Thursday, 7 April 2016

Time to break my silence: my new symptoms, diagnoses and challenges..

Advanced warning- this post is long! Fellow fatigued people in particular- you may not want to read all at once!

In the past I've shared all my medical battles and worries on here very openly. In the past, things have gone quiet only when I was too ill to write, too busy to, or there was little change so little to share.

This time it's been a bit different. My long silence hasn't really been entirely for any of those reasons. The truth is that I needed some time and space to process things and understand things privately. When I received my first chronic illness diagnosis, it was many months before I talked openly about it with anyone; this time I was having to have daily discussions with doctors for months and was having to communicate with lots of different people fairly constantly. I couldn't, and didn't want to, hide my illness in the same way as I did back in 2010, but there were certain elements that I didn't want to share publicly/openly. I wanted the privacy to come to terms with my new reality first.

6 months on, I'm ready to explain to you all.

I hope my silence hasn't led to undue concern. Things are bad, yes, and at times my life did seem to be in danger, but now it isn't in real danger, I'm 'just' trying to regain my quality of life and abilities.

It's hard to know where to start. It's all very complicated. I suppose the obvious place to start is the beginning.

On the 7th of October 2015 I was taken ill while at university. I had one of my support workers and some members of uni staff with me. I'd felt dizzy so asked to lie down. Normally, if this was hypotension related, lying down would lead to immediate relief. It didn't. I felt weird. I couldn't really describe it, but it felt strange, and I had been too generally well for dizziness lying down to be for the reasons that are normal for me. I decided I wasn't going to be able to stay in uni and was going to need to go back to my room, but wasn't sure how I was going to get back. I then started to get some involuntary movements. These have happened in the past after I've passed out, but given that I hadn't passed out completely, this was abnormal. The involuntary movements and muscle spasms continued. I started to get concerned. The people with me were trying to ascertain what was normal for me and what wasn't. I was being a bit evasive as I thought people would panic if I admitted it was all abnormal, I hoped it would just pass, and I was keen not to get rushed off in an ambulance. Then things took a turn for the worse- I realised I couldn't move my legs. By this point I realised things were really not right. I couldn't hide my concern. Unfortunately I was struggling to get any words out, so was having to mostly communicate by nodding or shaking my head. I'm not sure of the exact order of things, it's all a bit hazy, but at some point I lost any ability to move or communicate, and they had no idea whether I was conscious or not. An ambulance was called and quickly arrived.

I think I had my eyes open when the paramedics arrived, at least some of the time anyway, but couldn't really communicate with them. I was manhandled onto their stretcher, they took me out to the ambulance, and ran a couple of tests (obs, blood glucose, ECG). They took me to the hospital and left me in a corridor, giving instructions to the people with me to let staff know if things got worse/the 'spasms' started getting more frequent.

A little while passed. Not ages, but long enough that I was concerned because things did seem to be deteriorating. By this point my jaw was seizing shut at times and would only ease back open with some deep massage of the muscles. I was also struggling with dizziness and nausea on and off, so the people with me were having to sit the bed up each time I felt sick and then lie me back down when I went dizzy. It kept them busy! I was starting to get exhausted. The spasms were wrecking my body. I was starting to feel really unwell. A lot of the time my arms were now also affected, leaving me with absolutely no voluntary movement of my body.

A nurse assessed me and shortly after that I was taken into Resus. I was closely looked after by a consultant and other staff. They were very attentive, which meant people coming at me from every angle at times. I was cannulated, I was put on monitoring equipment, and was on oxygen some of the time. My pluse was erratic, I was getting a lot of palpitations, and I had a significant temperature. I stopped breathing a few times and I think at one point I was seconds off being intubated, but thankfully that particular attack came to an end while someone was getting a piece of equipment. I was lucky. The episodes were gruelling, and only seemed to get more severe and more frequent. I was then given some medication intravenously to hopefully bring them to an end. I got a blissful reprieve lasting about 40 minutes. The medication helped, but the episodes continued, although they never again became quite so frequent thankfully! 

I think it was around this time that I was taken for a chest X-Ray and head CT. I think this was possibly the first time I encountered a PATslide (a hard board that they slide immobile patients on to transfer them between beds). Being slid on those things is horrible- you feel so out of control and it's uncomfortably hard. Now, it's not something that would phase me particularly, having experienced it many times, but that day all those new experiences seemed difficult.

I think I went from X-Ray onto the Acute Assessment/Admissions Unit (AAU) 'close monitoring'. I find that name quite laughable because it's the place in the hospital where the staff are most over-worked and you're most likely to get over-looked. The staff did their best, and this isn't a criticism of them, but I really felt for them. All the patients there are acutely and fairly severely unwell- there are so many things needing their attention, and they're constantly trying to prioritise those most urgent.

My parents arrived that evening and it was so lovely to see them. Initially I didn't want my family to be informed, and then I said there was no need for them to come, and then the Resus consultant spoke to them and told them he thought they should. I'm glad he did. My support worker and a member of uni staff stayed with me until they arrived, so I was never alone and their company made the day so much easier and less frightening- they were incredible, but to see my family at the end of such a difficult day was very comforting.

That night I felt ill. I was aware how dire my current medical situation was, but it felt surreal. I was still having occasional attacks (every hour or 2), was still feeling very unwell, and had no mobility (even to move myself in bed). I was still on continuous monitoring so the idea of me getting any sleep was laughable- I had a blood pressure cuff inflating about every 15 minutes, other monitoring equipment attached, a cannula, and machines constantly bleeping and frequently alarming about my pulse, blood pressure and/or oxygen saturation. A lot of the night I was still on the close monitoring area with someone next to me confused, screaming, and repeatedly escaping from her bed. There was a constant stream of patients arriving and leaving. It was disheartening when it was never me deemed stable enough to move on. I had a few more attacks, pressed my buzzer, but by the time anyone came to answer it, it had come to an end and I couldn't reply when they asked what was wrong, so they cancelled my buzzer and moved on. Someone did come over at one point when I stopped breathing and my oxygen alarm went off, so I spent a chunk of the night with an oxygen mask on, which made sleep even less likely.

I was eventually moved on to a side bay, still within AAU. There were 6 beds, including 3 on continuous monitoring- 1 of which was me. It was a little better than close monitoring as there were not quite so many machines bleeping and alarms being set off, but given that my machines were the most disruptive to me, that didn't improve much. I hated AAU- it's a chaotic, non-stop environment, and at times both the people on either side of me were literally dying. I just lay there hoping they'd fix me so I could leave soon!

The next day my symptoms were pretty overwhelming and I had a stream of people coming to assess me (doctors of different seniority from both emergency medicine and neurology I think). They seemed almost entirely focused on the episodes of severe muscle contraction, which were a massive issue, but probably my 3 main concerns were my lack of movement, my jaw being now-continuously locked shut (meaning no food/drink or regular medications!) and my now very low blood pressure. They were coming and voicing their opinion about whether I was experiencing a medication-related problem, or non-epileptic seizures. I'd then attempt to point out the things that were more pressing from my perspective (trying to communicate with a locked jaw is hard..). Different doctors voiced concern about various regular medications I was on, and particular interactions they thought could be implicated. At this point, I wasn't receiving any of these medications because my jaw was stuck completely shut due to trismus, and most weren't available in liquid or intravenous forms, so it seemed academic. I wanted to know what they were going to do to release my jaw, and when I was going to be given some IV fluids (because I felt constantly on the verge of passing out and was having to lie completely flat/with my feet raised a majority of the time). Some of the doctors were fabulous- they explained things fully to me, explained their thoughts, agreed to give me various intravenous medications to try to stabilise me etc etc. It was one of those days that was a complete blur. My parents and I were watching my blood pressure on the monitor each time the cuff blew up, concerned by the numbers. Nurses were too busy to get my IVs put up. Doctors were coming back to check medication had worked before I'd even been started on it. It was awful. The best part of the day was when I was hallucinating on a cocktail of IV lorazepam with IV cyclizene- that was surprisingly fun, and a nice break from the terrifying reality!

That second night was the absolute worst. By this point I was exhausted, I was feeling deathly, I was seriously suffering the lack of my regular medications, and I was continuing to get no sleep. That night is one that haunts me. I had an episode that was particularly bad. A fellow patient, who was awaiting a heart transplant, rushed over to me. Nurses were quickly summoned, who quickly summoned a doctor. I will always remember that doctor, with his strong Scottish accent, calling out to me, and inflicting pain repeatedly, trying every possible way to get me to respond in some way. I was fully aware. I heard him talking to me. I felt the pain intensely. But I could do nothing to respond to him. I had no voluntary movement. I couldn't move my eyes. I couldn't speak. It was scary but surreal- it seemed like a really bad dream.. I felt so ill that death seemed a distinct possibility, although I think the possibility of much-increased pain and suffering and severe disability probably scared me more.

The next day I had electrodes waxed to my scalp for an EEG (to rule out epilepsy). I had some more doctors prod and poke me. I had some staff try to give me a bed bath, but I went straight into a seizure. They manhandled me into a new hospital gown, washed my hands and face, rolled me around to change the sheet, and then left me to recover. Those times of feeling completely out of control were hard. A lot of the day I was left alone with my parents and friends. Not a lot seemed to be happening. I was waiting for a bed on a ward, which became available that evening.

Arriving on the ward was such a welcome change. The staff had more time for you. There was more time to be caring, so I felt less like a bed number, and more like a human. Being on the ward did mean an end to my parents being able to stay with me all day like on AAU, so that was a big change. I was only able to see people from outside the hospital for a maximum of 4 hours each day and had to start relying on staff to a greater extent. I started being allowed to be alone in the bathroom, so got a tiny bit of privacy back. The staff were a bit more willing to accept some risks. In AAU, they wanted me in bed absolutely continuously, whereas on the ward they were happy for me to be taken to the toilet (so no more relying on my mum to sneak me there and back!), I was allowed to be taken for a shower, and I was even allowed and encouraged to sit in the chair by my bed briefly when well enough. I was no longer continuously hooked up to machinery which was nice. I was still being monitored closely, but not continuously, so it made a big difference.

The ward was also better equipped to deal with my level of immobility. They slid me up the bed on slide sheets, or on the actual bed sheet. They were used to transferring very immobile patients onto a chair on wheels with 2 people, one each side- so even early on they were prepared to move me around. They could also hoist me as necessary (normally only needed if I ended up on the floor). As things improved I started getting into a chair with the assistance of only one person, before eventually transferring across independently. I was still occasionally hoisted or slid up the bed following seizures, but most of the time I could move myself around in bed (with or without the help of the bars along the bed) and transfer independently. I was still deemed a significant 'falls risk', and had the sides of my bed up basically all the time I was in bed, but I could put these down myself and sit in my chair as and when I wished and felt up to it.

The first morning on the neurology ward, a group of doctors all crowded around my bed to discuss everything. They came to the conclusion that my nausea medication (which I'd been on for around 2 years) was quite possibly to blame. They believed I'd potentially had a dystonic reaction, so I was taken off that medication permanently. They also picked up on an infection so I was put on antibiotics for that. They explained that they believed I'd also developed a Functional Neurological Disorder (FND), possibly triggered by one or both of these things, with non-epileptic seizures (which were the ongoing attacks/episodes) as part of this. At this point they believed my immobility was probably related to my CFS, because my body had been through so much over the last few days. Over time though, it became clear that the immobility was also, at least partially, a direct result of the FND.

What does Functional Neurological Disorder mean? Well, a lot and not much at the same time. It means that my doctors haven't found a structural cause for my problems- my nerves and muscles, according to the tests currently available to them, appear to be fine and non-diseased. At the same time, from examining me clinically, from taking a history and from observing me while I was in hospital, they are very aware that my nervous system is very dysfunctional and I am very debilitated by this. This makes it sound like a diagnosis of exclusion, which isn't intentional, because it isn't really- the diagnosis is a positive one, made because my symptoms were absolutely typical of the disorder in a lot of different ways.

My friend Wikipedia currently describes FND as follows:
Functional Neurological Disorder is a neurological disorder for which very little is currently known. It is an umbrella term for a variety of symptoms which look similar to those caused by neurological conditions such as Multiple Sclerosis (MS) or Parkinson's Disease, including weakness, fatigue and seizures. It is currently believed that Functional Neurological Disorder arises from a problem with the patient's Central Nervous System, which is not sending and receiving signals correctly. The brain of a patient with Functional Neurological Disorder is structurally normal, but functions incorrectly.
Currently, traditional tests and investigations such as blood tests, MRI and CT scans will show no abnormalities in patients with FND; however, it has been discovered that there is a difference in blood flow to certain key areas of the brain when scanned using Functional Magnetic Resonance Imaging (fMRI). Although currently there is no way to 'see' whether a patient has FND, their symptoms are real, and often cause disability and distress to the individual.
It's a pretty good description. The start of my journey with FND has been very difficult- it all started very suddenly for me. Despite my severe level of disability, my emergency head CT and EEG were normal and I'd had a normal head MRI not long before. As is explained by Wikipedia above, the tests currently available to doctors can't pick up on the abnormalities of FND. From my clinical picture though, doctors are very confident that FND is to blame for my difficulties- my symptoms fit perfectly, and don't all fit with anything else.
Fndhope.org lists the main symptoms as:
Bladder and Bowel Changes
Chronic Pain
Cognitive Changes
Gait & Balance Problems
Headaches & Migraines
Involuntary Movements
Paralysis & Weakness
Seizures
Sensory Changes
Sleep Disturbances
Speech Problems
Visual Changes
You can see that there are many symptoms and I have, or have had, all of the above, to varying extents. Admittedly some of the symptoms are due to/have been attributed to pre-existing conditions. I don't think any of them are actually unheard of in severe ME.
FND is a confusing area in medicine. It's an umbrella term and although it's my main new diagnosis, other sort-of additional diagnoses have also been discussed with me:
  • Non Epileptic Attack Disorder/Non Epileptic Seizures/Dissociative Seizures
  • Functional Movement Disoder/Functional Dystonia/Functional Myoclonus
  • Functional Weakness/Functional Paralysis etc
FND had been discussed with me when I was referred to a neurologist regarding my acquired stammer, so when they started discussing it with me in hospital, I had a bit of a head-start. A member of my family also has symptoms similar to mine, so I had some understanding because of that too. They start saying to you that it's like a computer that stops working, and all the different hardware parts seem to be working individually, but you're still getting error messages; there are problems with the messages and the way it functions as a system together. They explain that they know the symptoms are real and involuntary/not under your conscious control (when they pinch you hard while you're blanked out and you don't even flinch- they're pretty confident on that one!), and they appreciate the disability they're causing, but they can't find any signs of damage or disease- it seems to be a problem with the messages and functioning.

The Functional Movement Disorder element of my condition means my brain is unable to maintain full control over my body- there's a disconnect between what my brain tries to get my body to do and what my body does. Automatic movements are unaffected, but as soon as I try to purposefully control movement, there's a problem. Initially it was like my body was doing the exact opposite of what I attempted to do. It was like trying to control the mirror image of myself. If I tried to tap my toe, my heel raised. If I tried to move my hand up, it'd go down. If I tried to tap my hand in a regular rhythm, it'd be uneven. It was the most bizarre thing I'd ever experienced. My hands were also affected by functional dystonia at times in hospital, so I had constantly tightly clenched fists for many hours at a time, which was very painful.

Despite not really being 'heard of', it's not exactly rare- it accounts for a significant chunk (some places say 1/3rd!) of patients referred to neurology clinics. It's the second most common diagnosis in movement disorder clinics. 50% of patients seen at epilepsy centres for prolonged seizures end up with a diagnosis of functional/non-epileptic seizures. A lot of epileptic patients also have this type of seizure. Cases like mine with so many symptoms that are (/were) so severe are thankfully rare, but masses of patients have one or more functional neurological symptoms, whether it's their primary diagnosis or alongside another neurological/general medical condition.

It's an area in need of much more attention and research!! There are a lot of gaps in knowledge about this disorder, but significant progress has been made (even information from a few years ago is now very obviously outdated!) and significant progress continues to be being made. Quite a lot of recent research/improvements in understanding have proven past theories wrong/too simplistic (particularly in terms of the overemphasis of the role of psychological difficulties and distress), rather than moving forward understanding of/narrowing down what the actual problem is massively, but certainly new scanning techniques are showing real promise and giving interesting results.. In the UK we're lucky to have 2 leading clinicians, researchers and specialists: Dr Jon Stone (Edinburgh) and Professor Mark Edwards (London). They're trying hard to get the condition the attention and services it deserves (and succeeding to an extent!). Unfortunately services remain very patchy currently, it's easy to fall into the gaps between services, and easy to find yourself needing help that isn't 'commissioned' (paid for) in your area. I found that I couldn't access the specialist dissociative/non-epileptic seizure neuropsychology service fully because of my postcode. I found that the neurorehabilitation hospital rejected me for inpatient rehabilitation because they don't have commissioning for FND patients. I did eventually get the ideal team around me in hospital- I got to see the dissociative seizure neuropsychologist for some sessions, I saw neurophysiotherapists each day (including one with a specialist interest in FND), I saw a consultant neurologist almost every day, and they even contacted Dr Jon Stone to see whether he had further advice- and yet progress was still slow, and I remain very debilitated. There isn't an answer for everyone with this condition at the moment- there are still some avenues to explore in my case, and things are significantly better than they were initially, but it's true that many patients are severely debilitated long-term, and their symptoms are a challenge for them to live with, and it's challenging for neurologists/other team members to know how to help/support these people.

What confuses the situation further in my case is that we don't know to what extent my pre-existing conditions are impacting my situation. I used to have problems standing because of my Neurally Mediated Hypotension and now standing is triggering seizures- we don't know whether this is partially because of my NMH. After a seizure, I have a period of severe weakness/paralysis- we don't know whether this is as a result of my ME/CFS or the FND or both. My CFS consultant thinks that if I didn't have CFS, I'd quite possibly be able to get up and walk off after a seizure. So, bare in mind that my difficulties aren't FND in isolation- things would be a lot more straightforward in a way if they were..

Long-term stress on my body caused by chronic pain and chronic fatigue, both of which were difficult to control/manage over a number of years, seems an important element as to why this has all come about- they're likely to have made me more susceptible. Either that or they were the early signs that things were getting dysregulated, and this has simply escalated.. Life stresses are also likely to have been a contributing factor, and genetics seems an important factor too, as another member of my family has similar symptoms due to the same disorder. It's hard to say for definite though, as current understanding of the causes and risk factors of FND is sketchy..

After receiving my new diagnoses, and initial explanations, this is when my rehabilitation began and I started to have daily physiotherapy sessions, but unfortunately these triggered a lot of symptoms. I was having functional seizures very frequently and these were worsening my functional neurological disorder generally, in particular the functional movement disorder element, as well as causing problems with my ME/CFS.

I really struggled at times with my ME/CFS symptoms in hospital- particularly with sensory overload. We also had very significant difficulties trying to get my nausea under control. My weight was getting dangerously low again and I wasn't managing to eat. The cyclizene I was put on when my long-term nausea medication was stopped wasn't controlling things sufficiently. Eventually we found a medication that works really well for me, we started winning that particular battle, and my weight increased (and is still increasing..).

My time in hospital was hard- physically and mentally. Some days were amazing- regaining abilities is exciting and makes you feel positive and optimistic about your recovery. I vividly remember standing myself up without help for the first time, managing to take my first supported steps with the help of my physio, managing to walk along between the parallel bars without the help of anyone, then walking along gradually holding on less, before finally managing to walk the (admittedly short) length of the parallel bars not holding on at all.. When things are going well, it's an incredible feeling. All the time you're moving forward and things are improving, the challenging symptoms are bearable. Pain flares resulting from physio can be tolerated all the time you can see that it's leading to progress. But set-backs are incredibly difficult, and I had many. There was only one day in hospital that I took any completely independent steps, and within hours of taking them, I had a seizure and lost the ability to even stand myself up without help again. That was early in my hospitalisation, and I never got back even close to that. By the time I was discharged, I couldn't stand at all without triggering a seizure. Some set-backs were caused by pushing too hard with physio. Some were inexplicable. Some were caused by a change in medication that left my body struggling. But all were difficult- it's hard to dust yourself off and just keep trying when you're in an environment that you're desperate to escape from and the stakes are high. And then the expectations of the staff around me started to be lowered, and that was hard too. Originally everyone's aim was for me to leave with the same level of mobility I had on the morning before my health crisis occurred, and the expectation was that this would be possible in a matter of days/a week. Multiple times I got given a date I'd be discharged, with the expectation that enough progress would have been made, but each time it didn't happen. Sights gradually had to be lowered, and the weeks ticked by.

The physiotherapists who worked with me were incredible, motivational, lovely people, who I felt truly wanted me to succeed and regain my mobility, and they did all they could to help me, but my body simply wasn't well enough. They spent a lot of time with me- mostly with me unresponsive following seizures- and although their work with me triggered a lot of utterly horrendous symptoms, and ultimately didn't lead to massively improved function, I somehow got to really like and respect them, and admire their work. At times, the bits of physio before I started seizing were actually quite fun, and I really appreciated all their efforts with me. I also appreciated the way they respected me, at times advocated for me, and appreciated their emotional support on the truly awful days. I'd say the physios got to know me much better than any other members of the team; they certainly spent much more time with me. I spent a lot of time leaning on them/collapsed against them, and often had to basically hug them so they could manhandle me back into bed, so we certainly got up close and personal! One physio even arranged a few things that made my time in hospital far more bearable- they're some of the only really happy memories I have of those weeks. The role of a physio is much wider, and has a much greater impact, than I would've thought prior to my hospitalisation. Sometimes they push you hard, perhaps they pushed me too hard at times initially in retrospect, but it's always with the very best of intentions. I saw them get really incredible results with some people.

Eventually I was discharged after almost 10 weeks in hospital, having made progress in some ways, but still having some functional seizures, unable to stand/walk at all because of these (so full-time wheelchair user), with some weakness, still having paralysis following any seizures, having some migraine-like headaches, and still with limited control of my movement. It really wasn't the state I anticipated being discharged in, but by then I wasn't making any real progress in hospital, so needed to try and see whether things were manageable out of hospital, and whether symptoms would improve in the outside world, in a more normal environment.

Things haven't changed massively since then really in terms of my physical health, although in some ways things have improved/stabilised. My Functional Movement Disorder has definitely become milder, although at times it's still evident. I haven't been having physio, so am still using a wheelchair full-time at the moment, but this has meant a reduction in seizures and the symptoms that result from them. I've also been working with a neuropsychologist on seizure strategies and have made some good progress, so that has also reduced the frequency of my seizures, and I believe I am, at times, managing to prevent some seizures.

The actual non-epileptic seizures themselves are a mechanism that gets triggered if my body gets overwhelmed by physical or psychological demands- they believe it's a failure in the balance between my sympathetic and parasympathetic nervous systems, and my ability to regulate my level of alertness malfunctions. People who have experienced incredibly severe pain sometimes talk about looking down on themselves and what was happening- they think it's actually pretty much the same mechanism as that, just a different experience and outward signs. While in hospital, most were triggered by physiotherapy due to the effort/pain/standing involved, or by eating (because digestion is an extra demand on the body system, plus using cutlery was a challenge), but at the moment (particularly because I'm not currently having physio) most are actually being triggered by psychological difficulties.

My time in hospital has left me with some very difficult memories, as have a few planned/unplanned trips back since, and these have caused a trauma response. While I was in hospital I was actually emotionally fairly numb and didn't struggle psychologically at all, but things have hit me hard since about a month after discharge. My brain protected me from the psychological battles until my physical health was less all-consuming, but now it's trying to process things. My experiences have resulted in a lot of symptoms indicative of Post-Traumatic Stress Disorder (hyper-vigilance (I'm jumpy), sleep disturbance (I struggle to settle down and go to sleep), avoidance (I can't watch any hospital-related shows and am incredibly uncomfortable in hospitals), re-experiencing (I have intrusive memories and get a lot of palpitations and panic-type symptoms) etc..). I read something that said PTSD often happens when a life-threatening event shatters your sense of safety; I think that's the best description I've read. Symptoms are fluctuating, but I'm going to need some psychological help to get over this. I'm sure I will with time and help though. Until then, please don't make me talk about details of my time in hospital that could be difficult for me. Putting me in a situation where I have to talk about traumatic memories could actually cause me to go into a seizure. By all means give me opportunities to open up to you if I wish, but don't corner me into talking about specific things/interrogate me.. And please take me very seriously when I say I can't watch hospital/medical-based TV programmes and I don't want to hear details of acute medical situations at the moment. In time, these things won't matter I'm sure, but for now, please check with me, or just avoid!

I had limited sessions with my neuropsychologist, but she worked with me through a lot of my time in hospital and during the period when my Post-Traumatic Stress symptoms developed, so luckily she's been able to help me understand these symptoms in addition to working with me on strategies to help me manage my seizures. She's helped me develop techniques to try to manage my anxiety and other symptoms. Her input has been invaluable in helping me to cope with, and understand, my symptoms day-to-day. She's now referred me on for help with my ongoing psychological difficulties resulting from distressing hospital experiences, but I really appreciate all she has helped me with.

A lot has happened and changed since this health crisis came about 6 months ago. I've learned ways around new symptoms, I've found ways to be surprisingly independent, I've developed greater understanding of my disorders and the reasons for them, I've made new friends and got closer to old ones. But it's been a nightmare, undoubtedly, and I'm still struggling with a lot of difficult symptoms, and fear of symptoms. I currently live knowing a seizure could happen with practically no warning at any second. I know that if I get rushed into hospital and they aren't aware of my existing diagnosis, or don't understand it, I could get put into an induced coma on life-support if they deem me to be in Status Epilepticus (which wouldn't be the case as I'm not epileptic)- and the consequences of this could be potentially fatal (this was stressed to me in hospital- please avoid rushing me to A&E!). I know I'm at risk of ending up back in the emergency department and being treated in ways that are traumatic for me. Hospital is currently a very challenging place for me mentally, and I don't cope well with appointments, even with consultants I know very well and trust, but I have multiple chronic conditions, so hospital appointments are necessary. I live never knowing whether tomorrow will be a good day or a bad day. I don't know whether I'll recover and/or walk again. I'm living a life on wheels full-time, trying to work out ways of coping with life sat down, trying to redevelop skills in spite of my movement disorder. Every day I have to self propel and transfer using my arms, whether or not my arms are screaming at me. My consultant questions whether it's the right choice, because I'm functioning well from a chair and physio was fairly disastrous in hospital, but I'm keen to start the process of learning to walk again soon. The ability to stand and take some steps matters to me. I am also going through the process of obtaining my own wheelchair though, as I know this won't happen overnight (and despite the fact I haven't taken a normal step in 6 months, I'm currently still borrowing my mum's friend's!)

I've been fighting all sorts of systems since discharge.. I was promised reablement care 4x/day on my return to my university city (after staying with my parents for a while over Christmas) to help me re-learn the skills to be independent with my new level of disability. It was all meant to be set up and then no-one arrived on the day it was meant to start, and a whole series of excuses was made about why I couldn't have reablement. So I was left having to request standard social care from a long-term care provider. I waited weeks and weeks with no progress towards actually seeing a carer. Meanwhile I was (/am) relying on friends and monitoring by my parents from a distance. Thankfully I found ways to do things for myself (my accommodation is fully adapted which made it possible). There are things I couldn't/can't do alone safely (like pour a kettle), so I just have to not do them. I live in uni accommodation and for reasons I can understand, they're very concerned about safety risks and aren't happy for me to stay without regular formal care in place. Care from social services still wasn't forthcoming so I started approaching private agencies (which are expensive!). Then I was finally offered reablement, but I was leaving for Easter, so the referral had to be put through again on my return, and has now been rejected again due to 'lack of capacity'. Social care is in serious crisis, and I'm not sure people are taking notice..

I'm also considering moving back in with my parents for a while though, as there was an incident in hospital a few weeks back (that ended up a police matter and is currently being investigated by the hospital internally) which has made me even more anxious about ending up back in hospital. I had a seizure and fell out of my wheelchair following an outpatient appointment, was hoisted off the floor of the waiting area, and eventually ended up back in Resus, which was traumatic for many reasons. In my accommodation I have emergency pull cords to get security to come to me if I have a fall/seizure, but they can't promise not to call an ambulance if they find me unresponsive. An ambulance is likely to result in a trip to A&E as my seizures are now going on for hours without recovery to an extent that I can communicate (last 4 have been upwards of 2 hours, the longest being 8..). If I end up being repeatedly re-traumatised by trips to hospital, it's going to complicate recovery from my Post-Traumatic Stress symptoms, so it has to be a consideration..

If I move back home, it solves the problem of social care. It could complicate what happens in terms of the process to obtain a wheelchair that is ongoing in my university city though (you'd think getting a wheelchair as someone who can't stand would be fairly straightforward, but I've been sent in a complete circle and then back round the other way by 3 different services, before a referral finally reaching wheelchair services.. I got promised an interim wheelchair by one OT, but that also never materialised.. I have been assessed and a wheelchair is being ordered now though, so progress!). It could also mess up what happens in terms of remaining under the care of my long-term medical consultants there. It's therefore a tough decision. I've now ordered some equipment to get me upstairs at home though, so that should make a big difference to how accessible home is for me, as it will give me back access to my room and the bathroom.

I was hoping I'd get back walking a bit and able to get myself up the stairs again in the short term, but that's now not looking particularly likely. In hospital, physio didn't go to plan at all. As well as triggering ridiculous numbers of seizures, I was also incredibly wobbly and had little control of my legs. Trying to get all the weight onto one leg and move the other forward was a monumental struggle, even with one physio holding each arm. Just learning how to stand up was very difficult, when for decades I hadn't had to consider how to stand up. The muscles used for walking are also likely to have weakened during the 6 months I've been off my feet. And whereas when I first ended up in hospital, physios were saying that I had the advantage of still having a lot of muscle memory as I could walk a matter of days/a few weeks ago, that's no longer on my side. When I was first in hospital, there was the reassurance that my muscles did have the ability to hold me up, if I could gain control, but I'm not sure that ability remains. The last few times I was stood up in hospital, the seizures triggered were particularly vicious, standing was painful, and I was shaking because my muscles were struggling massively to hold me. Having had so many weeks of attempting to get back on my feet and the effects being horrific, I think I now also have a mental barrier to get over, as I'm naturally going to be fearful of standing because of past associations, which is only going to make seizures more likely to result. It's difficult. But full-time wheelchair use is also incredibly challenging for me, so it's important to me to get some upright mobility back. I don't need to be able to run marathons, I just need some mobility so the inacessible world we live in isn't quite such a massive barrier for me.

The good thing about my diagnosis being FND is that there is the theoretical potential to make a full recovery, as there is no actual proven damage to the nervous system. That's not to say all, or even most, make a full recovery. But it's still very nice that there is that possibility and gives me hope.
About 'the future' FNDhope.org says:
"With current treatment about 60% of people with FND say that their symptoms have improved. This is not to say that all these people are “better”, and it is very important to have reasonable expectations regarding treatment. This means that many people with FND need long term help with their symptoms in the same way as many with neurological illness do. However with help many people are able to get back to leading a much more normal life and though they may have continued symptoms, these are more in the background than they used to be."

What am I hoping for? Well, I know becoming 100% healthy isn't realistic, particularly with my other pre-existing conditions, but I hope to get back to where I was before I was hospitalised in terms of being able to live independently, seizure-free, able to attend uni, and able to walk up to about 20 metres. It's optimistic, but not out of the question. Some of my medical team (thankfully the ones I'll be continuing to see!) seem fairly confident this is a possiblility, others were very much more doubtful. Time will tell, but it's still early days, so although I've had to resign myself to a longer timeframe, I'm not ready to lower my sights just yet- it's my quality of life at stake after all!

No-one can tell me what sort of degree of recovery to expect; nobody knew whether I'd even improve to the extent I have. Nobody in hospital had come across a case quite like mine, so it's been hard for them to give me an idea of prognosis. While I hoped for a more complete recovery by now, things are significantly better than they could be. I don't know whether I'll get back to uni in September to complete my course- my health will have to have improved a lot in a number of ways for that to be possible. There's certainly still hope of being able to though- there's still time. Facing the distinct possibility of having to change direction in terms of career is terrifying, but worrying about it is only going to make it more likely, so I just have to see how things go and hope for the best. Maximising my quality of life and learning to live with my new symptoms has to be the priority right now. I mostly just have to rely on my body to heal itself the best it can, as I have had to do on a number of occasions in the past. Pacing myself and being kind to myself is vitally important right now, as well as seeking out and accepting help from everywhere and everyone possible. I need to learn to work with my body, rather than punishing it and treating it as the enemy. For years I've pushed through and ignored significant symptoms, and that's only likely to have led to increased dysregulation in my body systems, and seems to have potentially been a contributing factor to my body failing the way it has.. I can't dwell on the way I've managed things in the past though- I just need to learn from it and try not to make the same mistakes in the future!

Apologies for the length of this post, but I decided now that I've decided to put you all in the picture, it makes sense to give you the full picture. There's probably still important things I've missed, as it's all incredibly complex, but it's a start! If you've got this far then well done and thank you for your interest. If anyone has any questions then do feel free to ask, and I'll answer the best I can. I'm honestly so grateful for everyone's support and interest in my wellbeing. I very genuinely don't know how I'd have got through the immense challenges of the last 6 months without such amazing people around me!


18 comments:

  1. Thanks for sharing. It can help others in so many ways.

    ReplyDelete
    Replies
    1. Thank you :) That's really good to hear ☺️

      Delete
  2. Thanks for writing such a detailed informative blog. It sounds very difficult and overwhelming but your courage and determination shine through very clearly, I hope things will improve more for you soon, best wishes, Jo

    ReplyDelete
    Replies
    1. Thank you so so much for your kind comment- it means a lot :)

      Delete
  3. What a horrific thing to go through (as if the m.e. hadn't been enough already!) I'd been worried that you hadn't been posting as much as normal, but hoped it meant you were getting better. I know that I can't wish you well but I can least wish you better and admire your courage in coping with all that you have. Good luck, gentle hugs and thankyou for sharing. 8>)

    ReplyDelete
    Replies
    1. Haha- tell me about it! 🙈 Thanks for your concern and for your kind comment- it really is appreciated!

      Delete
  4. Well, I was going to read my book but your blog post is sufficient :)
    I too was concerned as you were not posting as frequently. I've got mixed emotions right now as my late wife had many of your symptoms, especially the Functional Movement Disorder.
    A lot of her symptoms were probably caused by the Herpes Simplex disseminated thru her body,eventually eating her brain and causing the stroke like "events".
    At 54 years old my wife decided not to continue suffering any longer and she took her life after 20 years with Myalgic Encephalomyelitis. If I had your symptoms I wouldn't want to live any longer.
    I don't understand how you can keep fighting and going on the way you do. You are a brave and courageous woman.
    I'm wondering, are you the same Jessica I'm friends with on Facebook?
    Love and light xx

    ReplyDelete
    Replies
    1. Yep- it's not a short one!
      I'm so sorry Char had such awful symptoms that she was driven to that, and I'm sorry you lost her in such awful circumstances..
      Thank you- I appreciate it. Life is hard right now, and seems overwhelming at times I admit, but I hold onto hope that things will improve, and whether they do or they don't, I'll try to do all I can to maximise my quality of life.
      No, that's not me- quite possibly Jessica Taylor from 'world of one room'- we've been through some similar stuff :) We do follow one another on Twitter though (I'm @Jess_ME_CFS, although I may change this soon in light of all my other diagnoses!
      Take care x

      Delete
  5. can you e.mail me if you get this

    mark

    ReplyDelete
    Replies
    1. Hi mark- can you reply with your email address just so I definitely contact the right person :) I won't moderate it through.. Thanks

      Delete
  6. I had never heard of FND before your post. It sounds like you have been through a lot these past months! It's always scary getting a new diagnosis, even if it means better treatment....at least that's how I feel about it. Thanks for sharing your story.
    -A Southern Celiac

    ReplyDelete
    Replies
    1. Thanks for your kind comment :) For a condition that's really not at all rare, I've found it's incredibly unheard of! Hopefully my little corner of the Internet will do a bit to raise some awareness.. I think a diagnosis is always tricky to get your head around, and I didn't have the long wait with symptoms waiting and hoping for a diagnosis that sometimes softens the blow.. But I'm getting there with it, and given the severity of my symptoms, the diagnosis could've been worse..
      Thanks again for taking the time to read and comment x

      Delete
  7. I also have ME & FND (as well as numerous other diagnosis) and find it tell which one is causing which of my symptoms.

    Regarding being worried about an ambulance being called in the future, have you considered a piece of medical alert jewellery which could inform paramedics, doctors etc of your situation if you're unable to speak for yourself?

    Molly

    ReplyDelete
    Replies
    1. It's interesting to hear that you have both ME and FND too, although sorry you're having to deal with them!
      Thanks very much for the suggestion ☺️ I've actually recently got a medical alert band printed with my info, which I'm wearing constantly- gives me some peace of mind!
      Thanks again for commenting- it's nice to know I'm not alone in dealing with these conditions x

      Delete
  8. Awh, Jess! It's so hard but you're doing so well! I have ME too and reading your blog is amazing at the minute - it helps to know there's so many others out there!

    Keep up the fight!

    Love, Cat xxx

    Cat's Recovery Journey

    ReplyDelete
    Replies
    1. Thanks so much Cat- that means a lot! ☺️ Gentle hugs xx

      Delete
  9. Jess, you have been through so much. Hang in there cos things will get better. Is continuing with uni the right thing?...it will still be there in a year, 2yrs/3yrs should you take time out to really focus on getting better. I wish you all the best :)

    ReplyDelete
    Replies
    1. Thanks :) No idea- I've suspended studies for now and then will see where things stand as September approaches.. A difficult decision for sure.. Thanks for your kind comment :) x

      Delete