My ME episodes are getting more frequent

[Daboban]

My ME makes me just want to sit on the couch, the fog makes driving a bit insecure and working out simple problems or sums a lengthy process. My memory is getting worse,names where I put things I spend a lot of time trying to find things and that is frustrating. My energy levels are extremely low and I sleep a lot. Is there anything I can do or get to help this.

[murtoz]

Hi Daboban, sorry to hear you are struggling! The only thing that really works for me is pacing. Limit how many things you do. Rest frequently. Don't try to push to get something done.

Basically your body is telling you to slow down. Hugely frustrating but really the only way to prevent the bad moments. The other thing I do is muscle relaxation excercises (similar to yoga nidra) whichs sometimes can make me feel better. Have you spoken to your GP about your worsening symptoms?

[Daboban in reply to murtoz]

Hi. No I have not spoken to my GP,the main reason being I find it impossible to get an appointment. I have had a routine consultation with the local medical doctor and am waiting on a 24hr ecg monitor that was 7 months ago.Many thanks for your interest.

[geordie_69]

Hi Daboban, sorry to hear your situation. Definitely try to discuss with your doctor. Challenging to get an appointment but I'd say important. A few times I headed near to suicidal feelings and we really need discussions well before then when we recognise that things are not right in head and body.

Also 2 other suggestions. Firstly try to get outside on a morning. Wrap up well fresh air and daylight. I found lockdown was bad for me, as I rarely went out and everything dipped. I try to get out and it really helps, as many with fatigue also have SAD syndrome.

Secondly try to contact a local cfs or me group. They sometimes meet, but even a chat on a phone with someone who understands can help.

Best wishes

Angus

[Troilus]

It is so long since you posted this, I doubt you will see this.Your body is telling you to rest. So that is what you do.

I was in your situation, I couldn’t divide by 10. - and was absolutely amazed at how quickly my husband could do it. I considered it a achievement if I could stay up all day!

Listening to my body was the best advise my GP ever gave me. Make a note of your symptoms, when you get them - looking for cause and effect. What is the first symptom you get? Then reduce your activity down to the point where you do not experience symptoms. For me, my base line was 2 mins dusting. It’s about controlling your activity in order to give your body the chance it needs to get on with the job of repairing itself.

I thought of it of having a monster inside me. I had to make sure I didn’t wake it, so do things in short blasts so it doesn’t notice, if you feel it stir, stop until it goes to sleep again. Stupid analogy I know, but works for pacing.

Rest, rest, rest.

Hope you start to feel a little better each week

[PaigeyPaigeForLife]

Daboban, I struggle with driving and sitting up for me is a real struggle as I feel dizzy feeling most times when I do. I just have limit how much I do, I feel tired making my bed or even taking a bath so its Club Bed for me most days. Concentration is a problem and memory lost is becoming frequent, my pcp put me on some supplement but they haven't made a difference.

So rest as much as you can and limit what you do, it can be frustrating because you want to be apart oc your life so find things to occupy your time, I have games, book on my iPad when I can. When I have a really good day I go outside for a walk to get some fresh air.