Wednesday, 12 May 2010

ME/CFS Awareness Day

I'm not the most skilled blog writer in the world, I'm one of those that blogs by saying I did X,Y and Z today, there you go!

But today I want to make a difference, even if I just make ONE more person aware of this disorder then I will be grateful.

This invisible disorder has slowly turned me invisible.  I've never had a massive circle of friends but I had a good social circle at work which has withered down to 2 or 3 that still keep in touch with me.
I can't pop down the street anymore to do errands to bump into local friends, I'm stuck indoors unless assisted. I haven't even seen one of my next door neighbours for over a month.
When I'm sitting on the sofa I can see out of my living room window and I live on a main road in my small town. I see people walk by, cars go by - the world is moving but I'm not. I'm in my own world, and let me tell you, it's pretty bloody boring when I'm alone in it. It's depressing, it's frustrating, it's miserable.

I'm trying desperately not to let this take over my life but there are days I can't even lift myself off the sofa, M.E has control of ME.

There are 2 people in this world that have made the most enormous difference to my life. Nathan, my long suffering boyfriend of almost a year and June, my long suffering best mate of almost 9 years. They are two of the most inspiring, encouraging and kind hearted people I have ever met. They make sure I'm ok, they get me out of the house, they hold my arms when I have to tackle the odd set of stairs, they make me laugh, they keep me going when I feel like I'm losing the fight they understand completely when I have to cancel plans because I'm just too ill, I feel their love everyday and I love them back just as much. I may have this awful, demeaning, debilitating disorder, but with them both in my life I am one of the luckiest people on the planet.

I know you see pictures of me in the local pubs, I know some of you probably think 'well she can't be THAT ill can she?' actually, yes I can. What you don't see is the preparation and end result of what an often taken for granted thing like going to the pub is for me.
I have to completely rest for the whole week beforehand
I have to get Nathan to wash me, iron my clothes and put the clothes on me. It's humiliating, believe me.
I have to make sure I have all my medication with me and everything else I need but can't put too much because my bag will be too heavy for me to cope with.
I worry to the point of sheer fear sometimes that there won't be a seat for me when I get there.
I spend the morning and afternoon convincing myself, talking to myself and psyching myself up just to get there.
I have to dose myself up on all my painkillers to try and numb the pain so I can atleast sit comfortably for a while.
I have to wear clothes a size too big so I can handle them easier when I go to the toilet.Which makes me feel, and look fat. After successfully losing 6 stone it means a lot to me, 2 stones have managed to creep back on and in the condition I'm in, I can't do a thing about it because exercise is impossible.

All that before I've even got there.

I don't want sympathy, I want understanding and awareness. I want this RIDICULOUS rumour that ME/CFS is all in the mind to stop. I want healthcare ministers to acknowledge this disorder and HELP us, not turn us away like they have with me and THOUSANDS of others.

Share this blog, print it, show it to your friends, link it on Facebook, Twitter, anywhere. Get the word out. PLEASE show support by sharing, that's all it takes, no money involved. You won't die, it's not a chain letter, just forward this post to as many people as you want.
We're here, there are over 200,000 of us in  JUST the UK suffering and we want to be heard and understood. Please, if you can do one thing for me,  make us heard by sharing what you've read today.

Friday, 30 April 2010

An eventful week

This week is proving to be quite eventful.

It was my birthday on Tuesday which was lovely, Nathan took me down the local pub for a couple of drinks to get me out in the lovely weather we had that day and my best friend June joined us when she had finished work. Nathan got me an amazing bag which is so different and June got me a beautiful shirt from Next and some lovely flowers which are currently filling my room with the most gorgeous smell!
Wednesday was the day I got my DLA decision after waiting 2 months. As much I was expecting the result I think it angered me even more because they haven't even given me a medical. Needless to say I'm appealing and will take it as far as I can go. I also had to go with Charlotte to the hospital as she was called for another 24hr ECG to see how her heart is doing.
Thursday was my first 'pathways to work' meeting at the job centre. The advisor Mick was a lovely chap who explained everything to me and was genuinely shocked about my DLA decision and thought it was ridiculous I was even there as he could see how much I was struggling.  He gave me a bit more insight into the benefit itself, what I can and can't do and I learnt a few things which was good. He was really supportive and even arranged for me to have my travel expenses paid so I was given £5.25 for petrol in cash on the spot which was really nice!  I was also back at the hospital so they could take off Charlottes ECG machine and download the results.
Today I'm off to my mums later if I feel ok to collect my birthday goodies from her and my brother, I'm trying to conserve as much energy as I can as I've had such a busy week and I really want to see my mum, so today will be spent doing as little as possible so hopefully I'm ok to go this evening.
Sunday is another big day, my ESA medical, something I'm dreading and something I'm expecting to appeal like my DLA decision, I'm mostly expecting them to give me a big fat zero on my points so they'll say I'm fit for work. Time will tell.
The good thing about ESA is that they are actually on schedule with me, which considering the stories I read on a daily basis is a rare thing. I'm supposed to have my medical and the result within the first 13 weeks of claiming. I'm now in week 6 so it's going ok. I've read some people being on ESA for 6 months and no sign of a medical so I'm counting myself quite lucky because once the medical is done and the results are back, if I'm (like I should be) placed in either the care group (NO chance) or the working group (most likely) it'll be a raise of about £20 a week in my pocket which I shan't complain about. Before your medical you are on the 'assessment rate' of ESA which is pittance.
My medical is in Northampton which is about a 30-40 minute drive away so I'll be knackered before I even get there, but I was told you can claim petrol money back for going so I'll be making sure I do that!

I also got my letter through from Physiotherapy, there is now space for me so I need to call them to make an appointment. I'm really not sure how it will help me, but I'm not a doctor so I'll go and see how things are.

Please cross your fingers for me on Sunday!

Wednesday, 28 April 2010

Quelle Surprise.

Got my DLA decision today.

Turned down flat, no mobility component, no care component.

According to them, without even seeing me I can:
Walk up to 50 meters - WRONG
Wash, bathe, shower or dry myself - WRONG
Dress and undress - WRONG
Get up and down stairs - WRONG

I am:
Not at risk of falling - WRONG

I do not need help to:
Use a cooker - WRONG
Carry and lift safely - WRONG
Get in and out of a chair - WRONG




Amongst other things I'm frankly too angry to even type about at the moment.

I'll see them at the tribunal then.

Tuesday, 13 April 2010

So pretend you're in a wheelchair...

Once again, a bombshell that could cause huge financial hardship to tens of thousands of claimants has been dropped, virtually unnoticed, by a government minister.
The shock plans, for ‘simplifying’ the work capability assessment for employment and support allowance (ESA) include docking points from amputees who can lift and carry with their stumps. Claimants with speech problems who can write a sign saying, for example, ‘The office is on fire!’ will score no points for speech and deaf claimants who can read the sign will lose all their points for hearing.
Meanwhile, for ‘health and safety reasons’ all points scored for problems with bending and kneeling are to be abolished and claimants who have difficulty walking can be assessed using imaginary wheelchairs
These changes, and many more, have already been approved by the secretary of state for work and pensions but have not yet passed into law. They will affect both ESA claimants and the 1.5 million incapacity benefits claimants waiting to be assessed for ESA.


Read the full story HERE 

I'm scared enough about my medical as it is. When Jeanine came round to help me with my form she told me about some cases she was helping to appeal. One that stuck in my mind was a woman that scored 0 points, one of the reasons for this was that the "doctor" believed she could "walk her dog for 20 minutes a day"....the woman didn't even have a dog.


I got a leaflet put through my door the other day from my local MP (Labour) spewing the usual crap but there was a check box to say you wanted to see him and they would be in touch.
I think I'm going to tick that box and see just want he thinks about the matter because unless he loudly condemns this AWFUL plan then he won't be getting my vote.

Thursday, 8 April 2010

"There's no such word as can't!" ...wanna bet?

It's taken me all afternoon to fill in (what I can) the ESA50 novel form and I could only complete about 20% of it the rest I have to wait to fill in when Jeanine comes over tomorrow.
I find all this form filling in more exhausting than physical activity half the time even when I try and be good to myself by typing my answers and printing them out so Jeanine can do the actual writing on the form for me. My back aches, my fingers ache from typing, I swap from the desktop to the laptop to try and keep the pain down and it mentally drains me because you spend the whole time fighting your built in coping mechanism.
The coping mechanism is the brave face, the 'don't worry about me!' facade, 'yeah, I'm tired but I'm ok' answers, the 'I do it because I have no choice' answers when in reality I haven't eaten or drank all day due to sheer exhaustion or haven't washed my hair for over a week because I didn't have someone to help me and to be perfectly blunt, I look a mess and I stink.
I just can't be that person that says 'I cant do this, this and this' because if I keep saying that I'll stop trying. But you can't be that way when filling out the benefit forms because if you put on your facade and your brave face then they presume you can do all these wonderful and physical things and you get no help.So down comes the facade and the brave face and you're painfully reminded of what exactly you can't do. The list gets longer and longer as you go through the form and the 'Can't's' woefully outnumber the 'Can's' by 20 to 1. Food for thought? More like a whole menu and the dessert list on top, and don't forget the complimentary mint with the bill too...

Monday, 29 March 2010

Weekend update

I had a lovely weekend, got out of the house and enjoyed some sunshine!
We went off to see Alice which was great, I really enjoyed it and then we went for a meal at the Brewers Fayre afterwards which was delicious!
It did wipe me out though and I spent the rest of the Saturday dozing on and off on the sofa all evening, I think I spent more of it asleep than awake.
Putting the clocks forward has messed me up a bit too and I've found myself waking up even earlier than normal.
Sunday was nice too, we went to Nathans town and stopped in a couple of places to have a drink and enjoy the glorious weather we got, it was lovely and sunny and warm enough not to wear a jacket which was great, it really did brighten me up and Charlotte got her first experience of skittles!

The nice weekend has filled me with motivation and today I have been printing and making up lists so I have something to do each day health permitting. I've written a weekly and monthly housework planner and got all my ESA/DLA paperwork back in order as I'd been slacking in that department.

I really wasn't keen on roping Charlotte into the housework but the bottom line is, she needs to. She won't be doing everything, I don't think that's fair at all, but she has agreed to help me with some things and take care of her own bedroom. Nathan does most of it for me and it's so unfair, he works full time as it is and the last thing I want is for him to walk in and start dancing with the hoover, his evenings should be rest time, not doing someone elses housework.
He genuinely doesn't mind and his happy to do it for me, I think it's a way he feels he knows he can help as there is nothing he can do about my pain and fatigue but I mind, I don't like the idea of him doing it.
I'm at the stage now where I know if it will tire me out too much I won't do it, rather than do it anyway and regret it later but I'm filled with frustration that I can't do more than I currently can.
I'll pay Charlotte for her help once my ESA is sorted out and/or my DLA, whichever is first, at the whopping £31 a week I'm currently receiving I can't,.but I have promised to buy her a game for the Wii when it comes out on the 23rd of April.

This week I intend to rest as much as possible as me, Nathan and my best friend June are off to the coast on Saturday. I'll go if it kills me, as much as I love my town I'm yearning to get out, to feel some freedom, to see some new scenery. I don't care if it's cold, I don't care if it's raining, I don't care if I spend the rest of the week in bed because of it, I'm bloody going!!

On the completely un-organised side of thing I've been forgetting to take my amitriptyline. I haven't taken it for 3 nights now which I have no excuses for as I have my pill reminder case right infront of me all the time. I think it's the whole '2 hours before bed' thing that's throwing me, I don't sleep at a set time, I sleep when I feel the need to, and I don't know 2 hours in advance when that will be! So this week I'm trying to be organised with it and take it at a set time roughly 2 hours before my average bedtime and if its 3 hours beforehand or only an hour, sod it, it'll do. Taking the tablet at a rough time is better than not taking it at all.

I still haven't had my form through from the council for my blue badge, it seems that the chap I spoke to has forgotten me so now I'm in limbo again of trying to decide whether to apply now and go through the checks and medical or just wait for my DLA decision and hope I get High Rate Mobility (yeahhhhhhhhhhhhh right)

I managed to get hold of Jeanine about my ESA medical form and she was her usual aloof  'I really haven't got time for this' self and I barely managed to finish a sentence and got told off for trying to be detailed as possible and telling her something 'completely irrelevant', I just hope she's in a better mood when she comes to help me on April 9th, she seemed a completely different person when she helped me with my DLA form.

Friday, 26 March 2010

Weird Day

I can't explain how I feel, I'm all out of sorts. I'm exhausted but not in the usual way. I'm starving but too tired to cook, the spring cleaning bug has hit me and again, I'm too tired to do anything about it.
I haven't got the heavy feeling I usually have when I'm tired, motivation is an all time zero but my body feels ok, no heaviness, the pain is minimal but I still can't get myself going. If my body usually felt like this I would class it as a better day but I'm just as bad as I am on a no spoons day but with a different feeling.

I don't know if it's the amitriptyline, I wouldn't have thought it would affect me so soon but nothing else seems to explain it.
I've been snoozing on and off all day. Usually if I'm sleepy I'll settle down to an hour or two and then I'm ok again but today I have been half asleep and half awake all day but not feeling any gain from the naps.

Just a really, odd, unknown feeling and I'm not comfortable with it at all, it's almost like I'm not within my body?

Sorry for the babble, just want to get it written down while it's fresh in mind and feeling.

Good weekend coming up

Amitriptyline Day 2: Took a while to drop off, and was wide awake around 4.50am, which in todays case was fabulous because I wanted to be up for the Australian GP Practice at 5.30am, but on any other day I wouldn't have been amused as it will probably mean an afternoon nap which naffs up my sleep pattern completely.
On the good side I have woken up quite alert unlike yesterday.

I was too ill to go with Charlotte back to the hospital yesterday which I was incredibly annoyed and frustrated with. It's situations like this that really, really get me down about this awful disorder I have. I try to keep as positive as possible but when it robs me of being with my daughter in an incredibly important time I just want to explode with rage and fury.
I didn't miss much, it was just a case of them removing the ECG and that was it, no results from it as yet, but I should have been with her. Thank heavens for Nathan, I couldn't cope without him.

On a brighter note I am happier this morning as I seem to have mostly recovered from the hospital trip and if this carries on I'll feel ok to go to the cinema tomorrow to see Alice. And ofcourse I have the Australian GP to look forward to!!! One thing I haven't really talked about too much - my big geekdom hobby which is the F1 season. I am obsessive about it and I'm a die hard McLaren fan!
P1 was at 1.30am and P2 was at 5.30am so I made the horrible choice of missing P1 in favour of grabbing P2 so I got some sleep. P3 is at 3am tonight and I'm currently deciding whether to go back to sleep once Charlotte is off to school so I can stay up later, or go to bed really early and get up for 3am to catch it and then qualifying at 6am, I'll be glad when the season heads back to Europe!

Thursday, 25 March 2010

Amitriptyline

Not impressed so far, not at all.

I have woken up feeling the worst I've felt for a very long time.
I feel so sluggish, I ache more than usual and can barely move and I don't feel any refreshment from my sleep at all, I feel just as exhausted and wiped out as I did when I went to sleep. I usually feel somewhat alert in the mornings even though I rarely feel refreshed from my sleeps but it's never been this bad. I literally feel like I didn't sleep a wink last night when I know I was spark out within 10 minutes.

I can't solely blame the amitriptyline, yesterdays Krypton Factor adventure could also be a factor but good grief it's taken me all the morning to peel myself off the sofa to write this entry so it's recorded as my mind is slowly turning to goo lately.

That pill reminder thingy I ordered from ebay came yesterday so that should be a big help as I was getting very forgetful with just 1 tablet a day and now I have to take 2.

This is all I'm going to write for now, I just wanted to record the morning after amitriptyline.

Wednesday, 24 March 2010

I hate hospitals!

Today was a rare excursion out of the house, back to the hospital but this time for Charlotte.
She was diagnosed with a heart murmur a couple of weeks back and today was finally her 'urgent' appointment to the hospital.
I didn't like her doctor at all, but we got through the appointment. He didn't hear the murmur but he said they can come and go so now Charlotte is currently sat on the sofa hooked up to a portable ECG machine that is recording her heart rate over the next 24 hours.
Typically the ECG department was what felt like miles away from the paediatric department and then once that was all fitted off we went to the pathology department because she needed blood tests too.
Outpatients was heaving and trying to get past people on my crutches was a nightmare and it seems you become invisible too, I had people trying to squeeze by me and kicking my crutches, people just suddenly turning in front of me and making me suddenly stop so my crutches don't go into their heels, it was ridiculous!

So now after my trip to the Krypton Factor obstacle course, better known as Kettering General Hospital I'm now sat here with the backlash. Legs are in extreme pain and jerking all over the place, a headache of doom and I feel like I've run more marathons than Eddie Izzard and tomorrow I have to do it again as we need to go back to the ECG department to give back Charlotte's monitor. Joy upon joy!

Luckily my gland/ear thing seemed short lived and those have both gone now so I'm feeling slightly more human.

I got letter from the hospital about physiotherapy and I have been told there is a 7 week waiting list so that's on hold for the time being.

Today is day 1 of my Amitriptyline. I've been prescribed 10mg and have to take it 2 hours before bed. I'm yawning my head off and my eyelashes are aching so I took it at 20 past 8 but I'm not sure I'm going to make the 2 hours before I fall asleep!
I've not really had the energy to Google it tonight but I'm going to look more into Amitriptyline tomorrow and it's use with ME/CFS. From what I have previously read it's prescribed for better sleep and pain, both things which I'm having trouble with, especially the pain.
So many friends told me tramadol is supersonic and does the job really well, it wouldn't even take a headache away for me but ME/CFS sufferers do seem to have an intolerance to normal pain relief which is why Amitriptyline is used in small doses so maybe (hopefully!) this will work for the pain because it's draining so badly on top of the extreme fatigue I already have. Codeine seems to work for me in some cases, but it unsettles my tummy so I try to take it only when I really really need to.

I'm looking forward to the weekend, I have booked tickets to see Alice in Wonderland 3D for me, Nathan, Charlotte and Nathans eldest daughter Beth. As silly as it sounds the cinema is quite cathartic for me. I get out of the house without having to walk far, get to sit down so not to tire me out too much and get whisked off to a fantasy world for a couple of hours which heals the cabin fever quite nicely and refreshes me. Sitting for so long does make me begin to ache but the film is quite a distraction and I top myself up on painkillers before the film and I seem to be ok. If I'm having a no spoons day I won't go because even sitting in the same position will about kill me, so I'm hoping I haven't jinxed things by booking the tickets today and I'll be able to go.

Saturday, 20 March 2010

CFS says no

I caved yesterday and did go for a sleep. Got a (disturbed) couple of hours which did help and I still managed to sleep reasonably well last night. Woke up at 5am but managed to snooze until 7 when I'd had enough and got up.

A couple of people sent me links to something called The Spoon Theory on a website called butyoudontlooksick.com. It's a VERY good way of trying to explain a chronic illness like ME/CFS. Please do read it HERE.
Typically today has turned out to be a 'no spoons' day. I've woken up feeling crap. The chances of me getting out or doing anything today are a big fat zero, damn and buggeration. Not that the weather is up to much anyway I suppose.
 I'm not sure if it's just the ME/CFS or something else brewing. My ears are aching and even more so when I swallow, but my glands often swell thanks to the ME/CFS so I don't know if it's related or I'm coming down with yet another viral infection, the culprit Dr Sam and I think eventually caused my ME/CFS because I was getting so so many and never able to recover properly from one before another hit.

Let's hope by resting today I might be able to gather a couple of spoons for tomorrow!

Friday, 19 March 2010

Must.Stay.Awake

Dammit, I'm flagging.

Edging closer and closer to going for an afternoon sleep but I know it's gonna bugger things up later and I'll be wide awake at 3am.
But ohhhh boy do I want to sleep.

I thought I was doing well today, managed to get dressed which was inspired by taking delivery of my McLaren team t-shirt but I think that's probably been the cause of my deflation this afternoon. As stupid as it sounds (see yesterdays rant)getting dressed utterly exhausts me.

I'm hoping I'm somewhat better tomorrow so I can get out of the house a bit with Nathan, even if it's just to the local for a couple of pints. Cabin fever is kicking in again since I escaped these 4 walls to go to the hospital.

Those leg jerks I've been having have travelled up my body today, I sort of twist at the hips all of a sudden now too, it's really bizarre!
I'll be a pro body popper in a few weeks at this rate..

Thursday, 18 March 2010

Yooo Hoooo?

I think I've turned invisible you know.

Not including my mum and brother, I have Nathan, and my best friend June.
I have 782 texts in my mobile inbox because I never get round to deleting them, over 700 of those 782 are from Nathan, my received calls list consists of June and Charlottes school.

I know this reads as a WOE IS ME post and an I WANT ATTENTION NOW!! post, but it's not that, it's just another symptom of the ME/CFS thats invisible. The loss of friends, work and a social life, a part of this god awful disorder that no-one even thinks about.

I feel so cut off and isolated being stuck in the house and 100% reliant on Nathan if I'm up to going out but even more so when you suddenly realise it's been weeks or more since you heard from people you miss.

I don't know what bought this to the forefront for me today, most likely the incredibly patronising and aloof tone of the woman from the council today when I said I couldn't make it to the office to bring in some paperwork, I said I couldn't make it because I have ME, not because I couldn't be arsed. I WOULD come to your lovely office if I could, I would hop, skip and dance and relish in the sunlight and fresh air that this time of year brings if I could. But I can't, and DON'T sodding patronise me because I'm ILL, not LAZY.

Could be crunch time soon

Yesterday was a day of all sorts. It was one thing one minute, another the next and I was getting so muddled and confused.
I got a phonecall back from the job centre yesterday about 30 mins after I'd put the phone down to them.
It turns out my ESA was declined not based on my income like the letter said but because they thought they didn't receive my SSP1 form to prove my SSP had finished so they declined it based on the fact I had no proof of what I was saying. I explained to the chap on the phone that they did indeed have it because I sent it special delivery, recorded and checked the tracking number and it had been signed for. Lo and behold less than 10 minutes later he rang back and they'd found tit, funny that!
So ESA is now in place, I'm being paid £90 in arrears straight away and then a whopping (wait for it.......) £30.61 a week. I'm  filthy rich now and I've booked a test drive with a Lamborghini MurciĆ©lago!!!*

WTC came up with the goods and I got my award notice so I can now show the council my income.

Included in my bumper post was a letter from the DWP about my DLA claim:

We are sorry that we cannot give you a decision on the new claim for Disability Living Allowance yet. This is because we have requested a report from your GP.

From stories I have heard and read it seems once the GP report is back a decision comes back pretty swiftly so crunch time may be imminent. I'm not holding out much hope for the outcome I want.
My GP is amazing, but I don't know what he's like when writing letters. I don't know if he'll be descriptive and explain my mobility and care needs or just say 'yep, I can confirm she has CFS' which is about as much use as a knotted kipper.
I'm presuming I can ask for a copy of the letter as it's about me but I'm really not sure on that. I'll need to go and see him soon to sort out this amitriptilyne as the Rheumatologist didn't give me the tablets just gave me a letter to drop into the GP surgery which Nathan did for me after the appointment at the hospital.
Typically Jeanine is on annual leave till next week so a bit in limbo as she made it VERY clear I'm not to fill in any forms without her and I have to do the medical one for ESA so they can decide what group I go in to.

I rang up the council yesterday and asked for an application form for a blue badge. I would get one automatically if I get awarded high rate mobility but I'm not expecting to get that and if I have to go to the appeal system it could be months so I'm going to apply for one now and ask Dr Sam to back me up and have any medicals they want. I could have saved myself a HELL of a lot of walking at the hospital if I could have parked in a disabled space.

Health wise I'm doing a bit better today, quite perky and the pain is a little bit calmer today, I'm still having the backlash from the ridiculous walk to the department at my hospital appointment.


*Here endeth the sarcasm.

Wednesday, 17 March 2010

Forgetfulness is my middle name!

One thing I forgot to mention yesterday was having a fall on Sunday morning in the kitchen.

My legs have got really bad and they have started jerking quite badly. It's like when the doctor hits you with the little rubber hammer on your knee and you kick out. That happened as I was stood in the kitchen and caught me totally off-guard and down I went on to some lovely cold hard tiles. Nice.
I don't seem to have had any bad repercussions from it, no bruising although I did ache for a while after but that seems to have passed.

I just wanted to record it here for my records as my memory is shockingly bad now. I forgot to take my meds all the time so I think I'm going to get one of those weekday pill pot things and leave it on my desk so I can see it clearly and remind myself. My Rheumotolagist said it was important to take the fluoxetine in the morning and I'm supposed to take the amitriptilyne 2 hours before bed.

The benefits thing is still a farce. I just tried to re-apply for ESA now my WTC has finished but they haven't closed down my last claim so now I have to wait for them to do that before I can reapply.
I spoke to my local council about applying for council tax benefit and adjusting my LHA but they want proof my SSP has ended and the ESA people never sent it back to me so I'm chasing that down too. It's just one big sodding vicious circle, I can't do one without the other and can't do the other without one. ARGH

Tuesday, 16 March 2010

Still alive!

I'm so poo at updating this aren't I?

Hopefully updating will be slightly easier now as I just got a wireless keyboard and mouse so when I ache I can move it about and still carry on typing.

A few things to update on, I'll try to be brief so this post isn't massive.

I was denied ESA on the grounds that I was too rich and hadn't contributed enough NI.
That estimation included Working Tax Credit which has now ended as SSP has finished so I have to re-apply again but WTC are being slow with my award notice and I have no idea how much I will be getting from Child Tax Credits and as ESA is means tested I can't apply until I know. I've made to calls to WTC to be told it's in the post and has been since the 5th of March. I rang them again tonight and got really snotty. I don't like doing that because as a rule tax credits have always been good and reliable but with no SSP and no ESA and no WTC I'm starting to panic and I NEED this award notice so my housing benefit can be updated and I can apply for council tax benefit.
My DLA form when off on time but I've yet to hear anything, but I didn't send it until Feb 22nd so no surprises there, I'm not expecting to hear from them for another couple of months or more.
My Rheumatolagist appointment finally happened today after I had to keep cancelling because I've been so unwell (also why I haven't been blogging as much as I'd like to).
He's writing to Dr Sam to put me on Amitriptilyne on a low does to help with sleep and fatigue. He said it works very well with the fluoxetine I'm already taking and if I can get a good (ha!) nights sleep that will in turn help my fatigue, mood and energy levels. He said they can be used as an anti-depressant which I knew about as my mum has been on them for years but in my case they will be used purely for my fatigue and pain, he stressed they aren't sleeping tablets.
The appointment itself was an ordeal, the Rheumatology department was all the way at the back of the hospital and I had to keep stopping to rest and I was in agony and utterly exhausted.
As per usual when I start explaining my symptoms the tears came flowing and I got myself in a right state out of frustration, shame and I was absolutely drained from the walk to the department, it's the furthest I've walked for months.
He's also recommending a course of physiotherapy and the hospital will be writing to me with an appointment in due course. I'm really worried about physiotherapy, I'm worried it's going to make me worse but time will tell on that.

Another worry has appeared on my ever expanding plate. My daughter has been diagnosed with a heart murmur. We don't know why yet, anaemia was a possible cause as she has had it before but her bloods came back normal so she has an appointment with the paediatric cardiologist next week. Charlotte is having episodes of palpitations where her heart suddenly starts beating really fast and hard which makes her go all light headed and dizzy so it's a big concern. She was 'urgently' referred to the hospital, I'm not sure 3 weeks is urgent, but it was the earliest they had, next week can't come soon enough, she and I are both worried about it.

Health wise I'm not so good. Even with Nathan with me I'm staying in because of the sheer effort to get dressed and get out. My pain managment is still not great. I was given codeine to try instead of the tramadol and told I could take the tramadol with it if needed which I've had to do quite a lot and boy oh boy it makes me quite trippy and spaced out.

In other life stuff, on a personal level things are fantastic, I honestly think I would be a gibbering wreck without Nathan, he has been absolutely AMAZING. I crashed only 2 months after meeting him and most blokes would have ran a mile but he is so supportive and comforting and my rock. We're planning on moving in together this year!

Thursday, 4 February 2010

Been a while..

Some of you may have noticed I've not been updating or about on Facebook and Twiter.

Health took a big dive so the desktop has had a wide berth over the past week or so, I'm writing this from my laptop rather than my desktop where I am firmly plumped on the sofa.

I'm now having chronic neck and back pain and my reactions have slowed down. Tramadol still isn't helping either so I'm currently trying to rummage up the energy to go and see Dr Sam again to try some different pain relief.

In better news I had a visit on Monday from the Welfare Advice lady, Jeanine. She was very nice and helpful and flew through my form for me. I got a letter from her this morning as a confirmation and she has written


Given the information you have put on the form I feel you may qualify for high rate mobilty, although they are getting very tough on awarding this level and low or middle rate care. Again, they have tightened up a lot lately on this component. Once you hear about the decision we can talk further  if needed about appeals etc.



So, I've been warned, as I already knew that this is going to be a tough road and I'm fully expecting to have to appeal at tribunal to get what I feel I am entitled to, but the fact that Jeanine thinks I should qualify is a comforting thought atleast.
Jeanine has also recommended I get Dr Sam to fill in part of my DLA form so I called the surgery today and asked if a charge would be applicable and they said it depends on how much he has to fill in (the more the better as far as I'm concerned!) so I'm going to put a covering letter in with the forms as it's really important he explains HOW my ME/CFS affects me, not just the fact I've got it.
The benefits and work website have a downloadable check sheet where you can fill in how each thing affects you like walking, washing, bathing etc so I'll fill one of those in and pop in it with the form. I've already given him one when I last saw him and he gave me the fluoxetine and the tramadol but some things have worsened so I'll do a more up-to-date one.

Speaking of the Fluoxetine, things are going well with that. I have noticed a difference when I wake up in the morning, I'm far from 'wooo hooo, another day!' but I'm most definitely not 'Oh shit, here we go again' like I was before I started taking them. It's hard to describe really. I'm more...accepting? at the moment. Which is a good thing, but it did bring me crashing down again when I was with Jeanine as all I had to think about was what I couldn't do, which is a lot, when I was filling in the forms with her and the tears flowed quite freely, but Jeanine was armed with tissues and words of encouragment so I feel ok again now but it was really upsetting and emotonally and physically drained me for a few days afterwards and it took me those few days to recover but I'm still not quite up to speed.
Jeanine also offered to help me with all my ESA stuff too when it gets to the point when they decide if I go in the work related group (ha!) or the support group. She has strictly told me NOT to fill in any forms without speaking to her first so I shall gladly follow orders.

Work are being a pain in the arse and not sending me payslips so I've had to ring them ah-gain to ask for them. It's like I can feel her rolling her eyes as soon as I say my name but if they'd send them in the first place I wouldn't have to call, would I? I can't claim ESA without them so I'll hound them as much as possible whether they like it or not, I got paid 3 weeks ago from work, I should have had my wageslip.


And this is enough for my hands to handle, they are aching so I shall end this gigantic post here and try and update daily again to save my hands.

Oh, one more thing. I couldn't make my rheumatologist appointment due to ill health so it's been rescheduled to the 17th of Feb.

Friday, 22 January 2010

A bit more helpful!

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.

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!

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.

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.

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!

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.

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.

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.

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!

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.