all the world's a stage...

For the full story behind this, see this.

November-Present

Things have got pretty bad. Towards the end of November I was seeing the GP repeatedly, trying to get him to give me something to stop me being so debilitatingly tired all the time.

The only thing he was willing to offer was to increase my dose of sertraline from 50mg to 100mg- because I found that the 50mg dose seemed to stop me getting headaches as much or as often, so maybe increasing the dose might help in other ways.

I repeat, while it may be an antidepressant I was not taking it because I was depressed, but rather I was taking it because it seemed to help with my headaches- which is one of the symptoms of my ME. Something is better than nothing, I figured, so I agreed to the increased dosage. 

As I went through this new packet, I didn’t find that I was getting any additional improvement from the increased dosage.

So I’d take one pill a day but sometimes I’d miss a day but as I’d still have boosted serotonin levels in my system, I could just top up the next day and carry on as normal. Thus, it would be one tablet a day or at least one every other day. No big deal.

But as my condition seemed to take a turn for the worst, there would be more and days that I’d lose to sleeping because I’d be so tired and that was all I could do. This eventually led me to missing more than one day at time. It was at this point I realised that this was not working. Because on the second day without sertraline, I got the mother of all headaches.

It occurred to me that I was locking myself into a drug that provided minimal benefit which if I ever stopped taking, there would be a small bit of hell to pay. If I was benefiting more substantially, then it would be a different story. I’ve concluded that I would rather risk the occasional headache without sertraline than the guaranteed mega headache if I were on it and discontinued it.

I think I’ll see how things go without sertraline. Going onto 100mg tablets was counter-productive. If occasional headaches become a problem, I’ll consider taking a low dose as a prophylactic but otherwise I think the SSRI angle is a dead end.

Damn.

What I’d really like is for the doctor to let me try something else. Screw the “official guidelines”. Given that there’s no cure for ME/CFS anyway, lets forget about the diagnosis for a moment and focus on alleviating the actual symptoms. What I’d like is to be able to take something to fight off the constant tiredness and need to sleep.

For the full story behind this, see this.

Days 11-19: Wednesday 5th - Thursday 13th October

With the start of term approaching, things had become busy. I was focussing on making progress with my project work- or trying to anyway.

My GP assured me that as a side effect, my jumpiness would subside over time.

While at the Medical Practice, I discovered something annoying: starting this month, there will a £10 charge to process Extenuating Circumstances forms - i.e. for my doctor to confirm that I’m not making up my illness/symptoms. I do concede that’s in line with what most GPs would probably charge for supplying similar forms of evidence.

Because I tend to think ahead, I usually put a lot of thought into graduate jobs. So, unusually for me, I hadn’t been thinking about it for a while because I’ve just become focussed on doing well this year. Yesterday I popped in to the SSE Placement/Graduate Fair for a bit. It’s mainly for Part 2 students looking for placements but I was on campus and I had some time to kill. I could be imagining it but it feels smaller this year. I’ve had my eye on FDM for a while now so I had a chat with them to get a bit more information. I’m seriously considering it as an option because it would be nice to gain professional qualifications and practical experience which I rather desire.

Freedom and flexibility

Still, it’s annoying because they never charged anything before to do these forms. Hopefully I won’t have to resort to Extenuating Circumstances forms at all this year. Yes, that’s what I think at the start of every year. I aim for it and hope it will be so. This year though, I really think it may actually be the case- but not because of the disincentive of a £10 charge per form. I think I’ll be able to get through this year without any ECFs because I have a lot more freedom and flexibility this year.

Yesterday I met the new “mentor” I’ve been assigned by the uni. There was a discussion on scheduling or pacing of work. which I believe is largely missing the point because my wellness/illness cannot be scheduled. All I can do is work around it. And to the extent that I can pace my working, I do that anyway already.

Now, the times that I’m feeling well there is nothing stopping me and I will plough my way through an assignment. That doesn’t mean I don’t know to take breaks or that I will overwork myself to the point of exhaustion. I’ve lived with M.E. long enough to know better. Something which they seemed keen to reiterate was that I shouldn’t leave things to the last minute. Well, duh! I would actually always aim for an assignment to be completed by 1-2 weeks before the deadline, at the latest.

The problem is that if I’m really not well then however much leeway I plan in, it still won’t be enough. Case in point: I should have fully completed a draft version of my UI design for my project but in the time that I would have done it over the summer (after resits), I haven’t been well enough.

They seemed keen that I have some sort of rigid schedule planned out on paper. That’s just not how I work- I literally can’t work like that. I have to be flexible because I have no way of predicting if or when I’ll be too ill to work. I will work as much as I can (within reason, of course) when I’m up to it so that I won’t fall behind when I can’t do any work. I prefer to plan fluidly. For a plan on paper to be fluid in that way, I’d have to keep revising it. It would just become paperwork. It would be a chore. It wouldn’t work.

If I miss deadlines, it’s not because I’ve not planned properly. It’s because I’ve been ill over such an extended period. No amount of planning will give me back time that I’ve lost to illness.

This year will be better because I only have two hours of timetabled lectures a week while the rest of the time I will be free to work on my project.

I’m not against scheduling. I guess I just haven’t found a way that fits my style. I can organise myself well enough. I just need enough flexibility to do it.

For the full story behind this, see this.

Day 9: Monday 3rd October 2011

Heatwave continues. Again not much to say here because I would just be repeating what I said the previous few days! (Too hot, can’t think!)

I noticed that I got a link wrong in the main article. Fixed it now. Not that it matters much because I doubt these posts have that many readers. I’m making these posts mainly as a personal record.

Day 10: Tuesday 4th October 2011

Definitely cooler today. Lovely autumn weather. Such bliss.

I can finally think properly. Finally able to develop my design for my project.

Have booked appointment with GP for tomorrow to ask about the jumpiness. Will wander around the Freshers Fayre (Fair?) too.

For the full story behind this, see this.

Day 8: Sunday 2nd October 2011

I was wrong. It was not cooler today. Well, it started off cool first thing in the morning but as the day went on it just got hotter.

I think I’ve noticed something that may be a side effect of this sertraline I’m taking: I seem to be quite jumpy these past few days. Just now I was in the kitchen and I jumped when a housemate entered from the hallway.

You’ll probably think you probably would have jumped too but the thing is, I usually wouldn’t - or at least not as much as I have been. Usually I’ll just notice and glance up at whoever is approaching and it doesn’t make me jump. I don’t know if maybe it’s because my senses have been affected somehow or I’m less aware of my surroundings or what.

I’ve never felt nervous or anxious and I’m not feeling nervous or anxious now. I’m sure I’m not developing a nervous disposition.

For the full story behind this, see this.

Day 6: Friday 30th September 2011

Heatwave continues. Not much to say here because I would just be repeating what I said the previous two days! (Too hot, can’t think!)

Day 7: Saturday 1st October 2011

It felt relatively cooler today than previous days. I say relatively because I was still roasting- it couldn’t have been more than a few degrees less.

Was to be able to concentrate slightly better because it wasn’t as warm- sertraline or otherwise.

All this time though I think the sertraline has been working at least somewhat because I’ve had fewer or no headaches. And normally, my problem with headaches is compounded by high temperatures and I would have a headache the entire time.

I’m falling behind so much with my final year project - i.e. I should have made more progress than I have by this point - but hopefully conditions will be more comfortable over the coming week and so be conducive to productivity.

For the full story behind this, see this.

Day 5: Thursday 29th September 2011

Can’t function in this heatwave. 

Still getting temperatures in the high 20s (°C). I think I’m starting to acclimatise at least so perhaps tomorrow will be better.

With my windows open, my door open and the fan on, I finally started finding the temperature tolerable. But it’s 11pm. Damn.

This is stupid. I have to work on my project and this heat is stopping me.

For the full story behind this, see this.

Day 4: Wednesday 28th September 2011

Today was horrible. But not because of the sertraline.

Apart from the initial reaction on Sunday when I start taking the sertraline, I haven’t had any adverse effects. Although perhaps it’s still too early to tell.

No, today was horrible because it was so hot. We were getting highs of 27 °C. I’ve always been sensitive to heat - I like it cool… bring on autumn/winter! - so this was not pleasant. Anyway, ended up being exhausted by the heat most of the day.

I hope it will be cooler tomorrow.

For the full story behind this, see this.

Day 3: Tuesday 27th September 2011

I actually missed my dose today because I got carried away with my new found wakefulness and went to sleep late, last night. I then got up today around 1pm. Was tired either because of that or because I missed my morning dose.

I know I shouldn’t have done it but I ended up having a nap in the evening. I woke up again at 4am and decided I should start my day because I have a lot of work to do.