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.

Wales red sunset

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.

Somerset landscape

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.