FND awareness

Here We Are Again!

It’s been over a year since my last blog, and my last declaration of getting myself together and focussing on my writing. That, obviously, did not happen. This time I’m not making any promises to myself but I will endeavour to maintain my writing and start moving forward with the plans that have been circulating my brain for quite some time (I think we’ve heard that before!). So for now a quick catch up; true to form I am struggling with my health again at roughly the same time of year as the past few years, at least it’s something a little different this time…

Unbeknownst to me it all began with a blister that appeared on my finger. I didn’t think much of it as, the night before the blister appeared, a friend of mine had kindly leant me their gloves and they were a bit tight, so I put this down to the cause of said blister. Then around ten days later, and my first day of annual leave, I awoke with one rather large blister, and one smaller one on my arm (for those who are not overly squeamish please see pics). This was a couple of days before my my 39th birthday, Happy Birthday to me!! The GP placed me on a heavy dose of anti-viral tablets and antibiotics with instructions to go to straight to A&E should anymore blisters appear. It’s now coming up to two weeks since the second set of blisters graced me with their presence and thankfully, so far, no more have appeared.

I used to have a full on zombie survival plan, now I’m resigned to the fact that I will probably be among the first infected.

For the first few days I didn’t feel terribly unwell, I was sleeping more than usual but I was on leave so catching up on sleep is a given. I cancelled most of the plans I had for the week though as my arm was very painful and I was concerned about the blisters bursting. Towards the end of the first week I started to feel unwell with rib pain and intermittent pain behind my eyes. This past week has been worse, struggling to get out of bed with severe fatigue and generally feeling unwell. Cabin fever is starting to set in and literally all I’m doing is sleeping and walking the dogs for as long as I can manage. I went back to the doctors this week and, as usual, they’re not quite sure what is going on but have said it is likely to be a viral infection and advised lots of rest and fluids. It’s frustrating as I’ve been back on shift work for just under a year now and, although it’s been a struggle at times, I am glad to be back.

This current bout of illness has got me thinking though; I am happy to be back to doing my job, albeit with some restrictions, but it has got me realising how little I actually do out of work. When I’m on shift I literally work, sleep and walk my dogs. On my rest days I may venture up the road to one of my local pubs but that’s pretty much it. My world has indeed become very small. A few weeks back my sister brought my niece and nephew to visit and we had a couple of days out in London, I absolutely loved it but I was in agony. On the second day Carys and I had to leave them in the Science Museum to buy codeine and heat patches and find somewhere to sit and chill out because I just couldn’t cope with the pain and standing. This really made me think about just how much my life has changed and yes I work, but how much do the shifts and the nature of my job impact even more on my life now? It’s something that I’ve been asking myself more and more recently.

The large blister as it looks now it’s nearly healed.

Anyway, it feels good to be mind dumping here and I know there are a lot of people in the same situation. In my next post I’m going to be talking about attending Glastonbury last year and how we coped, what went well and what didn’t go quite as planned.

Chronic Illness and Covid Round Two

I have been saying over and over for weeks; I must get my blog started again, I’m going to write a blog post today, I need to get my ass in gear and other various half ass attempts to start writing again. It’s hard to say why I’ve been quite so demotivated recently and maybe it doesn’t require analysing, it just is what it is.

Anyway, so here we are still trying to navigate life through the delight that is Covid. This week I was supposed to treat my Mum to her Christmas present from her three kids; I was going to meet her in Crawley, see the family and then head to Brighton the next day for a meal and to see James Blunt, someone she was very excited about seeing live. However, as luck would have it, on Monday both Mother Hen and I tested positive with Covid, over 160 miles away from each other and having not seen each other in months. Seriously, you can’t make this shit up! There’s been a lot of chat about how mild this variant is and how many people are barely symptomatic, so I thought I’d share my experience. It sucks monkeys balls!

My girls keeping me company on a Friday night

I started with a very sore throat and painful ears, and then progressed onto heavy cold like symptoms and what I can only describe as a heavy lethargy, my eyes just want to be closed but I can barely sleep. it seems to come and go in waves; last night I was feeling pretty perky and thought oh good this must be the end of it, then I woke this morning feeling like hell again and struggling to move out of bed. I’d describe it as worse than a heavy cold but not as bad as flu. It’s currently day five so I did a test anyway and it, of course, came back as positive so early release seems unlikely at the moment. On the plus side though my Mum’s test was negative today so hopefully that means she’s on the mend, as she’s been feeling pretty crap too. I am triple jabbed and thankful that the symptoms are not a lot worse, I am also thankful that so far, somehow, my partner has avoided contracting it.

I initially caught Covid at the beginning of January 2021, so it’s been just over a year. January/February seems to be when my immune system just gives up, if I’m going to get ill it quite often seems to be in these months. In the year since having Covid I have struggled more and more with severe fatigue, it’s hard to know whether this is a consequence of Corona Virus or whether it is to do with my diagnosis of FND in December of 2019.

How can you not smile when you get these cuddles?

What does concern me now is the recovery time from this second bout and the effect it will have on my body and other conditions. It’s easy to forget how long I was out of action last year, and it’s only really the Facebook memories that remind me what a slog it was getting back to work and trying to get back to ”normal” I question what normal is for me now on a regular basis, but I will address that more in my next post.

Sleeping Poochy pic because, well, why not?

On a positive note it seems that being ill again has motivated me to restart this blog and now I’m determined to continue blogging with all the things I’ve wanted to say and have been swimming around in my head for the last six months. I’m annoyed at myself for letting it slip but trying to give myself some slack. We find ourselves in strange times, and on top of that we have our normal lives and worries to contend with. As such I think it’s a case of do what you can, when you can and lets try not to put too much pressure on ourselves. With that in mind, and the fact I’m struggling to keep my eyes open, I shall leave it there for now and endeavour to get my next blog post up in a more timely manner.

Feeling Somewhat Lost

Well once again there has been a big gap since my last blog. I guess I’m just constantly all over the place at the minute and continuously searching for motivation.

Bala Lake, so lovely to swim in. The views from out in the lake were amazing.

I started writing this blog two days ago and got as far as the first two sentences. Since then I’ve been thinking a lot about why I have this website, why I blog, and what purpose it serves. Ultimately I think the purpose is to highlight invisible disabilities and try to convey the impact they can have, but also to try connect with others who may be in a similar position; if I can help some people along the way know that they are not alone and give them comfort in some form then that would be mission accomplished. It has occurred to me that maybe my posts can come across somewhat self indulgent and personal, however I can only write from my perspective and I aim to be as open and honest as possible, so maybe personal is not a bad thing. What I’m learning about chronic illness and my disabilities is that they are ever changing, and I don’t mean physically, although that often is the case, but more so for me is the mental aspect of it all; sometimes I feel like I have everything under control, I’m ok with where I am and what is going on and sometimes not so much. I think the latter is where I am now.

I feel somewhat lost. Even as I type those word I am wondering what I mean by them, I shall do my best to try and make sense of my thought process surrounding this. I don’t know what the future holds, yes I know that no-one really knows what the next day will bring but there are normally some solids that are more than likely to happen. I have worked for the same company for over fourteen years, and was fairly confident that I had built a solid career. Now I am unable to complete that role, I have discovered another role which I enjoy and is actually a welcome change however, I have no idea how long I will be able to continue doing this current role and what future employment will look like. In my last blog I discussed being able to see my family and how much that meant to me but how the weeks after leaving Somerset were difficult, adjusting back to London life when I just want to move on now, yet for various reasons we are no closer to making that a reality. We have recently returned from Somerset and again that feeling rings true. Previous to our week in Somerset we had a week in Wales, and it was so lovely to escape the city, to be in rural Wales and indulge in a hot tub with amazing scenery and beautiful sunsets, and yet, somehow, I didn’t feel refreshed after that week, I just didn’t feel how I normally would after a holiday.

A life is ultimately constructed of memories, of moments lived, It’s not built of material things but of experiences that shape us, help us to grow and evolve as individuals. The thing with chronic illness and all things associated with it is it’s very isolating, even if you are surrounded by loved ones I find it’s a constant battle within my head; do I talk it about it too much? Am I boring people? Am I still the same person? Are they noticing my tremors and if so should I address it? Oh good I can’t get my words out again! Honestly it’s relentless and frustrating and the good old anxiety makes sure to no let you forget about it. Actually as I’ve been writing I realise where a lot of these feelings stem from. While in Wales I had an assessment for PIP followed a couple of days later by a Rheumatology appointment. Not only did this mean that two of our days were dictated by telephone appointments but also that I was delving a lot deeper into the affects of my conditions on my life than I normally would. To go into depth about the effect chronic illness has on your everyday life and to acknowledge that, rather than using humour – my chosen way of dealing with things – is extremely draining and forces you to reflect on how things have changed.

Perhaps I’m just feeling as though I’m at somewhat of a standstill right now, an impasse if you will, this feeling won’t last forever and I do know that but right now it’s hard to not feel a little lost. I’m sure with how the world has been recently I am not the only one feeling this way, chronic illness or not.

FND and Me

I came across the term Functional Neurological Disorder on a Facebook Fibromyalgia page, prior to this, like many other people, I had never heard of the condition. When you have undiagnosed symptoms it’s very easy, although not advisable, to turn to doctor Google and I fell into this trap a few times yet I never came across FND until the Facebook post. I showed my partner the article and we both thought it was interesting and that I was definitely experiencing many of the symptoms. FND is actually a fairly common condition and accounts for nearly a third of Neurological diagnoses and yet most people are unaware of it. As April is FND Awareness Month I thought I’d share my experience with FND and how I was diagnosed in December 2020.

Black and white hides a multitude of sins. My face was lobster red after a hot bath to try and get my body to stop screaming.

For years now I have been struggling with a plethora of issues; my memory, forgetting the names of things, where I had put things, what I was doing in a particular room, etc – it was very disconcerting and, although I was aware that lots of people experience these things fairly regularly, I knew something was not right with my thought processes. If I was at a social event I would often avoid introducing people because I would regularly completely forget someone’s name even though I had worked with them for years, or had met them several times previously. This, as I am sure you can imagine, is highly embarrassing and I would get paranoid that people would think I was just extremely drunk or didn’t care about them or know who they were. Initially I put these incidents down to ‘fibro fog’ but as my ability to multitask decreased, and I kept getting my words mixed up at work, I was growing more concerned, as was my partner. Then in June 2020 I started to experience severe tremors, I had several falls, and had a few instances of forgetfulness which were potentially dangerous such as leaving the grill on having retreated upstairs to chill. I was also experiencing dystonic episodes where my hands and feet would go inwards and completely rigid and I would start opening and closing my mouth uncontrollably. I could hear what was going on around me but I could not respond. One of the major triggers of dystonia for me is alcohol, so I need to be much more aware of my alcohol intake and if I start to feel ‘funny’, that’s the only way I can explain the pre-dystonia feeling, take myself out of the situation and ‘reset’ as I call it. This seems to work really well and I haven’t had a full dystonic attack since January. I do get smaller ones, where I am perfectly alert and coherent, but where my right hand will go completely inward and rigid, but with distraction techniques and my partner massaging my hand it generally doesn’t last too long.

In December 2020 I was seen by a wonderful Neurologist at Kingston hospital. She performed an examination and carried out some tests to see if my tremors eased with distraction, which they did. I was then sent for a brain MRI to rule out MS. The thing with FND is it is not a disease but a problem with the way the brain and the nervous system send and receive signals, so it’s about retraining the brain and encouraging it to use different pathways. I’m probably over simplifying things but this is how I understand it.

The sunflower lanyard is for people whose disability may not be obvious.

There are definitely restrictions and enforced adaptations that come with my FND; I have to concentrate more on what I’m doing, if I am going anywhere on my own I have to be very careful that I don’t get distracted and cause myself to fall or lose balance, I sometimes have issues with my speech (which my partner refers to as going “into the remix”) I can’t always prepare my own food, and have to wait until my partner is home to take a bath. For someone who has always talked a lot and is, I think, fairly articulate and very independent it’s difficult to accept help and acknowledge my new limitations. My symptoms, at present, are certainly life changing but they are not completely debilitating like they are for some FND sufferers.

The purpose of FND awareness month is to get this condition recognised, not only by the general public, but also by the medical profession. As I discussed in my last blog, when there is no clear cut disease, or quantifiable cause for your symptoms they are sometimes dismissed as being psychosomatic. As such it can be a lottery as to whether you will see specialists who are familiar with this condition and the complexities it can cause or not.

If you would like to find out more about FND please see my useful links and further information page.