Category Archives: illness

Stuff. It’s all good. Well..

Hurrah! for internet shopping say I.

Yup, aside from the beady goodness recently purchased from Hobbycraft (just a little hint there for my female relatives, that’s right it’s home made jewelery for you again this year *grin* learn to love it!) Christmas shopping online was practically finished by the end of November, that makes me very happy.

What also makes me happy is giving a presentation at college and scoring 45 out of 45 for it, this means no matter what grade I get in my other assignments I’ve passed that module RAH!

What doesn’t make me happy is the reason I’ve been a bad blogger.
I’ve been off radar because of an ear infection that won’t die. I now have a provisional diagnosis of Meniere’s disease and am awaiting an appointment with an ENT specialist for confirmation or re-diagnosis, fingers crossed it’s something else eh? I’d much rather not lose my hearing as I’d not be able to go singing anymore *sniff* I’d be devastated (though I’m guessing there are others around me who’d think that’s the silver lining lol)

Let’s just say I’m sick of being sick.

Clowns to the left of ME..

I’ve been following the You & Yours spot about ME/CFS on BBC Radio 4 out of idle curiosity, I’m not expecting any great shakes from it but it’s certainly pulling a few cockroaches out of the woodwork..

Perhaps my response to this post on the BBC message board is so strong because as a student having a day off through the effects of ME/CFS it felt directed at me personally, I’ve been off college today because I’ve spent the last couple of days in bed, yesterday was a complete wash out – on the plus side it’s been a long time since I had a day that bad (needed help to go to the toilet and had to eat all my meals in bed, just sitting up to play a 5 minute card game totally wore me out!)

Listening to the You & Yours section today on ME made me so angry. I work as a Disability Support Worker in a North of England university, supporting genuinely disabled students with conditions such as Cerebral Palsy, deafness, leukemia etc. with their studies. Often I have had students claim to be suffering from ME, listing the usual vague symptoms (most of which we all suffer from at some time but just dont go on about it). They then claim they are too ill to continue with studying and either slope off home or demand that Disability Service resources pay for notetakers etc to basically do their work for them. These students are always from supportive family backgrounds where parents pander to this self obsession. Websites and support groups feed the fantasy. In my experience this ‘condition’ does not exist in a medical sense. It is just another expression of the obsession with self so prevelant today. As my 93 year old Gran says: there was no ME in my day, we didn’t have the time.

It’s made me so MAD! but then, this is exactly the response we get from people all the time, sadly from people like this woman who are supposed to be there to help us.

I’m just so glad that Thelma isn’t like this! I’ve definitely dropped lucky with my support worker at college, she’s been as helpful as she could possibly be, she talked me into getting a lift key even though I feel like a prat using the lift when it’s quicker to walk (I have to admit though, not tramping up and down stairs does make a difference, i’m more alert in class!) She’d even like me to go with her to talk to people about the illness if she’s called upon to do a presentation just to make sure the correct point is put across!

Yup, thankfully MY support worker is not cut of the same cloth as Loulouham!
Anyhow, I put in my tuppence worth on the BBC message board, since my response has yet to be moderated I’ll share it with you guys here:

Unfortunately Loulouham it’s people like you who make me so angry.

Just because you cannot visibly SEE the effects of an illness does not mean it isn’t there.

The students you are maligning only manage to make it into class on their good days, the reason they have such supportive parents and carers is because THEY see what that student is like on the bad days when they can’t get out of bed and need carrying to the toilet, when they are crying at the frustration of being able to do something one day and not the next.

ME/CFS is hard enough to deal with at the best of times but when a ‘support’ worker won’t give you the support you need because they disbelieve in your illness – well I think it’s hardly surprising most of them in YOUR university leave.

Fortunately I’m studying at West Herts college on a course franchised from Hatfield university, My support worker has been both helpful and supportive, this has enabled me to study without too much worry – you see stress exacerbates this illness, people like you ADD to that stress. It seems obvious that in your capacity of support worker you have failed those students because of YOUR prejudice.

Imagine having full blown flu ALL the time, then add onto that blinding headaches, crippling pain.
SO tired that you can’t think, in so much pain you can’t function and people telling you it’s all in your head because every test comes back negative.

Go a couple of years down the road from that, you’re now accustomed to the pain so can ignore it most of the time, you husband your energy so that you can do a course of study in order to better your position in life – despite having to rest on the days you’re not in class.
Then you have to deal with the ill concealed dislike of someone who is supposed to be your liaison with staff members, sneering as you ask for help.

I assume you are aware this controversy should have been effectively ended by a report from the Chief Medical Officer for England in 2002, which concluded that ME/CFS is a genuine and disabling condition.
CFS and ME are also classified by the World Health Organisation as neurological disorders.

..but then obviously your experience is so much more balanced and objective than a report by medical professionals who stake their reputations on findings such as these.

Can our social skills be hurt or helped by what we do online?

I saw this posted in the comments of a blog post by Mediajoltz and it got me to thinking.

From personal experience I’d say immersing yourself too far in the web can only hurt your real life social skills – by that I mean; if your primary method of social contact is via a monitor and a keyboard then you will find it very hard to hold a face to face conversation with somebody without making some serious faux pas.

Conversation is a skill like any other, if you don’t practice a skill then you WILL lose it.
You can’t throw up an emoticon to soften a comment in real life and you can’t take time to frame a reply in the same way you can online – folks will be patient with you in cyberspace, they know other things could be distracting you and that gives you time to think through what you say, there’s no pressure and when you have typed your reply you have the chance to change what you’re about to say before it’s sent..

That’s not possible in a face to face situation.

For a long time I’ve thought that my verbal communication problems were a direct result of my illness. I shied away from meeting people face to face or from holding telephone conversations with people I barely knew because I was embarrassed.
I was embarrassed because I’d lost the knack of talking to people, of being able to convey a point and express myself clearly – I felt like a moron – but I blamed the illness because of the ‘brain fog’ that’s brought on by being constantly ‘tired’.

In the first year of succumbing to the damned thing I became a virtual hermit, I spent most of my time in bed and slowly lost contact with all of my friends thereby limiting my face to face contact options.
This meant my conversational skills diminished through lack of practice and I then exacerbated the problem by only ‘speaking’ to people online. Now that I’m slowly clawing back some semblance of verbal competence I struggle.
If I’m having a bad day the brain fog is a problem – but then being overly tired will cause anyone to stumble in conversations and they won’t appear at their best. My illness is directly tied to low energy levels so it’s to be expected that I’ll stumble a little more often than most.

Now that I’m back at college, I’m being forced to communicate every day with people I barely know and I yearn for the ease of a keyboard. I infinitely prefer using the net as my method of communication, it takes the strain away and allows me time to form a coherent response. It also lets me pick and choose who to converse with and when to do it – at MY convenience.

Which is where I come to my main point.
Online I probably come across as an interesting and relatively amusing person – offline I’m ‘weird’ and that’s all down to the way I live online; because for the last 3-4 years it’s the only way I’ve lived.
I struggle in a social setting not because of my illness but because my social skills are lacking. They are lacking because I’ve limited myself – online I can choose who to talk to and what to talk about and can completely disregard anything in which I have no interest or knowledge.

Which means online I am always comfortable and never have to really stretch myself – if I’m unknowledgable about the topic under discussion then google bridges the gap.
That’s not possible in a real life social situation.
I’ve become overly reliant on the net instead of my own memory, I’m constantly wishing I had access so that I can refer to things in a discussion, I’ll remember reading an article but can never remember the salient attributes of it (though that could be down to the CFS; memory problems are a recognised symptom) It’s frustrating that in real life I’ve no google back up and I can’t turn to my thesaurus if I’m struggling for a word.

This reliance also means my conversational topics are limited; hardly any of the people I speak to in ‘real life’ know the websites I frequent, they don’t ‘get’ social networking or blogging, my online musical collaborations may sound ‘cool’ but it’s not interesting if you’re not a musician and showing off pretty handmade jewelery can only take a conversation so far.

Still, at least I am aware of the areas in which I’m lacking. A little more time in the world offline observing the people around me and interacting with as many as possible should bring my social skills back up to scratch..

..Now if only most folks didn’t find my love of karaoke to be weird as well *sigh* it’s my favourite offline activity and none of the college lot are remotely interested in it 😥

The M.E. interview

A while back Sean Fisher asked to interview me as part of his journalism coursework, he wanted to ask me things about ME/CFS and how it affected my life.
Sean was actually living with me when I first came down with the illness so he knew me before, during and after and has seen first hand how debilitating it is and just what a change it makes to a persons life – which is why I agreed, I hate to talk about those things normally because I cry, just thinking about it makes me cry – I hate crying, especially in front of other people so normally I’ll either avoid the topic or make some throwaway statement before hastily changing the subject.

I’m getting better at mentioning it without outright blubbing, but the second I feel the emotion welling up I change the subject – it’s embarrassing! Still, not as embarrassing as this interview lol he makes me out to be some kind of hero! I did say I’d put it up when he sent it to me though so here ya go..

Vicky Stringer is thirty years old and lived an incredibly active life until three years ago when she became ill and was diagnosed with Chronic Fatigue Syndrome, or CFS. Since then, she has seen her life change dramatically from holding down multiple jobs to being physically unable to get out of bed. Sean Fisher sat down to talk with her about her condition.

“My approach to this illness ninety percent of the time is just not to think about it.”, she says. “It’s really the only way you can live with it because if you sit there and delve into it, you’ll just be depressed. You won’t get out of bed because what’s the point? What is there to get out of bed for?”. Her voice wavers and she pauses for a long time, rolling the thought around in her head. She begins to cry and says that this is why she never talks about it when she’s in public. “No one ever wants to admit just how bad things are.”

Before Vicky became ill, she worked two jobs, one at a call centre and one as a bouncer at a club in the city centre. When she talks about that time in her life she speaks with exasperation in her voice. “I hardly got any sleep, didn’t eat right – I was basically living on those nourishment drinks because I literally didn’t have any time to cook. I’d get home from working at the club, go on-line to chill out or talk to people, get a couple of hours sleep and then head straight out to work in the morning. I was doing a lot… When I started getting more and more tired I just thought it was that”.

Around August of 2004, Vicky was diagnosed with CFS. It’s a term often used synonymously with ME (Myalgic Encephalomyelitus) and PVFS (Post-Viral Fatigue Syndrome). Although these are different conditions, the terminology is so muddled by the media, the symptoms so strikingly similar and the methods of diagnosis so generic that one term might as well be substituted for another. Even doctors have trouble correctly diagnosing the condition. Because its symptoms are so different and wide-ranging, the only way it can be properly diagnosed is by process of elimination and even that is problematic. The symptoms range from problems with the immune system to digestive problems, from depression to respiratory problems. The most common overlapping symptom of these conditions is extreme mental and physical exhaustion. A milder case might involve a person suddenly feeling exhausted for no reason during the course of their day and needing to sleep. In severe cases, people are confined to their beds unable to move even to reach for a glass of water. Vicky lies in the middle of this spectrum. She has good days and bad days. The bad days see her having innumerable sudden onsets of total exhaustion. She’ll be fine for an hour, then suddenly lie down and be unable to move or communicate in anything but simple grunting. In total, it took around six months after getting ill for her to be correctly diagnosed.

During those six months, Vicky searched the internet for any answers she could about the symptoms she was suffering. “I don’t know how people dealt with this before the internet”, she says. “It’s invaluable when you’re more or less trapped in your house. It’s a life-line. I think it is the biggest necessity for anyone with a disabling illness of any kind”. She has even gone so far as to create websites collecting all the information and advice she can give others about what she has learned about the illness. Vicky goes on to tell me about the support groups she visits, which are mostly held on-line through internet chat-rooms and message-boards. “I’ve actually made a lot of really good friends through there, and it’s helped me learn so much about the condition. If I hadn’t been on-line, I wouldn’t have met Stef’.

Stefanio is Vicky’s boyfriend of nearly two years. “I’d be buggered without him”, she grins. “Stef takes a lot of the strain off. When I’m having a really bad day and I can’t make it to the toilet, he picks me up and carries me there. I mean, he has to but you get the idea”. When Vicky talks about Stef, a lot of the weight falls from her. She brightens up and talks about him lovingly. “I think about it and I still can’t believe it. I met him on-line and he didn’t know me from Adam. When he found out about the illness he didn’t just stick around, he basically became my carer. He’s the person that I’ll probably spend the rest of my life with”.

Vicky explains that even if Stef wasn’t there, she would probably get by somehow. “It wouldn’t be easy, but it’s possible. There are people who have it much worse than me out there”. Financially, though the strain would probably be too much. Vicky hasn’t been able to work ever since she first became ill. She took an extended leave from her job at the call centre and they were good enough to keep her on sick pay for as long as possible. However, that couldn’t last forever. Currently Vicky receives incapacity benefit, but she isn’t happy about it. “If any of the people with this condition could work, they would. People with conditions like this seem to be assessed on the same basis as people who’ve been on Jobseekers allowance for the last three years and it’s just not the same situation. The only time people like me are in a fit state to be assessed for benefits is when we’re having a good day. Of course, this means they never see us on the bad days and don’t tend to believe us when we tell them”. Vicky’s understandably frustrated. She’s trying desperately to find a way to work from home. She’s currently learning web design and practices making her own jewellery at home. “I just have to keep active”, she tells me.

Despite all the trials Vicky’s been through over the past three years, she has an overwhelmingly positive attitude towards her condition and her future.. “I can look back at the life I had before and while it seemed absolutely brilliant at the time, I wasn’t actually doing anything. I was spending my spare time going out and drinking. I was talking to people who, on reflection, weren’t friends. Having this makes you really know who your friends are. It focuses you in a lot of ways. Because I have so little time when I can actually be active, I feel like I have to force myself to do something constructive with my time. I couldn’t have done that before. This forces you to spend so much time looking at yourself, and I think I’ve learned a lot about myself because of it. I know who I am now, and I wouldn’t have that without this illness”.

Edited to include a link to Sean Fisher on twitter – feel free to follow his occasional vitriolic forays into the microblogging stream, i just wish he wrote more – the guy is an undiscovered genius..

It’s the little things that make life worth living

I started today with a bad CFS/ME attack, Stef once more had to do the carrying to and from the bathroom thing because I couldn’t physically move, grunting was the highest form of communication at my command and I felt like crap. I’m still aching to buggery and I’m soooo tired it’s untrue.. But I don’t care.

The neighbours have been shouting, arguing and slamming/ hammering on doors all morning – they did the same most of last night as well.. But I don’t care.

You know why I don’t care?

Well.. there’s a song about it *grin*

We should start a company and make misery..

As the song goes anyway.

I’m really sick of always being tired and always being in pain, logically I know it’s worse at the moment because of the incipient arrival of certain biological functions – but logic does not enter into it where emotion is concerned.

I’m fed up.

It’s glorious weather outside but I’m too knackered and too achey to consider going anywhere, I’ve got a driving lesson booked for this afternoon but I’m too achey to summon up any enthusiasm – besides which, even if it doesn’t get cancelled I can’t shake the feeling that I’m throwing good money after bad since my last 3 attempts at going for a driving test have been thwarted through circumstances beyond my control.

I’m really fed up.

I just wish I could be me again, I still feel like me inside but I’m not.. If that makes any sense? Stef has been with me for nearly three years now and he’s never seen the real ‘me’ I swear sometimes he thinks I’ve just been a lazy sod forever, but that’s not me! I’ve always been on the go – when I was working, I didn’t just work the 2 jobs, I’d get the odd call from friends asking me to pinch hit for ’em, whether it be leafleting or kitchen prep/washing up or just babysitting I’d do it.
When I wasn’t doing something financially rewarding I was out dancing the night away, visiting friends, learning martial arts.. Even on the rare occasions I spent the night at home I’d have people coming round to visit, my place was almost like a drop in centre – people never knew when I’d be free because I was always so busy so I’d get calls at all hours and visitors at weird times – and I liked that.
Then slowly everyone started moving away, different cities, different countries (which is why I started the blog) and when I came down with this fecking illness it was the nail in the coffin as far as a social life went.
Ok, so my life really isn’t all that bad now (if you take away the pain and fatigue) but I’ve lost the ability to participate in any of my former activities (except singing, and I can’t even do that very often because it’s ‘intrusive’) I think the reason I’m still pushing for the driving thing (in the face of all adversity) is that I hope it will give me back some of the freedom I’ve lost.

I’ll be able to go places and see people and it won’t matter if I need to succumb to an M.E. crash when I’m out, my car would be a safe place in the middle of nowhere, I can blub to my hearts content in there and if things get too much here and the claustrophobia hits too hard it, instead of locking myself in the bathroom/ bedroom I’ll just hop in the car and go off for a ride.
Except even if I ever do manage to pass my test, unless I can get a job I won’t be able to have a car *sigh* and unless I can learn to ‘manage’ this illness properly I’ll never get a job. Not a decent one.
Seriously – it just feels like ‘why do I bother?’ I’m not sleeping – it takes me hours of tossing and turning to fall into dream riddled sleep then I wake up narky because I’m tired, I hurt (did I mention I hurt?) and it doesn’t matter if I lie in bed all morning because I can’t seem to do more than doze, which is why today I lay there attempting to be comfortable until my alarm went off at 8am, (why I bothered setting it since I was already ‘awake’ I don’t know) then got back into bed thinking just maybe I could drop off..
Wishful thinking all round. The ‘sleepy’ pills my Doc gave me do nothing (well, they help me breathe easier so perhaps I do also have a dust allergy since they are anti-histamines) and I’m sick of whinging.

I feel like all I do is bitch and whine and complain – and the crying.. God! Don’t get me started on the crying. I can just be sat there and all of a sudden this massive wave of emotion hits and I’m blubbing my eyes out – that’s when I’m not locking myself in the bathroom/ bedroom to try and get the homicidal rage under control before I start a row that ends in either death or desertion. In that respect I am my mothers child, I’ve the temper but I’ve seen how destructive those rages can be and I’ll not give into them willingly.
It’s not good people. I just wish there was an end in sight but no – I’m stuck with it, aches, pains, exhaustion and mood swings the lot! They can’t treat me, they can’t help me and I’m supposed to be able to live with this. It’s damned hard keeping on a happy face when all you want to do is scream at the world and SLEEP! I’d kill for some proper sleep.

I lay there last night listening to the delicate nasal offerings of my beloved and watching the security light go on and off outside (yes, even with my eyes closed I can see it) and tried to clear my mind of everything, I then tried just concentrating on my breathing, on my heartbeat.. All I know is I must have slept because I woke up, I just wish I could wake up feeling as though I’d slept, it’d make a nice change.
It’s been about 3 weeks since I last had a decent nights kip, now I can hold it together for a few days, but if it gets to this stage I’m just a mentally bruised, narky, emotional wreck. Having the menstrual cycle catching up on top is not good.
So what the HELL made me think having Ubuntu as an operating system would be a good idea right now? I can’t even get my head around re-installing wordpress at the moment never mind anything else!
I’m having to try and get to grips with IRC so I can ask for help from the linux gods (and that’s a cracking name for it because it does irk me, I can’t even get THAT to work the way I want it to)

The opener of my rant email to the lovely Nik went something like

It’s doing my box in – I have NO sound at all and I can’t get my head around the file navigation or.. well pretty much anything – every time I think I’ve found how to sort a problem it’s back to ‘open terminal..’ and there seem to be no ‘first time’ tutorials for using the damned thing – everything I’ve found expects you to be at least slightly familiar with it – this is NOT a user friendly os m’love, despite what you guys think.

It went on for quite a while in this vein, detailing all my problems, what I’d attempted in the way of fixing said problems and about 9 links to help sites I’d tried so he didn’t send me back to them. once I’d laid all that on I asked:

If you can send me a link to a laymans guide i’ll be more than happy to potter about with it, but if there’s nothing for a complete novice then seriously – who the hell is it aimed at? there’s no point trying to raise awareness of a product that only the people involved in creating it can use. *bitch* *whine*
AND anything that makes me think FINALLY a ray of light.. is aimed at MAC users. damned mac *mutter* grumble* if I had a mac I wouldn’t need linux..

He responded in a most gentlemanly fashion to my harpy ridden letter of venom:

Wow it was never supposed to be this much no fun ! …You really shouldnt be in the terminal though if we have to send you there then we need to fix whats broken

And as I said, I have irc instructions and a place to go, sadly my brain has gone into shutdown mode – AGAIN.

I can’t believe I’m starting to think XP isn’t really that bad after all – at least I have sound on there..

*sigh* Best go and rest up for this driving lesson – assuming I don’t get a cancellation text between now and then.

Couldn’t have said it better myself

This letter says everything you need to know about ME/CFS

This portion I personally can relate to so much, it describes my problems perfectly:

He is hard to talk to sometimes because he forgets what he was saying in the middle of saying it, and cannot get it back. He cannot remember what the right word is to explain something, He mixes up words in his speech and sounds like he is backing talkwards. This may be funny on some occasions and we will laugh, because there is nothing else you can do, but it is very frustrating and he often says he feels “retarded and stupid” when this is all out of control.

and this part says it all:

They see him fiddling around with computers and wonder why he cannot or “will not” get a job. No one would take him for employment if he said: “Yes I can do the work, but what used to take me a few hours now takes me a few days, and I cannot guarantee you that I will even be able to do it without making mistakes, because my hands do not do what my brain tells them to do, and I could possibly fry your computer hardware accidentally and cost your company hundreds of dollars…oh and I have cognitive thinking problems so I may need someone to remind me constantly about what I am doing, because I can forget how to fry eggs at home, let alone remember what windows update/system restore/hardware instillation I was supposed to do next.”

To my brother who constantly calls me a lazy malingerer, to the people who keep telling me to ‘just push though it’ I wish I could make those people read this letter – but they won’t their minds are made up – and besides, I’m nothing like this man, they’d just see the parts where he is worse off than I am and so while they may make allowances for someone like him, I’m just lazy.

But to be honest I’m past caring, yes, it still hurts that I know people think that of me, but I know I’m trying as do the people who truly care for me so screw ’em.

Roll on seeing this back to work person, hopefully she can help me find something that won’t be affected by my difficulties.

In happier news, I only had one crash this weekend and I’m about to go shopping with la famiglia in Watford, this makes me a happy bunny, yesterday I ate my bodyweight in good food, played lawn bowls and generally had a good time – I even got to watch Kyle XY while everyone else was outside laughing it up at the music wars going on in all the gardens (it was just too loud out there for me, I couldn’t concentrate on anything and the strain of trying to was giving me a stinker of a headache.)

Right, Stef wants the pc so I’d best shift and get some breakfast – yey for food! it is truly the best invention ever, I could almost follow the beliefs of those around me and say ‘thanks be to god’ for it.. Lets just say, I’m open to the suggestion of a higher being.

Back to work?

Don’t make me laugh!

The government are apparently eager to get all of us malingerers off incapacity benefit and back on the work force – at least that’s the story..

Having called up to request an appointment to discuss such a possibility for myself I’ve to wait until the end of April before anyone can see me.
Never mind eh? I’ve waited 3 years, another month or so won’t hurt me.

Moving on up..

Sadly not in the ‘home’ sense of the word but I have taken the slightly scary first step of looking for work.

I say scary because it is, I’ve not worked for at least 3 years and I’m still not sure if I’m physically ready for such a move – but if I wait until I feel ready I’ll never be ready.

Does that make sense?
Basically there comes a point where you just have to close your eyes, jump in and hope for the best – the point is you have to TRY. Ok, so I may fall flat on my arse and have the worst relapse going – but then again I might not.

Through the JCP I might end up doing the web design course I’ve been talking about for so long or I could end up doing a job I love and meeting some really great people in the process, the point is; I’ll never know unless I try.
Even if I don’t end up with a job I love, I may actually find one I can DO – which means I’ll be contributing, it means I won’t feel like a waster – most importantly it means I won’t be sat at home thinking maybe I should do something because I’ll already be doing it!

Wish me luck, I think I’m gonna need it.

Karaoke

What a night – seriously, it’s been an absolute corker – I can’t even remember the last time i wanted to blog about a night in the Bull *grin*

The new KJ is a darlin’ – not only because he’s trying to get me to consider joining his band (a working band who will PAY me) but because we just did ‘a whole lotta rosie’ as a duet and it ROCKED *chuckle* although he did make me do ‘ace of spades’ right before ‘true colours’ (which I still managed to carry off!) so my voice is now well and truly growly – sore throat and everything – I could really give Lemmy a run for his money 😉

——————

Ok, that’s as far as I got with the post last night because my lover reminded me of the need to get my arse to bed if I was going to have any hope of being up for 9am as per my timetable – and he was right, 9.15 I was up, i’ve done the dishes and am now eating my breakfast so all is practically on schedule despite the late night – and I don’t hurt even though I did a little bit of headbanging and arse wriggling (C’mon, with ‘Ace of spades’ it’s mandatory)

Aye – last night was kind of like old times (but without the alcohol) The pub was fairly full as well compared to the last couple of thursdays – it wasn’t a dickhead crowd either, they were practically all in my age group and above which makes a nice change.

I’m going to be resting my voice today and spend the time working on Claires website. Well, in between cleaning bursts, rest breaks and the shopping trip I have scheduled in.
This timetable seems to be working a treat – I’ve been keeping an exercise/ symptom diary in tandem with it and so far things are going well – I’m practically back at the energy levels I was pre-operation in October, once we’ve moved if things keep on in this fashion I’m definitely looking for work *grin* you’ve gotta try haven’t you?!

Ok, I know it’s early days having been doing this for just over a week and a half – but optimism is high and I’m determined to not fall back into the trap of letting this illness define me. That’s what I was doing – I was so concerned about looking ill enough for the medical assessments that I was thinking myself sicker than I need to be – if anything will set back my recovery then that will!

No, I realise positive thinking alone will not cure me (if only!) but it certainly helps put me in a frame of mind where I can work towards properly managing this thing so I can at least attempt a ‘normal’ life – other people have succeeded so I know it’s not a false hope, I just need to not slip again.

Wish me luck!

Go on then..

..Sum me up in 1000 words.

Or not *grin* I was interviewed today by Sean (some of you may remember him, he was the filthy beast with whom I used to live before getting this here lovenest with my honey) he’s now studying journalism at Salford uni and has to interview ‘someone interesting’ apparantly my CFS/ME issues come under that heading lol
Whaddaya know! Here was me thinking my humdrum life was of no interest to anyone but you little lot (all 6 or 7 of you regular visitors.. and by the way, how come only 3 of you ever comment? I love that K, Kelly and more recently HK have found something to say – but why do you others lurk so..?)

*ahem*

Anyhow it proved to be an interesting experience, he even said that it could prove to be an issue he would like to make a full feature of, says he’s going to talk to his tutor about it to see if she thinks he’d be able to find someone willing to print a story about it.. I have my doubts to be honest – not as a reflection of his writing skills (far from it, the guy is a phenomenal writer) but more of the ‘newsworthyness’ of the story.

Lets face it – the only CFS/ME stories you see in UK print follow along the line of yuppie flu and ‘positive thinking proves to be the cure’ it’s very disheartening to the many thousands of people suffering from the illness, but that’s the way of things I guess.

Who knows – maybe Sean will be the first person to really change this *grin* he did suggest I write about it myself, I mentioned i’d thought of writing in to some of the housewifey type magazines you get in waiting rooms that offer £250 for your real life story.. He painted a picture of an army of women drumming up support and making the government stop pussyfooting around and front up the cash for some decent research – apparantly all it takes is one Richard and Judy interview to have committees forming the length and breadth of Britain. It’s a nice thought..

Right, I’m 2 minutes past my allotted bedtime so i’ll skedaddle – tomorrow I’ll be throwing up a few pictures of the jewellary I’ve been working on, they may not be great pictures but they will be here – feel free to comment on my creative genius 😀

Bugger.

So I didn’t get DLA, I’m not shocked, the medical assessment was hellish and I knew in my gut I’d be refused any more financial help. It sucks, just because I look normal and healthy i’m obviously faking it as far as they’re concerned, they don’t see me on the days i need to rest up for 90% of my awake time!

Meh, no matter, Stef says not to worry, we’ll manage, I just hate the fact that I’m not able to put in a full 50% to the house and stuff when he already does practically everything else – If I can’t physically help out I should at least be able to hold my own financially *sigh* I guess in this I have to swallow my pride and live with it, I just don’t have to like it.

We’re looking for a new place to live so to K, Pat and everyone else who’s stopped by recently that’s on the move – we feel your pain, thankfully there’s a lot on the market at the moment. Looks like I’ll be moving waaaaaaaaaaaaaaaaay out of Manchester, we’d like to move as close to his folks as possible while still being close enough to the M6 so Stef can go into work as and when he needs to (this freelance consultancy stuff is definitely the way to go!) so i’ve been checking out Knutsford and the surrounding area, there are some really nice properties round there, we’ll probably go and have a drive around at some point next week to check out areas and pick up local papers (that way we can see if there are less stories of theft and violence in them than around here, be a good indication of what the area is like)

I do like house hunting, I just hate moving – seriously, my ideal job would be one of those people who just show houses to people, I don’t want to be an estate agent or a lettings agent, just someone who gets to look around flats and houses every other day.

In other news last night I went to my first karaoke in.. ugh.. God knows how long – it was ace, they have a new guy at the Bull on a thursday night, he’s funny and actually keeps it going, there’s very little waiting between singers and it was a fun night.

..of course that may be because I managed to fit in quite a few songs *grin* he really made me laugh, the first song up was ‘Alone’ by Heart, i’m there with the bog standard karaoke mic when about 3 lines into the song he stopped it, explained to the crowd that it sounded REALLY good – and handed me his radio mic LOL hows that for honoured eh?! Didn’t hurt the pride non either 😉
Anyway, I then went on to do a few more : ‘Whoomp there it is’ by Tag team, Jimmy Olsens blues by the Spin doctors (I nearly creamed when I saw that in the book – ace tune!) informer by snow (always good for a laugh) and ‘Building a mystery’ by Sarah Mclachan.

I will be going again next week – assuming i’m up to it and have nothing planned for the friday, it really battered me and i’ve spent most of today in bed – but it was worth it! Thats the first night out I’ve had in ages!

I know this is a ‘nowhere’ post, I did have a fair few ideas the other day – especially after getting on my high horse and spending a few hours on the govt petition site – this one caught my eye and made me chuckle – especially when I noticed how many people have already signed it.. I declined to, I saved my electronic signiture for things I truly believe should happen to benefit the country (all 60 of ’em I signed before Stef made me get away from the pc) though I did briefly consider it – who wouldn’t?

It proved to be intersting reading actually, you really get a feel for what the people think on there – and it’s a resounding message of no confidence in the govts ability to do its job. [sarcasm] Shock horror.. [/sarcasm]
However, I really cannot be arsed blogging about it right now, i’m still tired and wooly headed so all the interesting observations of the last few days can wait.

c’yall

Vics XX

Valentines day massacre

We climbed out of the pit around midday, slobbed around for another couple of hours then got in the car to sit in rush hour traffic and listen to steve wright and chris evans on radio 2, then we came home, ate take out, watched films and went to bed.

That was valentines – and it beats messing around and making a big deal out of the thing any day of the week!

I’ve asked the band to look for a new lead singer, I’ve said I’ll stick around as a backing singer if they want me to but i’m facing facts, i’m not fit enough to front a band.
Lets face it, if i need to be sat down for a rehearsal (because on tuesday they had a mic stand set up when i arrived with no chair available so I ended up lying down after each song.. not good.) I’m not going to be able to see through a whole gig. It’s something that worried me from day one but it’s been brushed aside – now they have a full complement of players and the stuff is coming together it’s obvious that i’m the weak link – and quite frankly i feel like too much processed dog crap to even do a full rehearsal at the moment – never mind a gig!

Yes I am still depressed but that’s not the reason I’ve made this decision, it’s because there are other more important things going on in my life right now that I need the energy for, Yes i’ve loved being in a band with teh guys because it made me feel as though i actually do have a life despite the illness, but I guess it’s not fair to them to string this along since they’re wanting to gig – and gig often.
The reality is I physically cannot cope with that amount of work. I have memory problems which means I struggle with the lyrics (something which really annoys me, I used to be nicknamed ‘jukebox’ for a reason) and in 3 out of 5 rehearsals i’m too knackered to do more than sit there, I get snappy and miserable when i’m tired and that’s all I seem to be at the moment, i’m bringing it home and Stef doesn’t deserve it.

Much as I love singing and playing with a band, it’s just not working out. I know they say don’t shoot the messenger but i also have to admit to uncharitably bitter thoughts about the new drummer for making this an obvious problem.
Ah well, would have happened sooner or later.

Right, i’m going back to bed, my heads pounding, I ache all over and my throat feels as though someone’s poured acid down it with a wire brush chaser.

Shitter of a day.

I’d set my alarm for 10am, just to make sure I was up and ready for this medical assessment, sadly I was just too knackered so I shuffled the alarm up to 12pm and went back to sleep.
We went off to Albert bridge house where the ordeal was to take place. Stef dropped me off at the gate and went to park the car so I wouldn’t have miles to walk – I think I should just have gone with him and done the walking because I was called straight through to see the doctor without my moral support.

The assessment was just hellish, this wizened little old indian man who i at first had trouble understanding just asked me a tonne of the same questions that were on my form and just kept responding to my answers with the words ‘thats correct’. I stupidly burst into tears again – it’s embarrassingly simple to reduce me to tears these days, all i have to do is think about my life – and it’s not even all that bad in the grand scheme of things!
I tried explaining the tears were a combination of embarrassment and frustration but I got the distinct impression he just thought I was turning them on for the sympathy vote – if only!

It kind of went downhill from there really. The physical examination commenced, he called through to the front office for a female chaperone and this 18 year old lass walks in, looks like a model and has the sneer down pat – Ok, so she wasn’t sneering, but I felt incredibly uncomfortable because i felt as though she was thinking the same as the doc, I hate feeling that people disbelieve me, especially when i’m not even exaggerating anything – if anything I probably left a lot out because I feel totally cowed when in front of a doctor.

Anyway, once that was over with he starts to write up his notes and ask me a few more questions, I’m starting to feel quite knackered again so ask him if it will take much longer, he lets me go and i go out to meet stef who drags me straight over to a cafe for food and a drink.

It was basically an incredibly draining session, i was trying to explain and justify myself to someone who I felt was predisposed to treat everything i said as a big fat lie – which is probably why I reacted so badly this evening.

Despite still feeling incredibly crappy i went to rehearsal, we’ve had a few issues in teh band lately and tonight was supposed to resolve ’em. Those issues were resolved and the rehearsal commenced. By 8.30 I’d had enough and needed to lie down.

I went through another song and just said I felt I should really head off because I hadn’t really had enough rest today to cope with the rehearsal – which is when the new drummer piped up.

I like to think that i’m being overly sensitive when it felt like he was being deliberately hurtful, I get the feeling he doesn’t really think that much of me or even like me as a person – but hey! i’m an emotional wreck at the moment so it’s probably nothing.
but after the day I’ve had today to be made to feel as though i’m useless and  ‘a sick note’ as well as an attack on my ability to see through a gig when i could barely stand up for 5 minutes in rehearsal.. I just packed up my bag and left.

On the way home I’d basically decided to just leave the band, lets face it – he’s right. It’s been my concern from day one – so what if he’s only seen me 3 times in the space of 2 weeks (and i’m still in the grip of an ear and throat infection so his observation of ‘theres always something wrong with you’ is a valid one) But Stef told me not to be daft and make a decision like that when i’m feeling this down, I should sit on it and keep up with them.

I just don’t know. Right now i’m miserable as sin, the move to Liverpool is off which means I’m stuck here with the wanker downstairs, I’m pretty much convinced that this doctor will say I don’t fulfill any criteria for receiving benefits which means I’m going to have to try and find employment that won’t send me straight back to the level I was three years ago – which is just not going to happen, if i could i’d already be working there and not trying to claim benefits in the first place!

Like Stef said, i can have a life with this illness but it makes me unemployable, who is going to offer me a job knowing I could have a relapse at any time? who could employ me for one or 2 days a week and pay me enough to live on for that amount of time?

It’s impossible.

Then to top it off the [insert insult of choice here] drummer has to go and make me feel even worse.
Tonight I really do feel as though there’s just no point staying with the band, I am always ill, I can’tguarantee I’ll be fit for a gig, I can try but all it takes is one little thing to knock me off kilter and i’m straight back in bed sobbing my little heart out in frustration – not really reliable eh?

You see it was alright before, the guys knew where I stood, they knew from day one this was the deal with me, but now.. I’m just fed up. i’m sick of trying to explain, to justify myself, i’m sick of making excuses and most of all i’m sick of people judging me unfairly because they just don’t understand.

I’m in pain, I’ve felt sick with nerves all day, my head has been pounding and my mood.. Well, I guess this post explains my mood.

*sigh* I’m just gonna go watch a film and have a cuddle. Hopefully things will seem better in the morning.

A day in the life..

I wake up, distinct lack of enthusiasm for moving from the bed to the bathroom despite an insistant nagging from my bladder. I lie there almost dozing for a couple of hours, halfheartedly trying to convince myself it’d be a good idea to get out of bed – I know if I really push myself I can move but it all just seems like too much effort for no good reason.

I play over my options in my mind: I could watch tv, check my mail, read a book, do some beading.. Nope, the most attractive of those options is reading my mail – but since I know all i’ll have are support group messages or spam, that can wait as well.
It’s a hell of a life this illness gives you.

Today instead of deliberating between dvds and the pc I lay in bed going over all the things I need to get across to this medical assessor tomorrow. It’s depressed me even more than usual *sniff* this is why I try not to think about it if I can help it, I get miserable.
I need to tell him about the aches and pains, the confusion, the conversational difficulties, the exhaustion, the fact that all of the above leave me depressed and unmotivated. Every time I feel well enough to start looking for a job, to better myself and try digging a way out of this financial hellhole, I come down with something new that saps my hard earned energy and sucks me back down into this boredom infested half life.
And what does my specialist have to say about all this? “you’ve completed all the treatments we have on offer, i’m sorry there’s nothing more we can do for you”.

Is it any wonder i’m depressed?

Basically I’ve been left to rot by the medical profession, according to the CBT discharge letter I’m “sophisticated enough in my understanding of the illness to self treat” which basically means I can manage my condition and learn to live as full a life as possible within the boundaries of it’s limitations – by myself.

It doesn’t mean “you’re cured” it doesn’t mean “this treatment has had no discernable effect so you need to try something else” it means “we’ve done our bit, it didn’t work so we’re washing our hands of you”.

And the worst part of it is, I still look normal! When I do go out and about I look like any other normal healthy lass of working age, no wonder the benefits agency treat me like a malingering con artist.

The thing is – if it wasn’t for Stef I doubt I’d look half as good, I certainly wouldn’t have the energy levels I do. He cooks for me, he nags at me to eat and drink and reminds me to take my supplements, he drags me out of bed if necessary and reminds me of things that need doing – he’s the reason I take any care over my appearence, I want to look good for him.
He’s my sole reason for getting up of a day – without his nagging, cajoling and loving presence i’d be in bed all the time and i’d stink.

I just wish I knew what it is about me that makes him bother.

Meh – i’m feeling sorry for myself again, time to stop thinking about this thing and worrying about losing my sorry excuse of an income and do something constructive, this place hasn’t been cleaned in weeks, I haven’t eaten and i’m sure the love of my life would like a cuppa, I may never finish a task but at least I can use a good day like today to start a few.
I’ll blame the miserable weather for my miserable mood – and I’m sure if I check a calendar I can work in a nod to the pms demon as well, not sleeping well also has it’s place and.. well, whatever the cause I need to crank up the tunes and dustbust my way out of it.
Or at least try..