Is there anyone else around who has/ had ME/ CFS?

[meandthomas]

I was diagnosed 5 years ago. Over the last 18months its flared up again and I feel so exhausted and isolated.
Im a single parent and at uni full time which probably doesnt help much but I need to be able to support my ds.
I didnt tell tutors at uni because I thought it'd all be ok..Its not!

Is there anyone around who has been there?

how awful for you, i havent been there but have cared for a lady with ME and she said its very hard. i dont think she works though but she is on her own with a dd. i hope you work something out. is there anyway you could get a carer in? contact ss?

maybe if you have a word with the uni they could let you work from home? i dont really know just didnt want to leave you unanswered.

hi "me". i suffered from CFS a few years ago which is pretty under control now. The only thing that worked for me was acupuncture, and it made an instant difference. I paid privately, but some GPs will now refer on NHS. frankly it was worth every penny!

You should def tell the uni - it is a disability and you need support and adjustments.

Its frustrating, I feel well in myself. My body just wont keep up! lol. It doesnt feel like a proper disability as such, just a hurdle and a hindrance.

Thanks for the suggestion about acupuncture. Was it expensive?

Its frustrating, I feel well in myself. My body just wont keep up! lol. It doesnt feel like a proper disability as such, just a hurdle and a hindrance.

Thanks for the suggestion about acupuncture. Was it expensive?

meandthomas - I have acupunture for migraines, it's about £30 a sesion.

I'm also an OT and 2 of my close friends have ME. Both are getting better and what has worked for them is learning how to pace and grade activity. They both have to work to quite rigid schedules but notice a difference in their energy levels if they slip. Another bigpart of their gradual recovery is taking part in a prescribed excercise program which is very carefully tailored to their needs.

Do you have a specialist ME service in your area? If not I'd be happy to provide you with more detail about the sorts of things OTs do with ME patients. Also your uni should have a disability officer who may be able to help you and put you in touch with local support. I know you also said it doesn't feel like a 'proper' disability - it is, it's an illness you'd choose not to have if you could and it impacts on your day to day life making you less able to take part in the things you'd like to. If you can reconcile with yourself that it is real you will feel you have a valid reason to ask for help and it will be easier to do so.

Can I ask what you're studying and how old your DS is?

I was diagnosed with ME whilst at college, suffered pretty much right up until I got pregnant.
Had the occasional relapse, like I have never felt before in my life. How are you coping now, any better?

My Ds is nearly 3. Im doing applied arts at uni.
Im very good about managing everything usually with routine etc. It just panics me when I feel bad because there is no-one at home to give me support.

I will go to uni next week and speak to someone.

Thanks for your support