Category Archives: illness

I HAZ ALL THE SPOOOOOOOONS!

I’ve written about the joys of ME/CFS many times before, even discussing how it’s not all bad and the way things do slowly improve For any newbies to this page, a quick infill for you:

For many years I’ve had this delightful illness commonly called Chronic Fatigue Syndrome (CFS). The NHS describe it thusly:

“Chronic fatigue syndrome (CFS) causes persistent faigue (exhaustion) that affects everyday life and doesn’t go away with sleep or rest. 

CFS is also known as ME, which stands for myalgic encephalomyelitis. There’s some debate over the correct term to use for the condition, but these pages will refer to the condition as CFS.

CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.”

For those of you who have never heard of the spoon theory and want to feel well informed about the post title, just pop over here for a minute and acquaint yourself with how it all started alternatively just have a look at the image here:

Spoon theory diagram

Taken from http://www.mollysfund.org/2014/11/fibromyalgia/

OK, so, now we’re all on the same page how about I explain my current happiness to you?

I’ve been trying to up my stamina for quite some time for 2 reasons:

  1. To be able to work more hours and eventually get a full time position somewhere – preferably NOT on a zero point contract because yes, they suck major arse.
  2. To be able to get back into exercise and maybe take up martial arts again

Obviously with the wedding and all, I wanted to work on my arms and general body fitness so that I’d look good in a dress – the results were not as great as I’d hoped but considering that when I started out I couldn’t even manage a single push-up but by the wedding I could do eight – with the way I crash if I over exert myself – I felt that was a win.

Sadly, September came around which meant work, which in turn meant no more exercise as I just didn’t have the spoons for both and so now I’m back to being unable to do a single push up again – which plain pisses me off.

Now the difference this year to the last three years is that most of my work is in Hatfield – I only have to do the evil journey on public transport between Watford and Hatfield one day a week; you would not believe the difference this makes to me physically (and mentally)

As an example; two years ago after another news item about graded exercise was being thrown around I decided to give home exercise a go and did a YouTube workout. This was when I was travelling 3 days a week to Watford; the days I did not  work were mostly spent on the bed in pJ’s feeling knackered; but I still wanted to try, to make sure that I could still do something. So I cued it up and followed along, after 10 minutes I felt great but decided to not push it – 2 days later I was back in bed and missing a day of work as the delayed fatigue onset hit.

This is why I was dubious last week when my friend Kathy told me she’d got me a free pass to try a Boxercise class with her at the Uni sports village. …but I figured; I seem to have more energy of late; I’m managing early morning starts even if I’m not loving them and as well as very little travelling I’m not having to bring as much work home because the Uni job (unlike the college one) doesn’t involve anything outside of my contracted hours. Yes, I’m working 2 jobs (well, technically 3 seeing as the college one is split between both WHC and NHC at present) but I’m also managing to have a life outside of work – I’m getting to play with my daughter, I’m doing my share of the cooking and cleaning and i’m even *gasp* managing to be social and seeing friends.

So yes, I thought maybe it’s time to try this exercise thing again: I miss having strength! I once stopped a guy 3 times my size from getting on a stage despite interference from people who mistook ME for the interloper as opposed to the security: I know I’ll never be back there again on the physical front but I’d like to at least carry my child up the stairs without dying after 2 steps…

Well, I managed the first 30 minutes of this hour long class before I developed a twitchy spasm in my right hand and wanted to vomit. The sweat was pouring off me and I wanted to die – you can say I gave it a good go. For the next three days I ached (I still ache in fact!) and the following day I was quite worried as the hand was still a tad shaky and I couldn’t grip anything BUT! Yes, there is a but: I have not crashed!

I have had three early morning starts, I have worked full days and I have done all the housework and cooking on top of that AND I volunteered at the school fete – and I have STILL not crashed.

You have NO IDEA how amazing that feels. To just have the natural ache of an unfit body feeling the results of exercise without the body completely shutting down and the brain fogging up and refusing to work. I have hope again! The end is in sight!

I plan to remain at this balance of work and travel while I build up my physical stamina; one day I will be able to again throw a guy twice my size to the ground (even if I can’t keep him there) and more importantly I will be able to carry my child up to bed when she’s ill and manage my own damn shopping bags.

Boxercise may not be the thing for me, but the lovely Kathy has managed to score another 3 passes for me to try out different classes: I WILL have it all – if it kills me!

 

Coping with stress the Rosevibe way

Stress is the bane of everyone’s existence – more so for those of us whose bodies will shut down at the slightest intimation of that nasty wee beastie rearing its ugly little head. I usually know when stress is kicking in even before it starts making its presence felt by stirring up the ME/CFS or Menieres disease.

I feel it like a tight little presence in my head – as though it’s an inflatable air bag around my brain that is always there but instead of air it inflates with stress. When I feel that warning tightness I know I need to take a step back and chill out or I’m in for a really rough ride on the illness front.

But how do you do that? How do you take a step back? How do you stop the stress from taking over?

For me distraction is the key. I’ll sit down and make a to-do list for everything that may be causing the stress to kick in, then I’ll turn on the karaoke and sing for an hour or so – or I’ll read a book or watch a few episodes of some show I like on dvd.

Yes, that may seem counter-intuitive if what is stressing me out is work that needs doing to a set timescale, but believe me it works; it clears the decks so I can then focus on the items on my list.

It’s a 2 part thing really; making the initial list while you are stressed starts the process – it feels like you are addressing the situations that are stressing you out which helps you feel in control which helps you calm down enough to take the 1-2hr breather (or even a full day if you really need it) this helps deflate that nasty tension to the stage where it’s easier to focus on smaller tasks without being overwhelmed by the big picture.

That’s the real trick; making things less overwhelming and more manageable.

You have forms to fill out?

  1. Do the easy stuff like photocopying evidence and filling out name, address D.o.B, and NI/SSN on all of ’em in one go first.
  2. Take a singing/ film/ book break
  3. Write out the other info you need and check it against your evidence.
  4. Take another break then check it all over again before photocopying and do your best not to think about the outcome of your form filling, stay in the moment and do one task at a time.

After the task is complete and you’re inevitably back to stressing about the outcome/ future; take another break – have a bath and try to guestimate how long you stay in there before you start to wrinkle or stare at the reflection on the taps and mentally figure out what is being reflected; try to think about ANYTHING but the things that are worrying you.

If you can’t shut things off; fire off a few tweets, phone a friend or write a blog post to rant and release the tension that way, then make another list.

Take everything a day at a time; you will still worry and stress about things you can’t control – the trick is to only give into it now and again; plan for the worst and hope for the best.

The list is your plan, letting go is what will see you through it.

Beating the disability benefit trap

Trying to make myself look a good employment prospect is stressful; I’m resigned to never managing full time (unless someone out there manages to come up with a cure for ME/CFS – which would be nice..) but I WILL do my damnedest to find a part time job that pays better than the benefit system; hence the 1st class honours I’m aiming for in my degree.

I love that one of my former tutors is trying to help me in this, the recent Linkedin reference she gave me makes me sound like ‘superwoman’ as opposed to way I see myself which is ‘part-time almost-woman’:

Vicky has an amazing amount of energy and a voracious appetite when it comes to her work and her passion in technological issues. Vicky became a mum whilst studying and adapted to motherhood and her studies as if nothing had happended in her world and kept very focused. Vicky received the Best Student of the year Award for 2008-9 which she thoroughlly deserved. I recommend Vicky to any employer as an outstanding individual who can work alone and motivate herself to complete the task at hand

I was lucky in that the becoming a mother thing happened at just the right time in my studies – While pregnant my ME/CFS disappeared; I felt better than I had in over 5 years: no pain and energy to burn!

All the 1st year exams and assignment deadlines come during the early half of my 3rd trimester and although I had to take the first 6 weeks off in my 2nd year following the birth, the support I got from the college was amazing; they sent me regular emails and uploaded extra information to studynet (the uni VLE) and I even got one home visit from a lecturer to go over a class I’d been unable to attend; it’s easy to stay focussed with that kind of background support!

..and that’s without taking into consideration the fact that my beloved has been at home the whole time to take care of both the child and myself – not many lasses are that blessed in the love of their lives!

I guess it’s possible that to anyone but my closest family and friends maybe I do come across as that superwoman – I AM passionate about my interests; I get my teeth hooked into something and I do stay focussed, sometimes to the detriment of my relationship with the people closest to me because I don’t have the energy to work AND be a mum/ partner/ sister/ friend at the same time.

..But no point whining about that when I’ve already done so on my ME/CFS blog and in my twitter stream (in fact I should probably stop whining on twitter about #cfs but some days you really need to vent about how shite it is)

In the break I’ve had from studies since my deferral exams I’ve managed to complete a series of e-learning videos for an online assessment project the University are conducting, in the process I’ve now got a new piece of software under my belt and they want me to pass on the knowledge of its use to others.

I’ve also been asked if I’d participate in another e-assessment project that’s starting up; this would make my 3rd project for the university and I take it as a positive sign that my services have been required multiple times because of my knowledge and experience.

..Fingers crossed when I graduate a suitable position opens and they’re willing to take me on as a non-student employee (although for CPD there are a couple of post-grad courses on offer that I’ve been eyeing..)

I think an academic environment like that would suit me quite well; they’re sympathetic towards my health issues and allow me to work mostly from home and to my own schedule (as much as possible) which means I can maximise the time I’m ‘up’ efficiently – I can’t think of many other organisations that would allow me that amount of flexibility!

Against all odds..

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 75 days of it (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 else it’d probably be at least 3 or 4 months lost because I had to defer the above modules due to an uncounted relapse in November that lasted right through December)

..and god knows how many other days of productivity I’ve lost to the joys of brain fog (I’m never mentally aware enough on those days to think of keeping count!)

To be honest 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 re-designing and updating several websites (mine and other peoples)
  • updating and improving my knowledge of wordpress for this very reason (so a fair bit of reading)
  • researching and organising ideas for my final year project (which funnily enough involves the need to understand wordpress VERY well)
  • creating several ‘how to’ videos for the ESCAPE project at uni using Camtasia.
  • 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 (without over doing it) because I REALLY, really want to be able to get a job at the end of all this.

Oh.. and for those of you interested, here’s the video part of the DES assignment that netted me the top mark:
[youtube]http://www.youtube.com/watch?v=PdCVfmqsbTE[/youtube]

Modest life ambitions

I didn’t choose to do an IT degree with a view to becoming any kind of hotshot programmer/ web designer, despite my love of html and most things web;  my first choice would have been any number of the jewellery/ crafting courses on offer even though most are not of a degree standard.

But I’m practical. I chose IT because it allows a career that (hopefully) pays well and will work around my illness and family life.

Jewellery making and web design were the 2 ‘skills’ I had to choose from when I was planning out how to escape the benefits trap of the long term sick; the web seemed the likeliest method of gaining a decent income without a large financial layout.

I know that in the current climate having those benefits offers a type of security that working may not – especially in view of my health (the whole reason I’m on ’em in the first place) some healthy folks even question why I’d bother since I’ve ‘got it good’ right now – I’m lucky they say.

..and I agree, in comparison to some families we’re doing well and ticking by.

But I’m fed up of always ticking by. I’m sick of the uncertainty of renting a pokey flat that we’re getting too large for by the day. I’m sick of not having the cash for a decent holiday or to buy the gifts I’d like or to make the things I sketch out and put in the ‘someday’ file.

Unlike a healthy person, being long term sick offers you no hope of improvement, no hope of progressing up the food chain, you’re stuck living on handouts and state charity and that SUCKS!

I dream of having a decent sized 3 bedroom house (all doubles of course) I want an office/ workshop at the bottom of the garden and a garage. I want the space to be able to grow my own food – not on a self-sufficiency level, but enough to supplement the odd dish. I’ll never be able to get that on state benefits.

I listed all the things I wanted from my ideal lifestyle and showed it to Stef; he laughed.

Apparently I want to be his parents – but with hobbies.

To be honest I don’t know why that was a cause for laughter; his folks are great – they work too hard in my opinion and could use some hobbies for downtime, but otherwise sure; I’d be them. Just more up to date *grin*

..and I’d be able to do any of this with my daughter;

  • start a small craft club and have monthly meetings/ workshops
  • create and sell tutorials from my own e-learning site
  • create websites for small businesses and families
  • have time and materials for serious crafting
  • maintain a small kitchen garden
  • throw parties

(assuming she wanted to)

Doesn’t that sound like the life to you? THAT’S how I envisage someone who’s ‘got it good’, I’m just trying to get there the best I can.

Memories and musings

“She greets us as we enter the world; she is with us when we leave it. She is never more than a second away from us, as close as our own heartbeat; but when she does not stand directly before us, we cannot recall her face.
When she calls, loud and clear, we drop whatever we are doing and attend to her needs alone. At the touch of her hand we forget work, friends and lovers. She is the mistress of the universe. She is pain”

I first read Trader’s World by Charles Sheffield when I was about 14 or 15 and for some reason I memorised this passage so well that nearly 20 years later I still recall it.
..I guess a psychiatrist would have a field day with that revelation.

But isn’t it strange the way our memories work? How a smell, sound or an image can trigger them. The thing I find most strange is why are the unpleasant memories so much easier to trigger than the happy/ fun ones?

This is something that’s been playing on my mind a lot recently because whenever I have an ME/CFS flare up/ relapse or whatever you want to call it, those unpleasant memories boil to the surface at the slightest provocation. If this were me writing as I would 4 or 5 years ago I’d probably describe some of those memories to you in quite some detail; but I’ve learned a lot in those 4 or 5 years about the internet and over sharing so those memories can stay in my head for now.

But it’s not only personal memories that we seem to have little control over, I have tried for years to learn musical theory – I own (and have read) at least 5 books on the subject, had several friends try and explain it to me and through the patience of one of those friends (who drilled me endlessly) learned it well enough to pass the entrance test to a music degree course. ..But within days of doing that test I was back to not understanding a note on the page.

Some things you don’t learn or remember without constant drilling on the subject; other things you soak up like a thirsty sponge, but either way it seems to be some kind of luck as to whether it sticks or not.

I memorised hundreds of things when I was at school, and later on at college – but of all those things; soliloquies, poems, songs, technical information, it never seems to be the useful stuff that I recall. Which is a real shame because if I could recall everything I’d ever read or made a concious effort to learn then would. I. ever. be a force to be reckoned with!

Song lyrics I have no trouble with (well, songs I learned pre-CFS that is) At one point I knew so many songs that my peers nicknamed me ‘jukebox’ and would test me by throwing song titles at me and have me sing a verse/ chorus for them – if someone was trying to think of a song they’d tell me a line and I’d sing it back to them so they could remember; that was my ‘special talent’ I guess.

My interest is the web but my passion is creating things; jewellery, lyrics, website designs and content – I generate ideas for things on a daily basis that I have to put aside through lack of time/ energy or materials until some unforeseen future date..

..my worst fear is that I’ll never have the time, energy or materials for that future date to arrive.

It’s no secret that I’ve struggled with this year, I had to defer all of semester A which has in turn forced me to defer Semester B until next year – my year tutor made the observation that I would have been better suited to part time study but it just seemed like the wrong path to take at the time.

I’m struggling with exams especially; having next to no short term memory is bad enough but then having to deal with the demands of motherhood and family life, seemingly never ending episodes of fatigue and illness on top while attempting to cram technical information into a mind that seems hell bent on it going in one ear to travel straight back out through the other..

I keep reading, making notes, re-reading and it’s like every time is the first time I take in the information. It’s not so bad doing coursework because I know where I need to look to find my answers, but a test of memory – especially a 3 hour long test of memory (or 4 hours  in my case as I get extra time due to the illness thing) trying to find the little hooks, the triggers that will allow me to pull those answers from thin air – that’s the trick really.

I have to remember the quality of light coming through the window during a lecture to hear Guys voice in my head explaining the property in question, I need to hear the clatter of the canteen to picture the page I was reading about the description of such and such an effect. I have to be able to picture step by step the process used in a program to explain my reasoning – sometimes you can’t do that without the program in front of you; which is why I hate closed book exams with a passion.

In the real world I have all of these props to hand to help me trigger the flash of inspiration/ the required memory, in a closed book exam I have only my mind; the seemingly inaccessible hard drive with the faulty connectors that get even more faulty as the stress levels rise.

..and trust me, they are constantly rising.

Having ME/CFS is humiliating

It’s bad enough having all this crap wrong with us, being knackered and in pain all the sodding time while still managing to look the picture of health, people don’t think there’s anything wrong with you and that you’re making a mountain out of a molehill.

We get the ‘look’ a lot from family, friends and colleagues; the look that screams at you that you’re just lazy, that you’re milking it so you don’t have to do X, Y or Z.

The look that says you’re a failure. that you don’t try hard enough to beat the condition, that you give in too easily, that you don’t do enough full stop.

Feeling that kind of unspoken pressure and budding resentment all the time is demoralising because it’s having your own thoughts thrown back in your face a hundred times over.

But that’s not the humiliating thing.

No, what’s humiliating is trying to live a normal life, trying to do it all and succeeding so well in the appearance of this that when you crash in class/ at work from pushing yourself so hard, you’re met with confusion, embarrasment and a feeling of complete and utter alienation.

Today was one such day for me.

I was sat in my PAWS class and I could feel a crash coming on, I’d managed to shut down the laptop and was attempting to pack up my gear in a race against time.

..but it was fairly obvious I wouldn’t make it, not without leaving the laptop and that wasn’t an option as I can’t afford to replace it.

To make matters worse as everyone started heading out to get to the labs for our next tutorial, a classmate made her way over to talk to me and I didn’t have the energy to respond, I just rested my head on the table and prayed that she’d shut up and leave me alone.

I was not to be so lucky, she started badgering me and then at my lack of response began asking if I needed a doctor or the medical center.. I responded NO.

(single syllable words are the limit when the fatigue hits, and only for a few minutes before even they deteriorate into grunts and sniffles)

She kept asking me and asking me – I managed to get out the phrase ‘I have M.E’ so she then started calling back all the guys into the room – all I wanted was the ground to open up and swallow me.

I knew the room was timetabled for us for another hour, I knew the crash wouldn’t last that long if I could keep calm and just go with it; unfortunately she didn’t.

I’m there slumped against the table, struggling against the tears of embarrassment and frustration leaking down my cheeks and dripping uncomfortably from the end of my nose and she’s doing everything in her power to draw attention to me.

“She says she has M.E do you know what M.E is? Vicky, what is M.E? Vicky? Vicky? talk to me, do you need a Dr? Do you want me to take you home?”

And this went on and on until I could force out another “NO, leaf ‘lone” which completely exhausted me.

I could hear the embarrassed shuffling and the muffled commenting amongst the lads, finally one of ’em said “she wants to be left alone.. c’mon we should go” and to my relief, they left.

..The though of having to be in the same room as them all tomorrow fills me with dread, I know the lass will demand a big explanation from me and she’s the type to do so in the middle of a crowded room at full volume – this means even the guys NOT privy to my embarrassing physical breakdown will hear about it.

Oh the joys.

..But even that isn’t the worst part. The worst part was realising that I was alone, unable to move even my eyelids in a place my other half would have no clue to find me and that the people who had left me would not even think to tell someone where I was who could check my records for instructions on what to do for me.

If I could have said, “yes please take me home” to the lass, it still would not have made it happen.

I had a heavy laptop bag and I weigh just over 10 stone – all of which would have been dead weight as I was completely immobile; so how was this tiny lass to carry me and my bag down a flight of stairs and across campus, manhandle me into and out of her car to get me home?

I couldn’t even leave my chair and lie down without being assisted and I didn’t have the strength to ask for the help.

I had to stay in that awkward uncomfortable slumped position with the sun streaming directly onto the side of my face, listening to the comments about me from the people walking past the room laughing at the girl who’d ‘fallen asleep’ ‘had a rough night’ and just pray for the heaviness of the accompanying brainfog to drown out my humiliation and helplessness until the whole episode passed and I could summon the energy to get home.

I was there for 45 minutes.

The usual 10 minute walk home was a 20 minute stumble and I’ve spent the rest of the day in bed completely wasted from the effort of getting home with my bag.

So when people say that ME/CFS is ‘all in your head’ they’re right.

It’s in my head that for 24/7, 365 days of the year no matter what I do I can’t control what happens with my body.

No matter how healthy I look on the outside, in my head I’m worrying about days like today, days when I can’t hide that there is something wrong with me, days when I am at the mercy of every other human around me.

Days like today are the reason I have to force myself to leave the house and get on with things instead of hiding in my room like a hermit.

If I could get THAT out of my head I’d probably be a much happier individual as would every other person I know who suffers from this fucking illness.

The geeks guide to ME/CFS

A conversation with @elmundio87 got me thinking earlier;

Explaining ME/CFS to ‘normal’ people is difficult because there is no frame of reference, you can try the usual

  • ‘imagine you have a hangover combined with flu’
  • ‘imagine you just got run over but had no visible injuries and were expected to just pick yourself up and push through it’

Those kind of scenarios are not a good explanation.

How many people get drunk enough to have a hangover if they are already suffering from the flu? and who really knows what it’s like to be run over unless it has actually happened to them?

Normal people will never understand unless they get it themselves.

A geek on the other hand will instantly understand if you tell them that the human body is a laptop and when it gets ME/CFS that it may have contracted an invisible worm or virus that has changed a couple of registry keys and moved a few system files.

Now things don’t work the way they once did, programs crash for no apparent reason, it runs hotter when there’s no program on the go and everything is just so much slower and harder than it was before – it looks fine, all the virus and adware scans have come up empty but you know there is something wrong.

Even the battery fails to charge, it only ever makes it to around 10% even changing the cable or the way you use it has no affect on the constantly annoying pop up saying ‘please switch to mains’ – some days it doesn’t even start up at all even though the power light blinks at you to show there is life in there somewhere.

..but the casing still looks brand new and you’d never know there was a problem if you hadn’t used it previously – you’d just think it was a crap laptop.

So how do we fix this?

Sadly we don’t. Humans don’t get a re-boot or a re-install, we can’t save our memory to a backup system and when things start breaking down completely we can’t mend it with a new one (well, mostly)

We are stuck with this computer for life; We can uninstall a few social apps and conserve energy by shutting down the least essential processes, but basically that’s it.

Sucks to be ME huh?

Blogging, course work and ME/CFS

When I first started this blog I had no life; I was working every hour god sent and a few more to boot until I really had no life because the ME/CFS took it away. I had a great deal to say and a great deal of time in which to say it – even though most of it was waffle and has since been consigned to the ether with a click of the delete key.

Yet now I have a life again I have even more to say; but because of the ME/CFS my time is too precious to spend blogging about it.

I miss being able to sit at the keyboard and carefully shape my posts out of the initial ‘stream of conscious’ draft; I especially miss the comment conversations I would have with the folk like you who took the time to stop by and connect with me.

These days twitter fills that void in part – but it is nowhere near as fulfilling a feeling. I think any of you who like to write as I do can relate to this, the feeling of ‘rightness’ you get when the last edit has been made and you know that your words are in the right place to express your meaning; how it almost ‘snaps free’ to become a living thing in its own right.

..But perhaps that’s merely my fey side talking; I have been told that on occasion I can be a little ‘weird’ (though mainly by my other half, he’s good like that.. )

My time these days is split fairly evenly between family life, coursework and whatever tasks the blended learning unit set me. It’s a fine balance I have to walk in order to manage all of this; but the difference between then and now is that even if I do too much and relapse (which has happened twice this last week alone) I still manage to carry on.

I know that a traditional 9-5 office job is beyond my capabilities; not through lack of skills or cognitive functioning, but because of the physical limitations this illness has placed upon me. But a ‘real’ job is no longer beyond my grasp.

I am seriously dancing inside with this knowledge – ME/CFS has not taken my life, it hasn’t denied me anything; it has merely given me a focus and a determination that propels me to greater heights than I’d ever before dared hope for. This time next year I will be a graduate – hopefully with a Bsc IT(web based systems) 1st (but another 2:1 will have to suffice if that plan falls through)

I know that I have several options before me; freelance web designer/ technical author or even as a part time lecturer should I make enough of an impression on the uni during my time there.

My work with the blended learning unit is a hopeful step in that direction;

  • I’ve given two lectures on wiki use and best practice for group work within the UH studynet environment
  • I’ve created several handouts to complement these lectures
  • I’ve received positive feedback about these sessions and a request from other departments for similar help

A simple thing perhaps, but one that is obviously needed as the facilities available to the students are widely underused. With e-learning gaining such a large profile within the academic community, these experiences can only stand me in good stead when the time comes to search for employment.

But you don’t look ill..

me-cfs-ribbon-figures_m7t2Physically I am very lucky; despite my grumbles my natural body shape falls within the bounds of curvy as opposed to noticeably overweight – even post-pregnancy. I eat healthily and try to avoid stress as much as possible because stress exacerbates my condition. All of which lends itself to the physical appearance of a healthy young woman.

But I’m not. I’m anything but healthy. ME/CFS and Menieres disease see to that.

I used to love doing the Cher hot dance workout and I’d go out dancing all the time – it was my favourite form of exercise; next to learning martial arts and swimming. Ask anyone who knew me before 2004 and they’d confirm with a smile that I’d be the first person on and the last person off the dance floor of any club we entered.

These days I can’t do any form of exercise beyond short walks and I’ve forgotten what clubbing is.

Not only is my balance incredibly poor, my energy levels don’t allow for that kind of expenditure. If I have a night out I’ll give it a go, but where I used to leave the middle of the dance floor only for much needed drink and toilet breaks, now I’m more likely to  vaguely sway in time to the music near the dance floor for 10 minutes before sitting down or leaning against something; any more than that and I suffer for it over the next day or so with the inability to get out of bed or do simple tasks like shower and dress myself.

Yes I’m older, yes these things happen with age; but I’m 33 this year, not 63 and this has been the case for the last 5 years of my life; an activity that used to be the highlight of my week seems forever denied me because the consequences of dancing are now too grim.

I know that certain family members sniff at my perceived lack of domesticity; the true fact of the matter is I have to prioritise my daily tasks in terms of the energy I can afford to spend on it – which is why college work takes precedence over cooking and cleaning – mental work seems to take even MORE energy than physical work so I need to rest more.

This makes me appear lazy because I’ve done nothing but sit at my computer all day – when I wasn’t having a lie down that is. How can you describe the mental fizzing, the constant aches and the cognitive lapses that make any task take twice the amount of time it should to complete? You can’t without sounding like a chronic complainer.

Yes, I can have the odd week here or there where I just charge around as though nothing is wrong – when I do everything without the breaks and rests and lie-downs. I do this when I need to but all the while I’m praying the boom period lasts long enough to get the important stuff done before the bust period hits.

What others don’t see after a massive boom period (when I’m on the go from 7-8am until 11pm like normal people) is the bust period; the space of time when I’m unable to communicate in anything other than grunts and Stef has to carry me to the bathroom and move me into a comfortable position on the bed because I can’t do it myself.

This is why I am a blue badge holder even though I rarely make use of it, remember it is not always the driver who is the blue badge holder, just because I am medically exempt from driving (dammit!) doesn’t exempt me from the parking scheme.

Yes, I can walk and carry my shopping but every step is an expenditure of energy that could be used elsewhere, it is also a fail safe; Yes, I walk and talk going into the store – but if I hit the bust period and ‘crash’ halfway down the frozen food aisle then the person driving needs to be able to carry me back to the car.

So next time you see that healthy man or woman in the blue badge space running into a store – just think, they may not be so lithe coming out, they may be on pain meds that stop working as they get to the checkout, they may be prone to blackouts or dizzy spells or severe epilepsy, they may even have ME/CFS.
You can’t always tell from looking.

Words hurt whether they are spoken or just implied. Hidden disabilities cause more anguish than anything else because not only are you fighting to find a doctor who will understand and do their best to help you, you are fighting the prejudices of the world who see the outside facsimile of health and not the battle going on underneath.

The UK government will pay into research to find a cure for male baldness but they refuse to offer funds for biomedical research into ME/CFS. The ;implication seems to be that the current psychosocial ‘treatments’ are sufficient to manage an illness that’s all in the head. The implication that all ME/CFS sufferers (all 250,000 of us) are work shy malingerers is not only insulting, it shows a great deal of ignorance and poor judgement.

May is ME/CFS awareness month.

Here’s hoping that 2009 is the year that people do become more ME/CFS aware and something other than harmful exercise regimes or 6+ hours with a therapist is offered as treatment by the NHS.

I’ve come a long way

Back in 2005 I was getting to grips with ME/CFS and how it had changed my life, things were pretty bleak:

How ME/CFS can get you

Basically this thing has taken over my life. I’ve gone from being the kind of person who’s always on the go and never stops, to being the kind of person who never even gets close to starting.
To be honest I’ve gotten to the stage of not wanting to do things because I’m afraid of setting it off.
If I have a bad day – it’s a really bad day, by not exerting myself in any way I can avoid bad days.

If I feel even the slightest bit tired, I’ll just stay sat on my arse doing nothing – not even the dishes. And I hate it. I hate this weak whingy little piece of useless nothing I’m turning into.
It’s frustrating, depressing and at times feels completely hopeless – it’s even worse after a couple of good days, when I feel positive and do things normally without even thinking about it, if I have a bad day then it sets me right back for weeks mentally.

I don’t like to go out alone anymore, it’s not so bad going to a place where I’m meeting up with people, but I won’t go to town alone. I can’t stand crowds anymore, they stress me out – I used to work as a bouncer in a nightclub environment ffs, crowds never bothered me in the slightest…

This whole thing… It’s just rotten, I feel like a complete hypochondriac everytime I mention something aching or such and such a thing isn’t ‘right’ because just lately that’s everything. I try and act ‘normal’ but I hurt all over pretty much constantly – it’s usually just a dull ache, a nagging pain that I can put to the back of my mind and ‘ignore’ but sometimes it flares up in 1 or 2 places, on a bad day it flares up everywhere.

When I’m talking to people it’s like there’s a fog between me and them, I get what they’re saying and I can act like a rational person, but I’m not ‘myself’, I know it – but very few people I hang with these days have known me long enough to see the difference. On a bad day I couldn’t hold a conversation with a goldfish.

Basically, it’s a memory thing more than anything else, it plays tricks on me – only little things, but they mount up. For example, I’ll get a text message and in my mind I’ve not only replied but possibly had an actual conversation with that person – a few weeks later, I’ll get another text asking if I’m still speaking to ’em because I never replied to the first one.
It’s all stupid petty little things like that but it’s in every aspect of my life and they’re whittling away at my self-confidence, my ability to be me and just get on with things.

Stef actually said the other day that I shouldn’t stop doing things because of this, I should do them anyway and if I have a ‘sleepy fit’ just go with it.
I’d like to do that, I really would.
But I have a real mental block – I’m almost terrified of bringing one on – it’s stupid, I agree with what he said 100% but I can’t seem to put it into practice. Instead I just shy away from doing anything – including housework, and then hate myself for being a ‘lazy cow’.
I’m just glad he’s here to push me and ‘bully’ me into doing constructive stuff, I may complain and act all hard done by – but I do appreciate the fact that he cares enough to do it.

Stef is still with me, we have a beautiful daughter and I not only leave the house but I’m studying, meeting people and I can now just ‘go with it’ if I have a sleepy fit because I know it’s not the end of the world.

Life is good, even with ME/CFS.

We has internetz!

RAH!!!!!

Yup, talk talk finally came through yesterday evening so I’m back where I belong: in front of a computer screen.

*grin* You have no idea how much I’ve missed this! So last night was spent trawling through the 7-8 pages of spam per email account to find the 3-4 emails needing attention, a quick hop onto facebook to see what I’ve missed and  car seat research seeing as with 2 weeks to go before I drop, buying said item is now a necessity.

I’ve not dared look at my google reader though, I’m sure the account will have imploded by now..

On the college front, all my funding is sorted so I have no worries there, term doesn’t start until September 29th so I have a full month to get used to nappy changing and breast feeding before I even need to think about it let alone organise any distance learning/ childcare – which is good, those 4 weeks are likely to involve me wanting to do nothing more than sleep by all accounts. (like that’s not all I want to do now!)

These last few weeks are killing me, I’m too big and heavy to do anything physical, I can’t sit or lie comfortably in any position and I’m up to the loo every hour on the hour throughout the night – in order to type this I’m having to lean at the kitchen counter because there’s nowhere I can comfortably sit with the laptop! (hurrah for wireless *grin*)

I can’t even play guitar hero! *sniff* I succumbed to temptation and purchased the Aerosmith edition for the x-box (hey there’s only so much reading you can do before other entertainment is required!) I can maybe sneak in 2 songs before the child is kicking the guitar away from my stomach – it’s bloomin’ hard to concentrate on a hand/eye coordination activity when something inside you is trying to re-enact the ‘birth’ scene from Alien!

So, 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 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 now understand why some mothers mentally torture their kids – must remember that I wanted this, it’s not the childs fault it’s spent the last month torturing me; revenge is not an option!

..although I’m beginning to think Mork or Mindy may well make an appearance on that birth certificate if this goes on for much longer!  👿

There may be trouble ahead..

It’s been pretty hectic since the social media conference, I’ve had furniture delivered, a plumber round to fix ‘stuff’ attended an antenatal class with Stef and been to a wedding; after which I had the biggest scare of my life..

We’d gone up to Knutsford to see Stefs mate tie the knot on Sunday, our initial plan was to drive up, stick around for a few hours and drive back; sadly the car park attendant had other ideas..
We got back to the car at 10:30pm only to find the place closed and locked up – despite no noticeable signs stating this would be the case. This then meant we had to try and find somewhere to sleep for the night and hope and pray someone would be around in the morning to open it up again. Thankfully it was, but unfortunately en route to the carpark I fell.

Actually I tried to fly – no idea how it happened, one moment I’m a step behind Stef as we walked along the main road, next thing I’m flat out on my face, full weight on bump and my bag thrown to the wind. I managed to wrench my shoulder (it still hurts) and I can still recall the odd sensation of feeling as though I’m lying on a blow up ball. I was soooooo embarrassed, rush hour traffic, busy road – police arrived out of nowhere and helped stef to pick me up enquiring if I needed an ambulance..

We probably should have done just that but I was so shocked at the speed of it and so embarrassed at being the centre of attention – not to mention worried about whether we were going to be able to get at the car and go home.. Well, I brushed it off and said it was fine, we got back to the car (thankfully unclamped and able to leave the car park) Stef worridly checking I’m all right when a few minutes down the road reaction set in and I started howling.

It was horrible, I’ve done nothing but complain about how active this child is for months, yet for at least 20 minutes after my fall there was no movement at all – I panicked, I cried and Stef made me call the hospital; they insisted I go straight in for a check up.
This was where I had to explain we were at Keele services and it’d take me a couple of hours at least to get to them. She was very calm and reassuring on the phone, I’d felt some movement my waters hadn’t broken and as far as we could tell I wasn’t bleeding.. They booked me in to see the triage nurse and as soon as we arrived I was hooked up to a machine and being poked and prodded and questioned thoroughly.

On the plus side, I’ve seen first hand just how brilliant the lasses on the delivery suite are at Watford general – it’s really reassured me about having the baby there. On the other hand I’m now paranoid about doing anything; the thought of how it could so easily have turned out differently still makes my stomach clench in fear and my eyes fill up. I NEVER want to feel that afraid again – yet this is all part and parcel of being a parent, I’m doomed to this stomach clenching terror every time something happens or my child is out of sight..

How the hell do people do this and stay sane?!

News

Ok, to fill you all in on just why my posting has been pants for the last few months and why I’ve been so ill and why I’ve barely posted anything else. You see, when you have something big happening in your life it’s all you want to write about – especially on a personal blog like this, but no..
My beloved has been adamant that we shouldn’t tell people our news until after we’ve had the first scan and know for sure that everything is ok – I’ve not been able to blog or stay online because it’s just too hard to keep the secret to myself, but Friday night he went out with all his male cousins and they got to hear the news in the pub – even though we won’t be going for the scan until tuesday..

That’s right, when sat face to face with them all he just couldn’t wait 3 days LOL

I’m just amazed he held off this long – I’ve been dying to tell all those people not in the know *rubs hands in glee* I can just see the fear on their faces now..

Me: “We’re BREEDING!”

Them “NOOOooooooooooooooooooooooooooooooooooooooooooooooooo..”

It’s a DNA cocktail the likes of which even Mohinder Suresh would quiver to see. Truly this is the DNA melding of doom.

And we couldn’t be happier. :) :) :)

Newt may not have been planned for for a couple more years but he or she (we think he) is the luckiest kid on the planet and we’re chuffed t’buggry about it. Everything happens for a reason remember 😉

I have to say though – there truly is NOTHING pleasent about pregnancy, it’s actually very similar to early stages CFS/ME as far as the worry and constant tiredness goes, the sickness is basically just like Menieres disease (only without the vertigo and deafness) so all in all I was well prepared for the expected physical nastiness.

But it’s weird. I’ve been able to feel my insides moving around to accomodate everything, even though I’m barely showing I can feel the weight of it all being distributed differently when I’m lying down – and it makes for an uncomfortable nights sleep I can tell you; first on the shopping list is definitely a body pillow!
Thankfully the sickness has died off a tad so I’m not retching at every noxious smell that crosses my path (that was embarrassing) and the whole ‘boob’ thing has settled down. I’ve basically been living on fruit, cereal, potatoes and vegetables because I couldn’t bear the thought of most meats, cheese, pasta and (believe it or not) chocolate or cake and I’ve gone from massive plates of food to kiddie portions. Chocolate has been the first thing to sneak back into the diet since the morning sickness began to wear off, but I still can’t face the rest and don’t know if I ever will again!

The thing is, NOW.. Oh yes.. NOW the cravings have finally arrived.

Last night, around 10pm I went and asked the father of my child what time the local shop shut, he replied ‘now’ and I nearly burst into tears. I wanted original flavour Pringles and I wanted ’em BAD!

He on the other hand found it hilarious, here we are in a house that has more pickled goods than you can shake a stick at (his mum has an allotment and they freeze and jar their own veg and sauces and preserves) and I don’t want the traditional ‘pickles and ice cream’ I want crisps – but not ANY crisps, I’d already been through the cupboards and rejected everything in there, I knew what I wanted and just as you’d expect, we didn’t have any.
But I mean.. of all things! PRINGLES!?! ..And original flavour to boot! C’mooooon! the lad is supposed to walk the ends of the earth to find me granite flavoured ice cream or peel spuds at 1am so I can have chips and maple syrup. But no – I wanted Pringles, it’s just so disappointing.

Mind you, I’ve come to the conclusion it’s all down to your subconscious kicking off with the nesting thing so you stock up on stuff – now that I have pringles in the house I don’t want them, instead I want chocolate mousse/ dessert/ pudding or whatever the sauce stuff in those cadburys pots is known as. Basically, if you haven’t got it in the house and can’t easily get hold of it – you’ll crave it.
Which sucks.

Still, we’re REALLY looking forward to Tuesday and our first glimpse of Newt, we should even get to hear his little heartbeat – I’m so excited! Expect many ‘mommy blogger’ type posts on here in the future because it is literally pretty much all I can think about. College have been great about it and Nick, my year tutor, has already put into place some options for next year – but that’s a whole other post because right now I’m off to bed – building a baby is bloody knackering y’know!

Getting ahead of myself

Seems I should check my paperwork more carefully, I’m still fully hosted right up until june YEY!

*grin*

Thankyou to the three lovely people who offered me alternatives via text and email *sniff* it was quite touching to find that even with my recent feeble blogging efforts I’d be missed! I was even more amazed at the (minor) outcry over the loss of my CFS site, overly wordy and outdated though I deem it myself; it seems others are less critical and find it as helpful as I’d hoped it would be back when I created it.

Which means I now feel obligated to keep the damned thing up and running *sigh* guess this means I’ll have to give myself 2 more years hosting for my birthday and use the summer holidays to bring the whole thing up to scratch. I guess £3.50pm is affordable and it’s not like I drink or smoke so..

Heh pitiful eh?! I was all growed up for.. What? A fortnight..? What can I say..? The internet is to me what shoes and handbags seem to be for every other girl I know – but at least my habit is cheap and takes up far less wardrobe space 😉

The reason I have been so pants of late is illness related I’m afraid, but I’m finally going to see an Otolaryngology (ear, nose and throat) specialist on Tuesday about this possible menieres disease the GP thinks I have so fingers crossed they’ll tell me it’s something else and give me meds to clear it up – I’m getting more than a little sick of this nausea and spinning nonsense! After 4 months of it enough is enough already!

I’m also going to see my first neurologist on the 31st about my ME/CFS crashes because when the GP saw my description of them he decided they share some similarities with a type of epilepsy and he wants me tested for that – added to which it seems I’ve caught a bug which exacerbates a lot of the ME symptoms so I’m spending even more time in bed than usual.

What time I’m not using to rest is taken up with coursework – I’m quite proud of the fact that I’ve managed over a 94% attendance for this course despite everything and all my modules are looking at being a minimum of a low B grade – I think my dad is probably still chuckling over the incredulous text he recieved when I found out the database assignment I (literally) cried over netted me a mark of 70% (that’s an A by the way)

And there you have it; that’s why I’m only ever online in 5-20 minute bursts for anything none course related at the moment. As my health improves (because it WILL) I may once again prove to be a prolific blogger  (can’t help that, after 4 years it’s in the blood) but the socnet stuff will likely take a beating as I immerse myself in ‘real’ life – even facebook has become just another email address as 9 times out of 10 I only nip on there for messages and to change my status (it’s twitter without twitter)

Now I’m off to bug my beloved to make sure he uses sesame seeds in this new batch of flapjacks, quite fancy some of that..