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.

Relinquishing Control

Well where to start…I think I will begin by apologising for my prolonged absence. I’ve been in a weird place lately; after the high of finally seeing my family for the first time in 18months, it was back to London and for some reason my writing motivation just left me, perhaps because I’ve been feeling particularly rubbish and have probably been overdoing it. In a way though, my rollercoaster moods fit well with the topic of this blog and the somewhat paradoxical notion that by acknowledging that you cannot control your chronic conditions you actually gain more control over your life.

Huuuuuuuuge head and so much hair!!!

I’ve been thinking about writing this blog for a long time, in fact since I cut my hair, but as I’ve said for some reason the motivation wasn’t there, and of course I start to beat myself up for not keeping to my self imposed schedule. Why do we do this? I think for me the answer is to have a sense of control over what I do and when I do it. So how does a hair cut fit into this? Well, for some people a haircut is no big deal, it’s only hair after all. For me it’s much more than that, it’s an element I’ve always been a bit precious over; I was teased and bullied about my hair from as far back as I can remember. When I was around ten years old an older boy chased me around the park screaming that I must be wearing a wig, whenever he caught up with me he would pull my hair so hard that I recall having a terribly sore scalp for hours after. The old adage kid’s are cruel is so very true and I wish I could have just chalked it up to experience and moved on. However, for me, it made me become almost obsessive about my hair, I would try and control it by pasting it down with mousse, I absolutely abhor people touching my hair, so much so I don’t think I’ve visited a hairdresser since I was a teenager. So shaving off a side of it was a big deal for me. As I’m sat here pouring everything out I realise why it may have taken me so long to write this blog, it’s like I’m bearing my soul but it’s also very cathartic.

I was maybe about 13 here and I would never dream of wearing my hair down at this point.

Anyway, it all started when Carys asked me months back if she could shave my head, I think it’s her payback for being sheared by me for so long, of course I said absolutely not, but after some time I eventually relented and allowed her to give me an undercut at the back, where it wasn’t visible. Wow, did I feel lighter, I have a vast amount of hair, but because I tried to control it so much no one other than those closest to me really knew how much. Anyway a long story short Carys was cutting my hair months later and I just said fuck it, shave the side, ”are you sure?” was the response, ”do it before I change my mind” and so she did.

Early 20’s hair
Me now 🙂

I let go, I didn’t need to be in control, I now allow it to go fluffy and wild and I love it. It’s taken 37 years but I actually like my hair. All of this got me to thinking about chronic illness, about letting go of trying to control everything, about how freeing letting go really is. I have very little control over what my body does, when it decides to freak out and tremor or spasm, when my speech suddenly stutters or stops completely, I used to try and hide this from people and it would embarrass me. Now I do my best to own it, I make jokes, try and make people comfortable with it and me. I still struggle at times, wondering why anyone would want to be around me never mind stay in a relationship with someone who has changed so much over time. These are however, less frequent intrusive thoughts and I’m working hard to acknowledge just how awesome I am and how very awesome the people I choose to have around me really are. In truth there’s very little we can control in life, and perhaps by acknowledging that we all become a little more free and a little more happy with our lot.

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.

A Grieving Process

I’ve heard, many times before, that accepting chronic illness is much like a grieving process, but I don’t think I really understood what that meant until recently. Before my diagnoses, and to an extent after but before FND last year, I was extremely active. It all started when I spoke with some passengers coming through the station I was working at at the time; they were completing the London to Brighton. When I enquired where their bikes were, they informed me that they were walking it not cycling. In true Lou fashion I spontaneously decided that I could do that and signed up for the next year.

The Start of the London to Brighton

This was the beginning of something I couldn’t even imagine, it was through this event that I would meet some truly inspiring people, discover Obstacle Course Racing (OCR), a sense of community, and an amazing bunch of strong, empowering women in the UK Mudd Queens; my muddy running journey began. My first OCR was Survival of the Fittest in freezing, snowy conditions at Wembley stadium. I fell hard on the concrete many times and, although probably my least favourite race, I was hooked. I loved how free OCR made me feel; you could have an awful week, or receive some really bad news on the way to a race, but while you are out on that course all that matters is the next obstacle, and assisting others on the way. I suppose that translates into a good ethos for life.

Wall finish at Rocket Race

To begin with walls were my absolute nemesis, I just couldn’t do them. I remember having a conversation with one of the queens at The Suffering, where I had decided to take on three races in one weekend, we were looking around part of the course the night before day one I was freaking out because there were so many walls!! The next morning we started on the course and I was suddenly able to combat them, they were like ”Can’t do walls huh?” At one point I was running an OCR at least once a month, dragging my long suffering partner out from the warmth of her bed, at ridiculous O’clock in the morning, to stand in a cold, often wet and muddy field. But we both enjoyed it and made some amazing friends along the way.

Rat Race Dirty Weekend. One of my favourite events. 20 miles 200 obstacles.

When I was first diagnosed with Fibro, I was adamant that nothing was going to change. I’m as stubborn as hell and I wouldn’t let this beat me. I remember the second time I ran RRDW, a 20 mile OCR, I was fitter, and stronger, but I knew something wasn’t right. After all the training I still had to walk the last 3 miles, which was very frustrating as I came in around the same time as the year before which meant that, for a while at least, I was on course to smash the previous years time. When I had to slow down OCR and reduce my running I fell into a bit of a depression. I felt that I was losing the person I was, the person who was full of energy, most of the time pretty annoying, wanting to keep moving, never sitting still. Of course I realise now that those are not the traits that make me who I am, I guess I wallowed for a bit, thinking that I was burden to everyone, what was the point. In reality what I needed to do was find a new focus, help my life along in the direction it needed to be heading and appreciate what I have and what I can do. It’s ok to grieve for the more physical, active you, it’s ok to miss the people and the sharing of stories from your runs or workouts, or whatever it is you have had to move on from. It’s a process and one that I feel needs to be embraced.

I look back on these pictures now and realise how little I appreciated my body at that time. I was always striving to do ”better”, whether it was a course time, being able to complete an obstacle unaided, or simply to get stronger. When you are in the middle of something you don’t always realise the gains you have made, whether that be mentally or physically. Now I realise and appreciate how far I had got and the things that my body was able to do. Really the journey now isn’t that different, it’s about recognising how far I have come mentally, about helping those around me who see the impact of these conditions on a daily basis, because I can only imagine the affect it has on them. Ultimately life is about supporting each other, being there, being present and embracing all the moments you have, because you never know what the future may look like.

Finding Comfort and Tolerance in the World Around Us

Let’s always remember to have empathy, compassion, and humility.

I’ve been struggling with my pain levels for sometime now. it used to be that I would have flare ups of Fibro, whereas now it seems to be a constant normal. One of the things that comes from this is that you slow down, you have too. I used to zip around everywhere, up and down escalators at work, I’d whizz around festivals getting us drinks, often zoom through a crowd in London leaving my partner buried amongst strangers, much to her disdain. However, I can no longer physically do that, I have to pace myself particularly now that FND affects my coordination and my ability to get up and down stairs. As frustrating as this enforced pacing can be, one of the massive positives of pacing is that I notice so much that would have otherwise passed me by.

The other morning I was taking my pooch for a toilet break when I saw this blob of white paint on the road; it’s little paw print shape created a big smile on my face. Such a simple thing, but something that can really heighten your mood. I loved it so much I had to take a photo, and it got me thinking about how much I must have missed when I was rushing around everywhere.

I went on to consider how important it is to take the time to appreciate, not just the natural world, but the people around us. Recently I was chatting with a friend of mine who works for the NHS. They were telling me how some medical professionals refer to Fibromyalgia as ”Fuckoffmyalgia” insinuating that they don’t see it as a real condition. This made me somewhat sad but didn’t surprise me. I have heard of some terrible experiences people have been subjected to, and the way that they have been treated is unacceptable. However, there are also a lot of positive experiences, where people are supported and receive whatever help is available. Unfortunately that help is somewhat limited when it comes to conditions such as Fibro and FND because, as my Neurologist put it, they are very complex conditions, and no one experience is the same. As frustrating and disheartening as it can be for us as patients, I do think that we as a collective need to be more understanding and empathetic towards others. I know this is going to be contentious and not everyone will agree but this is how I see it; When it comes to medical professionals they are used to treating what they can see; if you have a broken bone, they will do what is necessary to heal it, if you have a clear psychological issue hopefully you will receive the medication/therapy you require. So when patients have conditions that don’t easily fit under these brackets then it can be very tricky to know what the best route is. Yes, unfortunately some people will think, well there’s no physical cause for your pain so it must be all in your head!? My answer would simply be, isn’t all pain in our head? doesn’t it all stem from messages our brains and nervous system are sending? Therefore a communication breakdown between our brains and nervous system is completely feasible; the wrong signals are being sent and pain is occurring where it shouldn’t be.

To give another perspective, I have found some who suffer from chronic illness are full of negativity and, I hate to say it, self pity. Please don’t get me wrong we all feel sorry for ourselves sometimes, believe me I’m no exception. Chatting to others who have similar experiences can be fantastic for supporting each other and communicating with those who understand what you are going through. However, that doesn’t mean that we should stop empathising with those who do not suffer chronic illness, or should belittle what it is they are going through. I have heard people voicing frustration about others saying they are tired or in pain, making comments like they don’t know what pain is. I think it is important for us to remember that no one knows what anyone else is going through or feeling and we, as a ”chronic illness community”, need to not lose that humanity and compassion for others. There has been a lot of discussion about Long Covid recently and how a lot of the symptoms mimic that of Fibromyalgia. Rather than the posts I have seen, which are somewhat angry in tone suggesting that those with Long Covid get help yet those of us with Fibro are just left, wouldn’t it be great if we reached out to our fellow humans instead of creating a them and us divide and doing exactly what has been done, by some people, to those suffering from chronic illness. Shouldn’t we be offering empathy and support rather than exclusion? It may even end up helping to create more awareness of invisible and chronic conditions.

Look up, enjoy the view.

So yes it is tough, but please let us not get into this bubble where that is all we concentrate on. Let’s take some time out, look at the small things that make us happy. Take some time for a different perspective and not forget that everyone is battling something, regardless of the form that battle takes.

  1. I relate to this whole thing so much. Never cause of hair but many other things. Mine wasn’t even as…

  2. Louise this is Avery impassioned and honest blog. Kids are cruel and bullying leaves a lasting impression on our lives.…

  3. Ahhh Lou. Having FND too I can sympathise so much. No two days are ever the same. Sometimes you feel…