The (not so old) Crocks Cafe -Part 2

Jojo_the_Tightfisted

Good luck! And get them to bring back the Ceridwen's Cauldron bath - it was so relaxing, it was actually worth enlisting the family to heft me in and out of the bath once in a blue moon!


Finally, after weeks of panicking and prevarication and general procrastination, I filled in my DLA renewal today. Couldn't fit even half of the information in the tiny boxes they give, so every page has at least 2 A4 pages of handwritten scribble after it. It took 6 pages to list all medical conditions and the meds/treatment for each. (I do have big handwriting, as I can't manage with little, neat writing and I tried doing it by computer but I even ran out of space there)

I couldn't bear to spend days obsessing about how rubbish I feel, so hit it in one go. Started at 12, finished at 5.

Noticed that I am supposed to guess what they need to hear in relation to personal hygiene in about 12 words. Oh right, so you can only have one issue - when it is such a huge area, it encompasses baths, showers, toothbrushing, turning on taps, not slipping, using towels, reaching parts of your body, brushing your hair, body hair removal, colouring your hair, getting frustrated so you take the kitchen scissors to your head so your waist length tatty hair is now shoulder length tatty hair as you can't physically cope with having your hair pulled around/washed at the hairdressers, putting on makeup, using moisturiser as steroids or other conditions mean your skin is so fragile it splits at the slightest knock, cutting toenails, whether you need encouragement to do any of these, whether you might give up on dental hygiene if one of your conditions means you're going to lose the teeth soon enough whatever you do, likelihood of cutting yourself shaving, that you can't use depilatories because the meds mean your skin is too sensitive, being able to sit/stand/reach to do any of these, blah blah blah....


Well, I refuse to lose the claim on the basis of not having given them enough information. They also got a whole insert explaining how the conditions are interconnected and how a change in one can trigger a chain reaction which ends in my needing even more treatment/help and how certain things are technically unmedicated because the medications prescribed for something else also deal with those, and some trigger problems with others....


They asked if you have problems asking for help. The reply they got included the admission that asking for help feels like failure. And that I worry that if I ask for help, I will be challenged, accused of not being deserving, as everyone believes that people on benefits are all frauds, that there isn't anyone to ask for help anyway, as you can't make friends for fear they will find out about your condition and reject you or think you're a fake, and you can't go out much anyway, as you're exhausted and in pain before you even start.



I have probably screwed it up completely.

Or talked them into submission. :cool:

vivavilla

Hello, hope you don't mind me joining your 'club'! :wave: I've got several ongoing illnesses and can't find any support forums anywhere until I stumbled across this - you all seem so lovely and supporting. I've got Crohns Disease, scleritis, arthritis, underactive thyroid and am being investigated for rheumatoid arthritis at the moment. Things have got much worse recently and I've started to feel very sorry for myself - something which I hate but can't stop. Feel very isolated as well, the Occupational Health dept at my work seem to have washed their hands of me as I seem to be in the 'too difficult' basket and my GP, although lovely, just keeps telling me to see my specialist - trouble is there's more than one that I see and I'm not due to see my rheumy until July (I think he may hold the key to what is wrong!). Anyway, things have got so bad have decided to see if I'm eligible for medical retirement from work - there's no way that I can work at the moment and understandably I think they are losing patience.
Hope you don't mind me droning on but I was hoping that someone perhaps had experience of medical retirement which they could share? If not then it's just nice to know there are others out there in a similar boat and that you're not alone.

Jojo_the_Tightfisted

vivavilla wrote: »

arthritis, underactive thyroid and am being investigated for rheumatoid arthritis at the moment. Things have got much worse recently and I've started to feel very sorry for myself - something which I hate but can't stop.

I'm not due to see my rheumy until July (I think he may hold the key to what is wrong!).

Anyway, things have got so bad have decided to see if I'm eligible for medical retirement from work - there's no way that I can work at the moment and understandably I think they are losing patience.

Hello!

Can't specifically help with medical retirement, but if you were to phone and speak to the rheumatologist's secretary and explain that you are at the point of losing your job if there isn't any progress in the next couple of weeks (allowing for the fact that a lot of consultants are on holiday with their children over Easter), she may be able to ask for your appointment to be brought forward, especially if you are prepared to take a short notice cancellation or sit and wait for the end of a clinic.

Some places keep 'firebreak' weeks where there are as few patient booked as possible, so as to leave spaces for urgent cases and people who need to be brought forward.


But you need to speak to the secretary, as Outpatient appointments will not be able to do anything relating to bringing appointments forward.

Hope that helps even if it isn't what you were asking for!


[BTW, hypothyroid and RA are both known for making people feel exhausted and down, as well as the problems themselves getting you down, so it might be 'just' a normal consequence of needing a different treatment]

vivavilla

Hello and thanks for your quick reply. I spoke to my rheumy's secretary last week who was very nice and has put me down for a cancellation in case one comes in. She also asked me to get my GP to write to them as this would probably speed things up so hopefully I won't have to wait until July.

I've started thyroxine for my thyroid so hopefully I'll start to feel the benefits soon. I think part of the exhaustion is putting on a bright face for everyone - there are only a few people who I can be really honest with about how I feel. Does anyone else feel this way? I'm just convinced that when people ask how you are, they don't really want the truth!:rotfl:

Jojo_the_Tightfisted

vivavilla wrote: »

Hello and thanks for your quick reply. I spoke to my rheumy's secretary last week who was very nice and has put me down for a cancellation in case one comes in. She also asked me to get my GP to write to them as this would probably speed things up so hopefully I won't have to wait until July.

I've started thyroxine for my thyroid so hopefully I'll start to feel the benefits soon. I think part of the exhaustion is putting on a bright face for everyone - there are only a few people who I can be really honest with about how I feel. Does anyone else feel this way? I'm just convinced that when people ask how you are, they don't really want the truth!:rotfl:

Yup! Hence my whinge about the DLA form. Especially as I'm convinced that if I told people the truth, they wouldn't believe me, because they've been told by the government that everyone's a scammer.

mcculloch29

Hello Vivavilla - as well as this lovely forum, I wonder if you've investigated the BBC's Ouch! forums - there are people there who have undergone the process of medical retirement - it's a fantastically helpful forum.
This place is lovely, but Ouch is busier and that means more brains to pick.
I'm very, very, very lucky, I have a job working from home and just one day in an office based environment.

You are right, people want you to say that you are ok.

When I say 'Oh I'm fine - apart from this....' (a wave of my stick) I get met with blank faces. 'This' is crippling arthritis, but I've found it best if I don't even mention it.

So now I just say 'I'm fine, same as always, battling on...' That seems to go down ok.

formaldehyde_perfume

Welcome, vivavilla.

So, yesterday my body decided to completely give up on me for no real reason. I slept for 13 hours straight, and missed my physio-massage despite 3 alarm clocks. I managed to get up out of bed for about 10 minutes and had to go back to bed for another 3 hours. I managed to eat some dinner and again went back to bed but it was one of the awful times where no position, siting or laying, would help, so I decided to get up and by then it was 7:30 and I managed to spend the evening with my mum, which was good.

... Consequently I only had about 3 hours sleep last night but I'm glad I'm up because I have my first ever art therapy session today and that's something I just can't miss. Also, I was basically robbed of my day yesterday so being up early today means I can get the things done I didn't do yesterday, yet still have time to do todays things and rest in between. Hurrah!

LameWolf

Hello all; welcome Vivavilla.

I was granted medical retirement, a decade ago; to be honest, it's so long ago, and I've put all the horrible details from my mind, but I do remember I had to fight for it.

I was working for the MoD (in a civilian capacity); my GP recommended retirement, my rheumy recommended it, as did the Army doctor, (who doubled as occy health for the civilians), and she was known to be a tough cookie who thought everyone was shamming! And still I had to get the union involved - basically, they wanted me to give up and resign, as that way they wouldn't have to pay me a pension.

I do remember having yet another doctor visit me at home in the end; I think she was an independent agent employed by the Civil Service for the purpose; anyways, her report said that I was unfit for any form of work both on mental and physical grounds, and in her opinion, I would never again be able to work.

Sorry I can't be much more help; as I say, it's a long time ago, and the whole process was part of a very unpleasant time of my life (I got divorced not terribly long afterwards) so I've blocked out a lot of it.

And of course Jojo has hit the nail on the head - the gov't has everyone convinced that all benefit claimants are lazy good-for-nothing spongers. (Oops, nearly got on me soapbox there);)

Anyways, I've gone on longer than I intended, so will belt up now.;)

:wave:to everyone else here.

Elle7

Hi everyone. I still read here but don't post often, I think I'm quite boring!

Anyway, just wanted to say good luck for your interview FP, I hope it goes well.

E x

KxMx

Well as much as i'd like a happy ever after to come out of the blue it ain't going to happen without alot more effort and hardship on my part.
So, i'm going to stick my head in the sand for a week, then come up for air and start moving things along. It's the only way I can cope at the moment!