Jeanine from the Welfare Advice rang me today and seemed more talkative and we've arranged for her to come to me on a home visit on Febuary 1st.
In the mean time I need to fill in the generics of the form like my name, address, bank details etc and write down other stuff as it happens. How long it takes me to get dressed, get out of bed, etc etc so I'll be making notes from now on and saving them to the laptop in a word file.
I didn't make my Rhuematology appointment this morning thanks to being shown last nights dinner again in the loo. I feel ok now, tummy seems fine, I've eaten a light lunch and dinner and kept it down, so I have no idea what it was, whether it's the fluoxetine kicking in or not I don't know.
I also saw on my appointment letter after I'd cancelled that I need to bring a urine sample with me too and I don't have a bottle so I need to get one from the GP office, lovely.
That's about it really, nothing major apart from the throwing up this morning, dead leg is still with me, still stuck indoors, still staying in my PJ's all day.
Friday, 22 January 2010
Thursday, 21 January 2010
Not so helpful!
Council chap came round this morning and took all the ID he needed.
I finally managed to get through to the Welfare Advice line and spoke to a lady who was er, rather abrubt. In the 10 minute phonecall I don't think I managed to complete a full sentence without her trying to finish it off for me.
She's calling me either tomorrow or Friday to arrange a home visit, but she said in a roundabout way she doesn't think I'll be entitled to a penny as claiming DLA for CFS is nigh on impossible, which was encouraging *sigh*
Other than that a pretty non eventful day. The daily dead leg is getting on my nerves, I shall mention it to the Rheumatologist at my appointment tomorrow.
Oh and some thick twat thought s/he could get into my Gmail account earlier too. So stupid infact they thought by pressing the reset password button they'd automatically get it. They are obviously lacking in the grey matter if they thought it was as simple as that and they could have a good old nosey at my account. Honestly, are some people really that clueless?
Oh, quickly before I go, I googled and found out the problem with my left eye, it does have a name better than 'rugby eye' it is actually called Astigmatism, so there you go.
I also came to the conclusion my sleep fail the other night was most likely down to me forgetting to take my Fluoxetine in the morning and taking it just before bed. Not proven but it does seem logical.
I remember when I was on Seroxat they worked for me better when I took them before bed than taking them in the morning so the time of day does make a difference, although saying that I'm not about to go and test my theory because I don't fancy another night like that night!
I finally managed to get through to the Welfare Advice line and spoke to a lady who was er, rather abrubt. In the 10 minute phonecall I don't think I managed to complete a full sentence without her trying to finish it off for me.
She's calling me either tomorrow or Friday to arrange a home visit, but she said in a roundabout way she doesn't think I'll be entitled to a penny as claiming DLA for CFS is nigh on impossible, which was encouraging *sigh*
Other than that a pretty non eventful day. The daily dead leg is getting on my nerves, I shall mention it to the Rheumatologist at my appointment tomorrow.
Oh and some thick twat thought s/he could get into my Gmail account earlier too. So stupid infact they thought by pressing the reset password button they'd automatically get it. They are obviously lacking in the grey matter if they thought it was as simple as that and they could have a good old nosey at my account. Honestly, are some people really that clueless?
Oh, quickly before I go, I googled and found out the problem with my left eye, it does have a name better than 'rugby eye' it is actually called Astigmatism, so there you go.
I also came to the conclusion my sleep fail the other night was most likely down to me forgetting to take my Fluoxetine in the morning and taking it just before bed. Not proven but it does seem logical.
I remember when I was on Seroxat they worked for me better when I took them before bed than taking them in the morning so the time of day does make a difference, although saying that I'm not about to go and test my theory because I don't fancy another night like that night!
Wednesday, 20 January 2010
How many bottles?
4!
That's how many they took out of my arm today the greedy gits!
My arm is bruising up nicely aswell, lovely!
I get the results back in a week but they will be normal, Dr Sam just did them to rule everything out but they always come back normal, it's just my CFS.
Not much else to update on really. Glasses going well, still keep hitting them when I go to rub my eye though, ha!
MORE forms came through today, god knows what for though. It says it's to reapply for housing and council tax benefit but I'm already in the process of that with my local council, this has come from job centre plus and wants me to send it to the county council.
Luckily a chap from my local council is coming to the house tomorrow to see some ID and proof of income so I'll ask him about it, but it's confusing to say the least.
That's how many they took out of my arm today the greedy gits!
My arm is bruising up nicely aswell, lovely!
I get the results back in a week but they will be normal, Dr Sam just did them to rule everything out but they always come back normal, it's just my CFS.
Not much else to update on really. Glasses going well, still keep hitting them when I go to rub my eye though, ha!
MORE forms came through today, god knows what for though. It says it's to reapply for housing and council tax benefit but I'm already in the process of that with my local council, this has come from job centre plus and wants me to send it to the county council.
Luckily a chap from my local council is coming to the house tomorrow to see some ID and proof of income so I'll ask him about it, but it's confusing to say the least.
Monday, 18 January 2010
Sleep fail
Well yesterdays much needed nap in the daytime considerably buggered up my sleeping for the night.
It took me ages to drop off, then I kept waking up and woke up at 4.30am with almighty stomach cramps so ended up staying up.
Managed to stay awake today though so I don't have a repeat of last night and I'll be heading off to bed as soon as I've made this post.
In better news I got stuck into my practice DLA forms today and got about half way through before I got too tired. There are some questions I'm not sure of so I'll be calling the welfare advisers on Wednesday to see if I can get a home visit so they can run through the form with me so my wording is correct and I've understood it all.
Still not had the official forms through the post yet but I'm not too bothered by that, I have 6 weeks to get it filled in.
TLL came up trumps again today and someone pointed to a BBC portal site called Ouch! which is all about disability related things and it had quite an interesting message board, there were a few Q&A's on DLA and ESA so I'll be keeping my eye on there too alongside Benefits & Work.
Healthwise I've been average today, I haven't had to do anything so I'm not too bad. This dead leg thing I got recently seems to be coming on a daily basis now which isn't pleasant, god knows what that is.
Blood tests tomorrow which require me to fast so since 9pm all I've been allowed is plain water, bleugh!
When I get home from the blood test tomorrow morning I shall be treating myself to some toasted tea cakes.
It took me ages to drop off, then I kept waking up and woke up at 4.30am with almighty stomach cramps so ended up staying up.
Managed to stay awake today though so I don't have a repeat of last night and I'll be heading off to bed as soon as I've made this post.
In better news I got stuck into my practice DLA forms today and got about half way through before I got too tired. There are some questions I'm not sure of so I'll be calling the welfare advisers on Wednesday to see if I can get a home visit so they can run through the form with me so my wording is correct and I've understood it all.
Still not had the official forms through the post yet but I'm not too bothered by that, I have 6 weeks to get it filled in.
TLL came up trumps again today and someone pointed to a BBC portal site called Ouch! which is all about disability related things and it had quite an interesting message board, there were a few Q&A's on DLA and ESA so I'll be keeping my eye on there too alongside Benefits & Work.
Healthwise I've been average today, I haven't had to do anything so I'm not too bad. This dead leg thing I got recently seems to be coming on a daily basis now which isn't pleasant, god knows what that is.
Blood tests tomorrow which require me to fast so since 9pm all I've been allowed is plain water, bleugh!
When I get home from the blood test tomorrow morning I shall be treating myself to some toasted tea cakes.
Sunday, 17 January 2010
Almost got my relaxing day!
....but I didn't have any food in the house to Nathan took me to Asda this morning. Straight in and straight out as I was exhausted. Although I rely on my crutches to be mobile they tire my arms out so they still aren't a solution.
Had to take a nap this afternoon aswell, I try not to sleep in the day but today I just needed it, payback time for yesterday.
Still waiting on my DLA forms to come through, I got my ESA forms on Saturday morning but I need to ring work as they want my sick note as evidence and won't accept copies. I'm hoping tomorrow I'm well enough to start my DLA draft to get the ball rolling too.
Tuesday I have my blood test which is a fasting one so no food and only water from 9pm Monday night. Wednesday I have a chap from the council coming round to go through my finances as I should qualify for more LHA and Council Tax benefit and Thursday I have my appointment at the hospital with the Rheumatologist.
Busy week, not one I'm looking forward to.
I'm still trying to come to terms with all this benefit stuff, I've always worked so I'm riddled with guilt about it at the moment and feel like people will be judging me a sponger, trust me, I'd be working if I could.
Glasses are going ok, still trying to get used to them and managed to hit them twice today when I go to rub my eyes and I forget they're there, but I've had my first headache free day for weeks!
Had to take a nap this afternoon aswell, I try not to sleep in the day but today I just needed it, payback time for yesterday.
Still waiting on my DLA forms to come through, I got my ESA forms on Saturday morning but I need to ring work as they want my sick note as evidence and won't accept copies. I'm hoping tomorrow I'm well enough to start my DLA draft to get the ball rolling too.
Tuesday I have my blood test which is a fasting one so no food and only water from 9pm Monday night. Wednesday I have a chap from the council coming round to go through my finances as I should qualify for more LHA and Council Tax benefit and Thursday I have my appointment at the hospital with the Rheumatologist.
Busy week, not one I'm looking forward to.
I'm still trying to come to terms with all this benefit stuff, I've always worked so I'm riddled with guilt about it at the moment and feel like people will be judging me a sponger, trust me, I'd be working if I could.
Glasses are going ok, still trying to get used to them and managed to hit them twice today when I go to rub my eyes and I forget they're there, but I've had my first headache free day for weeks!
Saturday, 16 January 2010
I can see!
Didn't know I couldn't before, but NOW I can indeed see!
Yup, glasses were needed, £103 later I'm now sporting a rather snazzy (if I do say so myself) pair of glasses.
I can't remember the big long name she said but basically my left eye should be shaped like the side of a football but I'm more like a rugby ball. Comforting to know, that.
After the hoo-ha of getting my glasses (NO thanks AT ALL to the bastards of Kettering Specsavers and ALL thanks to Kettering Vision Express, that's a whoooole other story!) we had a hoo-ha at the cinema when Nathan's eldest Beth got ill and puked up in the theatre and outside in the main halls three times, lovely!
I'm utterly exhausted now and will spend the next 2-3 days paying for it no doubt. Nathan's mum invited us over for dinner tomorrow but I've declined, if I don't have complete rest tomorrow to recover from today then I'll be in serious trouble.
I just hope the whole cause of my headaches was my 'rugby eye' and not CFS so the headaches will go completely, time shall tell.
On another side note, day 3 of Fluoxetine and so far no side effects, but very early days yet.
Yup, glasses were needed, £103 later I'm now sporting a rather snazzy (if I do say so myself) pair of glasses.
I can't remember the big long name she said but basically my left eye should be shaped like the side of a football but I'm more like a rugby ball. Comforting to know, that.
After the hoo-ha of getting my glasses (NO thanks AT ALL to the bastards of Kettering Specsavers and ALL thanks to Kettering Vision Express, that's a whoooole other story!) we had a hoo-ha at the cinema when Nathan's eldest Beth got ill and puked up in the theatre and outside in the main halls three times, lovely!
I'm utterly exhausted now and will spend the next 2-3 days paying for it no doubt. Nathan's mum invited us over for dinner tomorrow but I've declined, if I don't have complete rest tomorrow to recover from today then I'll be in serious trouble.
I just hope the whole cause of my headaches was my 'rugby eye' and not CFS so the headaches will go completely, time shall tell.
On another side note, day 3 of Fluoxetine and so far no side effects, but very early days yet.
Friday, 15 January 2010
Whinge!
Sorry, sorry, sorry. This post will contain nothing but whingey moany whiney bollocks. So feel free to skip!
Today has probably been one of my worst days on record. I am SO sluggish and in so much pain.
I took the first of my Tramadol, I'm trying to keep them just for the worst times as they are apparently so strong. Well, they've done sod all. No pain relief whatsoever.
I still have some codeine left from my last precription and they did work pain wise so might use those again and just put up with the queasy tummy they give me. I think I'd rather have a funny tummy than this pain.
I had planned to get the ball rolling on my DLA form and start off a draft but that's gone out the window, the motivation is there, the energy isn't. My arms are really beginning to ache just typing this so it won't be a long post, I just wanted to record how my day has been.
*Supposed* to be going to the cinema tomorrow to see Avatar 3D again. Yes, again! I loved it, but it was just me and Nathan that went last time and I know Charlotte and Nathan's eldest Beth would both love it too so we're taking them with us. I'm just really hoping I'm up to it.
Today has probably been one of my worst days on record. I am SO sluggish and in so much pain.
I took the first of my Tramadol, I'm trying to keep them just for the worst times as they are apparently so strong. Well, they've done sod all. No pain relief whatsoever.
I still have some codeine left from my last precription and they did work pain wise so might use those again and just put up with the queasy tummy they give me. I think I'd rather have a funny tummy than this pain.
I had planned to get the ball rolling on my DLA form and start off a draft but that's gone out the window, the motivation is there, the energy isn't. My arms are really beginning to ache just typing this so it won't be a long post, I just wanted to record how my day has been.
*Supposed* to be going to the cinema tomorrow to see Avatar 3D again. Yes, again! I loved it, but it was just me and Nathan that went last time and I know Charlotte and Nathan's eldest Beth would both love it too so we're taking them with us. I'm just really hoping I'm up to it.
Thursday, 14 January 2010
My head hurts.
Well a lot more happened today than I was prepared for!
As I promised myself I called the DWP to get my DLA forms sent to me.
Then I got a bit of a bumper post which had my SSP1 form in from work and a choose and book form for my Rheumatology appointment at the hospital.
I called the number on my SSP1 form and it turns out you apply for benefits over the phone. 55 minutes later I was finally done! The chap was really friendly and helpful, and it turns out his wife has ME/CFS too so he gave me lots of advice and tips for filling in my DLA forms.
My Rheumatology appointment is at the hospital on the 21st.
One thing I forgot to mention was an eye test on Saturday. I've had a permanent headache now for weeks. Headaches are a common factor of ME/CFS but I might aswell get an eye test as they are free to rule it out. Glasses will be another expense I could really do without though at the minute!
I'm just exhausted now. My head is pounding and even though I was just sat on the phone for an hour it feels like I've been jogging on the spot for an hour instead but I'm glad it's all done and dusted for now and the ball is rolling so I shouldn't go without any income as the ESA people know when my SSP ends.
I'm going to have some soup for lunch and then crash out and have a sleep on the sofa I think, still in my PJ's.
As I promised myself I called the DWP to get my DLA forms sent to me.
Then I got a bit of a bumper post which had my SSP1 form in from work and a choose and book form for my Rheumatology appointment at the hospital.
I called the number on my SSP1 form and it turns out you apply for benefits over the phone. 55 minutes later I was finally done! The chap was really friendly and helpful, and it turns out his wife has ME/CFS too so he gave me lots of advice and tips for filling in my DLA forms.
My Rheumatology appointment is at the hospital on the 21st.
One thing I forgot to mention was an eye test on Saturday. I've had a permanent headache now for weeks. Headaches are a common factor of ME/CFS but I might aswell get an eye test as they are free to rule it out. Glasses will be another expense I could really do without though at the minute!
I'm just exhausted now. My head is pounding and even though I was just sat on the phone for an hour it feels like I've been jogging on the spot for an hour instead but I'm glad it's all done and dusted for now and the ball is rolling so I shouldn't go without any income as the ESA people know when my SSP ends.
I'm going to have some soup for lunch and then crash out and have a sleep on the sofa I think, still in my PJ's.
Wednesday, 13 January 2010
A semi productive day.
Some things productive, some things not so.
On the non-productive side:
I'm still in my PJ's, I haven't managed to get dressed today.
Today has been one of those 'Bad Days™'. I woke up feeling like absolute crap and haven't improved much either.
As the day has gone on one of my legs has decided to die. It's warm, heavy, achey and really not helping me get about the house much.
I didn't make my blood test today either. I just could not muster up the energy to get there this morning so I've rescheduled for next Tuesday.
I also had to cancel my visit from Denise (my Parental Support Advisor who works for Charlottes school, she got in contact with me after Charlotte had been having a few too many days off school because if she missed her bus I was too poorly to drive her the 15 miles) Denise is fabulous and has really helped in so many ways so I was gutted I had to cancel but I just wasn't up to it.
The box of AD's are still taunting me on my desk, I think I might take the first one tonight before I go to bed so I can sleep through the first few hours rather than panic about it.
On the productive side:
I made a post over on the lovely TLL and got some great advice about my imminent DLA application and have a few new pointers now.
I'm scrapping my plan of ringing up the DWP once I know I have it all ready and ringing them in the morning so if I am successful in my application it'll be backdated to the day I order the forms rather than the day I send in my print off.
I've also been advised of welfare advisers that local councils have so I'll be calling them tomorrow too to see if there is one at my local council, knowing my luck and the size of my local council I'm betting we don't have one. But alas, I shall try!
Nathan is stopping over tomorrow night so I'll be able to have a bath and some well needed cuddles!
On the non-productive side:
I'm still in my PJ's, I haven't managed to get dressed today.
Today has been one of those 'Bad Days™'. I woke up feeling like absolute crap and haven't improved much either.
As the day has gone on one of my legs has decided to die. It's warm, heavy, achey and really not helping me get about the house much.
I didn't make my blood test today either. I just could not muster up the energy to get there this morning so I've rescheduled for next Tuesday.
I also had to cancel my visit from Denise (my Parental Support Advisor who works for Charlottes school, she got in contact with me after Charlotte had been having a few too many days off school because if she missed her bus I was too poorly to drive her the 15 miles) Denise is fabulous and has really helped in so many ways so I was gutted I had to cancel but I just wasn't up to it.
The box of AD's are still taunting me on my desk, I think I might take the first one tonight before I go to bed so I can sleep through the first few hours rather than panic about it.
On the productive side:
I made a post over on the lovely TLL and got some great advice about my imminent DLA application and have a few new pointers now.
I'm scrapping my plan of ringing up the DWP once I know I have it all ready and ringing them in the morning so if I am successful in my application it'll be backdated to the day I order the forms rather than the day I send in my print off.
I've also been advised of welfare advisers that local councils have so I'll be calling them tomorrow too to see if there is one at my local council, knowing my luck and the size of my local council I'm betting we don't have one. But alas, I shall try!
Nathan is stopping over tomorrow night so I'll be able to have a bath and some well needed cuddles!
Day 1 in the Supersonic Chronic House [/Newcastle accent]
Ahh, the first post. The obligatory "I don't really know what to put, but I'm just testing" post.
Luckily for me, I do actually have something important to blog about today!
I went to see Dr Sam yesterday with Nathan. Part of me didn't want to go, because I knew what I was going for - Anti-depressants. I have a long history with AD's, I've been on them previously 4 or 5 times. There is a part of me that really doesn't want to get back on that road again but a bigger part of me that knows I need to. I've gone this far, a year ago I survived the destruction of my 8 year relationship after his infidelity without taking them but I know when I need the extra help and it's now.
To make things slightly more complicated he's given me a different AD than my 'usual'. My usual was 20 or 30mg of Seroxat/Paroxitine. This time I've been given 20mg of Fluoxetine, or as I understand it to be more commonly referred to as Prozac.
So here I am staring at the box, having the do I, don't I conversation in my head. If these were Seroxat I'd have popped one already and got on with it but the fear of a new tablet is stopping me.
Spent a bit of time Googling and looking on the fabulous LJ community that is TLL but well, everyone has different reactions don't they? What happens to them might not necessarily happen to me.
So, in the mean time while I find the balls I'm supposed to use to get them down me they shall sit on my desk and taunt me, even with an empty packet of Walkers Crisps on top of them.
Luckily for me, I do actually have something important to blog about today!
I went to see Dr Sam yesterday with Nathan. Part of me didn't want to go, because I knew what I was going for - Anti-depressants. I have a long history with AD's, I've been on them previously 4 or 5 times. There is a part of me that really doesn't want to get back on that road again but a bigger part of me that knows I need to. I've gone this far, a year ago I survived the destruction of my 8 year relationship after his infidelity without taking them but I know when I need the extra help and it's now.
To make things slightly more complicated he's given me a different AD than my 'usual'. My usual was 20 or 30mg of Seroxat/Paroxitine. This time I've been given 20mg of Fluoxetine, or as I understand it to be more commonly referred to as Prozac.
So here I am staring at the box, having the do I, don't I conversation in my head. If these were Seroxat I'd have popped one already and got on with it but the fear of a new tablet is stopping me.
Spent a bit of time Googling and looking on the fabulous LJ community that is TLL but well, everyone has different reactions don't they? What happens to them might not necessarily happen to me.
So, in the mean time while I find the balls I'm supposed to use to get them down me they shall sit on my desk and taunt me, even with an empty packet of Walkers Crisps on top of them.
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