Month: March 2016

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…
    • 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.


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.

The first Journal Entry

So, I guess I’m finally doing this… Let’s see how long this one lasts.

Today has been… Another one of those weird days. Started out oversleeping; again, but actually managed to make it to work on time.

Slept really crappy, woke up around 2am, and then again at about 4am, first with burning feet for some reason, and then with burning hands… So much for those splints.

I made it to work at about 9:15, through a confused bus-driver and a few people that had to step off two stops in a row… Sorry!…

The day started fairly simple, “stand-up”, the usual… Finally had that intro meeting with my manager today, and overall, I think he liked me.

Now comes the tough part I guess… Trying to explain why I can’t do a five day working week, because right now, I just can’t.

Towards the end of the day my anxiety levels started spiking again, I have no idea why… Probably because I once again had to explain that I may go down to a three-day work week for a while, which once again brought back the dread of losing my ability to work.

Right now, I’m just sitting here, shivering and shaking, both sweating, cold, nervous, anxious, just… Being bombarded with everything that’s going on right now.

I hope that tomorrow will be better.

I hope that I can sleep at least somewhat better tonight, since tomorrow is the day it’s all going to be decided I guess.

Meeting with both HR, Line Manager and his Manager.

I didn’t get a lot done today either. Yesterday was a lot better in that regard. So that’s just adding to my frustrations right now; at least I took the rubbish out again!

It’s hard to explain sometimes, how doing one thing, that to most people seems so trivial, can have such a huge impact on my energy levels. I don’t know how to deal with that part of my new self yet, but eventually I hope I can cope.

I hope so desperately to not lose my job. Without that, I wouldn’t know the first thing about how to survive. Where would my income come from? How would I pay the rent? How would I pay off the loan that I was forced to take in order to get to a reasonably accessible flat?

All these questions. And I have none of the answers. It’s driving me nuts at this point.


This will pretty much be updated on an ongoing basis, but for now, here’s a “little” FAQ:

  • Who are you?
    • So first of all, the answer to that question is very complex.
    • My name, first of all, if you didn’t know, is Melanie.
    • I was born in 1988, yeah, feeling pretty old now…
    • I have Asperger Syndrome
    • I have recently been Diagnosed with FND
      • I can’t stand, and I can’t walk. I use a wheelchair to get around everywhere, and unfortunately, for the foreseeable future, that is the way my life is going to be.
      • (This is one of the reasons for why I’m doing this as well).
    • I’m tall… Really tall… 185cm… Or 6’1″ if you want it the antiquated way.
    • I’m transgender, specifically, Male to Female.


  • Why are you doing this?
    • Because it’s a way for me to my thoughts out there… I don’t care who reads them, or if anyone does for that matter. This is for me, not for you (I know that sounds rude, but that IS what this is intended for).


  • What’re you going to post here?
    • Mostly, probably journals.
    • They’ll be quite personal, be warned.
    • But I’ll also probably post the occasional rant.
    • Or comment on a topic of relevance for me.
    • Or many other things. Only time can tell at the moment.
    • The main reason for me creating / re-creating this blog, is so I have ONE place, that I can access from anywhere, where I can put my “stuff”