OS ways and Poor Health

mardatha

Ah yes, I've got a lot of stuff on the Addisons, just nothing on 16 years of ME. Anyway, will take it as it comes Polly, ty pet xx

pollyanna_26

Mar They will be looking as the Addisons and the effects on you as it's how you cope or not now will be the focus . You qualified for DLA on the grounds of the problems then and if anything on those past forms has relevance now it can be considered .
One important point is either at the time of phoning to trigger the claim or on receipt of the form you will be asked if you would like them to also request your last DLA claim records to be sent across to the Decision Maker . I'm pretty sure in our case it was the initial phone call . The DM will read through that and your form and that can give a fuller picture of your struggles .
I advise everyone to agree to that happening as it does flesh things out .
Night Mar I'm away to my bed .
Someone stop naming these flippin' storms , they're getting too big for their boots now .
See you all tomorrow if I haven't been blown to Oz .
polly x

CurlyTop

Hi everyone

I subscribe to this thread, so read it every day. Lots of interesting information to read.

I have m.e./cfs and fibromyalgia. Had the me/cfs for 11 years and kept saying about fibromyalgia but medics didn't acknowledge until 5 years later. Anyways, I pace myself through the week although these last few months have seen me drop from working 4 days down to 3. I've had to give up my annual travel pass as it's no longer cost effective for me. Only thing is, on the days I don't work, it's difficult getting about due to walking instead of just jumping the bus. I applied for a disabled bus pass about 4 weeks ago and am still waiting to hear how I've gotten on.

I've also been referred to a CBT therapist. Appointment came through after nearly 6 months. My GP has referred me because I don't really want to take stronger medication than I'm on. He hopes that the CBT will help with managing the pain. I've got to keep a diary this week but I'll be honest, I know about boom and bust and pacing myself - I did a rehabilitation course for 6-9 months some 11 years ago. It took me some time to get into the swing of not overdoing stuff and even now, on days when I feel a little brighter, I'll do what we're all guilty of .... too much. Consequently I'll feel the effects for the day or so afterwards. If I'm honest, I'm skeptical of what I can learn as I think I've got a fairly good handle on my condition and have periods of rest at home. Luckily there is just me and DH at home and he is good at making me sit and rest .... sometimes too much ha ha.

I've also been thinking of applying for PIP but have never claimed for anything in my life and am wary of doing so. Not sure I am up to the form filling. I'll have a think.

Thanks for all your help and suggestions on this board. You're all a friendly bunch and very supportive of each other, especially with all the niggles of pain, etc we all seem to be in. Gentle cotton wool hugs to all. xxx

caronc

CurlyTop wrote: »

Hi everyone


I've also been thinking of applying for PIP but have never claimed for anything in my life and am wary of doing so. Not sure I am up to the form filling. I'll have a think.

Thanks for all your help and suggestions on this board. You're all a friendly bunch and very supportive of each other, especially with all the niggles of pain, etc we all seem to be in. Gentle cotton wool hugs to all. xxx

Hi - you're so right about pacing yourself I'm still on a learning curve re this

I very reluctantly applied for PIP just after New Year, I didn't find the form too bad and I had my assessment on Saturday and I couldn't have been treated more nicely and sensitively. I've no idea what the decision will be but the process so far has been quite straightforward. One thing I found helpful was that I wasn't asked loads of information on the initial call just ID stuff, who my primary physcian was and bank details so I didn't feel on the spot so to speak. I'd give it a shot as you'll know us folk with health issues incurr extra costs in sneaky ways so anything that helps financially has to be worth a punt x

[Deleted User]

Improving a bit. Had a decent nights sleep, did not have to get up for the loo.

Managed with OH to change the bed and do a sketchy Monday clean. It will have to do. OH also did poached eggs for lunch, gratin for supper and put in the ingredients for a loaf into the breadmaker, I smelt it cooking and reminded him it needed taking out.

Rained for most of the day although did get the bed linen part dry on the line. I have to work up the energy to iron it later.

pollyanna_26

Welcome Curly Top . CBT can make quite a difference and done well helps you learn coping mechanisms to handle the feeling chronic illness brings . If you've followed along through the posts you'll have seen us discuss feeling frustrated , sad , and missing the life we thought we'd have . Self esteem takes a hammring , exhaustion limits lots of things and sometimse just getting through the days is hard . CBT can give you some tools to challenge the negative feelings . It helped my daughter a great deal - not always but enough to stop and consider if she was being too hard on herself and to see the positives , distract herself and do something small she could do .
I notice you are in Liverpool . We travel quite a distance to both the Royal and Broadgreen Hospitals as our doctor eventually referred her to another trust to access the treatment she needed . I'm not sure about the Royal as that's generally for MRIs , injections under CtT scan and blood monitoring . Broadgreen is where her Rheumatology consultant is . Have you been referred to a pain clinic ? Broadgreen run one which my daughter could attend but she's already under the care of an excellent one in our area .Those clinics are really helpful , they can provide physio , assess appropriate pain relief , some like ours have the use of hospital heated therapy pools which helped her so much apart from the fact she wasn't allowed to swim . That annoyed her but the idea was gentle exercise while the water took the stress off the muscles and joints . Ours have a psychiatric team to work through the impact of pain and limitations on mental wellbeing . You may like to look up information if you haven't heard of pain clinics before .
Anyway nice to see you here and hope this thread may help a little .
polly

pollyanna_26

Csarina good to hear you had a better night , it does make things a bit better .

Caronc I'm looking at you . Pacing ha !! Who washed her hair , changed the bed later and also had be told to turn that green light off and go to bed . I've seen so many various posts ignoring pacing and I hold my hand up including me . One that really struck me was by Doom and Gloom about overtime .Both taking on more hours and having to pretty well fight to get them while you need to find some help to handle you illness could really set you back . I'm not picking you out as we all do things thinking we wont have payback . would you read that post again and imagine that was one of your family do you think that would be a good idea ?

I have not slept since I got up on Sunday morning , that's the flare following all that I needed to on the Friday that seemed to go on for ever . I've refused to crash during the day as that will knock the carefully trained body clock haywire . To be up early enough for stupidly early regular appointments I have to resist nodding off during the day .
As a result of being slightly more tired than usual there will probably be posts by me which mangle or miss out words even more than usual . As they say in Miranda , bear with !!!

polly

caronc

pollyanna_26 wrote: »

Caronc I'm looking at you . Pacing ha !! Who washed her hair , changed the bed later and also had be told to turn that green light off and go to bed . I've seen so many various posts ignoring pacing and I hold my hand up including me .
polly

Guilty as charged m'lud but what pray is this "green light" you speak of? Seriously it's trying to find the fine line between not giving in and overdoing I'm still trying to work out

mardatha

Csarina I haven't ironed anything in ten years. One son "borrowed" the iron when he moved in with his girlfriend and I sort of forgot to buy another one

pollyanna_26

I'm the worst in the world with pacing so don't take any notice . It was just it followed two assessments which also involved travel both days .
It wasn't really late when i spotted that light as I was about to log out . It was more how the heck is she still functioning
I'm hoping LynP and Mar are feeling a bit better now .
Prinzess I agree the worsening of the skin will be down to anxiety and stress . I hope it's a bit better by now . Have you ever had uv light treatment ? It has helped my son on and off during the years the years but his is pretty hard to calm so he's had creams lotions and allsorts .
Talking about the sea I know I could never be more than a short distance away . I've always lived within walking distance although in different places . I love both Scotland and Yorkshire and the lochs , rivers and water falls but grew up on the scent of ozone blowing in and I think it's in my blood .
Hope all is well Cranky .
Candlelight I remember all your posts on the daily when Himself was so ill . You've had your own big battle and your dds pain and suffering to cope with yet you've never stopped holding everyone up whatever you were trying to get through yourself .
You know how much you've meant to both myself and my daughter and many others . I wish there were more like you in the world x
It's horribly cold here now way the coldest night of the winter .
Stay warm and sleep well all .
I can't believe I've been awake since Sunday morning . I'm going to watch the first episode of the final series of Broadchurch now with " my doctor " David Tennant that'll cheer me up .
polly