Wednesday, December 29, 2010
Friday, November 26, 2010
Thursday, November 11, 2010
..and the tantrums! Any response contrary to her desire is met with screaming, kicking, pinching, biting.. The other day she got to me so badly that stef had to take her out of my sight so I didn't pick her up and throw her across the room in a rage.
It's hard enough to cope with her being like that when I feel well but the me/cfs has kicked in with a vengeance and so lately i'm either fatigued, in pain or completely brain dead (or all three) and it's really hard to keep a lid on my temper when I'm tired or in pain.
I KNOW she's just testing her limits and in the process pushing me to mine but i really feel sometimes I can't cope with it - and this is a child that 'everyone else' says is 'just a normal kid'
I KNOW that. ..But 'everyone else' doesn't have to deal with the kicking and biting and pinching on a body that is so worn down through illness that even the slightest knock feels like it's been administered by a baseball bat wielded by a giant.
I've managed to mostly stop the biting by dint of biting her back when she does it, pinching back doesn't seem to have the same effect sadly because then she thinks it's a game and pinches back even harder
..and hitting is out of the question (though she does get a slap on the fleshy part of her leg if she pushes me too far when I'm fighting with her to change her nappy and there's shit going everywhere - roll on being potty trained!)
Stef took her out of the room because I had to turn my back, clench my fists and literally hold on in silence until the red mist left me - if I'd had to speak or do anything it would have been something i'd regret.
it's possible that part of the reason i'm so bad at the moment is just down to being a parent - stress and bottled up emotion play havoc with your system and i'm so angry so much of the time at the moment - at bella, at stef, at myself.. it's hardly surprising i'm sliding back into a pre-relapse state.
Just need to get through this next 2 years - that's what I keep telling myself; get my degree and have a year out to recover.
If I can.
Monday, October 25, 2010
Wednesday, August 11, 2010
Tuesday, August 03, 2010
Digital Entertainment Systems: A1
Web Application development (design): A3
Professional Issues in computing: A3
You see those grades? they're mine they are *grin* ok, ok so what if it took me an entire academic year to do it!
..Considering I've had 74 days (that's right, just over 2 months) bedridden by fatigue (and that's not counting any crashes prior to the diary count starting mid January otherwise it would probably be at least three months considering I lost most of November and December which necessitated the deferrals in the first place) and god knows how many other days I lost to the joys of brain fog (I'm never mentally aware enough on those days to think of keeping count!)
Lets put it this way - I'm on track for a first class honours in my specialist degree subject so it's worth the blood sweat and tears of studying with ME/CFS and a toddler.
- I'm working on several websites (mine and other peoples)
- updating and improving my knowledge of wordpress for this very reason (so a fair bit of reading)
- I'm researching and organising ideas for my final year project (which funnily enough involves the need to understand wordpress VERY well)
- I'm creating several 'how to' videos for the ESCAPE project at uni.
- making time to re-read my notes and try to keep what I learned to get those A grades fresh in my mind (important to do when you have CFS memory to contend with)
Friday, April 23, 2010
Thursday, April 22, 2010
Tuesday, March 16, 2010
It was actually a rather swift and painless process thanks to my needs assessor, he was lovely!
I've had my provisional needs assessment sent off to be approved by the LEA so fingers crossed that will happen before my course ends (since I'm still waiting for them to stop asking for information to assess my maintenance grant this could be a while)
..Assuming all goes well and it gets the big green tick though i'll be the happy possessor of an ergonomic chair and footstool and some software called mindview that I'm convinced will make my revision process a lot more constructive than it usually is!
With 5 exams to revise for this is of the highest priority! I'm actually seriously considering downloading the free trial to try and make a start on all of that now - I've only got just over a month before the exams themselves so time is of the essence!
Sunday, March 14, 2010
I've had an interesting few weeks. Someone up there either REALLY loves me or is just 'avin a laugh at my expense.
The whole thing started when I got an email through from a site I'd signed up to telling me that I needed to contact Kev on this mobile number asap as he had some good news for me. I had a sneaking suspicion I'd won something as i'd been getting emails through saying the competition deadline was approaching.
Monday, February 15, 2010
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.
Thursday, January 28, 2010
Let me explain.
The ME/CFS made a reappearance quite a few times between October and December of last year, then the Menieres made my life hell over the 3 week christmas break because I ran out of the betahistine tablets.
I couldn't get any more because of first the snow and then because I was too incapacitated to write and take in the letter to the receptionist for my prescription (couldn't find the printed repeat and my surgery asks for a signed note asking for a repeat in those circumstances)
After the Menieres kicked in, it triggered a full on ME/CFS relapse then just as I started to get over that my daughter had the flu jab and gave me a stinking head cold that once again set off the Menieres and the ME/CFS
So for the best part of 3 months I've been stuck in bed unable to do my work, stressing about my inability to do work and getting ill - vicious circle.
I missed 2 exams, web application design (WAD) and Professional issues in computing (PIC) and despite being told I could have an extension on my digital entertainment systems (DES) assignment I've been unable to do ANY work on that as I had to concentrate on my Principles and Applications of web services (PAWS) exam and the portfolio for WAD.
SO, I managed to attend my PAWS exam, I think I did enough to pass despite leaving a few of the questions unfinished (started feeling a bit pants so left the 3hr exam after 1.5 hours) and I've got about 50% of the portfolio done and an extra week from now to finish the rest - which ME/CFS allowing is doable.
My support worker and the individual tutors have been great, assuming I can get the relevant documentation for my Dr (and I can't think what reason he could have not to give it) I can defer the 2 exams and the DES coursework until summer so that I can get the new semester over and done with without the extra worry of legacy work.
On top of which, I've been approached to do a conference workshop in the summer with the 2 project leaders from the CABLE group I was involved with last year - so despite my crap health, I obviously have useful knowledge and experience which leads me to be hopeful that I will be able to find a job at the end of this!
Lets hope so eh?! I'd hate to think I was killing myself for no reason!
Monday, January 18, 2010
Despite everything last year, I managed to come out with one of the highest grades in our Foundation Degree class - this is an achievement of which I will always be proud!
However, this academic year has been a complete bust so far as the ME/CFS and Menieres is concerned. I had a very emotionally charged piece of news back in October/November which led to a rather hefty relapse, trying to come back from that with a ridiculous course load and a very active toddler has proven to be a task of herculean proportions.
My recovery was further hampered over the Christmas period when I ran out of the Betahistine prescribed to me to help control the Menieres - any doubts I had about their effectiveness have been firmly silenced having spent the best part of 2 weeks bedridden with dizziness, ear pain and nausea yet 3 days after restarting medication I'm back to ME/CFS 'normal'.
I've managed to obtain an extension for one piece of coursework but even so it will be tight, one exam has passed and I'm unsure as to whether I've made it on to the next module despite studying as hard as I possibly could for it, the other 2.. well fingers crossed eh?
Next semester should be better, according to my timetable I'm only in for 3 hours a day, 2 days a week which means I'll be able to actually pace myself and have set mealtimes again; regularity and a decent schedule are half the battle in managing this condition I've found.
..so lets just pray I've managed to get enough marks to pass the current semester because if I have to re-take anything I may as well give up now.