ME/CFS

Message withdrawn at poster's request.

I'm lying on the bed resting. Before showering to go to hairdressers. So important, couldn't make last 2 appointments. I am going to try driving myself, rarely drive now, low energy, afraid of losing the ability to do so. Not looking for any sympathy. Just explaining the effect it can have on us. In case it's of use.
Sometimes a shower can help circulation and wake you up a bit..

Financial help for some would be appreciated. We don't need it luckily. But it would pay for help in the house for those who do. At present pensioners can only claim Attendance Allowance. Disgraceful.

I can relate to most of the comments.
It's good to know I am not alone in suffering so severely.
I too have had this 25 years. It is indeed the most horrible illness. I have friends who have illnesses considered far more serious who are having much better lives. I too amquite housebound and often spend days in bed not even caring about food. I have other issues which complicates things like heart valve, cervicogenic headache ibs and more. The problem is pills affect other conditions. So I just try a good diet and try to pace. And just mostly use paracetamol.

I'm sceptical about people claiming to help or cure it and it takes a lot of energy to follow the advice. And if their ideas work why has the NHS not adoptedthem..

I too am 76, and feel my very active life was stolen from me. On a good day I do manage a short trip to the shops, but next day is so bad its almost not worth it. Or a 20 min walk round the block. My husband does mostly everything most days.
What makes it all worse is that no one understands. My sister tells me to push through!If people would visit and just stay a half hour it would cheer us up. But how do you tell folk to do that? So I mostly only have my poor long-suffering husband for company. Luckily he has interests and I encourage him to go out.
You seem to have been listened to Cornergran. Most of us aren't. I agree Mindfulness helps.
We are forgotten people.
The only advice I can give is KOKO. Be optimistic. We don't know the future. Acceptance without giving up and finding little things to enjoy..
I pass the time doing puzzles, jigsaws, painting in small spells.
Sending sympathy, love and good wishes to all fellow sufferers.
(I hope this reads OK.).
It took a lot of effort and might be a bit disjointed.

Agree. And that sounds a very sensible approach to me. Although on bad days, sensible deserts me!

Before being properly diagnosed, 34 years ago, I was initially labelled as having ‘yuppie flu’. How insulting. After seeing a rheumatologist snd neurologist who scared me by saying he thought it was MS diagnoses of ME and fibromyalgia followed. To the frustration of medics I refused to call it ME saying it wasn’t ‘me’ - I was more than an illness and was relieved when CFS came along.

It’s an isolating, difficult illness to manage, still not properly understood. So difficult to explain the total lack of energy to others. Head fog is foul. It damaged same relationships with people I thought were friends. My family have been wonderful all through. A qualified nutritionist and kinesiology practitioner hugely helped me. I return to her conclusions when a flare hits and always realise unhelpful food has crept in.

It became clear my body does not tolerate most painkillers. A forward thinking, caring GP sought and won funding for me to attend a specialist clinic and be treated by an NHS consultant qualified in homeopathy. I cried many tears in the consultations, it was the first time I felt my situation was truly understood. Reality or placebo I have no idea, what mattered was I gradually became stronger and in less pain. Of course the NHS doesn’t fund it now, the consultants private clinic beyond my budget since retirement.

I do think it’s such an individual condition that helpful and unhelpful interventions are different for us all. Pacing is second nature to me, I learned that simply speaking takes energy, Mindfulness helps as has medical acupuncture and a host of small techniques. I don’t get angry with it, rather I try to identify what ‘it’ and I need. Sometimes it’s almost make a deal - I plan rest days around any I know will be full.

Does it flare more with age? I’m not sure but I do know at 77 my coping resources are less than they were. We just carry on, don’t we, what else can we do?

I didn't know about hemp seed oil, thanks Skye.
Ishallwearmidnight, I know it gets worse with age, found that out myself this past 3 years (I'm 76 at xmas.) The prospect is not very cheery is it

I have had ME for 30 years, and at 66 am now really struggling. For many years I managed to work part-time, but had to give up about 4 years ago. I am now mainly housebound and often bed bound. I do so wish there was something to help! I keep trying to do little things to improve my mobility and stamina but to be honest every time I take one step forward, I end up going two steps back. I am frustrated, sad and angry. Sending love and solidarity to all those similarly afflicted x

It is expensive, but you can buy some things more cheaply, e g buy Vitamin C powder instead of capsules, and hemp seed oil instead of fish oil capsules. Supplements are cheaper on Amazon.

Fresh unprocessed food is probably helping.

I've got her book and tried the protocol a couple of times but it doesn't work for me and costs the earth if you get all the stuff recommended But the diet etc I copy that.

OP, have you tried Dr Sarah Myhill's protocol? She has helped a lot of people. This is her website.
drmyhill.co.uk/

She has also written a book on ME.
amzn.eu/d/iTKQvRr

I'm so sorry for all of you who have ME.

I collapsed with ME in 1989 and was bedridden for 2years. I have been ill ever since although alternative therapies (including a Candida detox and allergy testing which found I was allergic/intolerant to a number of foods), helped to get me out of bed. I had to give up everything I loved - swimming, dancing, squash, driving long distances, etc etc.

I have never been well enough to work since then, and have had a variety of other illnesses since 1989 including 2 lots of breast cancer, an under-active thyroid, osteoporosis, osteoarthritis, asthma, multiple food allergies and intolerances, Exocrine Pancreatic Insufficiency, Fibromyalgia, Atrial Fibrillation, Superventricular Tachycardia, Sicca Syndrome and Alopecia.

I'm clear of breast cancer now, thankfully, but battle on with all the rest of the list above by pacing myself and by using alternative therapies instead of drugs wherever possible, except for my heart and pancreas problems. Pacing is my friend but I live on my own so often I just have to do basic things in the house.

Out of all the illnesses I have, ME is the very worst and has spoilt my life for the past 36 years.

Take care, everyone. We keep on keeping on.

Cossy

I have both ME and fibromyalgia.

I’m not sure how “severe” it is, I’d describe it as very changeable. If I have a “good” day and push myself to do things I wouldn’t normally tackle, or go out and have some “fun”, almost always pay for it the next day, sometimes not being able to even get out of bed. Thank goodness I have a very understanding DH, and an en-suite bathroom.

My parents always thought I was very lazy and told me so frequently!

Yes fibro too here. And a good hubby but he is quite ill with heart probs and waiting for valve replacement surgery so he is struggling too. Old age seemed to jump out and grab us by the throat, not creep up gradually

I have both ME and fibromyalgia.

I’m not sure how “severe” it is, I’d describe it as very changeable. If I have a “good” day and push myself to do things I wouldn’t normally tackle, or go out and have some “fun”, almost always pay for it the next day, sometimes not being able to even get out of bed. Thank goodness I have a very understanding DH, and an en-suite bathroom.

My parents always thought I was very lazy and told me so frequently!

Squiffy

Same here, letmein. I’m still not very good at pacing myself, even after all these years! Plus, I find it’s so unpredictable from one day to the next in terms of what I can manage. I had a bad relapse earlier this year and am still not back to how I was.

Not much help, I’m afraid! I do find Yoga Nidra is very relaxing, but other than that it seems to be a case of soldiering on!

LOL with me it's more a case of staggering on! But as long as it's on then I suppose it's ok )

Same here, letmein. I’m still not very good at pacing myself, even after all these years! Plus, I find it’s so unpredictable from one day to the next in terms of what I can manage. I had a bad relapse earlier this year and am still not back to how I was.

Not much help, I’m afraid! I do find Yoga Nidra is very relaxing, but other than that it seems to be a case of soldiering on!

Catterygirl

Not severe. I have mild CFS and have learned to pace myself. People think you’re lazy. I do understand ME and realise how challenging it can be.

It's an utterly horrible illness yes. I've had it 25 years, now in my 70s and it seems to have moved up a gear or two. I'm really starting to struggle and wondering if anybody has found anything at all that helps - although that would be a miracle in itself!

Not severe. I have mild CFS and have learned to pace myself. People think you’re lazy. I do understand ME and realise how challenging it can be.