Myalgic Encephalopathy (M.E.), DLA & debt

hjb123 ~ Thanks for your post, can I ask what websites you're a member of? I guess you're maybe not allowed to post them on MSE, not sure how this works, but maybe you can PM me them?

That is so true about people only seeing you on a good day - if they saw me with "bed hair" they'd certainly understand the severity of the situation, believe me ! The other thing is that sometimes I can feel terrible first thing, tell people I'm not feeling well when they ask what's wrong, but 2 hours later I can be feeling/acting fine since I've just got really stressed over something and am riding on an adrenaline buzz. But they'll not see me that night when I'm struggling to have the energy to eat my dinner / lift my knife and fork.

A wii fit sounds like a good plan, I've never used one though I have played with a friend's wii console once or twice in the past. I really thought that if you got IB that DLA was a given? And your parents should be entitled to Carers Support as well since you live with them?

It's a shame about the job, but your health is definitely more important, you will get there do you know if anything specific caused the relapse or just doing too much in general?

robpw2 ~ Thanks, I guess I know that deep down, it's just hard to convince myself of it some days ... it's like on a bad day I can't believe I ever had energy, and on a good day I can't believe I was ever so ill! :rolleyes:

bails ~ Hey, thanks for the hugs and for popping over tis muchly appreciated. The CAB is a great idea, I never thought of that, the form is v. scary - the last one I did was about 24 sides of A4 and took me 3 months to write as could only formulate my thoughts on a good day! I will check into Action for M.E. too.

Hmm I guess that's the million dollar question - which will help more? I guess there must be answer to it :rolleyes: I mean at some level I guess I know that if I give up the OT it will help, but will then push up my worries over the workload in my job right now and also money worries. So perhaps there's an in-between, do some OT but not so much? Or do OT but come home first and sit on the couch to do emails?! (sure my BF would love that, me taking up his precious TV-watching couch :rolleyes: hehe!)

The debt is £3836.55 (not that I know the figure down to the last penny ) of which my CC is the biggest issue (this is the "target debt" in my sig). The 0% deal runs out in June '09 and if I can't get another CC deal this would cost me a lot in interest - now I don't have a bad credit rating, but I worry nonetheless. The other 2 debts are re-payments on our sofa (£433.54 to go for my half as I slightly over-paid one month when things were tight for my BF, £925.54 in total for the whole debt for both of us) and money I owe my family which is now at £915.

I guess I could look into getting the debt frozen but I am not sure how this would work and I'd be worried about the effect of it on my finances e.g. in a few years I want to buy a house (once debts are gone and deposit saved up) - I don't want to put myself in a position where I can't get a mortgage. I am only paying min. payments just now which are £25 to CC, £26.41 to sofa, £5 to family (per month) as there is no point in over-paying (all debt is at 0% right now) but as you can see from my sig I am also saving up the money I would have used to over-pay the debt.

Thanks for your post and the support, that all makes a lot of sense, I may take you up on the PM xx

Gemmzie ~ Sorry, I have no idea what Working Tax Credits are? (I guess that answers whether I'm getting them or not hey :rolleyes: ?!)

Mumstheword ~ Thanks for sharing your story wow that's horrible what your employers did, can't you get a second opinion on the PHI ins doctor's decision, that doesn't sound fair at all! Can your local CAB give you some help with the IB? If you're not fit to work you're entitled to get this... I know what you're saying about the effort and hassle required to claim though... it's crazy really, even a healthy person would struggle to get through the sheer amount of paperwork and questions, so how do they expect anyone with severe health issues to do it?!

You're right about them finding it difficult to understand it because there's no outward sign ... sometimes I wish it came with a rash / purple hair / something! :rotfl: Oh and re benefits cheats, I do think it's wrong for people to do that, and if I knew someone was doing it I would give them fair warning e.g. stop it now or I'll shop you... if in a month they hadn't done it then I would have to call and report them. Thankfully all my friends are very honest (and lots healthier than me!) so I don't have to worry about it !

But that said when my parents got divorced my Mum had some type of benefits (it wasn't health related, might have been JSA or something? I really can't remember, I was 13 at the time lol) but yes anyway someone called and reported her (even though she was genuinely claiming whatever it was, and wasn't doing anything wrong!) and they stopped our payment without even calling to pre-warn us. It was at the end of the month so we had next to no food in and then had no money to buy more - we had peanuts, baked beans on toast and crisps left in the house! It was a weird dinner and the only time I ate in the next few days (til it all got sorted out) was by going round to friends' houses and scrounging a meal - tres embarassing when you're trying to be a "cool" teenager! :rotfl:

maytaurus ~ So true, that made me laugh, thankyou! :rotfl:

seven-day-weekend ~ Exactly, but why is it so difficult for people to understand?! It's so frustrating and I know they don't do it on purpose but still... ! It makes it very lonely and I don't know about anyone else but it makes me second guess myself all the time

RLS sounds horrible and I do know the feeling of not wanting to say anything much about it because it's not as bad as it could be or "other people have it worse". Do try and get some support though - just think, as an analogy, just because some people have broken arms doesn't mean you can't get medical help for a fractured arm

Thing is though even a good night for you only adds up to 5.5 hours (or 6.5 if you did manage to get that extra hour!). That's still really low compared to "most people" so no wonder it affects you so much if that is a good night!

Thanks for your post, good to know there are other people out there who understand

Wow that took longer to reply to everyone than I expected! Phew !!

Just wanted to say thanks again to everyone for your support :A , it means a lot, I guess I just need to think again about different ways I can still get to my goals without over-doing it...

A lot of these would involve my work being supportive e.g. I could probably do a lot more OT if I could work from home every so often (just now I only work from home if I physically can't make it into work) e.g. every week or two ... giving me a lighter laptop so I can actually take it to/from work without being in pain (which I am at the moment)... etc.

I have my driving test in a few weeks too, so if I pass, that could really help too as I won't need to walk! *crosses fingers*

My boss is a really great guy who I have a lot of respect for - for example he knows that I'm seeing a psych and has never once judged me for it or been anything but helpful and supportive (e.g. the first 4 appointments had to be in the working day before I could get moved to an evening time slot, I worked OT to make up for the lost time, but he was flexible and didn't tell anyone where I was going - he just said "doc's appointment" when people asked him!!). He does know I have a health condition and that mornings are bad for me (he even moved my working day back half an hour so I can now start at 9am not 8.30am!).

But I haven't specifically told him about the M.E. because it has such a lot of stigma attached to it and I don't want to be judged for it - and I'd need to explain it a lot more to ask for anything different to what I have now! As I say I have a lot of respect for him and I wouldn't want him to look at me in a different light.

Or of course I could just put the debt re-paying onto a lower priority, and focus on getting lots of rest alongside a balanced/gentle exercise and good diet.

I guess the main reason the debt bothers me is because I see it as stopping me saving to buy a house and stopping me reducing my working hours in order to start running my own business. I couldn't really justify doing either of these things whilst I still have debts to pay back, it just doesn't make financial sense.

Hmm, I will have a think, any/all ideas from anyone are very welcome :A xx