than stretching things. Hypermobility is associated with lots of my other conditions and symptoms, so it's not a surprise. I still don't know whether I have full-blown EDS, but it would come as no great surprise, put it that way. CFS, dysautonomia and FND are all associated with EDS, and my joints popping in and out of position, easy bruising, skin hyperelasticity and joint pain all point to EDS being a possibility, so for now it's just something for me to be a bit aware of, and try to avoid hyperextending joints, although that's easier said than done with a movement disorder that causes my body to contort beyond my control. The hypermobility itself can lead to fatigue as it takes a lot more energy for the muscles to keep joints in the normal position due to joint laxity causing instability.
I'm going to try to think of a way to distract my brain when my arms and hands are spasming out of control/I get loads of involuntary movement. At home I tend to go on my phone or iPad, as my hands manage well with those, but my arms are a particular problem during medical appointments, and that's not a particularly useful strategy in those situations..! My medical professionals are mostly already aware that I'm scared of them/struggle to trust them, without me being rude sat on my phone on top, haha. I've also been given a few little things to do to try to work on my core stability, mostly to try to ultimately ease my back pain to an extent- although for now they do aggravate it. For now, we're not doing anything in terms of my legs, because everything triggers agonising spasms.
Physio is going to be such a fine balance. Causing a bit of pain in the pursuit of recovery is fine and completely necessary, but I need to be careful not to push things beyond what my body can cope with, particularly given the added complication of seizures to avoid these days too. I need to avoid boom and bust and relapses, while also trying to regain some function.
After seeing the physio, I saw the neuropsychologist. A lot of that was discussing thoughts around where I'm at, why it's all come about, and how to move forward. I know I pushed my body to breaking point (along with help from a few other conditions/infection/possible reaction), and I recognise that. I realise that I don't always know when to stop. I know my body screamed at me in so many ways, and instead of listening to it, I quietened it down with medications, allowing me to push my body even harder. I know I pushed my body to the point where symptoms were only just bearable, for a long long time. I know it was ultimately probably my downfall. It's a hard mentality to break out of. I'm an all-or-nothing kind of person, and stubborn. It was hard when I was trying to keep up with peers academically who are physically well. It's hard to step back and realise the destruction you're causing. It's hard when you're managing to just about hold things together, to appreciate that your approach is wrong and maybe walking away with current abilities intact would be the more sensible option. It's only really possible to pick up on mistakes in retrospect. But you know ages (years?) ago when I said on here that no-one could prove my approach was wrong? Well, it was wrong. No-one could give me hard evidence that pushing to my limits would lead to damage, but my symptoms now speak for themselves, whether they're the result of damage or dysfunction (evidence suggests severe dysfunction of my body systems due to a downward spiral seems most likely). I know moving forwards that my approach needs to be different, and my attitude. I need to know when to say no. I need to learn to recognise when my body isn't coping. I need to look after myself and my body better. Logically, I know all this. I know I need to do some but not too much etc etc. But how do I put it into practice and keep myself on track? That, I'm not quite sure yet.
We also talked about the fact that preventing relapses is psychologically really important for me. I feel really strongly that this recovery needs to be for good. Small setbacks are inevitable, but hopefully massive relapses are avoidable. I need to adopt a different approach to managing my health that can ensure I don't end up back where I ended up in October. I need to make sure that huge drop in ability level never happens again. I can't keep going through this rehab process repeatedly- it's too hard in every way, on me both physically and mentally, and on those around me..
We talked about lots of things (obviously, that's the point..), and my fears around how I'll cope when I initially go into hospital was something we touched on. She's going to see whether she can introduce me to the neuropsychologist who will be able to work with me while I'm on the ward prior to me being admitted, but given that I don't know when that will be, it all depends. They're also going to see whether someone from the CFS team can be involved in an early meeting with the ward team so that we can discuss things to try to make sure everyone is on the same page. They're also willing to share information with the team on the ward taking on my care. The ward neuropsychologist is happy to speak to other team members on my behalf if I need information to be passed on, but don't feel able to discuss it. Honestly, everyone has been amazing, and everyone every step of the way has been trying to do things to put me at ease as much as possible and make me feel safer. It doesn't make it all easy, but hopefully it will be enough to make it bearable.
It's more recently than that that things have been really flaring, although they'd been increasingly tough for a week or so before, and I don't know why. I don't know whether once again I've pushed beyond my body's limits (holiday, appointments, trips out etc), whether it's simply the sleep deprivation, whether I have an infection of some kind, whether it's stress/anxiety about going back to hospital, whether it's just bad luck, or a combination of multiple things. What I do know, is that the flares are rough, and never seem to feel easier. At the moment, I have family visiting, so it's bad timing for a flare when I want to be enjoying doing things with them! I'm glad I've been at home while feeling so unwell, as fatigue-related stuff is tough in hospital, but I know I will deal with similar challenges in hospital while trying to work out limitations and push things a little. We'll obviously keep things as safe as possible, and the team seem to appreciate that my CFS and dysautonomia need to be taken into consideration, but an element of 'no pain, no gain' is going to have to be involved. Hopefully we'll get the balance right and get things moving forward, but without too much in the way of aggravating symptoms and set-backs.
I don't know when I'll get into hospital, but when I do, I'm not sure where I'll be able to keep people updated. If it comes to it, I might give my parents the email address to publish some blog posts here on my behalf, or if I can get online (fingers crossed for the sake of my sanity!), it might just be some Facebook/Twitter updates, but I'll try to keep you all in the loop as much as I can (I just can't say where is most likely, or how often it's likely to be!). There should be a place at the bottom still where you can sign up to get emails when blog posts are published (as they might not get shared across social media while I'm in hospital, it all depends, and I never publish on a schedule, and likely never will!), and social media details are in 'about me' at the side and at the top of this post.. Everyone is very welcome to follow wherever, but they are all chronic illness accounts, and I believe in openness and honesty, so it involves the good, the bad and the ugly- I'm simply not going to pretend everything is easy when it's not- so you've been warned!
Who knows when hospital will happen though- it could still be a while.. *shrugs*
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