So I thought I’d write a bit about FND, and what it does to me, how it started, what I think “set it off”, and all that other “fun” stuff…
In the beginning, there were strange things.
I’m pretty certain at this point that it all started after a skiing accident I had when I was 14. Yeah, long time ago by now… Of course I have to also mention that before this, I’d been struggling with knee pain (Which went undiagnosed because none of the doctors I saw could figure out what was causing it).
Back then, at 14, just after that accident, I could barely walk. My knees would randomly give way, much like they did in the months / years leading up to my final diagnosis. It was painful; incredibly painful, and of course, I never saw a doctor about it. Because heck, after a few years of already struggling and finally being ignored by the doctors, why would I? I’d just be told that they didn’t know what was wrong and be sent home with a small amount of Paracetamol, right?
Well, in a way, that is kind of what happened. Back when my knee problems first started, when I was about 12 I believe, although someone told me it may have even been at 10, all the doctors did was give me Paracetamol and instructions to do some cycling.
The Paracetamol never helped, nor did the cycling (And I did a LOT of that). Eventually my knees and legs became so bad that I had trouble walking even short distances without almost crying in pain.
At about 16, I finally saw another doctor; a German one this time, because I was in school in Germany at the time. Of course, I was sent to a physiotherapist, who could clearly see that I wasn’t walking correctly any more. So, on to the cross trainer to try to teach me how to walk properly and strengthen my weakening muscles.
Nothing helped. After the second session with the physiotherapist, I experienced something strange. Something I’d never experienced before; and it scared the crap out of me. I was on my in-line skates (Which I loved at the time, despite all the pain), and suddenly, I’d lose control of my legs. They’d just stop responding, go completely numb and limp. This happened two or three times and caused quite a bit of bruising.
I did go back to the physiotherapist for one more session; but when it happened again, this time immediately after leaving the therapists house, I decided enough was enough.
Fast forward to around 2005. My legs had started weakening to a point where I couldn’t run up stairs any more. Then a few years later I could barely walk up normally. Everything I did caused me incredible pain.
I once again tried to seek help from the medical community (In Denmark again), but was once again told that I just needed to do some cycling to strengthen my muscles. So I did, but once again nothing happened, it only got worse.
I’d pretty much given up hope at this point, and stopped going outside altogether. I couldn’t go on walks with my family, because by the end of it, I’d be in so much pain I’d just be in bed crying.
By the time I moved to the UK (Which was last year (2015)), I could barely manage to walk at all. I’d always have a limp, because either one or both of my knees felt like they were being stabbed with giant knitting needles (Only reasonable analogy I can think of). I did try, in the beginning, to go outside and have fun, because fuck, I’d just moved to freaking LONDON! But eventually it became so bad I stopped that as well.
Just after I arrived in London, I immediately sought medical help for my knees, but once again the end result was physiotherapy, which only ended up making them worse.
My knees kept giving way more and more frequently. This was both painful and awkward. They’d usually lock backwards for a moment (I’m a little hypermobile) before I pulled them back in to a more normal-ish position by basically twisting my hips in either direction.
By the end of October 2015, I was barely able to stand. I had to push myself up from chairs in order to get in to a standing position, and overall, my gait was so wobbly and unsteady that, eventually, my colleagues basically told me “GO TO A&E NOW”.
So I did…
And this is where things started really going wrong, in addition to my incredibly unsteady gait, I had developed a pretty nasty spasm in my trunk, which meant that I was constantly jerking forwards. Over the course of a week, I completely lost the ability to support weight on my legs. After two weeks, I could barely move them at all.
During my hospital stay, I started losing control over my arms and hands as well. They’d flex in to weird angles and positions, and EVERYTHING was shaking when I tried moving anything. I was devastated at that point. How was I supposed to go back to my work like that?
I was consuming oromorph (Oral Morphine) in quite large quantities, which finally led to the pain team paying me a visit. They suggested I try Gabapentin, and OH MY GOD, after two days on that stuff, my hands started improving; slowly, over the course of a week, I regained most control over my arms and hands, but my legs were, and are, still pretty much just useless sticks of meat and bone that constantly hurt.
After my hospital stay, which lasted for about 6 weeks, I was sent home in a wheelchair. Back to a flat that I had no way of getting in or out of. Since I wasn’t claiming any benefits then, I wasn’t entitled to any help (Apparently, at least that’s what the social worker at the hospital told me).
I took out a bank loan of £10,000 in order to get myself settled in a somewhat more accessible flat. It’s not perfect, but it’s definitely a million times better than the dump I was in before. And best of all, the doors are wide, there’s a lift, and a ramp.
But in any case.
What it’s doing now
I’m struggling. That I can say for sure. My life has been turned upside down. I can’t stand, let alone walk. My sleep is constantly interrupted because of pain, and on top of all of that, my energy levels are so unpredictable that I’ve almost given up on trying to plan anything.
So, my main symptoms:
- “Semi” paraplegia
- I know this sounds weird, but it’s the best description I have…
- I have virtually no control over my legs.
- Whenever I do try, be that by reflex or intentionally, to move them I get nothing but spasms, cramps and incredible pain. And once I stop, it takes a while for the muscles to actually respond and relax.
- Sensory alterations
- This affects mainly my legs, again.
- Hot doesn’t feel hot; cold doesn’t feel cold.
- It’s hard to explain, light touch is impaired, but not gone.
- Everything just “feels wrong”
- Awkward movements
- This affects my arms, woohoo
- Basically, if I’m not looking at them, I don’t really have a sense of where they are. It’s a sense called proprioception, It’s still there; just, dulled I suppose; this also affects my legs. Basically, my feet can be turned whatever way, and they just feel like they’re pointing straight ahead.
- I bump in to a LOT of things.
- When I reach for something, I stub my elbows on whatever is near me
- When I type, like I do now, my finger dexterity starts going down. To the point where writing this much has to be done in a few “sessions”
- Fluctuating and Unpredictable energy levels
- This is one of the biggest problems I have at the moment.
- I can go from energised and awake to foggy and tired in the course of an hour or less.
- Sleep doesn’t seem to have much effect on the consistency of my energy levels.
All of this is causing a host of other problems. I’m moody at times, desperate to do things and despaired because I can’t. I’m scared of losing my job. Scared that I’ll lose my mobility again (Like I did when I was in hospital). I’m reclusive (again), because I’m actually scared of going outside and suddenly finding myself in a situation I can’t handle on my own.
On top of that, all the waiting that I’m currently forced to do isn’t making things easier.
As it stands right now, I’m waiting for:
- Information on when I can get a new wheelchair (I have an appointment on the 18th of March to have my “Seating Requirements” re-assessed at a “Lightweight Wheelchair Clinic” – I hope I can finally get a properly sized / fitted, lightweight wheelchair)
- Appointment with the pain clinic (Finally been referred…)
- Appointment with the Gender Identity Clinic (Yeah, I was referred in May last year, still waiting for an appointment)
- A call back from Ealing IAPT about what support they can offer
- My first appointment with the “Recovery Team” (A psychiatric service for people coming out of hospital as far as I’m aware… Not sure what to expect there either).
- My PIP claim.
- So many other things that I can’t focus on right now…
Uncertainty is one of the biggest fear factors for me. It sends me in to a spiral of worry and anxiety; more than the average person. Thanks Aspergers
At least I’m starting to slowly work through some of these issues. It’s going to take time. A lot of it.
Well, this turned in to a bit more than I initially thought, but it was pretty good to get off my chest I guess. There are many other things in my history that may / probably have contributed to my condition, but well… Maybe I’ll dive in to those some other time.