Tuesday, 21 June 2016

Focusing on the CANs not the CAN'Ts

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!🌧⛈⛅️☀️🌈


Sunday, 22 May 2016

Mental Health Awareness Week

This week has been mental health awareness week, and, having had my own battles against mental ill-health this year, I didn't want to let it pass by unnoticed. This time last year, I couldn't speak about mental illness from personal experience, but now- unfortunately- I can, having been through an episode of depression almost a year ago, struggled with anxiety, and having most recently developed Post-Traumatic Stress.

There is still a stigma associated with mental illness, yet it affects so many people. It scares me that so many people don't get the help and support they desperately need, because they're scared of judgement.

I remember when I first had a major struggle with my mental health, just under a year ago. It was terrifying, but it was also terrifying to let people in. My depressive episode convinced me that people would think less of me if I let them see that I was falling apart.

It's simply not true.

The people who really care about you will do their best to support you through. That doesn't mean they'll always handle things perfectly, and mental health problems can cause some friction in relationships, but don't let the fear of people's reactions prevent you from getting the emotional support you need and deserve. People are more likely to be understanding of your behaviour if they know about your struggle.

I battled depression and anxiety for a few incredibly difficult months. My doctors and the other professionals around me were incredible throughout. They were very supportive and understanding, and I never once felt judged. When it's the first time it has affected you, it's easy to feel like it's some strange experience that's impossible for others to understand. I couldn't understand why I was suddenly crying so much about circumstances that hadn't changed, I couldn't understand why everything felt overwhelming to the extent that I struggled to get out of bed, so I thought no-one else would understand either. The truth is that doctors see these problems all the time. There are constantly so many people going through the same.

1 in 4 experience a mental health problem each year. 1 in 3 experience a mental health difficulty in their lifetime.

The other difficulty I want to mention is Post-Traumatic Stress. It affects 7-8% of people in their lifetime. It's not something that only affects people returning from war. It can happen to anyone.

Medical situations are not the most common cause, but they are certainly not an uncommon cause. It came as a shock to me when my symptoms started to emerge, because I didn't even consider that it was a possibility! In reality, some of my experiences were the perfect recipe, unfortunately (I was out of control of what was happening to me, pain was being inflicted, and I was fearing for my life..). What I was unaware of, was that any very difficult experience can cause it, and the affect can be accumulative. It's not 1 isolated event that caused my post-traumatic stress, it was lots of things that happened.

I'm not struggling to the same extent I was at one point, but it's still a daily battle. My anxiety level is still difficult. I don't get the full-blown 'flashbacks' that many people talk of with PTSD, because I have no way of visualising anything in my head (never have done)- thank goodness!! I do have intrusive memories though, and these strike me out the blue and can be really quite distressing. I'm also still a bit hyper-vigilant/jumpy. I find it difficult to be at ease- I have to constantly occupy my brain/distract myself. I find hospital environments enormously difficult, and there are television programmes I'd love to watch but don't feel mentally able to.

People seem to think people with mental health problems are at risk of being aggressive or out of control. Very few are. I'm at absolutely no risk of lashing out at anyone or being aggressive. My mental health is frightening for me, but there's no reason for anyone else to be frightened by it. PTSD is a normal reaction to an abnormally difficult life experience- everyone is potentially only 1 traumatic experience away from becoming a PTSD sufferer themself.

Mental health problems are hard to admit to, hard to seek help for, and hard to live with. But if you're struggling, please seek help! Please understand that struggling with mental health problems is nothing to be ashamed of. Please understand that if you open up to friends, most friends will stick by you and help you through- they'll think you're worth a bit of time and TLC even if you don't! Please, if you feel yourself slipping and things becoming overwhelming, don't isolate yourself, reach out and get some support in whatever form feels easiest to you- whether that's family, friends, doctors, a counsellor, a psychologist, a Facebook support group, an online forum, Samaritans etc etc. The NHS admittedly does sometimes fail people in terms of mental health, but there are so many ways to get support- if you need it, find one that feels 'safe' to you. If one avenue doesn't work out, try another. Just please don't give up on yourself.

To get over my depressive episode, I needed the input/support of my doctors, my parents, the few friends I let in, a university counsellor, antidepressants and time! But I did come out the other side, although it still lurks (mildly) on the side-lines, and I'm not immune from having down/dark days. I had the support of my neuropsychologist to understand and cope with my Post-Traumatic Stress, but I'll need further help from a professional here to come out the other side of that too. I'm sure I will though- time is a great healer, and psychologists help too! 

Mental health problems can seem so isolating and overwhelming, and it can seem like you're fighting it all alone, but, although you need to want to help yourself to get through it, and it's you who has to battle through and do things to help you cope and recover, overcoming it all can end up a team effort. Please reach out and accept help if you are struggling! I honestly can't emphasise that enough..

If you have a friend who you know is struggling, it can be hard to know what to do.. Encourage them to seek help, cut them some slack, be there for them- even if that's just silently listening (you don't have to solve their problems!), keep in touch (even if you just drop them very brief messages), don't treat them differently (still invite them to things, even if they repeatedly turn invites down), don't tell them to snap out of it/get over it or belittle their struggle, and if you've never struggled yourself- don't judge what you don't understand; you never know when the tables could turn- absolutely no-one is immune.

It's ridiculous how quiet everyone keeps mental health problems, given their prevalence. I can totally understand it though. I wrote a long post about my depression/anxiety in the past but took it down, as I felt too vulnerable. It's hard to put this information out there. But battling mental health difficulties is hard enough, without everyone's silence on the subject making you feel like you're the only one.


Wednesday, 11 May 2016

N:Rem sleep mattress topper tablet system- sponsored post

I have been given this product as part of a product review through the Chronic Illness Bloggers (http://chronicillnessbloggers.com/chronic-illness-bloggers/) network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

When I got the email through offering me the opportunity to receive the N:Rem sleep system comfort changing mattress topper (https://nremsleepsystem.co.uk/topper/to review, I was intrigued. It's an interesting product and concept, and not one I'd come across previously.

It's a mattress topper but comes in pieces/tablets with differing levels of softness, so you can put these together in an order that suits you. Each piece is made of reflex foam of varying densities. You get 2 super soft, 1 soft, 1 medium, and 1 firm (easily identified by their colour), which together will cover the length of the bed. The idea is that you can use the softer ones for painful areas, and firmer ones for areas needing greater support. You can re-order them whenever you need to (if a different area becomes particularly painful), and if you share your bed, a partner can have their own set on their side of the bed, with an order that suits them and their body. It gives you options and flexibility. With chronic pain, things change, and it can be a case of trial and error to find what works for you, so this flexibility appealed.

I get a lot of hip and rib pain in particular, so this was an idea that really appealed to me. The thought that I might be able to reduce pressure on body parts that are particularly painful was enticing. Anyone who deals with chronic pain will know that getting comfortable in bed is a huge struggle. Painsomnia (inability to sleep due to pain) is a problem many of us face on a regular basis. My hopes were therefore high, although, having lived with pain for many years, I knew I also needed to remain realistic.

When I opened the box, the smell of foam was quite strong (as you'd expect), so I left them to air for a while before use. This did go after a few days.

You place the different density tablets on top of your existing mattress. For those of you who are fellow wheelchair users, it's worth considering the fact that this obviously raises the height of the bed, so could affect transfers- it's 12cm deep, so not a huge change, but enough to notice- this could obviously be a help or a hindrance, depending on individual situation, just felt it was worth noting.

My mum put them on my bed, with a single fitted sheet around them- this did tend to make them buckle and pop up to begin with, but once she'd managed to get them flat, they did stay flat, and they've not moved at all since then. It's worth considering the fact that the extra height may cause issues with your usual bedding due to the added depth, but there are ways around it. I believe when you actually buy the product, you get a cover to place the foam tablets within too.

My bed was comfortable before, but I can certainly feel the difference. It's much squidgier (for want of a better word!). I have them ordered (from head to toe): firm, super soft, super soft, medium, soft. I get a lot of horrendous pain in my hips and ribs in particular, and this order has suited me really well. I haven't tried other orders (yet), because I haven't felt the need.



I have been feeling more comfortable, and although I do still sit up with my light on for a while when I go to bed each night (until my meds kick in), I don't think I've been kept awake specifically by pain, or certainly only rarely, since having the topper on! The very disturbed nights I have had (because of sleep reversal type problems or anxiety etc), I've been quite comfortable lying in bed. I turn the light off once I feel sleepy, and fairly soon fall to sleep, which is particularly helpful given that lying with my light off, waiting to fall asleep, can be a difficult time for me for various reasons. The shorter that time is, the better!!

When I wake in the morning, I do still sometimes have some joints I need to pop back into position, as has been the case for a long time, and I am still in pain, but my pain isn't through the roof. I can wake up and lie in the same position for a while without my pain getting too awful. That's a big thing for me. It's really nice to start the day without my pain already continuously at an unbearable level.

The extra height has made wheelchair-bed transfers more difficult for me, but I've found the topper beneficial enough that it won't be coming back off!

Is it the cure for my chronic pain? No- it was never going to be. But it DOES mean I can now sleep quite restfully without aggravating my pain, and feel fairly comfortable lying in bed in the morning, which is fabulous!

For further information about the product, please see their website: https://nremsleepsystem.co.uk/topper/ It's not a cheap product, but you can get a free trial to see whether it suits you, and there's the option of a £1 per night payment plan too. I'd say it's definitely worth a look and taking up the free trial if pain or discomfort is causing you real difficulties with your sleep!

If you have a product you'd like me to review, please contact me on Jess.cfs.blog@gmail.com - I'll only ever provide a full and honest review, but if it's a good product, that's nothing to fear 😉

Monday, 2 May 2016

ME/CFS Awareness

Today is 12th May: ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) awareness day. While my ME/CFS isn't believed to be the predominant cause of my current level of disability (that honor goes to FND), CFS is how it all started years ago, and is what has put enormous strain on my body, so awareness of this condition is still something I deem very important, particularly as I now know, and know of, so many amazing individuals affected by this debilitating condition. ME/CFS has had a massive impact on my body over the last 6.5 years, and it still affects me every day.

Chronic Fatigue Syndrome involves a number of different symptoms, all of which can be life-changing. Below I'll detail some of those most common, but there are many more potential symptoms.

Chronic fatigue (the symptom that people always think of) can devastate lives, and leave people living with such little energy that they live with horrendous limitations. It's way more than just tiredness- it's a toxic exhaustion, way beyond the experiences of healthy people's tiredness, that isn't relieved by rest. There are people unable to leave their houses. Some people never leave a single room. Some people are entirely bed-ridden. And then there are many, many more people living a life limited to an extent- they may use a wheelchair some of the time to conserve energy (among many other reasons), they may have to opt out of doing some things they'd love to do to allow them to do others, they may have to push their limits to be able to leave the house but then suffer consequences afterwards.

Payback is a phenomenon that ME/CFS sufferers and their close family/friends know only too well. A sufferer may go beyond their body's limits to do something, but then suffer a horrible symptom flare afterwards as a result. This can be to have an enjoyable day out, or can be something as basic as showering. It all depends on the individual sufferer and their level of severity.

Post-exertional malaise is the cardinal symptom of ME/CFS. It's related to payback, but is more specifically the ill feeling that suffers of this condition get following exertion. This can be caused by any activity that is pushing the limits of the individual sufferer. The only way I can describe it is like the feeling healthy people get when they know they're 'coming down with something', when you feel unwell due to an infection- that's how we feel from doing things.

Pain is also a common payback symptom, but is also something that many of us battle daily. All day, every day. It's draining and demoralising to hurt so much. And people don't appreciate the pain you're going through when you're able to put on a brave face and smile. If you're out and about and smiling, people think you're pain free, which is often not the case. That being said, there are times the pain overwhelms us and we do break down and cry because of its severity, but this is the minority of the time. Pain can be difficult to manage, pills don't always help, or don't relieve it completely, and sometimes doctors are reticent to give out medication strong enough to keep the pain at a bearable level. There are reasons for this, but it can mean pain has a huge impact on quality of life.

I think it's fair to say Quality of Life of some moderately/severely affected patients is fairly appalling. Particularly those that are in the dark and unable to tolerate sound or touch. Sensory sensitivity is something many patients struggle with to varying extents. Being stuck in a bed/room/house, unable to be involved in the outside world, and able to do very little each day, is difficult. Some people cope better than others, some people are dealing with more symptoms than others, some hours/days are better than others, but there are certainly times that sufferers feel desperately in need of a break from their symptoms. The symptoms are oppressive and constant and difficult to constantly live through.

The devastating impact of the condition can have emotional consequences for obvious reasons. There's no break from the relentless struggle. It's hard to watch friends able to do things you can't and living the life you wish you had. It's hard to hurt and have to cope daily with things that most others can't even begin to understand. For some people the emotional consequences lead to mental health difficulties; they develop secondary depression, or develop anxiety about their future. We might seem 'together' and as though we're coping fine, but it really is hard.

We need emotional support, but unfortunately the impact of the condition can lead to isolation. We can seem flaky or unreliable. It's difficult to get us to commit to things, because we never know how we'll feel. Even good friends can drift away as a result. It happens more often than you might think. The fault doesn't lie entirely with the friends though, illness puts huge strain on friendships, and sufferers sometimes struggle to maintain friendships and keep in touch.

Part of the reason why friendships are difficult for ME/CFS sufferers to maintain is because staying in touch can be difficult due to the cognitive difficulties caused by the condition. Sometimes replying to emails or texts is beyond us. We haven't lost our intelligence, but understanding what's been said, and being able to formulate a response can be difficult. There have been times that I've read sentences, and have known that I knew the individual words, but the sentence meant nothing to me. I simply couldn't understand.

Another element of the condition that can make cognitive difficulties worse is orthostatic intolerance or co-morbid dysautonomia. Our bodies struggle to adapt to moving from lying to standing. This can be so severe that sitting can cause fainting. Research has suggested that ME/CFS causes a reduced blood volume and we can get blood pooling in our lower body, leading to reduced blood flow to the brain and vital organs. Reduced blood flow to the muscles is also believed to contribute to our pain. 

Nausea can also be a serious issue. Mine got so bad at one point that I was being tried on all sorts of nutritional supplements, I was told I was at risk of death due to being severely underweight, and we were seriously considering tube feeding into my small intestine. Feeling sick constantly can be overwhelming. Being unable to eat is horrendous. Trying different medications for it can lead to dealing with the side effects of those in addition.

Another symptom that I have to medicate is sleep disturbance. Most people think that we must sleep a lot due to fatigue. The truth is that it's far more complicated than that. The 'tiredness' we suffer from doesn't help us get to sleep- it's not like a healthy person's tiredness- and we struggle with un-refreshing sleep (we wake up exhausted). While it's common in the early stages of the condition to struggle with hypersomnia (sleeping a lot), over time this tends to morph into sleep reversal (sleeping during the day, but unable to sleep at night), or insomnia. While it's tempting to respond to our comment that we're tired, by telling us to nap, or have an early night, please don't- it shows a complete lack of understanding of the condition if you suggest that we need sleep.

Something that makes our condition difficult is that there aren't outward signs of our symptoms- it's an invisible illness. It can seem that we're using our condition to get out of things, or it can seem that we're exaggerating, and maybe a tiny minority are, but it's likely those you're suspicious of are in fact struggling through far more than you realise.

ME/CFS is a very difficult condition to live with. It's difficult for those around us to understand, and can have a huge impact on friends and family members' lives too.

It's a condition that is also difficult for doctors to understand, and it's still not fully understood, which can be frustrating for all involved! New biomedical abnormalities are being found all the time though, so progress is being made, albeit slow.

If you're wondering why awareness matters, please see blog post: http://jesscfs.blogspot.com/2014/05/may-12th-international-mecfs-awareness.html

If you want to know more about the different severity levels of ME/CFS, please see this post: http://jesscfs.blogspot.com/2013/05/may-12th-mecfs-awareness-day.html

If you're reading this because you have a friend or family member with ME/CFS, please know that they will really appreciate you reading this, try to keep in mind the battles they're facing when you're frustrated by the impact on you/your relationship, but also remember it's ok to be annoyed by that impact sometimes- it's hard on you too (just try not to take this out on the sufferer- they're dealing with enough already). To those who know no-one with the condition: I'm glad no-one close to you is afflicted to your knowledge, but keep this post in mind when you wonder why someone is behaving a certain way- people can be badly affected by a condition, and yet look perfectly well- ME/CFS is one of many debilitating, chronic, invisible illnesses, so that 'able-bodied' person using a disabled parking space or toilet, or not offering their seat, may not be as able-bodied as you think. To fellow sufferers: take this day not only as a day to raise awareness of our plight and our cause, but as a day to remind yourself how strong you are for coping with so many symptoms every day!

Wednesday, 13 April 2016

Functional Neurological Disorder awareness day

Today is Functional Neurological Disorder awareness day. This time last year, I don't think I even knew what FND was. How things have changed..

This time last year, I had already had a stammer many months- the only symptom that pointed to FND prior to my health well and truly collapsing due to this disorder in October 2015. This time last year, a family member had recently had their first recognised seizure- the seizure that would lead to their FND diagnosis. FND was creeping into our lives, but little did we know the devastating impact it would have in the months to come.

FND has caused some of the most distressing, horrendous symptoms and experiences I have ever been through. Some are so awful that they haunt me and I feel unable to discuss them openly. It's hard to write about all this, so tempting to let this awareness day pass without speaking out, but if I don't create awareness among the people I know, then who will?

My journey with FND started innocently enough- faltering over occasional words. This became more frequent. I started going to speech therapy, working hard on techniques to give me some control back over my speech so that I could express myself, and attempt to appear fluent. I sat in a room for hours with James, my Speech and Language Therapist who has vast experience with stammers, finding ways to get round even the trickiest of sounds. Sometimes we'd sit there and I'd read down lists of 3 letter words he'd written out for me- words that were incredibly challenging for me to say. It reminded me of going back to first school, learning to read- but that had come so naturally, whereas this was a huge struggle. I'd seem to make real progress, and then would be put on the spot by something like a waiter asking for my order, and no sound would come. The more I willed the word to escape, the more unlikely the word was to be vocalised. It was excruciating, and frustrating having been fluent for so many years. That symptom was difficult, and it scares me that it could return at any point. But that was nothing compared with what was to come. 

I got a diagnosis very quickly after my body failed me completely. In that sense I was lucky. But the whole experience has been unimaginably difficult.

Nothing prepares you for your body contorting and being completely out of your control. Nothing prepares you for being unable to work out how to get your feet flat on the floor, for being unable to control your limbs, for your body to become so unimaginably weak. Nothing prepares you for sitting battling with a knife and fork, desperately trying to feed yourself, and refusing any help from staff, despite being in serious need of the nutrition. Nothing prepares you for being fed by your mum, for your teeth being cleaned for you, for being lifted on and off toilets and bed pans, for being slid around and hoisted, for straws being placed in your mouth because you're unable to lift a cup, for food being taken away because they deem you currently too weak to safely swallow, for trays of food being placed next to you and then being taken away again before you've recovered from a seizure enough to eat it. Nothing prepares you for your body failing you so catastrophically, for the constant prodding and poking, for doctors constantly meddling with your medication regime, for decisions being made and discussions being had about you, without you. Nothing prepares you for the rather dismissive doctors (because it won't kill you), the nurses that don't understand, the healthcare assistants who drag you to your feet because they're unaware you've had a set-back and are no longer able to stand and take any steps.. Nothing prepares you for A&E staff that abuse you because they lack ANY understanding of the condition you are afflicted with. Nothing prepares you for being flung around mid-seizure by members of staff thinking you're choking, because your airway becomes completely obstructed. Nothing prepares you for becoming completely reliant on a wheelchair. Nothing prepares you for 10 weeks of the same questions every hour 'do you need the toilet?' 'have you opened your bowels today?' 'do you need help with your drink?' 'have you got your buzzer?' 'what's your pain score out of 10?' 'what pain relief would you like?'. Every hour. Sometimes if I had my eyes closed I'd keep them closed when they picked up my clipboard, so that they'd simply chart me as asleep and I wouldn't have to answer the inane questions.. Nothing prepares you for the complete lack of privacy, and the complete lack of space to be able to process things and come to terms with everything. Nothing prepares you for the constant screaming and wailing of fellow patients. Nothing prepares you for wanting to scream, but being unable to, for wanting to walk, but being unable to, for wanting to speak, but being unable to, for wanting to open your eyes, but being unable to, for wanting to breathe, but being unable to, for wanting to return to normal, but being unable to. Nothing prepares you for lying in a body that you have zero control over, no matter what is done to you. Nothing prepares you for how incredibly vulnerable that makes you feel. Nothing prepares you for the people wandering around the ward, for them appearing at your bedside, for the stories of people waking up to confused patients standing over them. Nothing prepares you for having so little control over your life and what is happening around you. Nothing prepares you for all the alarms and chaos, sleeping in a room with random strangers, and watching people battling for their life. Nothing.

FND struck me out of the blue, turned my life upside down, and the effects were devastating. I didn't see it coming, and the effects were unimaginably and inexplicably awful.

But nothing prepares you for the kindness and empathy shown to you at times either. I'd never have thought I'd make friends while in hospital. I'd never have thought I'd deeply respect so many people- both patients and staff members. Some staff members went above and beyond for me. Staff that were over-worked, under-paid, and dealt with a lot of stuff most people don't have to. The messages of support from friends and family, people going out their way to visit me, people sitting with me when I was completely unable to respond to them, but their presence helped- these experiences were heartwarming, and have made the whole experience tolerable.

FND has led to some really awful experiences- experiences that no-one expects to face as a young adult, experiences I wouldn't wish on anyone- and some of them have been caused, or worsened, by a lack of awareness of the condition. Can I explain the biology of FND in great detail? No. And neither can most doctors. Most neurologists 'get it', at least to the extent that they realise the level of disability it can cause, but non-neurologists often have little understanding or appreciation of the disorder. My intention is not to give you in-depth details of the disorder- I've already described this to the best of my ability in my last post. My intention is to make more people aware of the existence of FND, and to give people an idea of how horrendous the condition can be. Is it easy to speak out about things that people don't understand? No. But if all I can control right now is my little corner of the Internet, I'm at least going to use it for good and raise some awareness of this awful disorder. For me, and for the many, many others affected by this condition.

Thanks for reading and for becoming more #FNDaware!

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!