Invisible Pain. Part Two.

FN.. What?

I don’t know about you, but do you ever look at other people around you? Whether in the street, at the local store or whilst you’re out and about doing whatever it is you’re doing. Me? Definitely. I adore people watching. I tend to do this whilst I’m having a break when out. Usually supping on a coffee or the like. Or having to sit on a bench due to giving in to the demands of my legs not wanting to work particularly well.

I watch strangers as they pass by, busy in their own worlds with their own concerns and worries, not giving me a second glance. Not that I would expect them to of course. I do however, often wonder what their story is. What is going in their life? Are they happy? Are they content with how their story has gone so far? Are they a confident person? Are they scared? Are they running from someone? Something? Themselves?

Are they loved? I always hope so.

Like many cities across the globe, Exeter, which is the closest city to me has a significant homeless population. I look at the gatherings of these souls in and around the city centre and I often wonder how they got to be where they are now. I have on numerous occasions stopped to speak to a few of them. Their stories are usually that of broken relationships, drug or alcohol abuse intertwined with prison time, and a surprising number of ex military with severe mental health conditions who for one reason or another have fallen through the gaps in the system. I hope these people are still loved by someone.

It’s the aforementioned community who tend to get overlooked by society. They get “Judged” by society. Given a “Wide berth” in the street by passers by. I myself have been guilty of crossing the street when confronted with a large gathering of homeless folk in front of me. Especially when I am with my younger daughter. I feel shame for doing so. 99 times out of a 100 they do not pay me any attention whatsoever. Usually, and unfortunately because, at least the gatherings I witness in the city centre, are high, drunk, or arguing amongst themselves. Which can be quite intimidating to stone cold sober passers by and children.

The point I am trying to make is this. There are groups within society who tend to get overlooked. Groups that very little is known about, or understood. Now whether that is down to ignorance, laziness, or fear of what the answers may be if too many questions are asked, I know not. It’s easy to write them off as lazy or ignorant.

Lord knows the Government of this country (and no doubt yours, if you are reading this outside of the UK) seems to only have one brush with which to swipe across everyone who doesn’t fit into their neat little tick boxes. Mr Starmer, appears to think he has all of the answers, whilst blaming the so called inherited mess on the previous bunch of Wombles who were in charge. Is it just me, or does Mr Starmer seem dead behind the eyes? I swear he’s an AI bot! About as much personality as a freshly laid turd, with the charisma of a sloth with a semi lob on! Anyhow, this piece is not a political one. Having said that! Sweeping statements like the one made by him yesterday 25.9.24 stating that everyone on long term sickness benefits should be expected to look for work leave me wondering just how out of touch with reality he really is. Yes, benefit fraud should, and needs to tackled, but eyeing everyone with the same suspicious look?

I worry, you see. I have good days and bad days. FND is a strange condition. Like any condition it has a scale. There are some within the FND community who are hit incredibly hard by its effects. Being left wheelchair bound, suffering debilitating seizures, epileptic type fits and black outs. Speech problems, swallowing issues and even bowel issues and many more. This side of FND is incredibly visible, and life changing.

For me, part of my FND is visible, and a lot of it is not. I call the side that isn’t visible my clandestine side, or my guilty side! I call it this because it’s only me who can feel the effects of it. I can varying symptoms including diplopia and dizziness, I’d make an awful sailor! I am in some degree of pain on pretty much a daily basis. Now this does not have to have to be excruciating pain. At times I can get horrendous shooting type pains out of nowhere, and electric shock type pains. Only very recently, I could have sworn I had been stung by a wasp or the like on the back of my right leg. The instant searing pain I felt in the back of my leg, which made me physically and quite violently lift my leg up was really quite severe. Yet, no wasp, no mark, no sting sight. Just FND doing its thang! I don’t know what it is about my right leg. But from the very start of this, adventure, ol’ righty has taken a lot of the hits!

For those of you reading this who, like me, are some way north of your 20’s and 30’s, (alright, I’m north enough to be in Shetland!) you’ll understand when I say, my brain says “Heck Yeah” but my body says “You’re avin’ a bubble mate!” I find myself falling into this thought pattern at times, commonly when I’m watching my 18 year old son playing football (soccer) I think, I could still play like I did when I was his age. I can just imagine the staff in the control room of my chaotic brain. Office chairs on their side, paperwork flying through the air, all on their backs literally wetting themselves with laughter, screaming “Please stop, I can’t breathe, Brain, did you hear what he just thought!?”

I catch myself thinking daft thoughts like this. I mean when I walk now, it’s a lot slower than it used to be, so running around a football pitch! The only piece which runs on me these days is my nose!

I see it as a type of ‘white noise pain’ as it is always there in the background throughout me. Mainly my legs and arms, hips, neck and top of my back. The skin crawling sensations, particularly in my legs are an odd one. Especially when you can actually see the surface of my skin moving. Very alien! And then there’s the shooting pains in the arms, legs. Weakness when walking. Ol’ righty likes to give way at times without notice! That can be quite comical at times! Speaking of comical, I had a drop attack quite a few months ago, and mercifully these are rare. I walked into the kitchen, and then just fell to the floor and landed on my backside. I sat there perplexed and giggling!

Drumming is becoming more of a challenge these days, and that is one aspect that does get me down. To the point that I look at my drum kit, and think, what’s the point? With thought patterns like this I have to be mindful and careful. It can open the rabbit hole of depression and self loathing, which can exacerbate the pain. I do a trade off though. Adrenaline for pain later! I’ll explain. If I get the chance to play, and this may become more of a regular reality as there may be a band on the horizon, I say “may” as it has been on the horizon for some time, however, if I play, the adrenaline and concentration of playing can mostly mask the pain. Afterwards, well, that can be a different story, unless I’m in a period of remission from the symptoms which can happen at times.

And then there’s the..

Visual aura migraines when they decide to strike. They’re a roller coaster of a ride when they decide to make an appearance let me tell you! Then leave me knocked out for a day or 3.

I liken it to no longer feeling comfortable within my own body anymore. And I don’t mean that in an aesthetic way. I guess the most surprising part of all this for me is how quickly it all came about and how I have become used to it over a relatively short period of time. 5 years.

Oh.. and then there’s the unpredictable bowel issues! How very un-British of me to even dare to mention such uncouth goings on! Oh yes.

“Tally Ho! chaps - Squadron leader unpredictable here”

“Todays mission objective, catch him out when you can, preferably when he’s thinking it’s time for bed”

“If we can’t complete our primary objective, then we’ll wake him up once he’s actually got to sleep with some more pain, and lets make him feel like his anus is going to explode”

“Roger that Squadron Leader, do you want us to ramp up the Tinnitus for good measure too?”

“Splendid idea!”

Then there’s the short.... err, umm, what was I saying? The short term.. oh what’s it called..? Mammary..? NO! Tall.. No.. Short.. has something to do with being short.. oh stroke my buttocks and call me Alfred.. what is it?

SHORT TERM MEMORY!! That’s it! My short term memory is gone. Left the building. You turn up, ring the doorbell, no answer, knock on the door, peer through the window, the house has been cleared out kind of empty gone! And with it, in its suitcase is finding suitable words or peoples names. You know when you see the news anchor on TV, and the auto cue breaks? Rabbit in the headlights stare as it dawns on them and they realise? They’re on live TV, they’re on their own and they’re going to have to wing it? Yep, that’s how I feel when I’m in a conversation with people and I’m desperately scrabbling for words. Especially with new people.

You can sense them desperately trying not to finish the sentence, or say that elusive missing word for you!

And then there’s the clinical depression, and the CPTSD. All invisible pain. All something I didn’t ask for and wouldn’t wish on anyone. Let me be clear however. I have not written this to gain sympathy, sadness or pity. “They’re about as useful as a paper submarine”. I have written this to raise a little awareness on the subject of invisible disabilities, and how they affect those who live with them.

And Mr Starmer. I would love a job. Let me know when you find me an employer who can “truly tolerate” an employee who can only show up for work when their health allows. It was the reason I left the workforce in the first place, and I worked for the local government for 11 years. Yet, because of how my health was affecting my attendance, I was about to be sacked. So I resigned. How do you think that makes someone feel Mr Starmer? Valued? Supported? I’m just glad I didn’t vote for you sir.

I have worked full time since I was 17 years of age, bar a couple of years unemployed. I am now nearly 52. I have my faith, family, a few friends, and you know what? It could be so much worse than it is. And for that. I am truly blessed.

I haven’t given in to using a walking aid yet. I’m obviously too vain! I guess if I was in a wheelchair, no-one would question it. Having said that, there is a lady on Instagram in the states who has FND which affects her mobility severely. She has to use a wheelchair at times, and sticks, yet the abuse and comments she gets calling her a fraud are vile. I only hope that if those leaving these comments find themselves in the same position, aren’t too shocked when they are on the receiving end of the same ignorant abuse.

If you have got this far, thank you so much for reading, and I hope you have a little more understanding on how invisible disabilities can affect people in so many ways.

Peas ‘n’ Taters

Dom