RA, working, ESA and giving up.... ....

gemmarh100

Hello everyone,

Was hoping to get some friendly advice from you guys as I'm starting to get really down I used to work full-time, but cut my hours coz the job is too exhausting/tiring/painful (nursery nurse), so I now work 2 days (15hrs).

I applied for ESA and PIP in June and haven't heard anything yet :roll: Although I keep hearing of people waiting up to 1 year!!!! to receive a decision!!! :shock:

My dilemma is about money really...I love my job but 2 days is not enough money with no extra support from benefits. Should I work full-time and be in constant pain??? Should I quit my job to live off benefits??? Should I try to change career even though I can do nothing else???

I feel like I am completely stuck and there is no-one I can talk to about it.

Thanx for listening/reading xx

stickywicket

Hi Gemma. This is really a question for the Working Matter s and Benefits forum. I'm not very good on such areas. All I know from being on here is that PIP is getting harder and harder (and taking longer and longer) to get.

I've no idea how you're managing financially on two days per week work but, if working full time in your current job makes your arthritis worse, then it's surely not a good option. I'd be looking for something easier on the joints.

Why not ask our Helpline people for advice? And / or you could try here for a start:

https://nationalcareersservice.direct.gov.uk/Pages/Home.aspx

http://www.scope.org.uk/support/disabled-people/dial/about

dreamdaisy

Hmmm, what a nasty dilemma. I'm with Sticky, working longer hours is only going to exacerbate things (which is why you cut your hours in the first place) and I have not had any dealings with benefits apart from receiving DLA for a few years. I think your best bet is to get in touch with the CAB, they should have the necessary knowledge to advise you, and the Helpline on here will always provide a friendly ear to chat over things. I cannot remember what meds are you taking - :oops: - could it be time for a tweak or two? DD

gemmarh100

Hi,

Thanx both of you for your replies. I know everyone who applied is in the same situation, it just feels like I'm waiting forever, when everyday is a struggle, I reckon it will be at least another 6 months before they make a decision about benefits. :roll:

I am taking Naproxen, Omeprazole, Prednisolone, Sulphasalazine, Hydroxychloroquine, and co-codamol and paracetamol for pain relief. Rheumy recently added Hydroxychloroquine to the list to try to combat the extreme tiredness and fatigue that I'm getting.

And the winter is just around the corner too, so just waiting for everything to get worse

xxx

stickywicket

Did the hydroxy help, Gemma? Or is it too soon to tell?

I'm not surprised you can't manage more than two days as a nursery nurse if you need all those meds just to function. You clearly need some much easier job.

One thing – you mention cocos and paracetamol. I do hope you know that you can only take 8 in 24 hours ie not 8 of each but just one or the other - or a mixture of both as long as you don't go over eight.

gemmarh100

I have only been on Hydroxy for about 1 month so not sure if it's helping yet, as they said it takes a while to kick-in - like everything else :roll:

But I am also wondering if the Suplha is actually helping as I still have very painful days and always so tired. There must be something up... :?:

I can't remember the what it's like NOT to take all those meds, lol. I'm up to 18/day now :shock: I do alternate paracetamol and co-codamol (usually just co-co's at bedtime)

I hate having to think that I may have to leave the career that I love. I have always been in childcare and wouldn't know what else to do....

xxx

dreamdaisy

No matter what the meds we can still get very painful days and can still flare if the disease is not properly under control. Sulph is a DMARD, I think hydroxy is too (I cannot remember :oops: ) whereas the nap is an NSAID and the pred will mask symptoms rather than control them. How long is it before you see your rheumatologist again? DD

stickywicket

I guess you have to give the hydroxy a bit longer. Pain is the continuo of our lives but, if you are permanently tired, maybe the disease is still active. Are your bloods OK? ie you're not anaemic?

gemmarh100

I don't see the Rheumy until end Nov I think...do u think I need to ask for something else? :?:

Recently they always tell me that my bloods are 'fine' and that I should just keep waiting, but I don't feel any better...I have to put my faith in them that they know what they are doing, just hard when nothing has worked yet...

I do wonder if the tiredness, is actually the Arthritis, or if it could be related to something else. I have mentioned it and the Rheumy nurse sent bloods for diabetes, but that's negative...

Thanx for your replies xx

stickywicket

If your bloods are OK then your disease is under control. Unfortunately, it doesn't always feel like that :roll: When you write 'nothing has worked' what exactly do you mean by that? Worked, in what way?

As regards tiredness, are your haemoglobin levels OK on your regular blood tests? You could also ask your GP to check your Vitamin D levels. I don't think you fall into any of the categories of people who require supplements but it's worth checking. And also try to eat high energy foods (Try here http://tinyurl.com/63ypu76 ) and cut out any sugary stuff which gives a quick blast of energy but then leaves you tired.