Is there any point applying? (PIP)

[CFSParent]

I'm sorry for putting this here, I couldn't find the health and my head is spinning (literally) so much I just couldn't look for it.

I'm going to try and give as much info about my situation as possible so I don't drip feed, but apologies if I leave something important out or put in something that isn't relevant.

I'm 25 years old. I have 2 children 16 months and 2.5. In October I am starting an OU course, I also have a home business making and decorating occasion cakes. In January dd1 will be eligible for 15 hours nursery and I intend on using them

12 months ago I was finally diagnosed with CFS/ME, I have good days and bad days, good weeks and bad weeks. The OU course was applied for when I was having a really good run back in April/May time.

Today is a bad day, I've been having this bad day for weeks now and I'm starting to feel really down about it all. The dds haven't left the house since Monday, when I had a psychotherapy appointment, and I've been paying for that appointment all week. It feels like a vicious cycle of going to therapy, crashing because I've done too much, spending the whole week recovering, then going to therapy again. Today is the first day dds have got dressed since Monday I'm struggling, really struggling and I don't know what to do about it.

This week I have managed to hoover our bedroom but that's it. Dh has kept on top of the kitchen and has given the bathrooms a quick once over, but her works long hours often coming home after the dds are in bed so cant really get a hoover out at that time (or he would)

I'm down at the drs sugery as havign depression, but I dont take any antidepressants (I discussed it with my psychotherapist and decided not to take them - I was pg at the time - I was having a good run)

I feel so fuzzy and foggy I can barely move. When I walk up or down the stairs I feel dizzy and have to sit down (I'm 5.4 and 8 stone 13 so its not because I'm big or unfit)

I cant keep going like this. I'm being a crap parent and every time I have an ounce of energy its spent doing a load of washing, ironing or hovering, which I then pay for in the week

I'm wondering if its worth applying for PIP. I know there are a lot worse off than me but I'm thinking that both children should be in childcare as I'm just doing a crap job at bringing them up. But then there is another part of me that knows this is a bad period and I have to ride it out and maybe in 2 weeks or 6 weeks or I don't know 2 months time I'll be having a good patch again and able to play with them more. At the moment I'm considering pulling out of the OU course as I just dont have the energy and closing the business, despite only just getting off the ground. I just want to cry all the time and dont know what to do

Is there any point? will I just be turned down because its not a 'real' illness. Please help mumsnet, what should I do?

Hi,

Just to let you know this has been moved.

All the best, CFSParent.

Thanks JulieMumsnet

Hello, didn't want your post to go unanswered. There is a thread with others (some also struggling with the demands of young children) with long term fatiguing and painful conditions such as CFS, if you would like to join us. people there may be able to answer your questions far better than I can.

As to applying for a PIP I cannot answer. However I believe the first thing to do is to ask for an assessment (possibly a carers assessment) from the disabled adults team at social services. If it is a carers assessment the needs of the cared for children are looked at in a 'child in need' approach. Children do not yet get a PIP but direct payments may be available for childcare. There are other things they might help you with - such as OT aids or a wheel chair if you need them etc. I have to say it is difficult to get any help at all, so it is best to know what help you most need!! I got a carers assessment (I have CFS too but also lung and heart problems which are more easily understood) because I have a disabled child (13) who needs a lot of active support and activities that I cannot do. He now gets 12 nights a year respite which he loves and helps with his independance from me -and means I get to sleep all night long- bliss!

There are other sources of support for mothers of very young children, but I cannot remember the names! Hopefully it will jog others without CFS fog to post - or perhaps the health visitor can help.

I am well aware that CFS is an unfortunate diagnosis in that few professionals (from doctors to DLA assessors) understand how disabling living with it can be , so getting support is more difficult than it ought to be. Also CFS can vary so much, not just from person to person but from day to day and year to year so is not considered a permanent disability. Disabled living allowance is there to help disabled people pay for the extra costs of living with a disability but is difficult to get for CFS since it can be so variable and usually improves with time.

Do you have a CFS team locally? From other peoples accounts they vary a lot but some are very helpful, teaching people to pace their energy and work towards getting less ill. I had to wait a couple of years before I got to see out local team but am now much more able than I was -although not up to running around after two small children I do feel for you!