I've just been to see my first neurologist; a rather pleasent and friendly jewish man who swiftly ruled out any possibility of my having epilepsy *happy dances*
He not only went through my medical history he asked questions about my background and upbringing which seemed a little odd.. He then said that what I was describing was definitely CFS, while he expressed a couple of doubts on my ability to cope with a couple of things he did seem quite.. 'impressed' is the wrong word but it's the only one springing to mind so it'll have to do, he seemed impressed with my progress and how well I am coping in the main.
That gave me a bit of a boost I have to say ;)
Yup, I'm liking the guys they have at Watford general - so far i've been impressed with the friendliness and attention they take of their patients.
When I went to see the ENT guy I was impressed with the efficiency of the department even though I was disappointed to learn there is a 95% chance I do have Meniere's disease - I've been put forward for an MRI but for many reasons the neurologist seems to think it's unlikely I'll be called for it within the next year as they tend to only do them when there is a chance of uncovering something serious - since this is more annoying than serious.. Meh, at least I'm not epileptic eh?!
..and I can DRIVE!!!! That was the best news I've had in WEEKS!
Turns out I made a mistake with my timetable too - I'm not in 4 days a week. Next week I'm in tue/wed/fri then we have a week off for reading (ie they're low on rooms again and exams are taking place) then when we go back I'm in wed/thur/fri which means I have LONG weekends!
*grin*
Things just keep getting better and better - all I need to cap this mood is the news that we have somewhere to live! While it's good of the in-laws to put us up I'd not imagined we'd still be here now, 5 months is a long time to share living space with people!
Thursday, January 31, 2008
Monday, January 21, 2008
pacing and schedules
I've been dealing with dizziness and nausea and intermittent hearing loss/ tinnitus for the last 5 months but relief is at hand! Tomorrow I get poked and prodded by an ENT specialist at Watford general hospital.
Yes, they'll be trying to rule out meniere's disease but either way I'm just hoping they can rid me of the dizzy/sick thing.
Despite regular bouts of fatigue and acheyness plus all of the above I've managed to get consistantly high marks in every module of my course and more impressively on the ME/CFS front - I have an attendance rate of over 94% (i'm so proud! *grin*)
I'm not sure how I'll fare on the new timetable though, before I was in on a mon/wed/friday now I'm in at the crack of dawn on a tuesday for half the day, wednesday afternoon, thursday morning and all day friday.
It may work out better having 2 half days but i've gotten used to my rest days in between classes, guess my pacing schedule is really going to take a beating!
Yes, they'll be trying to rule out meniere's disease but either way I'm just hoping they can rid me of the dizzy/sick thing.
Despite regular bouts of fatigue and acheyness plus all of the above I've managed to get consistantly high marks in every module of my course and more impressively on the ME/CFS front - I have an attendance rate of over 94% (i'm so proud! *grin*)
I'm not sure how I'll fare on the new timetable though, before I was in on a mon/wed/friday now I'm in at the crack of dawn on a tuesday for half the day, wednesday afternoon, thursday morning and all day friday.
It may work out better having 2 half days but i've gotten used to my rest days in between classes, guess my pacing schedule is really going to take a beating!
Thursday, December 06, 2007
Smug and fed up - now there's a combination.
On the one hand I've just received my programming marks from college - I'm looking at a top end B or a low A for that module, the same can be said of Maximizing potential and I'm pretty certain computer based systems falls into the same region, it's only databasing that's worrying me.
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.
Joy.
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!
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.
Joy.
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
Ménière's disease
This is what my lovely new GP thinks could be wrong with me at the moment.
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:
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'
Great.
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.
Joy.
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'
Great.
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.
Joy.
Saturday, November 24, 2007
Antibiotics
So far so good.
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.
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
Cack and double cack.
I've now had this ear infection for at least three weeks.
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?!
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
updates and whingyness
I've been up and down for the last few days, constantly tired and aching, today the pains were so bad I couldn't get up, my knee especially has been playing up and i'm limping again.
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!
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
Vegepa and crashing
I've once more tried to see how I go without taking supplements. It's not good.
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.
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:
With VegEpa
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.
Without VegEPA
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
catch up.
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
Coping with college.
It's been three weeks now and I'm just about handling things.
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.
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
Not in Manchester anymore..
That's right, after tomorrow I'll not be living in Swinton anymore, I'll be all set up in Watford.
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!
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
m'shattered!
Proof positive that going to bed before or around midnight is far better for me than at any time after.
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.
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
Hacking up a lung
I've been 'ill' for the last 3-4 days, for 2 of those days I was silent - not through choice of course, I just couldn't speak, literally.
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.
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
S'all go 'ere ya know..
The whole ME/CFS thing has been very up and down of late, this means I've been doing things in fits and starts. Boom and bust is not the best way to manage this illness but sometimes you just have to go with it.
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?!
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
Dream a little dream of ME
I I had a strange dream last night, I've not been sleeping very well again because of my dreams - they're always quite realistic, more like memories than dreams which can make things a tad confusing on occasion..
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..
*sigh*
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.
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..
*sigh*
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
Remember the pace
The last 2 days have been a wash out as far as life is concerned.
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!
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
mini relapse time again
This morning saw the return of the grunting immobile shell that is me when things are bad.
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)
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 cured!
Well.. If you discount the aches and the tiredness and the easily distracted/don't listen to people/ can't carry a conversation thing.
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:
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?!
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
Up in the air
My driving lessons are on hold (again) and I've still to hear anything from the job centre. I missed my medical assessment because I was having a crash day and basically.. I just don't know what to do with myself.
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.
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
Unwell
It's a song by Matchbox 20 and I love it. I liked it even before I came down with the delightful illness I have now, it was the highlight of my nights at the hard rock casino when it came on - I'd suddenly have a lighter step as I continued with my duties singing along to the video.
These days it holds a lot more meaning for me, just read the lyrics and I think you may understand why:
Which is why I'm putting an mp3 of myself singing the karaoke version
I wonder just how many people with 'hidden disabilities' can relate to this song? Too many I fear.
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
Hold on
Feeling like I'm headed for a breakdown
And I don't know why
[Chorus]
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
[Chorus]
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
[Chorus]
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
I wonder just how many people with 'hidden disabilities' can relate to this song? Too many I fear.
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