Chronic Fatigue Syndrome/M.E. Society

Hiya,

I hope this is okay to post on here.

I am currently doing my dissertation on representations of ME/CFS and how well they reflect the lived experience of ME/CFS.

If anyone would be willing to share a little bit about their experience and answer a few questions on representations they may have (or have not) seen, it would be greatly appreciated!

Please PM me if you are interested

Thank you

Hiya, hope everyone's ok.

I was diagnosed a few months ago and lately I've been feeling more tired than other, digestion isn't great and the pain is getting unbearable now. I'm worried I'll be in a wheelchair soon, standing and walking is draining and I fall and need to rest. I hoped it wouldn't come to this.

I'm so tired and my brain is so foggy all the time.
I'm feeling a bit lonely as no one else I know suffers from this so thought I'd join online.

Pigtails x

Hiya, hope everyone's ok.

I was diagnosed a few months ago and lately I've been feeling more tired than other, digestion isn't great and the pain is getting unbearable now. I'm worried I'll be in a wheelchair soon, standing and walking is draining and I fall and need to rest. I hoped it wouldn't come to this.

I'm so tired and my brain is so foggy all the time.
I'm feeling a bit lonely as no one else I know suffers from this so thought I'd join online.

Pigtails x

Hey, sorry to hear that you're going through such a rough time with it at the moment. I have "flare ups" with my ME, so it might just be that you're having a flare up, and things might settle down. I'd really try not to stress about needing a wheelchair, because you don't know if that'll happen or not. Are you getting any support for your ME?

Good evening, sorry to hear you are feeling poorly. I know someone with CFS & these are the actions they have taken.
- No sugary foods
- No caffeine
- No gluten. The carbs with each meal are various forms of potatoes/chips and white or brown rice. He can tolerate gluten free pasta but not gluten free bread.
- salmon or non-processed meat twice a day,
- frequent snacks eg avocado or spoon of peanut butter,
- lots of vegetables (often roasted in olive oil)
- he also has an intolerance to dairy so avoids it but this is a useful food group so do not avoid it without a really good diet
- drink water or camomile tea
- do you have any allergies? If there is suspected leaky gut an anti-histamine can help.
- plan rests throughout the day especially after meals.

Please don't feel alone with this. It is more common than people know.

Concentrate on good nutrition and rest. Are you living with family? Do you have someone to help with all the cooking?

Hi thanks for replying and so sorry to hear about your ME situation. Hopefully today is a good day for you? I try and take it each day as it comes and don't do to much or I'll pay for it later on. I have family round me which is nice and supportive but I do feel a bit of a burden to them now. Just wish it would go away and leave me alone but ME is constant it's exhausting.

No problem. I'm doing okay today so far. How are you doing today? It's great your family are supportive. I can understand why you'd feel like a burden but it sounds like they really care about you and it's their choice to support you. I'd be surprised if they saw you as a burden. Have you got any support from the NHS? Not sure where you are but where I am there's a ME team and they provided support to me to help manage my condition

Good to hear you are doing ok. I'm ok thanks for asking, just tired quite dizzy but I usually am think it's the effect after long day. I think feeling a burden is just me, I just wish they didn't have to do so much. Do you have family or someone to look after you? I hope you don't have to go through everything on your own. I've got some support from NHS and have frequent home visits to check I'm ok which is fab. Your ME team sounds great I'm glad you have that support around you.