Author: Melanie

Hey there, I'm Mel, nice to meet ya! I'm a 20something year old, currently trying to cope with a major life change that happened in late 2015. I'm wheelchair bound, and struggling with a little researched and not very well known illness called Functional Neurological Disorder (Or FND for short). Please do have a look at my blog (Dreamscape / ilynx.org) if you want to know more about me. All the good bits are / will be on there.

The Weekend

So, work has actually approved my pacing plan, which I am incredibly happy about.

The weekend once again flew past me, with little to be said about what actually happened.

I spent most of Saturday and Sunday in front of the computer, not really sure about what to do with myself (This seems to happen a lot; and I’m pretty sure it’s because of my steadily declining mental health)…

 

Saturday

I actually accomplished something! This is the first time in a very long time that I’ve had the will and spoons to actually go outside while not at work (I.E. I didn’t HAVE to go outside).

It was a very short trip (Well, actually TWO of them), to the local “corner store” to buy a bit of food, some snacks and other titbits.

It was a small step, but yet such a huge accomplishment for me. It opened me up to the possibilities that lie in front of me. Even though my daily supply of spoons seems to fluctuate in a manner equivalent to an aeroplane spinning out of control, I can see myself doing a little more each day.

 

Sunday

I woke up to some pretty gruesome news. Someone I hadn’t spoken to in a while (Because I may have insinuated some pretty nasty things to them), contacted me. An ex girlfriend of mine had committed suicide. I’m uncertain as to when it happened; but I know it happened.

This news pretty much set an abrupt halt to all my other plans (I was actually planning to go buy a few new clothes).

I spent most of that morning crying, mourning; blaming myself for something I had no control over. We hadn’t spoken in over a year, and yet her decision to take her own life affected me in ways that I’d never imagined.

 

Monday

I did it again! And this time it wasn’t just to the corner store, or anything like that. Yes, I went outside on a “day off”.

The crucial bit here is that I actually met someone who suffers from FND as well. This was, and is, part of my ongoing “quest” to find actual friends and build a little support network for myself.

The day overall was a little stressful; it started out with me not showering because I had to wait for a medicine delivery… I would never be able to make it out of the shower and to the door if someone rang the bell while I was in there. And with no idea of when the delivery would happen, I waited. Finally, at around 11:30 it came, and I was relieved of my “waiting duties”. That shower was sooo good xD

I then had to wait for an occupational therapist, who basically just wanted to make sure that I was safe at home, with the equipment provided by the people he works for. He also told me that IF my landlords were to agree (I’m doubtful they’d even CONSIDER it), I would actually be able to get the kitchen altered and made more accessible. I may ask them; I probably should, but I don’t expect them to say yes. This IS a beautiful kitchen, and I doubt they’d want to have anything done to it.

Onwards to late afternoon, and I met a person! Yes, I actually got out of the house, took a bus two stops (I hate taking buses, and this one was as bad as they come), got off and went in to a Café.

We talked for ages. We even took a “little” walk around the Ealing Broadway area, all in an attempt to escape all the noise! Unfortunately, it seems that no matter where you go in Ealing, there is always noise, and PLENTY of it. Yes, our meet and greet could’ve been under a lot less stressful circumstances, but I’m still so happy that I finally went out and actually met a person I can connect with!

Every life is precious

No matter how lost you feel.

No matter how unloved or alone you feel.

Know that there is ALWAYS someone there.

Help may come from the most unexpected of places, but help will come.

Seek it, and you will find it.

 


In memory of Scarlet; a person I once loved.

 

FND, and what it does to me

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.

 

And then…

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.

The big Plan

I need to write this down… These are all things I want to do, want to improve, or want to get used to now that I can actually take the time to do so…

This list is in no way ordered by priority, it’s just a way for me to kind of visualise, and then eventually cross things off that I want to do / etc.

  • Public transport (Taking a bus or two to be more precise)
    • It IS a nightmare, not only because I’m in a wheelchair, but because there are often a lot of people, a lot of noise, and a lot of distractions.
    • At the moment I can’t take a bus for more than about three short stops before I start getting incredibly panicky.
    • The tube, and trains are a nightmare around Ealing, most, if not all tube / train stations have NO disabled access whatsoever 😦 – So for the moment, that’s a bit of a no-no…
  • Consistent schedule
    • This includes things like bedtimes, wake up times, etc.
    • I need to work out what the best schedule is for me, so I both have the energy to do things, and am not up late because I’ve got too MUCH energy.
    • Granted, my energy levels fluctuate on a daily basis regardless of how much sleep I seem to get, but maybe this will help…
  • MEET PEOPLE!
    • Yes, this is one thing I absolutely want, and need to do. I’ve become more and more of a recluse (again) since my hospitalisation.
    • This was one of the biggest problems I had before I was finally able to go out as myself (I.E.: Melanie, not the mask I was wearing prior to that) two years ago.
  • Go Riding
    • Giving it a try is definitely on my list. It might help me cope with every day life a little better. Partly because it’ll (hopefully) be a complete distraction from exactly that.

To be continued…

The big Day

So today has been pretty good, overall.

Despite my continuing sleep problems, I managed to make it to work by 9:15 again. Woke up at around 2am and 4am last night; not happy! D:

The day started like it usually does, but with one twist, and this threw me off completely. Guess that’s just my Asperger’s being my Asperger’s… Our daily stand-up meeting basically turned in to somewhat of a discussion about process management, etc. which in and of itself is fine by me, but the problem was the time it took.

Usually we take about 15 minutes. Today, it lasted for a good 25 minutes. Leaving me nervous and anxious because:

  1. I hadn’t taken my meds beforehand, and I know that being late on those is bad.
    1. Usually it’s no big deal if I’m half an hour late, but when I start getting anxious or stressed, being on time with my meds becomes more and more of a concern.
  2. I had that all important catch up meeting with HR and my Manager scheduled for exactly half an hour after the stand-up was supposed to start.
    1. So basically, this tiny disruption in what I’d come to know as routine, threw me off completely.

I managed to make it to the catch-up, panting and apologizing for being 2 minutes late. Everything was fine. I need to learn to live with these fluctuations; but ever since I lost the use of my legs, everything is affecting me more than ever.

So, back to the topic at hand.

IT WAS APPROVED! 😀

I can’t say how happy I am to be with this company. They are AMAZING people. Basically I’ll now have Mondays and Tuesdays off, so I can start working my way up to a full working week again (Because right now, that’s not possible with any sort of consistency, and consistency is what we all want).

In two weeks, we’ll have another catch up meeting, to see how things are going. If we can continue like this (IE: Am I now consistent in my working hours / output), or if we need to rethink the whole thing. Eventually, the plan is to work up to four days of work a week, and then finally five days again.

I can’t say at this point when that is going to be; but it needs to be “soon™” – The two week review will also include the possibility of going up to four days a week, or other suggestions / alterations.

Whew. I was so nervous about this meeting. I was scared it wouldn’t be approved, and what I’d do if it didn’t.

The rest of the day, my energy levels remained pretty much steady, although, as usual, they started plummeting at around 3pm again, so I left at 4… The goal of this pacing plan is that I can get full days of work done, and not half or three quarter or whatever.

 

As for my mood right now: Strangely tense again, I don’t know what is causing this, but I have have a suspicion, although it may just be the weirdness of FND…

For now, I’m hoping that I can meet someone from one of the support groups I’m in some time soon; meeting someone in person is so much better than chatting on Facebook. If I can make at least one or two friends with the help of this plan at work, I think I’d be pretty well off.

I’m now also ready to look in to possible therapeutic activities that I can do; other than writing this journal. One person suggested that riding might be an option, and to be completely honest? I’m all for that. Some people that know me, may have heard me speak up against horses, but in reality, that was just me trying to fit in.

I did a bit of riding when I was about 12 I think, and I absolutely loved it back then, so maybe the RDA will be able to help me there. We’ll see, for now, I need a somewhat quiet weekend to recharge before I do anything drastic.

I also need to remember that just because I now have those two extra days of “freedom”, I still need to pace myself; I still need energy for work, and all the other days of the week.