Arsing cuntybollocks!

I've really enjoyed the last month or so. It's been great having no work deadline and being able to not think about coursework or 'THE FUTURE' for days at a time; Instead I've been a mum. I've spent quality time with my daughter and Stef and just crashed around family time instead of crashing through it before locking myself away to work.

It's made me realise that I don't really want to get the job I know I need to get. Not because I don't want to work; I do - I love being around people who treat me as knowledgeable and competent as opposed to ill and weak and pitiful and I love feeling as though I'm doing something constructive with my time.

The problem is - I have enough energy to be a part-time mum OR a part-time employee; as soon as I'm working I'll be back to being too tired to do more than lie on the couch and watch my daughter play; I won't be able to go out to the play centres and home visits with her and Stef like we have been because I'll need to conserve that energy for work.

I don't want to live to work; People are supposed to work to live - that's the whole point!

I'm already half dreading the return to structured classes in January because I'm afraid I'll lose this rapport we've been building. My daughter always pushed me away and cried for Stef before; I love that now she cries for me too when she's hurt or in need of assistance; I don't want to go back to being useless or unavailable mum - but there is no way of avoiding it if I don't want to waste all my hard work up to now.

Why can't there be a compromise with the CFS? why do I have to choose one thing over another? I would give ANYTHING to be normal again; to be able to come home after a 4 hour work day and still have the energy to play with Isabella.

But it's not going to happen. Stef keeps telling me not to get down about it - to remember that it's only another 6 months. But what happens then? I get a job and give up any hope of being a real mum?

We might get the home we need but at what cost? Why am I doing this course? when I started it was to get out of the benefit trap, but that was before Bella came along and I didn't have any other claim on my time. Now she's there and if I work I don't have the time or energy she needs from me.

Stef is right, I have 6 months to work on it at least, worrying is a further waste of energy that I don't have to spare but it's REALLY hard not to fret.

I'm so lucky.

I've been reading back through the early postings on this blog and I have to say that I'm probably one of the luckiest people alive.

I no longer have the majority of the symptoms I suffered through back then; now all I have to deal with is fatigue, brain fog and pain (and the occasional bout of menieres disease) some people may say there is nothing lucky about that but when compared to those early days I thank my lucky stars that, awful as they are, these things are all I have to worry about now.

I have coping mechanisms in place and yes, I lose around 30-50% of my waking life to these symptoms but that's a damned sight better than the 80-90% of waking life I was losing before.

I have learned through this illness to prioritise and structure my life to get the most out of it - I know many people that seem to gain nothing from all their hours of perfect health so this makes me a winner in my eyes.

I manage to spend quality time with my daughter and partner, I am slowly finishing my degree (and yes I'm on track for a 1st class honours) and the job prospects following that are incredibly hopeful - even despite my health issues.

So yes, I am very lucky. Things could be a lot worse, things HAVE been a lot worse; the fact that they are always improving (albeit slowly) is something to be very thankful for.

My main goal when I became ill was to get well enough to find work and come off benefits - this is a goal I may finally realise once I have completed my degree. It's a very satisfying thought to know you can actually achieve your goals.

My next goal is to earn enough to buy the house I've been dreaming of forever - the house I'd saved enough deposit for when I got ill and had to watch that money dwindle to nothing as my income vanished.

I'm lucky because I didn't buy that house before I became ill, if I had I'd have been homeless and most likely dead by now as I wouldn't have met the man who changed my life and gave me my daughter and the strength to keep going.

Everything happens for a reason - never forget that.

The future's so bright.. I gotta wear shades!

Principles and applications of web Services (technology): A3
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!)

I'd say I did really bloody well.

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.

As Chris said on my Facebook page: Vicky rocks!

So, what now you ask? Well, on top of actually being a mum again instead of a snappy, stressed out work beast;

• 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)

I know, you'd think I'd kick back and relax wouldn't you - but I really don't dare to. One thing I learned this year is that I can pace, but I can't stop;

If I stop I lose any headway I've made.

So, gotta keep the momentum going because I REALLY, really want to be able to get a job at the end of all this.

Musing

Ok, deferral form and supporting evidence has been submitted - I am officially taking the entire of this semester again next year (assuming the panel ok it)

I'll be honest, having to split my final year like this makes me feel like a failure. Lofically I know i'm not but emotionally.. I just really hate being this mentally weak, having to acknowledge that I can't cope.

..But the worst part of it is that this is a further indication that any hope I harbour of being able to work a full time job is just a pipe dream. If I can't cope with almost part time hours on a flexible course then a full time job will kill me.

..possibly literally if the reported occurrences of a weakened heart in ME/CFS sufferers is true. I'm not giving up my hope completely though - I was able to just about manage a full time course AND the cable project before bella was born.

If I can slowly build myself back up then one day I'll be able to work full time. I have to believe it otherwise what's the point of pushing myself like this?

Why put off until tomorrow..

Once again I am putting in for deferral. There is no way I'll pass the semester B wad and paws exams, I've missed too much class because of the fatigue/ pain and general crapness of menieres and me/cfs.

The truth is, i'll alsobe lucky to pass my DES deferral assignment, I've not even started the last of the filming, I need to get my arse in gear big style - the problem is, i've got myself so stressed about it that I shy away from thinking about all I need to do because it brings on a crash.

Pathetic eh?

I'm averaging 3 crashes a week - that is ones bad enough to keep me in bed for at least half the day and mentally unfit for anything for the rest of it.

When I'm not stuck in bed it seems i'm having to look after bella or clean house and that's given me even less energy/ enthusiasm/ inclination to work.

It doesn't help that she's down with a chest infection and Stef has some kind of flu bug. *sigh* and I don't know what's wrong with me but I need help; I'm being plagued by bad dreams and unpleasant memories.

My mind just keeps regurgitating all the bad stuff that's happened to me since as far back as I can remember, then when it's done reminding me of things I'd give anything to forget, I get slammed with the nasty dreams about things I pray never to see or go through.

To be honest, i'm glad we got the eye massager - 30 minutes on that before bed seems to be the only thing that can send me off these days, I just wish I could stay asleep instead of succumbing to these dreams..

DSA - every CFS/ME student NEEDS this!

I just wish I'd applied for it at the very beginning instead of thinking it would be as torturous and stressful a process as DLA. It isn't, not by a long shot!

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!

Why people with ME/CFS should never become famous

I've had an interesting few weeks. Someone up there either REALLY loves me or is just 'avin a laugh at my expense.

I won an award to help pay off some of my ridiculously large student loan and the person handing over the ceremonial cheque was non other that the princess of pop herself; Kylie Minogue.

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.

The thing is - it all seemed unreal, I'd thought the whole thing was a bit of an advertising scam 'sign up to this site and be entered into a draw for x prize' I've seen loads of 'em and never known a single person who has actually won anything so when I was told i was a £2k winner i was incredibly paranoid sceptical.

We thought perhaps it was a practical joke or a scam, we could find no mention anywhere other than on their site that Kylie was in fact affiliated with them in any way, there was little information to be found online about the charity that wasn't self-generated so 'just in case' we organised a house sitter while we journeyed down to the offices for the event.

We needn't have bothered - as you can see from the picture it was all on the up and up, the people were lovely, the village was idyllic and the 2 days were a bit of a blur.

The only problem was the me/cfs rearing its ugly little head to mar my enjoyment of the whole thing.

As any of you who've been reading here for a while know; I no longer function well in crowds - small groups of 3-5 are my absolute limit after that it gets to be a little too much for me to handle and I retreat into myself or go and find somewhere to hide and regroup.

This meant i missed out on loads over the 2 days. During the 1st evening everyone went to the pub, firstly there wasn't much seating so after a tiring day of chatting and travelling I was having to stand around and talk to strangers - an ordeal in itself.

Then I didn't get much sleep because in the night, on top of the headache I'd been fighting off all afternoon, I developed a really sore throat and couldn't breathe. we were then up early the next morning to check out of the B&B and head back to the offices for more run-throughs of the event to come.

We got to the office and it was bedlam, I elected to help out in the office rather than with the others in the reception room; 1. because I got a chair and some net time and 2. because I just wasn't feeling up to dealing with more than one person at a time.

Eventually everything started to calm down but then more competition winners started to arrive, these guys hadn't won any cash prizes but they were dying to meet Kylie, I just stuck my head down and made a bracelet with my ever present bead kit - twisting wire helps me calm down and gives me something obvious that forestalls a lot of conversation when I'm feeling mentally fatigued.

..I know I probably came across as rude or anti-social but I just really had trouble coping with all those people - a bloody joke when you consider the 6 years I spent as a bouncer but there you go, one of the delightful side effects of CFS, for me at least.

That was the last chance I had to sit down until Kylie left.

The lady of the moment arrived and the photographers went nuts jostling for position and us students crammed into the space behind them like sardines.. Not ideal for someone who doesn't like crowds, but thankfully I was the 2nd person called onto the stage so it wasn't for long.

However being on that stage felt like an eternity - as the bulbs were flashing and the guys were shouting 'top left, top left, can you look right please, now down, down, over here please Kylie' I said out of the corner of my mouth "I have no idea how you put up with this"

I really felt intimidated and under siege, it was a struggle to keep the smile on my face and look suitably thankful/ grateful to be there, how celebrity and public figures stand such an invasion so much is beyond me - the few minutes I was part of that focus was enough to deter me for life.

The picture shows Kylies response to my comment, she just looked down (yes down. In heels she's taller than me, just to add insult to injury she's also slimmer and more gorgeous *sigh*) and gave me a hug and told me not to worry it'll be over soon. She then looked back up and gave her professional smile for a couple more minutes then said 'that's enough guys' and led me to the podium to give my speech.

Yes, it was torture. I suck at public speaking - my strength lies in the written word, I'm let down greatly when it comes to speaking those words aloud. ..but I stumbled through it then fled the stage in relief.

I had to get back up there for group photos but once Kylie left I grabbed some food and tried to hide in a corner again - but reporters kept grabbing me for interviews; why, I don't know because not one of them used anything I said. But it went nice and quiet as the band started setting up and every photographer scrambled to get set up with laptops and net access in order to upload their shots.

I went and stood against one of the pillars in the corridor, thankful for the cool breeze and the lack of people trying to talk to me, I felt completely wrung out. It was just at that moment that the stinky curly haired ogre shambled past and told me 'you were rubbish by the way' as he walked through the door.

I was pretty much gob smacked to be honest, that came literally out of nowhere; I'd not spoken to the guy and beyond a little joking earlier with some of the other folks about journalists in general had said nothing that could possibly have upset him.

I told Stef about it and then put it out of my mind, all I wanted to do was lie down somewhere - I was really at the end of my limits, finally Kylie left the building and I could head into the reception room and sit down.

..Which is when I burst into tears. Stef then told Sara and Kev about the rude oik and they obviously assumed he was the cause of my upset and started getting all irate about it, which made me even more embarrassed and agitated so they left me to calm down.

After a while they asked if the associated press lass could just ask me a few questions, I answered them (apparently in too much depth according to Stef, but then I always do - I'm not a natural soundbite lass) and finally the day seemed over.

I would have loved to have stayed and enjoyed the after party, but the need to pick up Isabella from his mums combined with my oncoming crash meant that would never have been possible.

I met some lovely people and the studyvox foundation deserve kudos and all the help they can get to realise their dream; sadly I don't have the energy to help much, I have battles of my own to fight and their passion is incredibly tiring because it ignites a passion of your own when you are around them - I can't afford that kind of passion these days, it wipes me out for the best part of a week with the after effects felt for several days more.

I can only really concentrate on one thing at a time outside of my family and currently that one thing is my course.

Which is a shame because they are exactly the kind of people I would love to work for; intelligent, caring, passionate and fun loving folks.

Maybe one day i'll have the energy to share in something so full of possibility but for now it's just head down and slog my way through the year and pray I get enough credits to make the extra year worth it.

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.

Optimistic misery

Sounds daft but it's true. I've been feeling pretty down for ages yet at the same time I'm feeling quite optimistic about the future because things keep happening that are good.

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!

Push on through to the other side

That's basically all I'm trying to do right now.

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.

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!

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:

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!

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!

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?

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!

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!

Nearly there!

It's been a long and tiring journey but the end is finally in sight! Just 2 weeks of this torture left and I'll have more sleepless nights - but at least I'll be able to sit and lie down comfortably again, I can start taking my medication to ward off the menieres nastiness that's been driving me mad all month and I'll have a baby!

I can't believe it, even now I'm the size of a house and the damned thing is trying to punch a hole through my gut I still catch myself being amazed at the thought of me with a child.

It's hard work though - I’m forced out of bed at stupid o’clock every morning by the demonspawn (after too little sleep) to walk in a figure of eight around the living room for hours rubbing my belly and muttering pleadings to whatever god may be out there to let me get this portion over with, I’ll get maybe 10 minutes ease every now and again by falling on my knees to lean against either the ball or the beanbag for a rest and then the squirming starts and I have to get up (with help, I'm now incapable of reaching a standing position unaided) and walk around some more..

Seriously - it’s killing me!

..and that’s before I even mention the acid! heartburn nothing! I have some really nasty strain of acid that eats its way up my throat and forces itself into my ears, I’ve had more menieres attacks in the last month than throughout the rest of the pregnancy combined because these acid attacks seem to trigger ‘em. I’m relying on mint choc chip ice cream and Gaviscon at night to ensure I get at least an hours kip in before the obligatory toilet visits.

I just keep telling myself that it's not long to go - the leaky nipple thing combined with frequent braxton hicks contractions is evidence of that, as is the way my belly has dropped - that's why I can't sit down anywhere, the weight of my belly crushes my thighs and cuts off circulation, in order to get any rest I have to go lie on my side (for about 30 minutes before having to switch because the kid hates me resting!)

Thank god the CFS has only shown its face a couple of times, it's unpleasent normally but when you're aware of discomfort and can't do a thing about it.. well, here's hoping it stays 'gone' after the birth, I think the menieres is going to be tough enough with a newborn in the house without the extra worry of a crash.

More pregnancy stuff

It's amazing how in just the space of a few months my whole outlook on almost everything has changed.

I've lost interest in practically everything none baby related, my blogs and my website have fallen by the wayside despite the 4 years I've spent building them up, I have a fairly strong readership over on my main blog and my web presence is pretty impressive for a dabbler - but just lately I've given real thought to just ditching it all when my hosting expires. I'm just not that person anymore.

I'm having to force myself to concentrate on college, I just can't garner any enthusiasm for it at present as the goals I had have changed - yes working from home is still an achievable goal but I just can't picture it the way I could before because my head is so full of the realities of childrearing - web design and programming are coming in a very poor second to that image.

Even my views on things have altered. I've been very open on the web up to now and had no problem sharing my life with people, yet suddenly I'm looking at things differently and censoring what I have to say - or just not saying anything at all.
I knew having a child would change things, what I failed to realise was just how much of that change would involve my view of myself.
Perhaps this is what growing up is all about? I'm not sure where this journey will take me but it's obvious now that it's in a different direction than I'd ever really imagined before.

On the physical side of things, I'm definitely on a boom/bust cycle, I'm finding it impossible to pace because I'm having trouble resting; I'm tired and stressed about our current living situation because time is running out on finding somewhere, there's only 4 months to go until I'm due to give birth and I NEED to be settled at least a month before that happens - and my temperature control is even worse than with the ME/CFS. I heat up to the point of passing out, yet if I strip off/ go outside then within the space of minutes I can be shivering again.
Doesn't help that the whole family are out for the count with the flu, I've been avoiding them as much as possible in an attempt to ward it off - flu is not fun at the best of times but while pregnant I can't have decongestants and the like and I'm almost incapable of breathing through my mouth!

Am I the anti-christ?

Went into Hatfield yesterday for an impromptu programming study group (i.e. me and Johnella) got home to find everyone rushing around because we had to go to mass - reconciliation or something (I'm not catholic so it's all a tad confusing) so I wolfed down some tea, got changed and off we went.

I have to say, the church is quite pretty and for a change the mass was a short one, but obviously I had to gee things up a bit.. I only went and fainted! It was so embarrassing - I've had dizzy spells and I'm used to the me/cfs crashes, but I never faint! ..And of course we had to be sat in the second row instead of nice and anonymously at the back! I don't know what caused it, one minute I'm kneeling next to Stef for the prayer and finding it hard to breathe, then I get a sharp pain in my guts, a roaring sensation in my ears and everything fizzles out. So while Stef and his dad are trying to hoist me back up onto the pew, his mum rushes off to get me a glass of water and I'm coming around just as everyone is queueing up for the 'laying on of hands' so I ended up sitting there feeling mortified as every single person in the church is parading past our seats and trying not to make eye contact with anyone - it's bad enough feeling ill without a couple hundred people witnessing it!

Thankfully mass ended not long after that so we escaped, I got home and had to rush to the loo for a bowel explosion (hey, I like to share!) and went straight up to bed feeling awful.
Needless to say, the antenatal yoga this evening has been cancelled and I'm trying to take it easy - Stef and his mum are at the church now putting the finishing touches to the Easter garden and I'm trying to decide whether it's worth calling the Dr's or not. I still feel a bit under the weather, a little nauseous, tired and light headed, but nothing more than I've been feeling on and off since getting pregnant anyhow. I don't think I have a temperature (mental note, get a thermometer) it was just a one off (I hope) my thinking is rather than get all panicky, just see how I go - it could have been the heat, incense, drop in sugar levels - anything. If it happens again then I'll go crying to my doctor.