Sounds daft but it's true. I've been feeling pretty down for ages yet at the same time I'm feeling quite optimistic about the future because things keep happening that are good.
Let me explain.
The ME/CFS made a reappearance quite a few times between October and December of last year, then the Menieres made my life hell over the 3 week christmas break because I ran out of the betahistine tablets.
I couldn't get any more because of first the snow and then because I was too incapacitated to write and take in the letter to the receptionist for my prescription (couldn't find the printed repeat and my surgery asks for a signed note asking for a repeat in those circumstances)
After the Menieres kicked in, it triggered a full on ME/CFS relapse then just as I started to get over that my daughter had the flu jab and gave me a stinking head cold that once again set off the Menieres and the ME/CFS
So for the best part of 3 months I've been stuck in bed unable to do my work, stressing about my inability to do work and getting ill - vicious circle.
I missed 2 exams, web application design (WAD) and Professional issues in computing (PIC) and despite being told I could have an extension on my digital entertainment systems (DES) assignment I've been unable to do ANY work on that as I had to concentrate on my Principles and Applications of web services (PAWS) exam and the portfolio for WAD.
SO, I managed to attend my PAWS exam, I think I did enough to pass despite leaving a few of the questions unfinished (started feeling a bit pants so left the 3hr exam after 1.5 hours) and I've got about 50% of the portfolio done and an extra week from now to finish the rest - which ME/CFS allowing is doable.
My support worker and the individual tutors have been great, assuming I can get the relevant documentation for my Dr (and I can't think what reason he could have not to give it) I can defer the 2 exams and the DES coursework until summer so that I can get the new semester over and done with without the extra worry of legacy work.
On top of which, I've been approached to do a conference workshop in the summer with the 2 project leaders from the CABLE group I was involved with last year - so despite my crap health, I obviously have useful knowledge and experience which leads me to be hopeful that I will be able to find a job at the end of this!
Lets hope so eh?! I'd hate to think I was killing myself for no reason!
Thursday, January 28, 2010
Monday, January 18, 2010
Push on through to the other side
That's basically all I'm trying to do right now.
Despite everything last year, I managed to come out with one of the highest grades in our Foundation Degree class - this is an achievement of which I will always be proud!
However, this academic year has been a complete bust so far as the ME/CFS and Menieres is concerned. I had a very emotionally charged piece of news back in October/November which led to a rather hefty relapse, trying to come back from that with a ridiculous course load and a very active toddler has proven to be a task of herculean proportions.
My recovery was further hampered over the Christmas period when I ran out of the Betahistine prescribed to me to help control the Menieres - any doubts I had about their effectiveness have been firmly silenced having spent the best part of 2 weeks bedridden with dizziness, ear pain and nausea yet 3 days after restarting medication I'm back to ME/CFS 'normal'.
I've managed to obtain an extension for one piece of coursework but even so it will be tight, one exam has passed and I'm unsure as to whether I've made it on to the next module despite studying as hard as I possibly could for it, the other 2.. well fingers crossed eh?
Next semester should be better, according to my timetable I'm only in for 3 hours a day, 2 days a week which means I'll be able to actually pace myself and have set mealtimes again; regularity and a decent schedule are half the battle in managing this condition I've found.
..so lets just pray I've managed to get enough marks to pass the current semester because if I have to re-take anything I may as well give up now.
Despite everything last year, I managed to come out with one of the highest grades in our Foundation Degree class - this is an achievement of which I will always be proud!
However, this academic year has been a complete bust so far as the ME/CFS and Menieres is concerned. I had a very emotionally charged piece of news back in October/November which led to a rather hefty relapse, trying to come back from that with a ridiculous course load and a very active toddler has proven to be a task of herculean proportions.
My recovery was further hampered over the Christmas period when I ran out of the Betahistine prescribed to me to help control the Menieres - any doubts I had about their effectiveness have been firmly silenced having spent the best part of 2 weeks bedridden with dizziness, ear pain and nausea yet 3 days after restarting medication I'm back to ME/CFS 'normal'.
I've managed to obtain an extension for one piece of coursework but even so it will be tight, one exam has passed and I'm unsure as to whether I've made it on to the next module despite studying as hard as I possibly could for it, the other 2.. well fingers crossed eh?
Next semester should be better, according to my timetable I'm only in for 3 hours a day, 2 days a week which means I'll be able to actually pace myself and have set mealtimes again; regularity and a decent schedule are half the battle in managing this condition I've found.
..so lets just pray I've managed to get enough marks to pass the current semester because if I have to re-take anything I may as well give up now.
Monday, August 17, 2009
Am I unemployable?
I'd forgotten just how horrible a full on relapse is.
The fizzing sensation in your limbs, the terrible heaviness of everything, the aches.. it's an act of will to even type as all my hands want to do is give in to the pull of gravity - no wonder we're so frikken tired all the time, we're constantly fighting to move; every action is conscious.
..by that I mean normally when you want to pick something up you just go to do it but when everything is this hard it's like you..
imagine an action is a calculation; lift arm + open hand + guage distance + use correct force = object lifted.
Normally that calculation will occur without you even realising it, but right now I'm still computing the steps needed to complete the action as i'm taking them.
It's like i'm an overheating computer with a broken fan that has too many processes running in the background; i'm on a go-slow and things are starting to malfunction.
bah! i doubt i'm making much sense.
Lets just say i'm starting to really worry about my ability to successfully complete my degree next year; never mind my job prospects afterwards! who in hell will employ someone that will have to take days off because they physically can't get out of bed? who could 'crash' at work and will need to lie down, unable to communicate in more than grunts and will need carrying to a car to go home?
Working from home is my only real option. But will it pay enough? and to do that I'd need to move somewhere that we had an extra room so I could work undisturbed - how can we afford that? we can only just afford this place.
*sigh* I'm beginning to wonder why i'm bothering with this degree. I'm going to be stuck in the me/cfs trap forever. Please god let them find a cure!
The fizzing sensation in your limbs, the terrible heaviness of everything, the aches.. it's an act of will to even type as all my hands want to do is give in to the pull of gravity - no wonder we're so frikken tired all the time, we're constantly fighting to move; every action is conscious.
..by that I mean normally when you want to pick something up you just go to do it but when everything is this hard it's like you..
imagine an action is a calculation; lift arm + open hand + guage distance + use correct force = object lifted.
Normally that calculation will occur without you even realising it, but right now I'm still computing the steps needed to complete the action as i'm taking them.
It's like i'm an overheating computer with a broken fan that has too many processes running in the background; i'm on a go-slow and things are starting to malfunction.
bah! i doubt i'm making much sense.
Lets just say i'm starting to really worry about my ability to successfully complete my degree next year; never mind my job prospects afterwards! who in hell will employ someone that will have to take days off because they physically can't get out of bed? who could 'crash' at work and will need to lie down, unable to communicate in more than grunts and will need carrying to a car to go home?
Working from home is my only real option. But will it pay enough? and to do that I'd need to move somewhere that we had an extra room so I could work undisturbed - how can we afford that? we can only just afford this place.
*sigh* I'm beginning to wonder why i'm bothering with this degree. I'm going to be stuck in the me/cfs trap forever. Please god let them find a cure!
Sunday, May 31, 2009
Prompted by questions
ME/CFS is a difficult beast to describe, not only are the symptoms varied - both in type, frequency and intensity, they can differ from person to person.
On top of that, there are things to take into account depending upon what 'stage' of the illness you are at - and I don't mean 'beginning, middle or end' because for a person with ME/CFS there is no end and the beginning and middle are just an ongoing cycle of good and bad periods.
No by 'stage' I mean one of the cycles that exist in my mind regarding my own personal experience of it:
Denial
By denial I mean, you and everyone else disbelieving it's something other than stress/ over work, thinking that you can just push through it and then wondering why you feel worse every time you do something.
Boom and bust
You have good and bad days, on the bad days you stay in bed - on the good days you try to make up for the bad days and over do it.
Limbo
You finally get a diagnosis but they can't treat or cure you, no one knows or understands what is wrong with you and you try every 'cure' you hear about following extensive research online
Fear (masquerading as pace)
You've tried CBT and GET and you got worse, you cut out caffeine, dairy, sugar, fast food - anything that might be a trigger, you stop going out, you barely do anything around the house, you just spend 90% of your time 'resting' - all because the thought of triggering a relapse that makes you worse than you are now scares the shit out of you.
Getting past that is the hardest part of this illness.
Acceptance
You realise that it isn't going away and that living in fear of a relapse is what is crippling your ability to enjoy life, you start to do more and just succumb to the 'crash' when it happens.
Boom, bust and pace
You start to do more again but keep another exercise diary so you can try and judge the level of activity you can take before you crash, after a few weeks of this you sort out a routine, get depressed when it doesn't seem to help - at this point you either go back to the fear cycle or move properly onto pacing
Pace
You start with one activity a week - mental or physical (its how I did it) and cut it down into individual tasks that you spread out over the week. a couple of weeks later you up it to two activities - again split into tasks. The basic rule that worked for me was 20mins work followed by 20mins rest (and rest was sitting down and concentrating on my breathing - try hard to think of nothing else)
It took me around 2 years but I was finally up to the stage of doing a 10wk course (4hrs a week) on using Photoshop and dreamweaver - I was knackerd but being with other people and using my brain again made me feel better than I had in a long time!
Some people find it harder to cope than others for various reasons as it's really hard to come to terms with losing your life by degrees and its bloody hard work clawing it back - especially when you don't feel as though any progress is being made
This is where the exercise diaries are golden, I look back at my blog in the early days and look at the medical file/ benefit claim file and other documentation and can't believe how much I've improved.
I put it down to three things:
On top of that, there are things to take into account depending upon what 'stage' of the illness you are at - and I don't mean 'beginning, middle or end' because for a person with ME/CFS there is no end and the beginning and middle are just an ongoing cycle of good and bad periods.
No by 'stage' I mean one of the cycles that exist in my mind regarding my own personal experience of it:
Denial
By denial I mean, you and everyone else disbelieving it's something other than stress/ over work, thinking that you can just push through it and then wondering why you feel worse every time you do something.
Boom and bust
You have good and bad days, on the bad days you stay in bed - on the good days you try to make up for the bad days and over do it.
Limbo
You finally get a diagnosis but they can't treat or cure you, no one knows or understands what is wrong with you and you try every 'cure' you hear about following extensive research online
Fear (masquerading as pace)
You've tried CBT and GET and you got worse, you cut out caffeine, dairy, sugar, fast food - anything that might be a trigger, you stop going out, you barely do anything around the house, you just spend 90% of your time 'resting' - all because the thought of triggering a relapse that makes you worse than you are now scares the shit out of you.
Getting past that is the hardest part of this illness.
Acceptance
You realise that it isn't going away and that living in fear of a relapse is what is crippling your ability to enjoy life, you start to do more and just succumb to the 'crash' when it happens.
Boom, bust and pace
You start to do more again but keep another exercise diary so you can try and judge the level of activity you can take before you crash, after a few weeks of this you sort out a routine, get depressed when it doesn't seem to help - at this point you either go back to the fear cycle or move properly onto pacing
Pace
You start with one activity a week - mental or physical (its how I did it) and cut it down into individual tasks that you spread out over the week. a couple of weeks later you up it to two activities - again split into tasks. The basic rule that worked for me was 20mins work followed by 20mins rest (and rest was sitting down and concentrating on my breathing - try hard to think of nothing else)
It took me around 2 years but I was finally up to the stage of doing a 10wk course (4hrs a week) on using Photoshop and dreamweaver - I was knackerd but being with other people and using my brain again made me feel better than I had in a long time!
Some people find it harder to cope than others for various reasons as it's really hard to come to terms with losing your life by degrees and its bloody hard work clawing it back - especially when you don't feel as though any progress is being made
This is where the exercise diaries are golden, I look back at my blog in the early days and look at the medical file/ benefit claim file and other documentation and can't believe how much I've improved.
I put it down to three things:
- Diet; I've cut out alcohol, most caffeine (we don't count chocolate do we folks) processed foods and carbonated drinks (well, naturally sparkling water like badoit is still on the allowed list, dandelion and burdock is not)
- The love of a good man; Stef has not only been the person to carry me to and from the bathroom during the bad times, he's seen me through the intermediate stuff as well, he took on the housework and cooking so I could study and build up my self confidence again, he's pushed me to try harder and been there to pick up the slack when doing so has made me crash, making me feel that it's ok to try and crash - so long as I try. He's always telling me how proud he is of me and how great I am.. Without him I'd still be stuck in the fear cycle and that is truly no way to live.
- Sheer determination combined with a positive attitude; easier said than done, this illness will beat the positivity out of you without somebody like Stef cheering your corner. You need help and support all the way - ESPECIALLY when you hit a bad crash following a really good spell.
Tuesday, April 14, 2009
WooHOO! ..and BACK!
Yup, my brain appears to be functioning again.
This last week I've managed to complete my first programming assignment, most of the final report for my work based learning project (including poster design) and today I completed 1/3 of my first multimedia assignment - if things go according to plan then that one should be completed and submitted by this time tomorrow evening!
I still have 2 HCI assignments to do, stats to gather so that I can finish my WBL report and more content to add to the WBL website - all before Monday.
No sweat, 5 days is plenty of time so long as the CFS/ME stays away. I figure Thursday for HCI1, friday for HCI2, Saturday to collate stats and finalise my report and Sunday to finish website content and poster design.
Then on Monday I get my poster printed and laminated, submit all work and et voila! I'm bang up to date again and looking to get the GOOD grades!
..all I have to do then is buy an outfit suitable for a business presentation, start and complete the 3 assignments I've not even looked at yet because the deadlines aren't until May, revise for exams and FINISH THE YEAR!
..I can't wait!
I sooo deserve a holiday!
This last week I've managed to complete my first programming assignment, most of the final report for my work based learning project (including poster design) and today I completed 1/3 of my first multimedia assignment - if things go according to plan then that one should be completed and submitted by this time tomorrow evening!
I still have 2 HCI assignments to do, stats to gather so that I can finish my WBL report and more content to add to the WBL website - all before Monday.
No sweat, 5 days is plenty of time so long as the CFS/ME stays away. I figure Thursday for HCI1, friday for HCI2, Saturday to collate stats and finalise my report and Sunday to finish website content and poster design.
Then on Monday I get my poster printed and laminated, submit all work and et voila! I'm bang up to date again and looking to get the GOOD grades!
..all I have to do then is buy an outfit suitable for a business presentation, start and complete the 3 assignments I've not even looked at yet because the deadlines aren't until May, revise for exams and FINISH THE YEAR!
..I can't wait!
I sooo deserve a holiday!
Friday, April 03, 2009
Bugger.
I went to the doctors the other day to get a letter for college so that I can get a blanket extension for all my coursework. The previous menieres/ ME/CFS relapse certainly did me no favours regarding deadlines so I need a note medically validating the fact that I'm useless.
..ok, not 'useless' but very much not up to speed.
While there I mentioned the trouble I've been having with my left arm and it turns out I have rotator cuff strain - all I know is it hurts, but then with the me/cfs aches I'm kinda used to that - it was proved beyond a shadow of a doubt during labourwith Isabella that my pain threshold is actually pretty high (despite opinions to the contrary) but I figured I may as well mention it - good job I did, if left it could turn pretty nasty apparently..
Unfortunately she seems to think that I could have post natal depression; I think she just doesn't know enough about the illnesses I already have. Yes I get down, depressed and hopeless. Yes I have feelings of low esteem, tiredness, trouble sleeping, little energy or appetite and have trouble concentrating on things - but show me one person with a chronic fluctuating illness who doesn't experience all of these things on and off!
..ok, not 'useless' but very much not up to speed.
While there I mentioned the trouble I've been having with my left arm and it turns out I have rotator cuff strain - all I know is it hurts, but then with the me/cfs aches I'm kinda used to that - it was proved beyond a shadow of a doubt during labourwith Isabella that my pain threshold is actually pretty high (despite opinions to the contrary) but I figured I may as well mention it - good job I did, if left it could turn pretty nasty apparently..
Unfortunately she seems to think that I could have post natal depression; I think she just doesn't know enough about the illnesses I already have. Yes I get down, depressed and hopeless. Yes I have feelings of low esteem, tiredness, trouble sleeping, little energy or appetite and have trouble concentrating on things - but show me one person with a chronic fluctuating illness who doesn't experience all of these things on and off!
Saturday, March 07, 2009
Whatever happened to pacing?
I've not managed to find a rhythm since having Isabella. I got too used to being 'normal' again while pregnant and seem to have forgotten my coping mechanisms for the ME/CFS.
This is not good.
For example, last month I overdid it, really overdid it.
On top of spending practically 8 hours a day solidly working on my coursework then coming home and washing up, seeing to Isabella and being sociable, I also managed 2 consecutive nights out.
This started affecting me and I've been having to lie down for an hour or so in the day again, but did I cut back/ slow down? No.
I continued to stress about assignment deadlines and work solidly whenever I had the chance and we weren't visiting the in-laws.
This is the real reason my last post happened, I'd handle full time care of my daughter just fine - if I cut back on everything else.
I was supposed to go out last night but because I've been having a full on crash at least once a day since last week when I had Izzy to myself. I just didn't want to risk it, I still get upset thinking about the last time I crashed in a nightclub; how an unknown male had his hands all over me and was kissing my neck while I was unable to move or fend for myself - not the most pleasant experience I've ever had!
The problem is, I don't know how to throttle back - I have so much to do and so little time in which to do it:
is it any wonder the crappy illness has come back and that the menieres disease has kicked in on top?
I'm stressed at the thought of missing deadlines - especially now that I've fallen further behind as I couldn't concentrate on anything last week so no work was done.
My arms feel like lead, I'm forcing myself to get on with stuff even though I know I'm going to suffer for it. I need help! The way things are going it's only a matter of time before i have a full on relapse and end up bedridden again.
But I can't seem to shut off, these things NEED to be done. Stef can't work because he's looking after Izzy, but I don't get DLA so he can't get carers allowance, he can't get JSA because apparently my student loan is enough for us both to live on (um.. hello?! it's a DEBT it's not income, it's fecking disgusting that if we were living apart I'd STILL get the loan but he'd also have an income) and because he's not getting DSA we still have to pay full council tax - despite his having NO income and me being a student.
So because I'm having to use my student loan to house and feed our family I can't afford to get the new laptop I need and I'm having to make the trip to the uni library every other day so I can use the software I can't afford to buy and look at the REFERENCE ONLY books I can't afford to buy which expends more energy that I don't have.
It sucks.
I'm just praying that I will end up with a job that pays enough to make this all worthwhile, and that I have the energy to actually do the job once I get it!
..as it is, the loans which are paying to house and feed us won't be paid off for at least 55 years according to the msn student claculator - and if I have a relapse we are royally screwed as if I can't attend uni I won't get the loans, by the time the benefits orofice get their finger out we'll be homeless as I can't see the landlord waiting 6 months for backdated rent seeing as he didn't want to take on dss tenants in the first place..
Is it any wonder I'm stressed?
This is not good.
For example, last month I overdid it, really overdid it.
On top of spending practically 8 hours a day solidly working on my coursework then coming home and washing up, seeing to Isabella and being sociable, I also managed 2 consecutive nights out.
This started affecting me and I've been having to lie down for an hour or so in the day again, but did I cut back/ slow down? No.
I continued to stress about assignment deadlines and work solidly whenever I had the chance and we weren't visiting the in-laws.
This is the real reason my last post happened, I'd handle full time care of my daughter just fine - if I cut back on everything else.
I was supposed to go out last night but because I've been having a full on crash at least once a day since last week when I had Izzy to myself. I just didn't want to risk it, I still get upset thinking about the last time I crashed in a nightclub; how an unknown male had his hands all over me and was kissing my neck while I was unable to move or fend for myself - not the most pleasant experience I've ever had!
The problem is, I don't know how to throttle back - I have so much to do and so little time in which to do it:
- There's my work based learning project; I still have to finish uploading content to the website, create questionnaires for the users and write a report based on the feedback to go into the relevant part of the final report (which I need to have completely finished in 3 weeks time)
- I have a multimedia project in director to complete - the draft by Tuesday and the complete project by the end of the month
- A text based game to create in Java, the design has to be done by Wednesday and the actual game programmed and written up - by the end of April
- I have a HCI project to do - by the end of the month
- I'm organising a group for the cable project at uni and all of this needs writing up and sorting out by the end of june
- I'm student rep and am spending a lot of time at meetings at the uni
is it any wonder the crappy illness has come back and that the menieres disease has kicked in on top?
I'm stressed at the thought of missing deadlines - especially now that I've fallen further behind as I couldn't concentrate on anything last week so no work was done.
My arms feel like lead, I'm forcing myself to get on with stuff even though I know I'm going to suffer for it. I need help! The way things are going it's only a matter of time before i have a full on relapse and end up bedridden again.
But I can't seem to shut off, these things NEED to be done. Stef can't work because he's looking after Izzy, but I don't get DLA so he can't get carers allowance, he can't get JSA because apparently my student loan is enough for us both to live on (um.. hello?! it's a DEBT it's not income, it's fecking disgusting that if we were living apart I'd STILL get the loan but he'd also have an income) and because he's not getting DSA we still have to pay full council tax - despite his having NO income and me being a student.
So because I'm having to use my student loan to house and feed our family I can't afford to get the new laptop I need and I'm having to make the trip to the uni library every other day so I can use the software I can't afford to buy and look at the REFERENCE ONLY books I can't afford to buy which expends more energy that I don't have.
It sucks.
I'm just praying that I will end up with a job that pays enough to make this all worthwhile, and that I have the energy to actually do the job once I get it!
..as it is, the loans which are paying to house and feed us won't be paid off for at least 55 years according to the msn student claculator - and if I have a relapse we are royally screwed as if I can't attend uni I won't get the loans, by the time the benefits orofice get their finger out we'll be homeless as I can't see the landlord waiting 6 months for backdated rent seeing as he didn't want to take on dss tenants in the first place..
Is it any wonder I'm stressed?
Wednesday, February 25, 2009
A tad dejected
Yesterday is the first time I've had full time care of Isabella since she was born (from waking to bedtime) and it's only because Stef is helping his sister move house. It was great and I can see why he's so happy to stay with her instead of working and leaving her with his mum as we'd originally decided.
The only problem is; that one day has left me bed bound - full on CFS/ME crash happened in the night and I'm still recovering from it - it's also had the knock on effect of setting off the Meniere's so I'm basically deaf and knackered today.
God help me when she starts crawling/ walking - how on earth can I hope to be a 'proper' mum when just one day of caring for her leaves me bed bound?
He's helping his sister again today so Isabella is with his mum and I'm tucked up in bed with the laptop, mobile phone, packed lunch and bottled water attempting to concentrate on the HCI assignment due in today and the questionnaire I need to email out to my WBL client for her students.
*sigh* at least I'm not a single mum, I'd be hospitalised and she'd have been taken into care by now.
What's worse is the 2 lessons I've missed today because of this are the 2 I most need to attend! It's frustrating to say the least!
..but it could always be worse, I have a roof over my head and food on the table beside me, internet access (always a good thing) and I've got until 11 to get the HCI in and even if it isn't to my 'usual' standard it's 'only' 20% of the mark, I've got tomorrow to rest up ready for Friday and a gorgeous daughter to cuddle and love - when he brings her home
So.. Work!
The only problem is; that one day has left me bed bound - full on CFS/ME crash happened in the night and I'm still recovering from it - it's also had the knock on effect of setting off the Meniere's so I'm basically deaf and knackered today.
God help me when she starts crawling/ walking - how on earth can I hope to be a 'proper' mum when just one day of caring for her leaves me bed bound?
He's helping his sister again today so Isabella is with his mum and I'm tucked up in bed with the laptop, mobile phone, packed lunch and bottled water attempting to concentrate on the HCI assignment due in today and the questionnaire I need to email out to my WBL client for her students.
*sigh* at least I'm not a single mum, I'd be hospitalised and she'd have been taken into care by now.
What's worse is the 2 lessons I've missed today because of this are the 2 I most need to attend! It's frustrating to say the least!
..but it could always be worse, I have a roof over my head and food on the table beside me, internet access (always a good thing) and I've got until 11 to get the HCI in and even if it isn't to my 'usual' standard it's 'only' 20% of the mark, I've got tomorrow to rest up ready for Friday and a gorgeous daughter to cuddle and love - when he brings her home
So.. Work!
Monday, January 19, 2009
Back to normal
It's been nearly 5 months since my daughter was born, in that time I've tried to get to grips with motherhood whilst staying on top of my coursework. It hasn't been easy.
I missed the first 6 weeks of term because I was breastfeeding, that and I was just too knackered to consider anything outside of newborn hell - ME/CFS had prepared me for being constantly knackered but this was even beyond that because of the emotions.
I now know how to describe CFS to any couple who've gone through the child rearing process, well, what the brainfog and fatigue is like anyway; Imagine having the flu 4 weeks after your child was born, just as she's coming out of a growth spurt..
Horrible isn't it?
Sadly, despite managing to boom and bust my way through the rest of semester A, this last week it has all caught up on me in a big way. I really can't tell if it's just the menieres or the ME/CFS any more. I've had definite menieres attacks - at least one every day for the last week.
I've had dizzy spells, nausea and ear pain, tinnitus, splitting headaches and full on fatigue in waves.
2 days ago was definite ME/CFS as I awaoke at 06:30 to go and make Izzys bottle only to find I couldn't get out of bed. I was stuck there until just gone 12 when I managed to haul myself along the walls to the bathroom and then promptly collapse on the couch until around 9pm.
The only interaction i had with my daughter was when Stef laid her between myself and the back of the couch for her afternoon sleep. This is getting to be far too familiar.
I've hardly dared to pick her up because:
What is worse is knowing that there is little I can do about any of this, I have an appointment to see my doctor in a few days, I'm hoping a new lot of betahistine hydrochloride will help get the dizzy stuff under control, I don't remember it having much affect last time but I hadn't been taking it for long when we found out I was pregnant and had to stop medicating.
Lets just hope that the last couple of days rest is enough to tide me over, I have a test on wednesday and an exam on thursday - a crash before or during either of those would be catastrophic for my chances of passing this course with any kind of decent grade - I'm only just managing a pass grade as it is!
I missed the first 6 weeks of term because I was breastfeeding, that and I was just too knackered to consider anything outside of newborn hell - ME/CFS had prepared me for being constantly knackered but this was even beyond that because of the emotions.
I now know how to describe CFS to any couple who've gone through the child rearing process, well, what the brainfog and fatigue is like anyway; Imagine having the flu 4 weeks after your child was born, just as she's coming out of a growth spurt..
Horrible isn't it?
Sadly, despite managing to boom and bust my way through the rest of semester A, this last week it has all caught up on me in a big way. I really can't tell if it's just the menieres or the ME/CFS any more. I've had definite menieres attacks - at least one every day for the last week.
I've had dizzy spells, nausea and ear pain, tinnitus, splitting headaches and full on fatigue in waves.
2 days ago was definite ME/CFS as I awaoke at 06:30 to go and make Izzys bottle only to find I couldn't get out of bed. I was stuck there until just gone 12 when I managed to haul myself along the walls to the bathroom and then promptly collapse on the couch until around 9pm.
The only interaction i had with my daughter was when Stef laid her between myself and the back of the couch for her afternoon sleep. This is getting to be far too familiar.
I've hardly dared to pick her up because:
- she is now so heavy I struggle to hold her for long periods of time and
- The dizzy spells have been coming on so quickly I worry about stumbling with her in my arms
What is worse is knowing that there is little I can do about any of this, I have an appointment to see my doctor in a few days, I'm hoping a new lot of betahistine hydrochloride will help get the dizzy stuff under control, I don't remember it having much affect last time but I hadn't been taking it for long when we found out I was pregnant and had to stop medicating.
Lets just hope that the last couple of days rest is enough to tide me over, I have a test on wednesday and an exam on thursday - a crash before or during either of those would be catastrophic for my chances of passing this course with any kind of decent grade - I'm only just managing a pass grade as it is!
Tuesday, August 12, 2008
Nearly there!
It's been a long and tiring journey but the end is finally in sight! Just 2 weeks of this torture left and I'll have more sleepless nights - but at least I'll be able to sit and lie down comfortably again, I can start taking my medication to ward off the menieres nastiness that's been driving me mad all month and I'll have a baby!
I can't believe it, even now I'm the size of a house and the damned thing is trying to punch a hole through my gut I still catch myself being amazed at the thought of me with a child.
It's hard work though - I’m forced out of bed at stupid o’clock every morning by the demonspawn (after too little sleep) to walk in a figure of eight around the living room for hours rubbing my belly and muttering pleadings to whatever god may be out there to let me get this portion over with, I’ll get maybe 10 minutes ease every now and again by falling on my knees to lean against either the ball or the beanbag for a rest and then the squirming starts and I have to get up (with help, I'm now incapable of reaching a standing position unaided) and walk around some more..
I can't believe it, even now I'm the size of a house and the damned thing is trying to punch a hole through my gut I still catch myself being amazed at the thought of me with a child.
It's hard work though - I’m forced out of bed at stupid o’clock every morning by the demonspawn (after too little sleep) to walk in a figure of eight around the living room for hours rubbing my belly and muttering pleadings to whatever god may be out there to let me get this portion over with, I’ll get maybe 10 minutes ease every now and again by falling on my knees to lean against either the ball or the beanbag for a rest and then the squirming starts and I have to get up (with help, I'm now incapable of reaching a standing position unaided) and walk around some more..
Seriously - it’s killing me!
..and that’s before I even mention the acid! heartburn nothing! I have some really nasty strain of acid that eats its way up my throat and forces itself into my ears, I’ve had more menieres attacks in the last month than throughout the rest of the pregnancy combined because these acid attacks seem to trigger ‘em. I’m relying on mint choc chip ice cream and Gaviscon at night to ensure I get at least an hours kip in before the obligatory toilet visits.
I just keep telling myself that it's not long to go - the leaky nipple thing combined with frequent braxton hicks contractions is evidence of that, as is the way my belly has dropped - that's why I can't sit down anywhere, the weight of my belly crushes my thighs and cuts off circulation, in order to get any rest I have to go lie on my side (for about 30 minutes before having to switch because the kid hates me resting!)
Thank god the CFS has only shown its face a couple of times, it's unpleasent normally but when you're aware of discomfort and can't do a thing about it.. well, here's hoping it stays 'gone' after the birth, I think the menieres is going to be tough enough with a newborn in the house without the extra worry of a crash.
Monday, March 31, 2008
More pregnancy stuff
It's amazing how in just the space of a few months my whole outlook on almost everything has changed.
I've lost interest in practically everything none baby related, my blogs and my website have fallen by the wayside despite the 4 years I've spent building them up, I have a fairly strong readership over on my main blog and my web presence is pretty impressive for a dabbler - but just lately I've given real thought to just ditching it all when my hosting expires. I'm just not that person anymore.
I'm having to force myself to concentrate on college, I just can't garner any enthusiasm for it at present as the goals I had have changed - yes working from home is still an achievable goal but I just can't picture it the way I could before because my head is so full of the realities of childrearing - web design and programming are coming in a very poor second to that image.
Even my views on things have altered. I've been very open on the web up to now and had no problem sharing my life with people, yet suddenly I'm looking at things differently and censoring what I have to say - or just not saying anything at all.
I knew having a child would change things, what I failed to realise was just how much of that change would involve my view of myself.
Perhaps this is what growing up is all about? I'm not sure where this journey will take me but it's obvious now that it's in a different direction than I'd ever really imagined before.
On the physical side of things, I'm definitely on a boom/bust cycle, I'm finding it impossible to pace because I'm having trouble resting; I'm tired and stressed about our current living situation because time is running out on finding somewhere, there's only 4 months to go until I'm due to give birth and I NEED to be settled at least a month before that happens - and my temperature control is even worse than with the ME/CFS. I heat up to the point of passing out, yet if I strip off/ go outside then within the space of minutes I can be shivering again.
Doesn't help that the whole family are out for the count with the flu, I've been avoiding them as much as possible in an attempt to ward it off - flu is not fun at the best of times but while pregnant I can't have decongestants and the like and I'm almost incapable of breathing through my mouth!
I've lost interest in practically everything none baby related, my blogs and my website have fallen by the wayside despite the 4 years I've spent building them up, I have a fairly strong readership over on my main blog and my web presence is pretty impressive for a dabbler - but just lately I've given real thought to just ditching it all when my hosting expires. I'm just not that person anymore.
I'm having to force myself to concentrate on college, I just can't garner any enthusiasm for it at present as the goals I had have changed - yes working from home is still an achievable goal but I just can't picture it the way I could before because my head is so full of the realities of childrearing - web design and programming are coming in a very poor second to that image.
Even my views on things have altered. I've been very open on the web up to now and had no problem sharing my life with people, yet suddenly I'm looking at things differently and censoring what I have to say - or just not saying anything at all.
I knew having a child would change things, what I failed to realise was just how much of that change would involve my view of myself.
Perhaps this is what growing up is all about? I'm not sure where this journey will take me but it's obvious now that it's in a different direction than I'd ever really imagined before.
On the physical side of things, I'm definitely on a boom/bust cycle, I'm finding it impossible to pace because I'm having trouble resting; I'm tired and stressed about our current living situation because time is running out on finding somewhere, there's only 4 months to go until I'm due to give birth and I NEED to be settled at least a month before that happens - and my temperature control is even worse than with the ME/CFS. I heat up to the point of passing out, yet if I strip off/ go outside then within the space of minutes I can be shivering again.
Doesn't help that the whole family are out for the count with the flu, I've been avoiding them as much as possible in an attempt to ward it off - flu is not fun at the best of times but while pregnant I can't have decongestants and the like and I'm almost incapable of breathing through my mouth!
Tuesday, March 18, 2008
Am I the anti-christ?
Went into Hatfield yesterday for an impromptu programming study group (i.e. me and Johnella) got home to find everyone rushing around because we had to go to mass - reconciliation or something (I'm not catholic so it's all a tad confusing) so I wolfed down some tea, got changed and off we went.
I have to say, the church is quite pretty and for a change the mass was a short one, but obviously I had to gee things up a bit.. I only went and fainted! It was so embarrassing - I've had dizzy spells and I'm used to the me/cfs crashes, but I never faint! ..And of course we had to be sat in the second row instead of nice and anonymously at the back! I don't know what caused it, one minute I'm kneeling next to Stef for the prayer and finding it hard to breathe, then I get a sharp pain in my guts, a roaring sensation in my ears and everything fizzles out. So while Stef and his dad are trying to hoist me back up onto the pew, his mum rushes off to get me a glass of water and I'm coming around just as everyone is queueing up for the 'laying on of hands' so I ended up sitting there feeling mortified as every single person in the church is parading past our seats and trying not to make eye contact with anyone - it's bad enough feeling ill without a couple hundred people witnessing it!
Thankfully mass ended not long after that so we escaped, I got home and had to rush to the loo for a bowel explosion (hey, I like to share!) and went straight up to bed feeling awful.
Needless to say, the antenatal yoga this evening has been cancelled and I'm trying to take it easy - Stef and his mum are at the church now putting the finishing touches to the Easter garden and I'm trying to decide whether it's worth calling the Dr's or not. I still feel a bit under the weather, a little nauseous, tired and light headed, but nothing more than I've been feeling on and off since getting pregnant anyhow. I don't think I have a temperature (mental note, get a thermometer) it was just a one off (I hope) my thinking is rather than get all panicky, just see how I go - it could have been the heat, incense, drop in sugar levels - anything. If it happens again then I'll go crying to my doctor.
I have to say, the church is quite pretty and for a change the mass was a short one, but obviously I had to gee things up a bit.. I only went and fainted! It was so embarrassing - I've had dizzy spells and I'm used to the me/cfs crashes, but I never faint! ..And of course we had to be sat in the second row instead of nice and anonymously at the back! I don't know what caused it, one minute I'm kneeling next to Stef for the prayer and finding it hard to breathe, then I get a sharp pain in my guts, a roaring sensation in my ears and everything fizzles out. So while Stef and his dad are trying to hoist me back up onto the pew, his mum rushes off to get me a glass of water and I'm coming around just as everyone is queueing up for the 'laying on of hands' so I ended up sitting there feeling mortified as every single person in the church is parading past our seats and trying not to make eye contact with anyone - it's bad enough feeling ill without a couple hundred people witnessing it!
Thankfully mass ended not long after that so we escaped, I got home and had to rush to the loo for a bowel explosion (hey, I like to share!) and went straight up to bed feeling awful.
Needless to say, the antenatal yoga this evening has been cancelled and I'm trying to take it easy - Stef and his mum are at the church now putting the finishing touches to the Easter garden and I'm trying to decide whether it's worth calling the Dr's or not. I still feel a bit under the weather, a little nauseous, tired and light headed, but nothing more than I've been feeling on and off since getting pregnant anyhow. I don't think I have a temperature (mental note, get a thermometer) it was just a one off (I hope) my thinking is rather than get all panicky, just see how I go - it could have been the heat, incense, drop in sugar levels - anything. If it happens again then I'll go crying to my doctor.
Friday, March 14, 2008
Pregnancy and CFS
I've been neglecting this blog as my main one has been getting all the love of late, it's where I broke the news of my pregnancy and between it, my college blog and the pregnancy journal I've had little thought to spare for this poor thing.
It seems all I can think of is this little creature to the exclusion of practically all else.
Ok so with the CFS crap I should be used to feeling tired, but it doesn't make me feel any better. I just need to sleep.
The menieres thing has been playing up again and I'm constantly just wishing I had somewhere I could go, I can't relax here - I'm too aware of Endora bimbling about downstairs with the expectations of me helping out around the house
I just really wish we had our own place. I'm stressed about everything, home, college, family, the future..
I'm trying REALLY hard not to be because I know stress is really the worst thing for me - it's what keeps exacerbating all my health issues and I'm starting to worry about the effect it may have on the baby (so great.. something ELSE to worry about)
I just wish I could sleep - one night of decent uninterrupted sleep.. That would be bliss.
The thing is, I wake up from dozing because I need the loo - but when I get to the loo I can't even force out a drip. it's frustrating as hell.
Yet despite the lack of sleep, the stress, the cramping and dietary weirdness I think it may be true what they say about pregnancy helping CFS because despite living with the kind of stress that would normally have me bedridden and crying, I'm still able to function.
I'm wondering if it isn't more to do with the folic acid supplements than the pregnancy itself though.. I have a vague recollection of some vitamin shots being offered to some CFS patients in America or Canada and the recipients showed definite signs of improvement - since every woman wanting a healthy baby starts taking a minimum of 400mg of folic acid a day, perhaps that could account for the added resistance to the fatigue..?
Who knows? If I could be bothered I'd google it and check but I'm shattered.
Yup, I'm bloody knackered. But going off the other pregnancy journals I've been reading, that is applicable to every woman partaking in the baby cooking project regardless of health.
I'm just tired, constantly. I think I used up all my excitement the day of the scan because at the moment I don't really feel much of anything - aside from tired and constantly annoyed and wanting to just stay under the covers and shut the world away.
Seriously, I cannot concentrate on college at all - I have assignments due in and instead of working my arse off i'm catching myself thinking 'sod it' and 'what does it matter'.
It's worse than the brain fog you get with CFS - at least with that there is a sense of distance, it's frustrating but at least you can tell it's a physical manifestation because you're not able to take things in. With the pregnancy fog I can take things in but a second later I've forgotten what it was and I'm so distracted it's untrue, I can't focus on anything.. it's hard to really explain the difference between the 2 mind states, I just know that now if a midwife asked me to describe CFS to them I can say "imagine all the mental symptoms of pregnancy combined with the physical symptoms of the flu, add a shot of morphine to the mix and there you have it - instant CFS!"
But i'm still managing to get up and (for the most part) attend class, i'm communicating well and still keeping it together - under these circumstances, prior to the pregnancy, that would have been a miracle.
It seems all I can think of is this little creature to the exclusion of practically all else.
Ok so with the CFS crap I should be used to feeling tired, but it doesn't make me feel any better. I just need to sleep.
The menieres thing has been playing up again and I'm constantly just wishing I had somewhere I could go, I can't relax here - I'm too aware of Endora bimbling about downstairs with the expectations of me helping out around the house
I just really wish we had our own place. I'm stressed about everything, home, college, family, the future..
I'm trying REALLY hard not to be because I know stress is really the worst thing for me - it's what keeps exacerbating all my health issues and I'm starting to worry about the effect it may have on the baby (so great.. something ELSE to worry about)
I just wish I could sleep - one night of decent uninterrupted sleep.. That would be bliss.
The thing is, I wake up from dozing because I need the loo - but when I get to the loo I can't even force out a drip. it's frustrating as hell.
Yet despite the lack of sleep, the stress, the cramping and dietary weirdness I think it may be true what they say about pregnancy helping CFS because despite living with the kind of stress that would normally have me bedridden and crying, I'm still able to function.
I'm wondering if it isn't more to do with the folic acid supplements than the pregnancy itself though.. I have a vague recollection of some vitamin shots being offered to some CFS patients in America or Canada and the recipients showed definite signs of improvement - since every woman wanting a healthy baby starts taking a minimum of 400mg of folic acid a day, perhaps that could account for the added resistance to the fatigue..?
Who knows? If I could be bothered I'd google it and check but I'm shattered.
Yup, I'm bloody knackered. But going off the other pregnancy journals I've been reading, that is applicable to every woman partaking in the baby cooking project regardless of health.
I'm just tired, constantly. I think I used up all my excitement the day of the scan because at the moment I don't really feel much of anything - aside from tired and constantly annoyed and wanting to just stay under the covers and shut the world away.
Seriously, I cannot concentrate on college at all - I have assignments due in and instead of working my arse off i'm catching myself thinking 'sod it' and 'what does it matter'.
It's worse than the brain fog you get with CFS - at least with that there is a sense of distance, it's frustrating but at least you can tell it's a physical manifestation because you're not able to take things in. With the pregnancy fog I can take things in but a second later I've forgotten what it was and I'm so distracted it's untrue, I can't focus on anything.. it's hard to really explain the difference between the 2 mind states, I just know that now if a midwife asked me to describe CFS to them I can say "imagine all the mental symptoms of pregnancy combined with the physical symptoms of the flu, add a shot of morphine to the mix and there you have it - instant CFS!"
But i'm still managing to get up and (for the most part) attend class, i'm communicating well and still keeping it together - under these circumstances, prior to the pregnancy, that would have been a miracle.
Saturday, February 09, 2008
What's the point?
I'm fed up (again) all I can hear in my right ear is the muffled boomy sound of my own heartbeat, it feels blocked which in turn is making my throat and nose feel a tad bunged up - even though they aren't.
But it's not that that's making me fed up. No.
I have the place to myself, singsnap has dozens of new songs that I want to try and I can no longer sing for toffee because I can't hear properly - I can't judge the tone or pitch so I sound AWFUL! That and it's actually uncomfortable because when I sing or speak my right ear booms and pops like a speaker with a dodgy cable, it's distressing!
I wouldn't mind but singing is the ONLY truly enjoyable activity I had left. I can't go for long walks anymore, adventure holidays are forever off the list and cycling is also out, martial arts are forbidden and dancing has been lost to me for years. It seems that whatever the CFS/ME hasn't already stolen from me this Menieres disease is claiming instead.
*sniff* even going to the cinema is a bit dicey because the volume levels can be quite painful to me now.
At least I still have my eyesight, if I lost the ability to read as well I'd say just shoot me now.
Lately I've missed several classes due to the dizziness, I've just not been able to get out of bed and I've felt rotten. Headaches have plagued me for weeks and I'm just fed up with everything, I'm listless and have no enthusiasm for anything - I have work that needs doing and instead I'm playing texttwirl on facebook or browsing amazon and the like.
I just don't care anymore. I'm sick of being ill. I'm sick of trying and getting nowhere and I'm just SICK of life.
..Oh and according to the DVLA I'm banned from driving because of the damned thing too.
I just hope that this is all worth it, everything happens for a reason so there must be something good to come out of this - there has to be!
Thursday, January 31, 2008
Hospitals and college timetables
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!
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!
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?!
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