Monday, August 17, 2009

Am I unemployable?

I'd forgotten just how horrible a full on relapse is.

The fizzing sensation in your limbs, the terrible heaviness of everything, the aches.. it's an act of will to even type as all my hands want to do is give in to the pull of gravity - no wonder we're so frikken tired all the time, we're constantly fighting to move; every action is conscious.

..by that I mean normally when you want to pick something up you just go to do it but when everything is this hard it's like you..

imagine an action is a calculation; lift arm + open hand + guage distance + use correct force = object lifted.

Normally that calculation will occur without you even realising it, but right now I'm still computing the steps needed to complete the action as i'm taking them.

It's like i'm an overheating computer with a broken fan that has too many processes running in the background; i'm on a go-slow and things are starting to malfunction.

bah! i doubt i'm making much sense.

Lets just say i'm starting to really worry about my ability to successfully complete my degree next year; never mind my job prospects afterwards! who in hell will employ someone that will have to take days off because they physically can't get out of bed? who could 'crash' at work and will need to lie down, unable to communicate in more than grunts and will need carrying to a car to go home?

Working from home is my only real option. But will it pay enough? and to do that I'd need to move somewhere that we had an extra room so I could work undisturbed - how can we afford that? we can only just afford this place.

*sigh* I'm beginning to wonder why i'm bothering with this degree. I'm going to be stuck in the me/cfs trap forever. Please god let them find a cure!

Sunday, May 31, 2009

Prompted by questions

ME/CFS is a difficult beast to describe, not only are the symptoms varied - both in type, frequency and intensity, they can differ from person to person.

On top of that, there are things to take into account depending upon what 'stage' of the illness you are at - and I don't mean 'beginning, middle or end' because for a person with ME/CFS there is no end and the beginning and middle are just an ongoing cycle of good and bad periods.

No by 'stage' I mean one of the cycles that exist in my mind regarding my own personal experience of it:

Denial
By denial I mean, you and everyone else disbelieving it's something other than stress/ over work, thinking that you can just push through it and then wondering why you feel worse every time you do something.

Boom and bust
You have good and bad days, on the bad days you stay in bed - on the good days you try to make up for the bad days and over do it.

Limbo
You finally get a diagnosis but they can't treat or cure you, no one knows or understands what is wrong with you and you try every 'cure' you hear about following extensive research online

Fear (masquerading as pace)
You've tried CBT and GET and you got worse, you cut out caffeine, dairy, sugar, fast food - anything that might be a trigger, you stop going out, you barely do anything around the house, you just spend 90% of your time 'resting' - all because the thought of triggering a relapse that makes you worse than you are now scares the shit out of you.
Getting past that is the hardest part of this illness.

Acceptance
You realise that it isn't going away and that living in fear of a relapse is what is crippling your ability to enjoy life, you start to do more and just succumb to the 'crash' when it happens.

Boom, bust and pace
You start to do more again but keep another exercise diary so you can try and judge the level of activity you can take before you crash, after a few weeks of this you sort out a routine, get depressed when it doesn't seem to help - at this point you either go back to the fear cycle or move properly onto pacing

Pace
You start with one activity a week - mental or physical (its how I did it) and cut it down into individual tasks that you spread out over the week. a couple of weeks later you up it to two activities - again split into tasks. The basic rule that worked for me was 20mins work followed by 20mins rest (and rest was sitting down and concentrating on my breathing - try hard to think of nothing else)

It took me around 2 years but I was finally up to the stage of doing a 10wk course (4hrs a week) on using Photoshop and dreamweaver - I was knackerd but being with other people and using my brain again made me feel better than I had in a long time!

Some people find it harder to cope than others for various reasons as it's really hard to come to terms with losing your life by degrees and its bloody hard work clawing it back - especially when you don't feel as though any progress is being made

This is where the exercise diaries are golden, I look back at my blog in the early days and look at the medical file/ benefit claim file and other documentation and can't believe how much I've improved.

I put it down to three things:
  1. Diet; I've cut out alcohol, most caffeine (we don't count chocolate do we folks) processed foods and carbonated drinks (well, naturally sparkling water like badoit is still on the allowed list, dandelion and burdock is not)
  2. The love of a good man; Stef has not only been the person to carry me to and from the bathroom during the bad times, he's seen me through the intermediate stuff as well, he took on the housework and cooking so I could study and build up my self confidence again, he's pushed me to try harder and been there to pick up the slack when doing so has made me crash, making me feel that it's ok to try and crash - so long as I try. He's always telling me how proud he is of me and how great I am.. Without him I'd still be stuck in the fear cycle and that is truly no way to live.
  3. Sheer determination combined with a positive attitude; easier said than done, this illness will beat the positivity out of you without somebody like Stef cheering your corner. You need help and support all the way - ESPECIALLY when you hit a bad crash following a really good spell.
I'm not cured, no way - but I have a pretty fantastic life despite it, my daughter is proof of that:

video

Tuesday, April 14, 2009

WooHOO! ..and BACK!

Yup, my brain appears to be functioning again.

This last week I've managed to complete my first programming assignment, most of the final report for my work based learning project (including poster design) and today I completed 1/3 of my first multimedia assignment - if things go according to plan then that one should be completed and submitted by this time tomorrow evening!

I still have 2 HCI assignments to do, stats to gather so that I can finish my WBL report and more content to add to the WBL website - all before Monday.

No sweat, 5 days is plenty of time so long as the CFS/ME stays away. I figure Thursday for HCI1, friday for HCI2, Saturday to collate stats and finalise my report and Sunday to finish website content and poster design.

Then on Monday I get my poster printed and laminated, submit all work and et voila! I'm bang up to date again and looking to get the GOOD grades!

..all I have to do then is buy an outfit suitable for a business presentation, start and complete the 3 assignments I've not even looked at yet because the deadlines aren't until May, revise for exams and FINISH THE YEAR!

..I can't wait!

I sooo deserve a holiday!

Friday, April 03, 2009

Bugger.

I went to the doctors the other day to get a letter for college so that I can get a blanket extension for all my coursework. The previous menieres/ ME/CFS relapse certainly did me no favours regarding deadlines so I need a note medically validating the fact that I'm useless.

..ok, not 'useless' but very much not up to speed.

While there I mentioned the trouble I've been having with my left arm and it turns out I have rotator cuff strain - all I know is it hurts, but then with the me/cfs aches I'm kinda used to that - it was proved beyond a shadow of a doubt during labourwith Isabella that my pain threshold is actually pretty high (despite opinions to the contrary) but I figured I may as well mention it - good job I did, if left it could turn pretty nasty apparently..

Unfortunately she seems to think that I could have post natal depression; I think she just doesn't know enough about the illnesses I already have. Yes I get down, depressed and hopeless. Yes I have feelings of low esteem, tiredness, trouble sleeping, little energy or appetite and have trouble concentrating on things - but show me one person with a chronic fluctuating illness who doesn't experience all of these things on and off!

Saturday, March 07, 2009

Whatever happened to pacing?

I've not managed to find a rhythm since having Isabella. I got too used to being 'normal' again while pregnant and seem to have forgotten my coping mechanisms for the ME/CFS.

This is not good.

For example, last month I overdid it, really overdid it.

On top of spending practically 8 hours a day solidly working on my coursework then coming home and washing up, seeing to Isabella and being sociable, I also managed 2 consecutive nights out.

This started affecting me and I've been having to lie down for an hour or so in the day again, but did I cut back/ slow down? No.

I continued to stress about assignment deadlines and work solidly whenever I had the chance and we weren't visiting the in-laws.

This is the real reason my last post happened, I'd handle full time care of my daughter just fine - if I cut back on everything else.

I was supposed to go out last night but because I've been having a full on crash at least once a day since last week when I had Izzy to myself. I just didn't want to risk it, I still get upset thinking about the last time I crashed in a nightclub; how an unknown male had his hands all over me and was kissing my neck while I was unable to move or fend for myself - not the most pleasant experience I've ever had!

The problem is, I don't know how to throttle back - I have so much to do and so little time in which to do it:
  • There's my work based learning project; I still have to finish uploading content to the website, create questionnaires for the users and write a report based on the feedback to go into the relevant part of the final report (which I need to have completely finished in 3 weeks time)
  • I have a multimedia project in director to complete - the draft by Tuesday and the complete project by the end of the month
  • A text based game to create in Java, the design has to be done by Wednesday and the actual game programmed and written up - by the end of April
  • I have a HCI project to do - by the end of the month
  • I'm organising a group for the cable project at uni and all of this needs writing up and sorting out by the end of june
  • I'm student rep and am spending a lot of time at meetings at the uni
..and all of this is on top of a home life, I need to spend time with my daughter, we have to take her to visit people, the house needs cleaning, we have to shop/ feed and otherwise get on with things.

is it any wonder the crappy illness has come back and that the menieres disease has kicked in on top?
I'm stressed at the thought of missing deadlines - especially now that I've fallen further behind as I couldn't concentrate on anything last week so no work was done.

My arms feel like lead, I'm forcing myself to get on with stuff even though I know I'm going to suffer for it. I need help! The way things are going it's only a matter of time before i have a full on relapse and end up bedridden again.

But I can't seem to shut off, these things NEED to be done. Stef can't work because he's looking after Izzy, but I don't get DLA so he can't get carers allowance, he can't get JSA because apparently my student loan is enough for us both to live on (um.. hello?! it's a DEBT it's not income, it's fecking disgusting that if we were living apart I'd STILL get the loan but he'd also have an income) and because he's not getting DSA we still have to pay full council tax - despite his having NO income and me being a student.
So because I'm having to use my student loan to house and feed our family I can't afford to get the new laptop I need and I'm having to make the trip to the uni library every other day so I can use the software I can't afford to buy and look at the REFERENCE ONLY books I can't afford to buy which expends more energy that I don't have.

It sucks.

I'm just praying that I will end up with a job that pays enough to make this all worthwhile, and that I have the energy to actually do the job once I get it!

..as it is, the loans which are paying to house and feed us won't be paid off for at least 55 years according to the msn student claculator - and if I have a relapse we are royally screwed as if I can't attend uni I won't get the loans, by the time the benefits orofice get their finger out we'll be homeless as I can't see the landlord waiting 6 months for backdated rent seeing as he didn't want to take on dss tenants in the first place..

Is it any wonder I'm stressed?

Wednesday, February 25, 2009

A tad dejected

Yesterday is the first time I've had full time care of Isabella since she was born (from waking to bedtime) and it's only because Stef is helping his sister move house. It was great and I can see why he's so happy to stay with her instead of working and leaving her with his mum as we'd originally decided.

The only problem is; that one day has left me bed bound - full on CFS/ME crash happened in the night and I'm still recovering from it - it's also had the knock on effect of setting off the Meniere's so I'm basically deaf and knackered today.

God help me when she starts crawling/ walking - how on earth can I hope to be a 'proper' mum when just one day of caring for her leaves me bed bound?

He's helping his sister again today so Isabella is with his mum and I'm tucked up in bed with the laptop, mobile phone, packed lunch and bottled water attempting to concentrate on the HCI assignment due in today and the questionnaire I need to email out to my WBL client for her students.

*sigh* at least I'm not a single mum, I'd be hospitalised and she'd have been taken into care by now.

What's worse is the 2 lessons I've missed today because of this are the 2 I most need to attend! It's frustrating to say the least!

..but it could always be worse, I have a roof over my head and food on the table beside me, internet access (always a good thing) and I've got until 11 to get the HCI in and even if it isn't to my 'usual' standard it's 'only' 20% of the mark, I've got tomorrow to rest up ready for Friday and a gorgeous daughter to cuddle and love - when he brings her home
So.. Work!

Monday, January 19, 2009

Back to normal

It's been nearly 5 months since my daughter was born, in that time I've tried to get to grips with motherhood whilst staying on top of my coursework. It hasn't been easy.

I missed the first 6 weeks of term because I was breastfeeding, that and I was just too knackered to consider anything outside of newborn hell - ME/CFS had prepared me for being constantly knackered but this was even beyond that because of the emotions.

I now know how to describe CFS to any couple who've gone through the child rearing process, well, what the brainfog and fatigue is like anyway; Imagine having the flu 4 weeks after your child was born, just as she's coming out of a growth spurt..

Horrible isn't it?

Sadly, despite managing to boom and bust my way through the rest of semester A, this last week it has all caught up on me in a big way. I really can't tell if it's just the menieres or the ME/CFS any more. I've had definite menieres attacks - at least one every day for the last week.
I've had dizzy spells, nausea and ear pain, tinnitus, splitting headaches and full on fatigue in waves.

2 days ago was definite ME/CFS as I awaoke at 06:30 to go and make Izzys bottle only to find I couldn't get out of bed. I was stuck there until just gone 12 when I managed to haul myself along the walls to the bathroom and then promptly collapse on the couch until around 9pm.

The only interaction i had with my daughter was when Stef laid her between myself and the back of the couch for her afternoon sleep. This is getting to be far too familiar.

I've hardly dared to pick her up because:
  1. she is now so heavy I struggle to hold her for long periods of time and
  2. The dizzy spells have been coming on so quickly I worry about stumbling with her in my arms
#2 is a very real worry as I'm currently covered in bruises from my efforts at walking around the flat without banging into the bed/ door frames/ cupboards.. It's quite depressing.

What is worse is knowing that there is little I can do about any of this, I have an appointment to see my doctor in a few days, I'm hoping a new lot of betahistine hydrochloride will help get the dizzy stuff under control, I don't remember it having much affect last time but I hadn't been taking it for long when we found out I was pregnant and had to stop medicating.

Lets just hope that the last couple of days rest is enough to tide me over, I have a test on wednesday and an exam on thursday - a crash before or during either of those would be catastrophic for my chances of passing this course with any kind of decent grade - I'm only just managing a pass grade as it is!