Category: Journals

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

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.