Monday, February 15, 2010

Facing reality

This is a kind of good news/ bad news post.

I've been keeping an exercise/ food chart for the last 2 months in an attempt to track my 'recovery' from the latest ME/CFS relapse. Basically it's not good. I have spent almost 50% of the time in bed since starting the diary.

I've sat down today and had a real hard look at what I need to do with my course as opposed to what I want to do.

I WANT to get my head down and plough away at this work and graduate with the rest of my year - preferably with a decent grade but, if I keep on like I am this has zero chance of happening.

I'd thought that by carefully timetable maintenance and pacing I could do the catch-up I needed on last semester while maintaining the work load for this semester but just a glance at the red crash dots on my chart shows me how sadly mistaken I was.

Looking at the crash chart, I've worked out that I can manage AT BEST 4 hours of solid work a day - so long as I also get in at least 2hrs of rest immediately afterwards, otherwise I'm comatose for the next 2 days, some days I can manage only a solid hour, especially if I have to look after Isabella/ clean/ cook/ travel etc.

..and this is just an estimate, it may be that I can't even manage that without triggering a crash.

When Sylvia (the support lass) first brought up the suggestion of deferring my project I immediately said NO! but that's now under the heading of want not need. It sucks. REALLY sucks.

I don't know if taking an extra year will be financially possible, I know I can't get funding from the SLC for another year (this is my 4th year of student loan) so that could cause problems, but.. i guess I'll have to cross that bridge if or when it happens.

Just by deferring the project as she initially suggested will remove not only a large amount of course stress but will allow me to schedule in proper rest breaks and allow me to recover from the daily exertion of thinking/ walking/ dealing with baby/ housework and numerous other things that people without my conditions can do without needing to think about how and when they can afford to do it:

This was the schedule I was trying and failing to keep, as you can see there's not a rest break in sight:

So, just by losing that one module, I get adequate rest, I can devote the full weekend to my family instead of using those days to do homework/catch up on work I've been too ill to do in the week and will be able to gain the grades I need for a decent degree instead of struggling just to scrape a pass.

The other plus side to deferring my project is that it is based upon elements i'm studying in the other modules this semester - deferring until they are complete will leave me in a position to create an even better web application than the basic one i'm currently looking at - hopefully.

so.. disregarding the finances, it's win-win and the decision is made. here's hoping the exam board see it the same way.


Myzdamena's World said...


I really feel for you.. I remember when I was at Uni, seeing loads of other people piddling their lives away at the student Union.. while all I really wanted was to retain all I studied in my head and failed miserably...

I ended up with a 2:2 in the end but I know I should have got a higher grade had I just been able to concentrate! ... even when i felt 'well' my brain was off with the fairies a lot... I used a dictophone (yes I'm *that* old lol) in lectures and when I was writing it up it seemed like someone else had recorded it, even though I was concentrating as much as I could!

G xxx

LazySusan said...

Hang in there. I have found that a lot of doctors don't really believe in CFS and they seem to think I was making it up, but the book "Beat Sugar Addiction Now!" is written by a doctor and he knows so much about it. I feel like I learned a lot about my own body just by reading the section on CFS, and it made me annoyed that no one had told me this before. I started reading the book because I thought it was a diet book and would maybe help me lose weight, and if I wasn't carrying around so much weight maybe I would feel better overall and be less achy. But it's actually a whole part on CFS is in it and I learned a lot about my hypothalamus that I never knew before. The information is good and smart science but not too hard to understand. You need to find help if you have what I have-so much pain it hurts to pull my shirt over my head or bend down to tie my shoes. I had to start wearing ugly crocs just because they were easier to put on and more comfortable, and that is not who I wanted to be-a fat person in unstylish shoes who has trouble getting in and out of the car. I feel like if I can find a doctor who will help me and I can do what it says in this book, I will get a lot better. It is written very convincingly and you can tell he knows what he's talking about. Plus he has a list to help you find doctors that treat CFS and I am ready to get treated and stop feeling like my nerves are exposed every time I move. Here's the website for Dr. Jacob Teitelbaum: