Spoonies thread anyone?

[kinkyfuckery]

There was one on Parents With Disabilities but it hasn't been used in a few months. Any interest?

kinky haha I'm the same. I always got told off at the pain clinic for not taking extra painkillers during the day.
Someone I know (who has experience helping with claims) suggested applying for PIP, but I'm not sure how well I would take it if they turned the claim down. Plus I avoid drs like the plague at the best of times (not doing myself any favours really).

Checking in :) EDSer here.

daisy I've found that if I only turn my alarm off after I take the pills there's less chance if forgetting. I annoy everyone around me though because it's a little loud .

Which bit of the gloves is hurting? I have bad raynauds so have LOADS of different fingerless gloves.

Hi jorah

Hi I have CFS, Pots and a back problem, so have to pace carefully. I just thought I would pop in to say to Kinky that you may - possibly be able to get direct payments to help pay for (a little) childcare which is much more costly for sn children. I get a couple of hours DPs a week for my son age 15 (with LD and autism)), and have done since he was 10. I am allowed to use some of that payment for in house support to help in the home (Ds is extremely messy).Its not a lot but when I was at my worst it helped with survival - and I have slowly got much better and learnt to pace.
Its pretty hard getting help from the disabled childrens team (part of SS) but if your childrens SN fall within their remit it might be worth asking for a carer assessment - which is what I did.
I love my heated blanket and would like a small heated pad

Yes I claim ESA and DLA have neuro conditions effects movement and speech. Just was asking re carers because having strangers in out if your home is different to family carers. I have to hand over most my DLA care to council to pay for it

Gnome the gloves were crocheted by DM, they'd be ok but.. she's made them to fit her hands not mine - mine are so much smaller! I can't ask for a slightly smaller pair as that would cause "issues" The worst bit is at the thumb hole as it rubs. I figured I'd just make a pair.. when I get time! Can you recommend a good pair that I could wear round the house? I have raynauld symptoms but no official diagnosis.

Does anyone do Paleo or Whole 30/90 or the Autoimmune Protocol? I'd be interested in how you find it if you do.

Not sure if this will be much help at this time of year but the best pairs I've got came from Dorothy Perkins. The ones with half a finger (if you get what I mean) are the warmest, but the ones with just one big finger hole are easier to push up your arm if you need to do something gloveless (you don't have to take them off). Also, hotrox is amazing, I would definitely recommend it.

Thanks Gnome I will keep my eye out for those once autumn/winter stock starts to come in.

Well I had my yoga class... I did the stretching exercises then had a break before joining in with exercises while sitting on a chair and finally the deep relaxation session at the end. I was really stiff and didn't/couldn't have the range of movement the other students had (& I was the youngest!). Some of the exercises were painful and I actually found lying on my back at the end really painful. I came away exhausted and achy but no more than usual. I pretty much fell asleep once I got home until this morning but you know what? This morning I actually felt quite good! it didn't last longer than a couple of hours but best I've felt in a long time! Can't judge on one session but I'll keep trying for a few sessions and see how it goes.

I've also started whole 30. I've low carbed for several years but have fallen off the wagon in recent months - it's so easy when I'm tired to reach for carbs and sugar - anyone else find that? But I find I have better control over my weight, less bloating, no spots (I'm a 40 yr old with spots ). I want to see if something in my diet might be aggravating my pain and exhaustion. So I am now back low carb, no processed food, no sugars (except some fruit sugar), no grains and no dairy. Some people go no nightshade as well as apparently that is something that can affect autoimmune and fibro but I haven't got my head round that yet! I will let you know if I feel any different!

Is anyone still around? How are you doing?

We've had visitors for a few days - well meaning visitors but hard work visitors - and I'm absolutely shattered still 5 days later. DH is taking the DC away Sat am to Sun aft so I'm getting a few hours of resting time - bliss!

How are people affected by the budget? We will be just over 1k worse off as DH's income finally hits the level to lose TC.. on one hand I'm kind of glad we won't have the TC worry hanging over us (worry of overpayments and forms etc) but equally I'm still a little worried that we will be told as we are told every year "you owe us £x" and how we are going to be able to pay it. We had the renewal form through the other day and despite my contacting them in January when DHs job changed..... they've still got the figures wrong (yet correct on the form they sent us back in January)... I don't hold out much hope for it all to be sorted nice and easily I wish I could be well enough to have a part-time job but I might manage 2-3 hours and then be in bed the rest of the week....

Still here, just shattered! Sleep has been particularly awful the last couple of weeks and I always do worse in hotter weather. I have something else that causes headaches and they've been particularly bad lately.

Budget didn't really affect me too much. I've been in the overpayment hell before though so you have my sympathies!

I'm lucky in that my job is pretty much just desk based. Access to work also got me better equipment (chair/IT etc) which helped a lot. I work sooooo slowly though and I do worry about that.