Thursday, December 06, 2007
The reason I'm smug is that I've managed these marks and at least an 80% attendance record despite feeling like utter shit.
That's right, crap kaka, doo doo shit.
My ears are driving me nuts, I'm not sleeping properly and on top of that I have this damned nausea and dizziness to contend with.
The ME/CFS stuff is feeling the way it did when I first came down with it, only I know better now so I'm managing it a lot better.
When I first became ill I spent most of my time in bed, a crash scared me so much that I'd revert to doing absolutely nothing for fear of bringing on another one - that and my feeding habits were atrocious, I was living on takeaways and ready meals because I didn't have the energy to cook or shop.
Now I'm fed homegrown wholesome food on a regular basis, I make myself get up as soon as I'm able and I don't shy from exercise, I just try to balance it more.
What's pissing me off is that I'd reached the stage of managing it so well I was leading a pretty good life, now this has kicked in; when I'm not at college I'm heading home to crash, I feel slightly sick all the time and if it's not tinnitus giving me grief it's the physical assault of people talking.
I'm just sick of being sick.
I know everything happens for a reason, I just wish I knew what the reason for this was so I could handle it with better grace.
I also can't start driving lessons again because of it - which has sparked my paranoia, something REALLY doesn't want me on the road!
For years it was financial difficulties that prevented me from having lessons and taking my test, when I finally decided that was a rubbish reason and ploughed ahead with motorbike lessons and passed my CBT; 3 weeks before my test date I crashed and ended up on crutches, 2 years of physio later, finances again dictated a wait and then I became ill with ME/CFS.
After a couple of years of nastiness with that, I felt well enough to try again and got a peri-anal abscess and had to have surgery on my backside (so definitely no driving if you can't sit down) That brought about an ME relapse, then I got an ear infection that brought about another relapse and.. oh look! I'm just getting well enough and financially stable enough to try again and I'm struck down with a possible ear disease that will render me permanently unfit to drive.
I'm doomed to relying on public transport (which makes me ill) and the good will of others to get anywhere. *sigh* so much for independence!
Wednesday, November 28, 2007
The antibiotics have done nothing and if anything it's getting worse, but my ears look fine. Having now read all of the NHS direct information about the suspected problem I'm depressed:
There is no cure for Ménière's disease. However, your GP and ear, nose and throat (ENT) specialist will be able to help you manage your symptoms. They will offer advice and information that is tailored to your individual needs, and develop a management plan that will help you cope more effectively with your symptoms.Does that sound familiar or WHAT!
Exchange the words 'Ménière's disease' with ME/CFS and the ENT specialist for Neurologist and there you have what's been plaguing my life for the last 3-4 years!
Added to which I stupidly mentioned the discussion I had with some of the support group about what happens when I crash and how a couple of them didn't think it sounded like ME but more like epilepsy - I was cursing myself within minutes for mentioning it as instead of shrugging it off as I'd expected him to he said 'Disregard any of your previous notes, we'll take everything as new onset, I want to test you properly to rule out that possibility'
So now I'm going in AGAIN next week to be tested for epilepsy, I can't remember everything he said because I was too stunned by how quickly he changed from concluding the appointment to telling me about the tests and asking me to book myself in for another appointment.
I also can't help feeling like a hypochondriac again, why did I open my mouth? It's that STUPID wish that I had something treatable instead of this damned curse of an illness.
I'm pretty sure I don't have epilepsy, the crash thing would have been picked up before now surely?! ..and besides, what little research I've done (hurrah for DR internet eh?!) says that those kind of 'episodes' happen to kids, I've not seen mention of adult onset before.
I just feel that now I'm wasting his time with pointless tests all because I couldn't keep my bloomin' mouth shut.
I suppose I should be grateful that I have a Dr. who is willing to do anything to reassure me about any suspicions or.. well, anything.
But I would have accepted him telling me that it's unlikely to be absence seizures at my age, that's pretty much all I wanted him to do if I'm honest, just because I'm resigned to the CFS/ME label doesn't stop me having ridiculous dreams of the "you've been misdiagnosed, have some pills and be cured' conversation.
Perhaps THAT's what I should have said as I was leaving instead of "a few of us were comparing symptoms.."
Meh, I'll learn one day. I guess now I just wait and see what these blood tests show up. At least the last lot were fine, normal blood count so I'm NOT anemic, pressure is a bit low but nothing to worry about so it's just the ear thing.
Saturday, November 24, 2007
I've just been less able to cope with the 'fatigue' (you know, that bone sucking weariness that leeches at your will to live) and the dizziness and nausea are back full force - I also feel as though my eardrums are going to pop every time I swallow - but that'll be down to the ear infection fighting back. on the plus side, the aches are not as severe as usual, my elbows still twinge but it's not the 'normal' burning stretchy ouch I deal with during PMS week.
I got an extension on one assignment, I figure I'll be fine with the presentation and I've already taken my missed exam, I just need to give my tutor a copy of the docs certificate for the examining board to ensure I get marked as though I were present first time around and not at the capped 40% resit scheme.
Still awaiting response from Minerva house about my DSA application, figure I'll phone 'em on Tuesday to make sure they received it, they should, it was sent recorded delivery.
As soon as I've had an assessment for that I'll know where I stand with everything else, best case scenario is that I get help with transport, a laptop and laptop desk suitable for use in bed (or just the desk, I don't mind getting my own laptop) and an ergonomic chair.
Worst case is I get nothing and the college stop helping me with extensions etc etc.
Meh, we'll see. I just want it all sorted before my exams.
Sunday, November 18, 2007
I've a prescription for antibiotics to pick up but I know that as soon as I start taking them I'll be completely buggered and the next 2 weeks are pretty vital as far as college goes, I've 3 assignments due in and tomorrow evening I'm taking the exam I missed 2 weeks ago due to my mini relapse.
I guess I'll have to fill in an extension form for each of my assignments and just succumb to the effects of the drugs, I'll go and speak to Thelma tomorrow about it, hopefully she can square it with all my tutors so that I can have an extra week in which to do the work - it shouldn't be a problem seeing as the Lovely Dr. Bhatt gave me a sick note that covers me until the end of next week - technically I don't have to be in to any of my classes until that runs out, I just hate to miss the lectures because I don't want to fall behind!
It's a toss up really, do I postpone taking the antibiotics and hope the recurrent dizziness and nausea/ fainting from the ear infection hold off until I've done the assignments or get them and take them and just give up any thought of doing anything for the entire week because I'll be too bushed to speak..?
God knows why antibiotics have that affect on me but they do. *sigh* no visiting or anything that week, at least I'll be able to do some beading if I'm propped up in bed, nothing worse than the listless fogginess - although I've never taken them with VegEPA so perhaps I'll be ok.. We shall see!
I'm not starting them until Wednesday anyhow because I've decided to wait until after my blood tests, no point making life truly awful for myself until I have to eh?!
Friday, November 02, 2007
Just as well I'm allowed a lift key at college, I really couldn't face the stairs today, I did force myself up and in because I had a test this morning, the temptation was there to just flake as I know I'd be allowed to redo it at a later date, but it's in a subject I already struggle with so I need all the help I can get.
I'm also getting a tad fed up. All I do is college work and then go home to crash, that's assuming I'm not working on college stuff at home.
I need a night out but I don't have the energy (or the income) I need a break.
I also need my own space. Singing is the one sure fire way I have of de-stressing and brightening my outlook, I've been unable to sing for at least 2 months because I'm living in someone elses house and feel I can't make that kind of noise.
I can't go to a karaoke because I'd be going by myself, not advisable at present (even if I had the confidence to go to a pub alone and sing in front of a crowd) I'm just royally fecked off.
..But at least i'm doing well on my course - even databasing is coming to heel, by christmas I should be able to create a fully operational shopping database. I just wish I had a life outside college.
*sigh* i'll build up, I guess I should just be grateful i'm at the level I am, as long as I can hold this and not relapse i'm doing well. Things'll pick up once I have a measure of privacy back in my life again.
Then I'll be able to sing to my hearts content!
Sunday, October 28, 2007
The VegEPA really do help, when I'm on them and I crash (as I did in class on friday last week.. Most embarrassing and more than a tad worrying since not 30 minutes earlier I'd been alone on public transport) I'm peripherally aware of what's going on around me, yes I'm embarrassed because of it and yes I cry, but at least I can make myself understood (eventually) and I can get help and the crash also ends much sooner.
If I've run out of VegEPA or like the last few days forget/ don't take them - when I crash it's much more serious. Yes, my limbs don't work, they're too heavy and I can't move - but there the similarities between a VegEPA crash and a non-VegEPA crash end.
It's like I'm on high dose painkillers and I'm cushioned from everything - ok so I can't move, I'm uncomfortable - but I don't care. I'm completely detached from everything - I could be dying or lying naked for the world to see and it wouldn't matter, I'm not really aware of anything around me, or if I am I just couldn't care less because I'm locked in some kind of immovable armour that's shielding me from the world at large.
I think that's why the non-VegEPA crash lasts longer, when I'm aware I have an incentive to come out of it. It's quite a strange one really, if I fight it it lasts longer and exacerbates all my other symptoms but at the same time if I don't fight it or even seem aware that I could, then I don't come out of it for a good hour or two - and even when I do I'm not 'with it' for the rest of the day.
That doesn't make sense does it..? ok, in a slightly more understandable format:
Sudden wash of exhaustion, enough warning to sit/ lie down and tell someone what's happening before everything is too heavy to move. I'm aware of my surroundings and able to speak though it's slurred and hard to understand. I'm aware of discomfort and uncomfortable positions, if I don't fight it I'm out for an average of 20 minutes. When it's over I feel shaky and a little unwell but I can at least interact 'normally' with people again.
Exhaustion comes on suddenly, no warning. I'm completely detached from everything I can't move and I don't care. No matter what position I fall into I'm 'happy' to stay that way, it's like I'm cushioned from the knowledge of pain and discomfort - I know it's there but I can't be bothered to do anything about it. I can only communicate in grunts which means only my carer (stef) can understand me. It takes a minimum of an hour to regain movement and even then it's only enough energy to move into a more comfortable position, I'm usually out for a minimum of 2-3 hours though it can last the entire day as it comes and goes.
When it's over I'm uncommunicative and remain slightly detached from everything, I can move but everything irritates me and I don't want to be bothered with anything.
I've tried doing without the supplements before but I've never bothered to record the results, just the knowledge that I'm better with the pills without remembering why was enough - now though I feel the need for the record, I don't want to attempt this experiment again, with college I've too much at stake, I need to be aware and functioning. While it's kind of 'nice' to let everything go and feel completely detached from the world now and again that's not how I want to live my life - I had that fog for a year or so when I first started dealing with CFS/ME and it confused the hell out of me, I was upset and in pain all the time and I REALLY don't want to go back there.
Sunday, October 14, 2007
I've been a tad on the whacked side this week, Wednesday was pants as I nearly crashed in class, managed to fight through but felt awful right through to Friday morning when I was riding the biggest high I've had in months - was practically dancing up the high street and barely containing the songs pouring through my mind in a happy stream.
That didn't last of course because I've discovered that I'm not a fan of databasing, methinks I'll be outsourcing that particular job should I ever be in a position to do it. By Friday night I was shattered and yesterday was basically a washout as I spent most of it in bed.
I did get up at 7:30pm though, Stef took me to the local cinema to see 'Run fat boy, run' I have to say I really quite enjoyed it there's a brand of humour for everyone in that film, it also highlighted how strange my sense of humour must be because at certain points I was the only person laughing while at others everyone but me seemed to be laughing.. ah well, m'an original ;)
I've also been getting grief from a few of the guys on the support group - I know they're right and it's just because they care but.. I do wish I'd never mentioned the low blood pressure thing, some of the comments were a little scary.
I've been getting dizzy spells and faint nausea quite regularly for the last few weeks, I've also been having to watch my breathing because it's very shallow, if i'm not thinking about it I don't breathe deeply - it's not asthma it's just as though I've forgotten how I'm supposed to breath.
I've also been getting sharp twinges in my chest. I am going to go to the doctors, I have an appointment booked - it's just not until the 6th november. I'm fine with that but the guys in the support group keep telling me to demand an earlier appointment.
It may be daft but I don't want to put anyone out. This new doctors is not one I can easily get to - I need to be taken there. The appointment on the 6th is for both my man and me, since he has to go anyway it's not putting him out - that and since the nurse is doing all the prelim checks then the doc will be able to see for himself what my blood pressure etc is like. I don't see the point in going before he has some data on me - it'll take a good couple of months for him to get hold of my records.
Meh, I'll be fine. I just need to take things a little easier is all.
Sunday, October 07, 2007
I come out of classes feeling as though my head is about to explode and I'm shattered when I get home, but I'm not crashing in the day and my communication skills are improving by leaps and bounds - it's only towards the end of the day I start stumbling so hopefully after a month or so I'll have built myself up to the point where I can get through an entire day without a single stumble. At least I have a day off after each lecture day so I can rest up.
The last week or so have been worrying though, I've had a faint nausea and slight dizziness come on every other day, my appetite is not what it was I get slight 'tension like' headaches and I'm dehydrating a lot quicker than usual.
I need to sort out a doctor asap!
Fingers crossed it's just a slight bug and that I'll get over it swiftly,but it's likely related to low blood pressure - the NHS survey nurse said I had incredibly low blood pressure, I just haven't been to the doctors since for a check up - methinks it's time to.
Saturday, September 22, 2007
I've finally got my course sorted, while it's full time most of that time will be spent working from home so it should be fairly easy to pace myself. Induction week was a bit of a nightmare, i was absolutely shattered - especially since it seemed one thing after another was going wrong and the possibility i may be turfed off the course before I'd even started was always present.
still it's all done now, even after spending an hour beside a broken down car on the M6 failed to stop me, a phonecall to a friend has us being picked up and towed to safety before being driven to make my LEA appointment to sort out course fees.
It's been a busy couple of weeks all told. Roll on Monday and the start of my new life!
Friday, September 07, 2007
Yesterday was mainly spent in bed, today has been pretty much the same.. I'm just tired and a little dizzy/ light headed, I'm eating watermelon and attempting to make my head work but this post is as good as it gets methinks.
I can't focus properly on the screen and I can't take in anything i've been trying to read.
i'm not going back to bed though, i refuse to give in today. instead, I shall start packing up my books ready to take 'em into storage - we're moving next week and things have been left a little late - which is why i'm now stressed and worried.
hence cfs nastiness.
Monday, September 03, 2007
It's funny though, an email from Bill in the support group had me thinking. Prior to getting CFS/ ME I was always coming down with a cold or a throat infection, I blamed it on working at the university, there was always a student dying of flu so my chances of catching something were huge.
Now though, instead of catching a cold every few weeks I get maybe 2 a year, and they don't last for weeks on end, usually it's a matter of a week tops (so here's hoping this one is no different eh?!) Bill said he's the same..
I could go into my usual paranoid mode, I actually joked that maybe the reason we all have CFS is due to secret government testing - they were searching for the cure for the common cold and instead created us lot. Bastards.
Nah, I think the more logical explanation for the downturn in colds and flu amongst the CFS community is the lack of human contact. Most of us rarely interact with other people face to face these days, most of our socialising is done online, this means we are less likely to pick up the bugs preying on the general population - though the people who visit the hospital and the doctors surgery regularly are buggered..
Anyhow, the other thing to come out of the support group emails is the realisation that I need to rip apart my CFS website and update a few bits, add a few more bits and generally re-write most of what's up there, the information is still valid but i'm not happy with the wordyness of it.
The whole point of the site was to help other potential sufferers understand the thing and I've been looking at it with a jaundiced eye of late and know that, were I to be reading it on a semi bad day I'd just zone out - there's too much to take in and it's all depressing.
Yes, the bad news is there's no cure and there's no real treatment BUT I could at least write about how that's not the end of the world.
Anyhow, that's the task I've set for myself over the next few weeks, I'll be trawling the support site and various forums for snippets of helpful information/ tips and hints on coping and I'll be consolidating it all into one page and adding that to my site
Oh and for those of you who are interested - I've finally thrown up the interview Sean wrote up. I should probably have posted it on here since it's about M.E. and how I cope but I'd said on my other blog a while back that i'd post it over there so I did.
Thursday, August 16, 2007
It seems that July was a washout because I spent most of it on a couch or in bed. we made up for it in the first week of August though, Stef decided that we should join some friends who were camping in Wales, it's the first time I've used my blue badge (or 'my cripple badge' as we've taken to calling it) Unbelievably it really made a difference having that.
My stamina is shot to hell so being able to park closer to the places we wanted to go was a real bonus, ok so on 2 occasions I had to go back to the car before everyone was done, but it was still a help - though not as much as not having to pay for parking - I think that's going to be worth it's weight in gold!
I hate asking Stef to take me places because of the parking charges (and because he's not a taxi service) but now that little guilt has dropped away. Yup, me likee the blue badge scheme.
We got back from our camping trip and spent the day in bed before heading out for my brothers birthday, I then spent the next 2 days pretty much a wreck.
It's not all bad news though - far from it!
I may be physically buggered of late (not in the literal sense I hasten to add) but mentally I'm doing well. I've upped my VegEPA intake to 8 a day again and that seems to be paying off because although I'm tired and I keep getting headaches I can still function, there is no brain fog, very little confusion and my memory seems to be fine - in fact if I could just lose the verbal aphasia I'd be a really happy bunny, I can live with the fatigue; it's sounding like a moron when I talk to people that really burns me up!
I've been invited to contribute to a weblog discussing the social networks and this has kept me quite happy, I've also been trying to sort out my options upon moving. We're going down to Bushey this weekend to clear out the garage/ attic etc so that we'll have somewhere to store my stuff, whilst we're there I plan to go into Watford college and try to speak to someone about this years intake.
Fingers crossed I'm not too late eh?!
Sunday, July 22, 2007
Basically I dreamt I'd been blogging about CFS and through the blog had been offered a research opportunity, to have a thorough going over by a nutritionist and three different doctors (can't remember the specialties but they overlapped in some way) after establishing that i eat most of the right foods it turned out that drinking tap water was actually causing most of my problems - apparently certain bottled waters also contributed.
This then led to me going on a program researching the types of bottled water available and the actual mineral content of them - it was then narrowed down to 2 that were acceptable to me personally and if I only drank those I was basically cured.
The last portion of the dream I remember was emailing the support group to explain that I didn't in fact have ME/CFS I had been misdiagnosed. Instead I had a chemical intolerance that had built itself so high even trace amounts affected me, chlorine and a couple of other things were the main culprits of the fatigue, brain fog and various aches, I just had to rely on supplements and avoid those 'contaminants' as much as possible..
If only that were true eh?!
I could live without tea and coffee (decaf of course) it would be a wrench at first, a nice hot drink does wonders on a cold day - but if it meant regaining my former cognitive capabilities and not suffering this awful tiredness all the time.. Meh - no contest!
I'd also have to ensure any boiled water was water boiled from the 2 bottled sources and not from the tap, this could prove expensive as far as cooking etc goes - but I'm sure that could be worked around.. Basically I awoke with the name of this condition in my head - it was three initials; CT or CN something but the name dissolved even as I was forming the intention of googling it out of idle curiosity.
Would've been freaky to find such a condition existed. The thing is, after doing all the research and finding out what it was called, I had to go to my doctor to be tested for it - she refused on the grounds that they couldn't be sure that's what I had, I remember the agument and the disbelief that this was the way the NHS was going, her hands were tied though, it seems in my dreamworld that people were only sent for tests to confirm a known condition, because I already had a diagnosis of CFS/ME this dream doctor wouldl not send me for tests to confirm the illness I actually had - which meant I couldn't get financial help towards the plumbing changes it necessitated in my home..
Like I said, very realistic dream, quite disturbing. I guess it shows i'm still hoping after nearly 4 years to be told there's been a mistake *sigh* you'd think I'd know better by now.
Wednesday, July 18, 2007
It's been a busy time though so there's only myself to blame, I know what happens when I overdo it but I just didn't listen to reason this weekend.
But it was so worth it *grin*
I actually danced! I haven't had a good dance in years! my cousins wedding was brilliant - ok, the weather was pants, but the ceremony and reception made up for it, she looked stunning (I did too apparently, everyone kept saying so - so much so it felt like they were over compensating slightly.. but that's just my paranoia kicking in) and the atmosphere was just what you'd wish for; nary a fight and good times all round.
Sadly the all day event combined with the dancing and the incredibly late night wiped me out, I spent most of Monday in bed and yesterday was the same, I'm still aching to buggery and feel a tad shaky but at least I can mentally function again.
It's all proof of how well i'm doing though - just last year i'd have been out for a week after that kind of exertion, now it's only stolen 2 days from me.
Things are definitely looking up!
Saturday, July 14, 2007
Stef had to lift me out of bed, carry me to and from the bathroom and hoist me back into bed. Little reminders like this really suck.
Still, as Stef told me when the tears started this morning, "there's no point in crying babe, you have to expect it, you have this illness for life so it'll happen occasionally. You have been doing a lot lately" He then very sweetly reminded me that he's here to look after me and that I have nothing to worry about.
My man is the best.
I've had a full body massage, particular attention to my feet since a good foot rub can sometimes bring me out of it, when that failed he just made me as comfortable as possible and told me to sleep as soundly as possible through the banging and shouting from downstairs.
I must have managed it because I only vaguely remember Stef kissing me on the forehead and asking if I wanted a drink or anything before he went out (we're going to a wedding tomorrow and there's a couple of bits to get, serves me right for leaving it to the last minute really)
Anyhow, that was at about 9am so I should be ok. Going off past experience if i'm having a REALLY bad one i'm out for the entire day, it's only been about 4 hours and I'm up, brain is functioning and I've managed to fix myself a bowl of cereal.
Just means I need to take it easy so I won't spend too much time on the pc today..
I know it's not stress this time at any rate. The medical assessment doctor must have had a different reaction to my answers than Stef and I did because I had a letter through telling me I have my benefits for at least another year. Another stress reliever came in the form of a telephone call a few days ago.
We're moving. Finally, we're escaping the neighbours from hell.
In about a months time Stef and I will be relocating to Bushey in Watford. I can't wait.
Not only will I be an hour away from my best friend (as opposed to about 5 or 6) and the same distance from various other friends around the area, I've found a course at Watford college (franchised from the university) that far surpasses anything I'd hoped to do in Manchester.
I've been trying to sort out financing this week, all that running around is probably what contributed to todays little hiccup, but fingers crossed I'll be on that course come september.
If I'm not I'll be contacting the DEA in Bushey and trying to get some permitted work and applying to do my maths GCSE again (or whatever equivalent is offered on govt. programs alongside permitted work) I'll just try again next year for the course I want.
Either way, the future is looking bright, I have goals, I'll be surrounded by friends and I'm not letting a little thing like a lifelong chronic illness hold me back!
Now I'm going to sit by the window and listen to the massive fight going on downstairs - I can laugh instead of despair at my surroundings now an end is in sight *grin* Shame I have no popcorn to hand really ;0)
Thursday, July 05, 2007
I'm expecting to be told that I'm no longer eligible for incapacity benefit very shortly following the medical assessment I had yesterday.
I had a very nice doctor this time, he didn't make me feel defensive there was no looking down his nose or air of disgusted superiority. He had on a very nice tie though and I kept being distracted from the questions he was posing through admiration of it.
I think I am ready for work though I would much rather embark upon a course of re-training in web design as it would benefit me more in the long run. I guess I will have to see whether that option is available to me if (as I suspect) I'm soon to be on JSA as opposed to incapacity benefit.
After reviewing the answers I gave the assessing practitioner both Stef and I came to the conclusion that really it must be fear stopping me from working, it's a confidence thing .
I may be tired, I may not sleep well and I may be in pain all the time But.. I am able to function, not as well as I once did admittedly, but well enough to take on a course of study - which in turn means I'm well enough to hold down a job.. I think.
This being the case I have renewed my efforts to reestablish contact with Ms Brady of the DSS to see whether I can in fact opt for retraining.
I've found a course at mancat that looks like a good starting place - I've also come to the sad realisation that I'll have to re-do my maths G.C.S.E. There's no getting around it, an 'E' grade just won't cut it so these are my first 2 baby steps.
From there I'll need to look into finding a course to further my interest, probably some computer science degree thing but most of the ones I've looked at have a LOT of algebra modules (good job that was my fave part of the maths curriculum at school huh?!) which is what made me concede the need to upgrade my G.C.S.E. level (well that and an a-c grade is a mandatory requirement to get on the course)
I know.. Why computer science if I only want to be a web designer? Basically, long term I want to work from home, for this goal freelance web design would be ideal.
Realistically I know that is not something I could start up straight away, I'll need to find a company to work for and there is more demand for people knowledgeable about database maintenance than there are for freelance web designers.
My goals are:
- 2007-2008 Maths GCSE at grade c or above
- 2007-2008 Learn mysql and php
- computer science degree - preferably one with a work placement year.
- job within the I.T industry
- network network network
- work from home as a freelance web designer.
I'm at a point where I know I can work part time possibly full time but I'm still wary of doing too much in case of a relapse. So.. I have the choice of getting a part time monkey brain job that barely covers the bills and will end up going nowhere or staying skint a few years longer and re-training into something more like a career.
I just hope I have the option to pursue my first choice, I've done enough monkey brain low paid jobs to last a life time, that's what probably put me in this situation in the first place - this time around I want a different, more fulfilling life.
Fingers crossed eh?!
Sunday, June 24, 2007
We're at the in-laws this weekend, Stef's helping tile the kitchen floor and I needed to get away from the flat. He's suggested we speak to them about moving in here. On the one hand that would be brilliant, I'd be closer to my best mate and all the online friends I've made on the karaoke forums and twitter, I wouldn't be living above a self centred wanker and I'd have more motivation to get up and push myself to do things. On the other hand, I'm 31 - do I really want to be moving into the house of my partners parents?
It's all moot at present anyhow since the subject has yet to be broached, but if we are going to move to the south, I need to know soon so I can start sorting out things like benefits/ college/ dr etc etc.
I have a new medical assessment next Wednesday so I'll pace myself and ensure I don't have another bed day when it comes around, I don't mind being cacky and mobile but the bed days suck.
Wednesday, June 13, 2007
These days it holds a lot more meaning for me, just read the lyrics and I think you may understand why:
All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something
Feeling like I'm headed for a breakdown
And I don't know why
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be...me
I'm talking to myself in public
Dodging glances on the train
And I know, I know they've all been talking about me
I can hear them whisper
And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow I've lost my mind
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be
I've been talking in my sleep
Pretty soon they'll come to get me
Yeah, they're taking me away
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be
Yeah, how I used to be
How I used to be
Well, I'm just a little unwell
How I used to be
How I used to be
I'm just a little unwell
Which is why I'm putting an mp3 of myself singing the karaoke version
Tuesday, June 12, 2007
I just had a call from a lady with a very broad Irish accent organising a medical assessment for me. This one is to do with my claim for incapacity benefit. now, I knwo I want to get back to work, but I don't want to get forced back into full time work straight away because I knwo that will just lead to a full on relapse, I'm not prepared to deal with that again, it's taken me years to get to the stage I am now, I refuse to start from scratch and have to be carried to the toilet and forced to feed.
Yup, I'm cacking it. OK, so I know the criteria is slightly different for Incapacity benefit than it is for DLA but logic does not stop the stomach clenching, throat tightening 'oh shit' sensation that has practically paralysed me since I got off the phone.
I'm subsisting financially as it is - and that's with Stef contributing towards bills and things, if i lose this.. I know, I need to think positive and keep my spirits up or else i'll end up back in bed and lose all the ground I've gained this year, but man! I wish I could react better to stress than this.
Saturday, June 09, 2007
The only reason I'm even writing this is because I feel I need to force myself to do something other than crawl back into bed - I can't even get up the urge to do any singing.
I woke up yesterday feeling as though a layer of fog had been peeled away - it's the brightest I'd felt in weeks! Sadly an intensely emotional argument in the afternoon put paid to that. I still have a headache from all that crying and I'm back to feeling totally wiped out again.
I know there's things about the flat that need doing, I know there's things on my pc that need sorting out - I also know I should go and have a shower and get dressed, I just can't bring myself to do any of it.
I'm just so tired! Emotionally, mentally and physically knackered. All I want to do is lie down (despite knowing I can't sleep) just bury my head under the covers and hope the world goes away.
I'm not 'depressed' as such, I'm just past caring, everything is 'too much hassle' 'why bother' 'who cares' 'do it another day'.
I'm kinda numb.
It's not because of the argument - that was resolved quite quickly, though it was incredibly upsetting at the time. I'm just 'meh' and trying hard not to be - hence this digital blathering.
I'm thinking that maybe the mere act of writing all this out will kickstart something in me and I will hit the shower, I will do the washing up, I will sort out my clothes..
Except I just really can't be arsed.
I hurt everywhere and on top of that, even though it's a week early I'm feeling the onset of period pains and as mentioned before, I'm just too tired to care.
I'm hungry, but I just can't face making anything and I've nothing 'snack-y' in (except chocolate and I don't want to eat chocolate) I'm thirsty but I don't want tap water because the chlorine smell knocks me sick and I've run out of bottled water and juice.
gah! it's hopeless, I've just stared at the screen for the past 5 minutes while my mind blanked out. Today is another lost day, I should just face it as such and crawl back into my pit
Monday, June 04, 2007
That nugget of info perked me up no end, it's nice to have confirmation you CAN do something when most of the time you are all to aware of the things you can't do.
I think my ear infection is back so I'm going to have to head to the doctors again, pain in the arse it is, but it's cheaper than going to buy the medication, that's the one bonus of a longterm sickness - no prescription charges!
I'm still sore, I'm still knackerd but at least I'm not crying or wanting to murder anyone at the moment, which makes a pleasant change..
Friday, May 11, 2007
I've spent Tuesday to yesterday evening recovering (ie in bed and on the couch) and can't even call to reschedule until monday - assuming she'll let me since I didn't call to let her know I wasn't going in (bit hard to do when you can't get to a phone or form a proper sentance)
Meh, we'll see, hopefully it'll be ok once I explain what happened, in the meantime I need to get back on schedule and PACE!
I am starting up my driving lessons again next week though. I'm hoping dad is going to give me some birthday money when I see him on saturday so I can add to my savings and make a block booking,
Apparantly this guy Kay used gives you a taster lesson for free to assess you and then takes a stab at how many you need, she passed first time with him so fingers crossed I can too - she's a mental driver so I can't see why I wouldn't..
Monday, April 30, 2007
On the plus side she was very positive about the fact that I have several options, I just have to wait until my next appointment on May 8th to look at the specifics of those options as without a working system she could not access my file or any of the relevant information - so much for technology eh?!
She had me email a copy of my cv (updated of course) and a list of the types of courses I've been looking at with regards re-training, not sure if they got through to be honest since I've had no response, i'll just make sure I take the information with me in hard copy form when I go see her (and also on my usb memory stick in txt format - just in case..)
That's one thing dealing with the benefits agency does for you - it certainly makes you think of back up systems for everything you do, if you have a project then just immediately assume you're dealing with people who are really incompetant working on a system prone to crashing. You'll soon come across as uber organised!
Meh, roll on hearing some good news, I'm lookign forward to taking control of my life again.
Saturday, April 21, 2007
I just don't know what to expect at all. I've talked it through with Stef and he thinks it would help more in the long run if I try and get them to help me re-train in web design. I just don't know if they'll do that.
I'm also a little afraid that when I explain my problems she'll say there's not really anything they can offer me, I've taken this step, I really don't want to be shot down in flames at the first meeting.
I'm also afraid of having a relapse, I don't handle stress at all. I keep flashing back to some of my old jobs and the tightening in my chest makes me feel ill as I think of all the office politics and thoughtless managers I've had to deal with in the past.
Then I tell myself to stop being stupid, I won't be working in sales or customer service for those exact reasons, if they try to push me in those directions because of my experience i'll just have to take a stand and say NO!
These people are supposed to be here to help, there are several lasses in the support group who have used them and can't sing their praises enough. It will be ok, the worst that can happen is they say that in their opinion I'm not ready for work just yet and that will leave me no worse off than I am now.
I just really don't want to hear that.
Best case scenario for me is that they help me find a course in IT/ web design somewhere and offer help in the way of equipment and travel costs, that would help sort me out in the long term, short term; find me a job that I can either do from home or that doesn't involve me having to deal with too many people face to face or travel too far.
I just wish monday was here so I don't have this uncertainty to deal with, I want to start sorting out my future, either by starting to earn money to save towards it or by training so that i can better myself. There's nothing worse than stagnating!
Tuesday, April 17, 2007
I've been reading and reading and finally started to comment only to realise my comment was becoming a full blown post in its own right, rather than erase everything I decided to copy and paste it in here because this is MY place for MY thoughts on CFS and if I'm going to take up a lot of space, it's far more polite to do it here instead of eating up someone else's webspace..
Anyhow, a few of the comments to his articles were involved with classifications/ names and the like to them I write:
I had an initial diagnosis of PVFS about 3-4 years ago,
Now I'm classed as either CFS or ME depending on which medical person you're talking to, I've no idea when the diagnosis changed but when talking to someone I tend to use CFS as you can at least tell people what the acronym stands for - M.E. has 2 different names according to my research for the site I built about the subject (which needs updating desperately) both of which seem unpronouncable at the best of times - never mind when you're having trouble verbalising a sentance.
The things is, I really don't care what it's called but I need a name to write on the 1001 forms you're forced to fill out to keep a roof over your head when you can't work a steady job. Every time I go to see my doctor I'm praying he says "ahh.. Miss Stringer, sorry about the last few years, you were misdiagnosed, here - take these shots/ pills and you'll be fine"
I'd be too happy about being able to go back to work and being able to look at the prospect of having children without the worries of a relapse to care about a little thing like misdiagnosis.
On the aforementioned blog there is a lot of talk about Lyme disease but from just reading that wikipedia link it seems impossible to differentiate between it and CFS is it that you can test for Lyme but not CFS, or is there still no way of telling apart from a rash?
To be honest I'm almost afraid to look into it because I hate feeling like a hypochindriac, I especially hate it when my boyfriend - the person who has been the most supportive person imaginable throughout this whole thing, laughs at me and says I'm reading into things and then convincing myself I could have it - I don't, at least I tell myself I don't do that.
But do I?
If I'm completely honest with myself, I do - a little.
For example - my elbows, the pins and needles in my hands, the pain that travels up my arms into my shoulders and neck that cause the headaches.. I thought I'd found a cause for them but when I mentioned it to him, he laughed - so I didn't go to my doctor.. I should, but I don't want to have the hypochondriac label even more firmly attatched to me than it already is over the CFS one.
Is it because I'm so desperate to not have CFS/ME that I'll look at things which are treatable and mentally slot my symptoms into that shell instead of the CFS one? Or is it the more reasonable desire to know WHATS WRONG? To want to find a root cause for the problems before me so that I can understand them and find a solution.
I've been alternately researching symptoms and burying my head in the sand for so long that I no longer know just what drives me to care anymore.
(Now this is the point where every other sufferer I know will probably clamour to have me burnt at the stake..)
I do believe there is a psychological aspect to this illness and that is why CBT does help some patients and not others.
Some patients have had this for decades and have received little to no help from a recognised medical professional, they have been ridiculed by friends and family and termed a hypochondriac by one and all - these people are so depressed by the effects of the illness that it has come to define them, they respond to almost anything put forward in a kneejerk defensive manner - the 'ill try it but it wont help' attitude because they have tried practically everything available already.
CBT will only help someone who is truly open to accepting the illness and finding ways of managing to live around it - that would be the people 'new' to the illness, those still unsure just what it is they have and what the hell does it all mean. The people I mentioned before have had the illness for so long that they're stuck in the 'fighting it' stage, they will never truly accept it because how can you accept something about yourself that nobody else will?
I'm not sure if that made any sense, I guess what I'm trying to say is that CBT is a way for patients to define just what cfs means to them and then in turn helping that patient come to terms with all that definition means, people who have suffered with it for a long time already know what it means to them and therefore feel they are being patronised to and cannot take on the second part of the therapy - the part where they can come to terms with it, they already feel that they have - In other words CBT is a waste of time and resources for these people - all they really want is for people to take them seriously, becoming well is now a secondary wish because it seems a futile one.
Until there's a cure there's no point doing more than learning to manage it, in my opinion to do otherwise just stresses you out which in turn exacerbates all of your symptoms and so on and so forth the vicious circle runs ever on - the problem is, how best to manage it?
Which is why I worry about hypochondria and still occasionally look for alternative explanations for my condition on the sly.
Now I'm off to read Marys blog because from her comments over at NHS Doc she seems to be right on my wavelength..
Saturday, April 14, 2007
they have been for a while - even before the fatigue thing started so that makes it several years, funny how I forgot they used to hurt before, blogs are great memory nudgers I guess. But of all the joit aches I have evry day, the elbows hurt the most.
Even with the 'sleepy pills' I couldn't sleep last night, the pain was just that bad. I dozed on and off but didn't really hit sleep, the one time I got comfy Stef decided he'd roll over and cuddle me and I couldn't find the comfy spot again..
I wouldn't mind but when something hurts that much it just makes all the other aches feel worse, now my wrists and my shoulders, right up to my neck, all hurt - I know, sitting hunched over a keyboard won't help, but I have to distract myself somehow.
I'm groggy and irritable from the lack of sleep and the pain but what can you do?
My elbows feel like they're on fire, it's as though the muscle or something is in the wrong place and it's stratched and fraying on both arms.. I can't straighten my arms when I'm in bed, they're always bent - I'm the most comfortable when they're raised above my head but I can't sleep that way when Stefs next to me because I've got a crappy mattress and as soon as he lies down I roll into him because of the weight difference.
I'm just sore, depressed and fed up.
Tuesday, April 03, 2007
I've been doing reasonably well sticking to the sleep schedule barring a couple of late nights and bad days, but since Saturday I've been lying awake with the adrenalin kicking in every single time a security light goes on or I hear the gate slam (which is a lot seeing as how they kicked in the gate as well so there's not catch to stop it)
Anyway, since I don't want to balls up the progress I've been making I went to the doctor for something to help me sleep.
I told him the situation, he was most sympathetic - actually told me to move as soon as possible, he took one look at my address, read out the street name and said he wasn't at all surprised, he's got a couple of patients along here that similar things have happened to, all older than me but classed as 'easy targets'.
He did not wish to give me sleeping tablets because, not only would he only be able to give me a weeks supply, they are highly addictive. Instead he's prescribed a course of antihistamines.
Apparantly they do the job just as well, as a bonus they should help with the dust allergy I seem to have and I can have a months worth.
Now all I have to do is wait for the council to come fit a new front door.
On the cold front, it seems the ginger method is working, I only had the sniffles for a couple of days, I do have a tickly cough but that could be because of all the dust in here, it's ridiculous how much you get in this flat.
Here's hoping we find somewhere decent to move before the end of the month - I could well do without all this!
Tuesday, March 27, 2007
I've spoken to the jobcentreplus people and they're arranging for an adviser to call me, in the hopes I can sort out either a training course or even (please god!) a job.
I've been sitting around waiting to be well enough to work and that hasn't happened, so instead i'm being pro-active, I'm going to try and find a job that works around me instead of it being the other way around.
Who knows - if i'm lucky they may be able to send me on a web-design course, or even offer me some in-house training somewhere so I can get paid while I learn.. Anything has to be better than the way i'm doing things now - and if the worst happens and I end up having a relapse..? Tough, I've not lost anything and at least I'll have tried.
This is about self-respect and making my life better, ok, things are not that bad - I do like having the time to do what I like, but at the same time, I want to be paying my way and not worrying about money all the time - for that to be resolved I need a job.
Fingers crossed this works out for me!
Friday, March 16, 2007
Neither of which are on the timetable - and I only rested for about 30 minutes in the evening.
Which is why today I had the full on 'cataplexy' thing going on, I was awake(ish) I was certainly aware of things in my immediate vicinity - I just couldn't move a muscle, everything was fused almost solidly into whatever position I'd fallen whilst asleep - so at least I was comfortable eh?!
Finally managed to get up around 1.30pm, had a small bite to eat and my pills then checked my mail - now I'm here.
Why am I here?
Well, one of my emails included this link and having gone through the site I wanted to work something through for myself.
This paragraph really struck a chord - it's exactly what I've tried to explain to others but couldn't:
if you have ME/CFS you cannot allow yourself to fully experience all your symptoms all the time, or you would never get through the day. Out of necessity we detatch ourselves from our symptoms to some extent because that's the only way to survive ME/CFSThe thing that really struck me though was the section on reverse therapy. I've heard of the process before but it's another one of those treatments that has made something inside me rebel at the thought of trying it - an instinctive rejection of something that will not help and will only cost me money I don't have.
There's a lot of those kind of therapies around.
Having read about Matthews experiences I can honestly say I'm still not sold on the idea myself - but there are some parts of it that made me go "hmm.. actually, there may be something in that"
For me it was this portion that struck a nerve:
It made me think of my responses to my mother - how the second I made the decision to never have her as a part of my life again, most of my symptoms practically vanished, how if I dream about her or one of the family bring up the subject I start having problems again. I know that's a very simplistic way of looking at things - but it's also an undeniable fact that I'm a healthier, happier person if she is not in my thoughts, never mind my life.
Getting your body to trust you again
For most people of course ME/CFS is post viral. But to the body/mind a threat is a threat - physical injury, a virus, stressful life events etc, they are all the same. After these experiences the body goes into a heightened state of alert but we carry on because we don't know what else to do. The sense of something being wrong gets stored in the body tissue and a concious realisation that the problem has been solved is not likely to release it. For example, during my illness the backs of my legs continued to be stiff and despite years of Yoga practice, any exercise to stretch them just resulted in the legs stiffening up again, and I experienced an increase in tiredness.
After the second session I realised my concious mind knows I have no intentention of returning to the house where I was assaulted, but my body did not! So I did a Yoga stretch pulling on the backs of my legs, then thought to myself "I will never again live in the house where I was assaulted". I waited a few seconds, and lo and behold, the muscles just let go in a way they hadn't done for 3 years! I then promised myself, outloud, to "never again run on empty", as I had when working whilst being exhausted by the head injury. And I got the same result!
The problem is, how can I make it clear to myself that she is going to remain a stranger? Short of cutting off from the rest of my family completely I can't guarentee it so it's not as though I can make that kind of promise to myself and keep it, perhaps this is why I'm so eager to move as far away from Manchester as possible? Could this be the subconcious reason I'm so happy when I'm looking for a new home and so depressed when it falls through?
But then of course, I could just be grasping at straws again to explain my symptoms and she's conveniently easy to blame
Anyhow, this site is definitely worth a look, if only for the eye exercises, the miso soup recipe and the yoga demonstration.
Sunday, March 11, 2007
That's right, we've decided that we're right royally sick of the muppet downstairs - even though we can mainly tune him out these days. Instead we're looking at moving home, possibly Knutsford way - perhaps even as far as Sandbach.
I'm no longer bothered about getting a decent doctor so it doesn't matter where we move - lets face it, I have a fantastic doc now but he can't do anything for me.
I had a long hard look at myself when the DLA decision came through denying me any money and I've come to the conclusion it is probably a justified decision.
Before I went into hospital for the perianal abcess experience back in.. um.. October? November..? Meh! Whenever it was. Anyhow, prior to that I was doing really well, but I was pacing properly and making a concerted effort to stick to a healthy diet and a decent schedule, that lapsed pretty much as soon as my backside broke out and I've not really tried properly to bring it back - this is why I'm so crap at present, I have no one to blame but myself.
The worst part is I know better! I wrote an entire page on the benefits of pacing for my website! I know eating and drinking certain things help more than others. I know beyond a shadow of a doubt that diet has probably the biggest impact on my ability to manage this illness than anything else, yet I've been lazy, I've allowed myself to sink further backwards because it's easier to let Stef do everything, if he doesn't feed me, I don't eat - even when I'm at a suitable level of energy to make something, If he doesn't tell me I forget to take my pills, I don't go to bed or get up at set times..
I've allowed myself to become a leech. That's about to change, I had a look at my life and what I'm becoming and I don't like it one little bit.
Hence the chat we had earlier.
I've made a timetable for myself as I did the last time things were going well. the only things written in blood (or coloured in red) are meal times and waking/ sleeping times. I have pencilled in a cleaning rota interspersed with rest periods and free time, but these are subject to change depending on the demands of the week. I've also gone a step further and done a little nutritional research.
Since Stef want's to lose weight and has asked me to help him with this I've devised a shopping list and provisional meal plan using the Glyceamic index sadly this means I have to give up a lot of my comfort foods - the worst being mashed potato (my absolute favourite) in favour of things like lentils, it's not as bad as it sounds though, Stef is an amazing cook so he even manages to make lentils taste delicious - but it's not the same as a proper plate of mash is it?
The upshot of all this is
See, I'm back to being a positive bunny again - it's amazing what a kick to the head will do for you sometimes..
Sunday, February 25, 2007
Ever since I came down with this illness it's been a case of one extreme or the other - I can either walk or I can't, I can speak and be understood - or I can't.
Now though, it's horrible. I felt up for the walk so I set out as normal - within about 50 yards I was forcing myself to put one foot in front of the other, my pace was a crawl and I was actually chanting silently to myself to keep going, a 15 minute walk took me over an hour - and getting back was a major trial. I made the mistake of pushing myself to get some cleaning stuff from the precinct (and nearly died of shock when I found the savers had changed to a superdrug, how long has it been since I last went shopping?!)
ANyhow, by the time I got home i'd been gone 2 and a half hours, on a normal day it would take 30minutes tops to do my errend and get home, I made it through the front door and sat down crying at the thought of pulling myself up the stairs for a sit down.
I finally made it upstairs and basically crashed until Stef came in. It was a rotten day all told.
The next day ended up being even worse. I had a shower and as I went to get out my left leg gave way and I fell quite painfully - i managed to hit the sink, radiator and the side of the bath on my way to the floor, Stef was unable to get in to help me because with me on the floor he couldn't open the door - I really don't want to have to go back to showering with the door open 'just in case', it's been ages since this has happened, I'm tired ALL the time, my head is a foggy mess, i cant retain any knowledge and its no good trying to give me instructions to follow - all I hear is "blah then you blah blah blah before blah blah"
*sigh* at least I can still bead.
Tuesday, February 20, 2007
It's amazing how much brighter the day feels when you feel a lessoning of pain isn't it? it's miserable as sin outside yet I'm feeling happy and relaxed, I'm even planning a walk down to the bank later so I can pay some bills (just waiting on my hair to dry, i've been a skank for days but today I felt up to full on cleansing, nothing beats feeling clean, warm and 'well')
Right, breakfast, pills and on with the day. *grin* my life rocks.
Monday, February 19, 2007
Woke up around 10, got up about 11, checked 2 emails and ended up back in bed - too dizzy to not be.
By 2pm was dying for food but couldn't get anything, visons of my stocked fridge and cupboard were taunting me and there was nothing i could do about it.
Stef cooked me something around 4ish and i'm back on the pc trying to wake up and show willing.
reckon i'll go back to bed shortly, i ache everywhere
pathetic, weak, shaky, dizzy achey mess.
m.e. sux ass!
Sunday, February 18, 2007
I woke up and managed to get out of bed without having to push myself (which is always a good sign *grin*) I even put in a load of washing and remembered to take my pills (go me!) Sadly I took it a step too far and went shopping.
Bear in mind it's been weeks since I've been in any fit state to go far, let alone carry things. Anyhow, I managed to get to Aldi, got a trolley to lean on even though I wasn't buying much - this proved to be a fatal error because instead of using my Ruksac as a basket like I normally do in there (best way of making sure you don't get too much) I ended up with 2 extra carrier bags, ok so the bags only had bread and pasta in them, it was still more than i've lifted in quite some time, I was absolutely shattered when I got home.
Sat at the bottom of the stairs for a few minutes then forced myself up to get the stuff unpacked before I crashed.
Wasn't out of it for long though *grin* and the rest meant despite an initial lack of enthusiasm, about an hour or so after Stef had gone for drinks with a mutual friend, I went out to meet up with them, It has been a very pleasent evening all told - it was quite pleasent being greeted by name by the landlady even though it's a good 6 months at least since I was last in there, she asked how i'd been/ where i'd been etc and was generally made to feel as though I've never been away *sigh* I miss going out sometimes, today has been ace!
Unfortunately, i'm aching all over and my throat has been killing me all day - but that aside, I think I may actually get some real sleep tonight, hope so - this flat needs a really thorough cleaning and I've earmarked this week to do it!
Thursday, February 15, 2007
I can't believe how down the whole thing has made me, I'm sure I didn't feel this bad last time I had one. Mind you last time I went stef was practically carrying me and I struggled to do the physical things so I doubt they were as sceptical about my claims as the guy was this time.
It just sucks major donkey bollocks.
Friday, February 09, 2007
I've been worried about this because the last time I had a medical assessment they took more money off me - hence my current ridiculously in debt financial state. The thing is - if I were trying it on i'd just shrug my shoulders and get a job, sadly I'm not and I cant so this is almost literally life or death stuff for me (only 'almost' because I'm sure stef wouldn't see me homeless or starving)
You see I always downplay how this affects me mentally because I don't class myself as depressed, yes it gets me down - but the way they use the term 'depressed' makes me think i'm going to have pills forced upon me and I don't want that. i'm not suicidal i'm just frustrated and worried and quite frankly fed up of being left to rot by the medical system.
Here's what I mean by that last remark:
Whilst we were going over my paperwork today we found the last letter I recieved from my 'specialist' at hope hospital, it's dated 24/07/2006
In it Dr Haeney ends the letter by saying:
I will see her, probably, for a final review in 2-3 months time.It was that 'probably' that tickled Kevin.
It's now 7 months since our last meeting and I've heard nothing from his office. I'm not surprised though, he said himself at our last meeting that there is nothing he can offer me, I've done the CBT and been discharged and I attempted the energy for life program at NMGH which means to all intents and purposes they've exhausted whats on offer in the way of treatment, I'm on my own.
Gotta love 'em. But that's why I haven't bothered pursueing the lack of correspondance, he's already said theres nothing he can do - why waste my tima and his with a trip in there to be told the same thing again? At least he can give his time to people he can help if i'm not sat there asking questions he has no way of answering.
Meh, no matter. I'm expecting to be called for another assessment for my incapacity benefit as soon as they receive my forms so I guess I can just suck it up and pray I get a doc who understands this illness and will judge my case on its own merits instead of lumping me with the blaggers out there.
Oh.. and the ear infection has not gone, it's masquerading as a throat infection - at least thats what I guess is happening with my throat, it aches and feels swollen but for once there's no visible ulceration and as long as I stay hydrated I can swallow without too much discomfort. I will go to the docs about it, but i'll wait til after this medical assessment, you never know - they may spot something and save me a trip.
Tuesday, February 06, 2007
I'm sick of aching, it used to be that i'd ache when it was hot - now i ache when it's cold, it's like my muscles fuse into place and when I move them the 'crack' is audible.
It sucks major donkey bollocks.
I'm completely back in the unrefreshed sleep camp - probably my own fault since I've not been going to bed until gone 1am, but i'm just lying there for a good hour before I doze off, then i'm skimming sleep all night, constanty waking up and dozing off unable to hit deep sleep.
and I ache. Really ache - everywhere, my back, my arms, my legs, my neck and shoulders..
I'm a 30 year old woman inhabiting he body of a 72 year old.
At least that's how it feels.
I can guess forever as to what's causing this but i'll never be right - I know stress is not helping, I'm worried about money again, i've got to fill in my incapacity benefit forms but as soon as i sit down with them i get panicky and hit meltdown and just go back to bed - i can't keep doing that because they need to be in soon.
Guess I should call welfare rights again.
The thing is, i know about all these new guidelines they have regarding ME/CFS which means that since i'm apparantly a 'moderate' case I may not be eligible for full benefits - i'm barely scraping by now, actually i'm not scraping by, i'd be buggered if it wasn't for my overdraft and that's being slowly eaten away again. I'm just stressed.
Monday, February 05, 2007
Why do I never learn? I'm back on the boom and bust routine because it's the only way I get to do things.
On the plus side I think the ear infection's gone - on the downside I've now got a throat infection.
The upswing I thought I was on through mucho water drinkage was obviously that high you get when your body first starts to fight off infection - I should've known, I've been in far too good of a maood the last few days - even despite not sleeping properly.
I'm back to feeling no refreshment from my sleep, needing to have a doze in the day - despite staying in bed til gone 12 most days, I ache everywhere and the wanker downstairs isn't helping matters.
He stopped playing his music around 1.30am and started up again at 5.23am, the guy must be on drugs or something!
I'm only up now because I tried to make an appointment to see my doctor - sadly the best they could do is next monday, she said to ring in tomorrow morning for an emergency one if i needed sooner - I have to get something for my throat - it hurts to swallow and i had trouble breathing last night, 1000mg of paracetamol took the edge off but I'd rather get a spray that targets the area than painfully swallow pills that don't.
Friday, February 02, 2007
It has to say something about this illness that I'd rather have anything else - preferably something treatable.
As it is, I've been looking into the causes of dehydration, and I can't help wondering if the normal diabetes test brings up all the different types - could I be diabetic? all my symptoms seem to be the same as that of a diabetic, could I have been misdiagnosed? please god let me have been misdiagnosed - I could get treatment then and go back to work!
Or could I have some adrenal or glandular problem - or maybe it is because of my teeth? my teeth are terrible, I'm always getting mouth ulcers.. Perhaps its a mineral deficiency..?
The list goes on and I end up feeling like a hypchondriac again, you'd think after three years I'd be resigned to my diagnosis and just getting on with things - not so, every time I go to a dr or a specialist there is a small voice in the back of my head praying to hear the words "Actually miss Stringer, you appear to have [insert virus/ illness here] I don't know how we missed it before but if you start taking these pills you'l be back to normal in no time." It's ridiculous I know, but each time that's what happens and my hopes are dashed because the consultant in question never answers my prayer.
This is an ongoing mental cycle, I start researching some symptom or treatment that has been bothering someone in the support group, I get information overload, start to feel depressed and then try not to think about the illness at all for as long as possible - at that point I usually stop going online as well because I know i'll be emailed about it and I'm avoiding even thinking about it.
That's basically how I get through my life - I just try not to think about the illness. When I do it's in an abstract way, it's not me, it's just something of interest.. Until I start thinking about me and my life and how it affects me then I get depressed and in order to stop feeling depressed I shut off from it all.. and so on.
Recently I've found I can talk about it to people - but then it seems like that's all I talk about, when I realise the direction the conversation has taken I start to try steering it away, but for some reason people then seem more interested and I get in a tizz trying to both explain what it is and what having it means - and simultaneously trying to think of something else to talk about before I reach the point the tears start - and they do, the second I stop managing to fool my brain into thinking this isn't personal I get a wave of emotion and the upset brings about embarrassing emotional outbursts.
Surely there's more to me than this?!
Ah well, I guess I should just prepare for another outburst of depression - it's time to fill in the incapacity benefit forms again - bit hard to ignore something when you have to write about it in detail in order to recieve an income eh?!
Tuesday, January 23, 2007
It has made me wonder though - i thought the dehydration thing was a symptom.. what if it's actually a contributing factor?and Louise swiftly responded thusly:
I was just talking to stef about it and he says i'm actually better when i'm drinking loads - I know when I was in Italy I handled everything fine - and we walked for MILES over there! but I was drinking water practically constantly all day every day because of the heat.
I know I was amazed at how well I coped, but I did have a mini relapse when I got back - but by then I'd gone back to my normal 'drink when I notice i'm thristy' routine - which is definitely nowhere near the rda..
It's just, ever since I first got this thing I'm always thirsty - so much so it becomes a background thing that you ignore until you can't anymore - and my lips are constantly dry and flaking, i get mouth ulcers all the time and.. well i'm just dry and run down even without the cfs stuff.
There could be something in what you say as Dr David Bell, chair of the CFS advisory committee in the US, says you can reverse the symptoms of ME, but it only lasts 6 weeks, by giving an ME sufferer saline infusions. Also, there is research saying people with ME have low blood volume and water and salt increase blood volume. Drinking enough water is definitely essential for people with ME considering the research that points that way.Which then made me want to know more.
This article gives quite a thorough accounting of the ways in which dehydration could be responsible for many of the symptoms of cfs - and I have to agree with it because those symptoms lessoned when I was in Italy and drinking more than my body weight in water - I had no aches and I didn't suffer any more than the people I was with after all that walking.
Now, the website of Dr David s Bell gives an account of the saline infusions Louise mentioned, I know when I was in hospital and they had me on a drip that was simply saline, I felt 'fresher' my lips plumped out a bit and lost the dry flakiness that I always seem to have these days - my eyes also lost the 'gumminess' I always have, even when they're not dry they feel 'tacky' as though they're drying out..
Still, it's unlikely we'll be offered anything like a weekly/ daily saline infusion in the uk so it's pointless going down this road. But I'm still going to try and up my water intake (she says.. )
I've just realised i've not had a drink yet today and it's already 1.20pm I need to set up a reminder system on my phone, if I drink a pint every hour it'll be approaching my italy intake and that's one way of determining the difference.
Monday, January 22, 2007
It's kinda nice to think that perhaps we did have something to do with that article being written, you never know, maybe we did.
It's funny though, reading the part at the end of the article about a personal experience has led me to realise something.. I too have dry itchy eyes just before a bad bout, I thought it was just that dehydration was a result of the cfs kicking in badly - but I have to wonder.. Do I get a really bad time of it when I'm more dehydrated? is dehydration a cause rather than a symptom? i fely great in Italy, but I was drinking a hell of a lot more water over there than I was here and I was taking an afternoon nap every day..
Who knows? I may have to ask my specialist - assuming I ever get to see him again, I'm thinking of asking my doc if he'll refer me to the clinic all the bury/ bolton lot go to - i'm guessing he won't be able to because of cachement areas etc but it's worth a try..
Thursday, January 11, 2007
Wednesday, January 10, 2007
I finally managed to get up at 3.15pm, had a shower and basically monged about since then - can't wash my hair though *sniff* it's manky as sin but I'm not allowed to get water in my ears and I've not got any cotton wool yet to plug them with - it's driving me nuts!
On the plus side - while I may be physically whacked today, I seem to be mostly there on the mental front.
Makes a nice change lately.
If only the painkillers were working *sniff*
That aside, I need to rest, I've got another band rehearsal tomorrow night that I need to be fit for - it seems we're doing our first gig on march 3rd and so they've upped the tempo on me to 2 a week (and lets face it, we need the rehearsals!)
I'm just a tad worried about how this will affect me though, after just 4 songs last night the shakes kicked in and I ended up sat on a chair for the rest of the practice session - this does not bode well for a kick ass rock show and it really doesn't bode well for the next month or so, I'll pace it of course, but it means instead of losing 2 days to resting for rehearsals I'm now losing 4 so apart from mondays that's my week sewn up (I don't like to go out at weekends if I can help it, I don't handle crowds too well) and then there's the stress of the performance itself..
I get nervous enough about going on stage when I don't have the image of a very public crash at the back of my mind - I'm thinking a few calming techniques are needed before then. That and a back up singer.
To make matters worse, they're talking about buying a new mixer for the band, i hate that I'm not contributing my share - they pay for the rehearsal space and any drinks, I get chauffered to and from the place and now they're buying more equipment. I'm such a scrounger!
And no sign of a response to my DLA claim yet.
I need to start selling things soon, it's my only financial recourse.
Tuesday, January 09, 2007
doing whatever, can't find the words i need and it's pissing me off.
To pinch a paragraph from my main blog:
someone’s flicked the power switch again and i’m on full pelt, adrenaline overload - my system is buzzing like a buzzy thing and it’s not good - it means either later today or for most of tomorrow I will crash, hopefully not today as I have a doctors appointment at 4.25 and i’d like to make this one - the last one never happened because I couldn’t get out of bed.
There was newspaper snippet passed round the bury/bolton support boards on sunday and a few of us have responded in e-letter form in the vain hope someone takes notice, I won't hold my breath - but it'll be interesting to see if something is said.
I need to try and focus, can't go to the docs like this - how can I tell him what I need to if i can't figure out what it is I need to say? gah! I hate this thing sometimes.. actually I hate this thing all the time, i just try not to think about it as often as possible, that's probably why i'm on 'hyper' it stresses me out - especially with regards finances, I still haven't contacted the social about the amount their raping from me each fortnight, i just can't focus enough to communicate with someone who doesn't know me - i sound like a complete idiot on the phone, maybe i'm more sensitive about it because i used to work in a call center and i know the mindset of the operators, whatever the cause i hate to sound like a tit.
Friday, January 05, 2007
Anyhow, I've been given a spray to use three times daily and instructions to give my GP a copy of the prescription as I'll need to keep it up for a while *sigh* I wouldn't mind but it smells like photographic developing fluid and it's uncomfortable to say the least, I'm not supposed to get water in my ears and then this spray fills me up and leaks down my neck *shudders* and it sort of burns - not in an uncomfortable way, more like it's stimulating my inner heating system, still, as long as it gets rid eh?!.
*grin* just looked up the active ingredients in the spray - apparantly it's used for difficult ear infections especially in dogs! LOL
That's tickled me that has. Ah well, maybe in my next life I can be a cat or dog - they get better medical care than humans do!
Tuesday, January 02, 2007
The first one wasn't so bad, we were in church Christmas morning and I just sat slumped on the pew with Stef holding me up before half carrying me out to the car at the end of the service.
Last night was worse.
I'm not sure what brought it on - I'm only guessing when I blame the speciality tea I was drinking. It felt like I'd had an espresso, the jumpiness, the sensation of something bubbling just under my skin (not a pleasant sensation I assure you) then I crashed totally - it's like when a pc is hit by a power surge, there's a split second of all system functions going nuts then it just shuts off - that was me.
I was the dreaded blue screen of death last night.
It didn't help we were visiting people who lived in a flat at the top of 3-4 flights of stairs, it took 2 people to carry me down them after Stef had put my shoes and coat on, another person trailing behind carrying my belongings, then being stuffed into the car only to repeat the process at the other end.
What makes it worse is that I get so frustrated at not being able to move or help myself that I start crying - then I get embarrassed at being so pitiful and can't stop crying, which makes me feel even more embarrassed.
I've had to cancel going to visit my best friend today because I'm just too wiped out, I've not seen her for months and was really looking forward to catching up and now I can't. I hate this fucking illness.