Month: March 2016

Achievement Granted

So, the past few days have been both intense and… Weird I suppose, not sure which word I’m looking for here to be honest.

After three FULL days of work (Which I’m quite proud of), I had to sleep for 18 hours to recover (That was pretty much the entire Saturday).

It’s not something I’m happy with; but I’m hoping that, as time progresses, those hours will go down as I get more used to working full-time (For three days at least, for now).

I’m a little worried that I won’t be able to adjust, but only time will tell that. For now, all I can do is hope!

So apart from playing a lot of KSP at the moment, I’ve also reached out to friends and support groups on the fessbewk, with great success so far! 🙂

I’m so happy that people actually want to meet me, and seem to genuinely enjoy the time we spend together (And yes, I did enjoy the meet ups so far! Hope they continue).

Today, I meet an old colleague (We never really interacted at work, but well, happy she friended me on fessbewk!) and I genuinely enjoyed it this time as well! We’re planning another meet up in a couple of weeks to play a bit of board games 😀

So, after having a bit of coffee and small snacks, we went to the shopping centre, and I finally got around to getting my eyebrows done again; sheesh, the difference that made xD

Also bought a few bits and pieces of clothes, some knitting needles and some very cheap yarn… I did knitting as a child in school, and I really liked it back then, so I’m hopeful that I still have the dexterity in my hands to do it again; just need to find some simple “recipes” and then see what happens!

On the Menu for Monday is, hopefully, getting rid of some of all the rubbish that has accumulated in my flat again… *sigh* I just don’t have the capacity to do it on normal work days, or after “going out”…

 

In other news; I just retrieved a letter from my postbox today, informing me that I now have a home visit from a “qualified health professional” scheduled for the 24th of March (Which is a Thursday *eyeroll*). So another thing for Monday: call “Atos” and ask if they can reschedule that for a Monday or Tuesday, and then “pray” that it doesn’t affect the outcome.

My manager is being… Very formal and seemingly quite strict about the whole “three full days” at work, and I’ve promised to do everything in my power to schedule appointments on Mondays or Tuesdays. Sometimes that’s not possible though :c – And well, next week I have an appointment on a Friday (Wheelchair clinic), which he was quite unhappy about… We agreed that I’d be in Tue-Thu instead of Wed-Fri next week, which kind of throws me a little off balance, but if I can manage to get things under control, everything should be fine.

Another day

So, today I was actually able to sleep a little longer than on a normal work day.

I had to get an injection (Which I get every 28 days). But the problem is/was that my appointment wasn’t until 11:20.

This meant that showing up for work at 9:00, or even working from home for an hour would’ve been pretty pointless (At least that’s what my manager and I agreed on).

I must say I’m a little confused at the moment. On one side, I have this amazing new thing going on at work, that’s supposed to help me get back to a normal, 5-day working week. But on the other, I also have doctors appointments galore that I need to keep up with, and the particular problem today, apparently, was that it fell on one of the days that was allocated for work.

Unfortunately these appointments aren’t easily re-scheduled, and in particular not this one.

So okay, fine, I took half the day off my annual paid leave; which my manager immediately got worried about, because he was going like “Oh but then next week when you have that appointment with the wheelchair clinic, you’ll have to take another day off, and then maybe HR won’t be happy”.

I can kind of get his worries, and I appreciate them, but I also have to look at this from my perspective.

No, I’m not simply calling in sick because I’m feeling exhausted, or half-dead, or leaving early because I’ve run out of spoons unexpectedly.

These are routine appointments that I have to keep, and if I can’t do that while also working actively towards a better “me at work”, then I don’t know what else to do.

In the end, we came to the agreement that next week, I’ll be working Tuesday-Thursday, instead of the agreed Wednesday-Friday (Which I’m fine with by the way; it’s a way to solve their issues, and I can appreciate that).

But when the time comes for me to go back to the full 5-day working week, will the attitude be the same then? I can’t just put my well-being aside for work, that’s not how it works, and I know that HR is in complete agreement with that.

More doctors appointments than ever is a reality I’m still struggling to accept. But I have to; otherwise I’ll fall apart entirely.

I always try to schedule appointments either early in the morning, or late in the afternoon / evening, but people have to realise, that some of my appointments aren’t scheduled by me. I have no influence over when or where they take place.

 

Oh well, enough dwelling on that. In other news, did my first hand over in the new team today; yay. Team dynamics still need quite a bit of work, but you know, we’re getting there :3

Shot down

Even though today was pretty good, I have to admit that right now, I’m not in a great place, but let’s get back to that in a minute.

First day back at work after the new pacing plan was put in to effect. I did have a horrible night last night but, crucially, I actually managed to get to work on time, and be pretty productive.

I didn’t get tired at 2, or 3, or even 4 today. Managed to finish off a few bits and pieces of work. Ate a bit; then started optimising a few things because heck, there wasn’t really that much else on my plate at that point in time.

At about 5:30 I left the office for home, in the semi-darkness that this time of year brings. First thing I do, naturally, is check my post.

Two letters; one from Ealing Council, and one unmarked. I was hoping the Ealing Council letter would be the final conclusion to the old flat (I still need to pay council tax for a month, and can’t seem to do so for some silly reason…) – But no, that was just a letter informing me that “Hey, we haven’t raised your council tax” – Fine, whatever…

On to the unmarked letter. And this is where things start getting hairy for me.

IMG_20160309_173626

Oh yeah… Conversion Disorder… There it is, that nagging sense that the person who wrote this is reading from an utterly outdated script on what’s acceptable for them and what’s not; what’s “too ill” and what’s “just right”.

I referred myself to IAPT because fuck, my mood is going down the drain because I can’t do the things I want to any more. Or well, at least not in the way that I’m used to. All I wanted was someone to help me cope with it. Instead, I get this.

This load of bullshit on how I’m “too mentally ill” (At least that’s the subtext I’m getting here…) for them to offer me any support.

The whole reason for why I referred myself to IAPT was because they SPECIFICALLY offer help in dealing with a disability, and staying at work in spite of it.

Yet this person, decided that because I mentioned the frequently used (and misused / outdated) alternative name for my condition, they cannot help me.

“Also, oh yeah, we realise of course that you’re also waiting for the GIC, and oh I can see in my system that you’re already under a mental health team, please liaise with them”.

Well if it was so fucking easy, don’t you think I would’ve done that already? I didn’t even know I had a “Care-coordinator”. And oh by the way, I haven’t seen them yet, and apparently won’t until the 11th of May.

Also, the care I received through “secondary care mental health services” was while I was in hospital, falling apart at the seams because of what was happening to me. Yet none of them actually found my mental health to be the cause of my problems / symptoms.

 

I’m tired.

Tired of being treated like the proverbial hot potato that gets chucked around the medical community for not fitting in to one box.

And now I’m really starting to freak out, because I know there are so many other people out there that have been at this for way longer than I have.

Real people with real problems that needed help, but never got it because someone stamped “unsolvable – do not touch” on to a piece of magical diagnostic paper somewhere.

FND is not a mental illness, and I need to say that because a lot of people think it is; even in the medical community. And thus, we’re told to seek help through psychological or psychiatric services, with the goal of “fixing” our symptoms.

Reality check: The biomarkers to suggest that this is the case are not present, for a lot of us. Me and myself included (Hah, see what I did there?).

Because of this inherent stigma that is attached to our diagnosis, even the most basic of help is denied. Because to them, we’re a “complex case” that needs specialist equipment and training to be treated. We’re not people to them, and THAT pisses me off.

Keep in mind, I’m not trying to say that mental illnesses aren’t real (And this apparently needs to be said every time someone touches the subject), I know this, I have mental health issues myself, but FND is NOT one of them!

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.