@kayelle Oh you did get a difficult start to life. Glandular fever is a very common start to ME/CFS unfortunately.
I hope you are managing to avoid pushing yourself too hard, even if those unpacked boxes are sitting there staring at you accusingly!
@river My window of comfortable temperatures is a very skinny window, thanks ME/CFS 😠 .
I have to be careful in the cold, because if I get cold all the way through it can take days to recover. But now I know that I can avoid getting cold through with layers of warm clothing, ugg boots, generous use of the heater, hot drinks bath, heat bags and hot water bottles. I manage it pretty well.
Heat is the real killer for me. I wilt and I can't do anything. Summer is the season I fear. My home is pretty good, no a/c but double brick so it takes a few days to heat up. Come a heatwave and I am really in trouble.
I do perk up okay once I get cool, but because I seem to have no blood pressure at all, once I am hot I can't easily get up and go somewhere cool.
I haven't found anything very helpful, just waiting for the day they install a/c here (and that I get a car with working a/c). I do my best with a tepid bath, wet cloths, cool drinks, and slices of watermelon, and staying as horizontal as I can.
I'd happily move to Tasmania!
I hope you can work out how to keep your precious brain cool this summer.
@JustChilling Hi! Thanks for your advise and interest. I think I’ve developed another syndrome, called Doctor’s Reluctance Syndrome. (My idea for its name, sorry). After so long with CFS I think I’ve reached a point where I don’t want to even discuss it with my GP. I would actually feel uncomfortable about it. And she never asks. I can just see me asking my GP for the OI test and her giving me a strange look, and asking why etc. yes I know I could change my GP but I haven’t the energy to start again. And the idea of starting a new medication is a no go zone. I’m just sitting back waiting for the researchers to finally give us the answer, hopefully in my lifetime.
@gretch I'm on 4.5mg LDN per day and have noticed a marked difference in my cognitive function for short periods of time. No real difference in fatigue levels or how long I can manage to work physically or mentally before I need to rest but my brain functions better for that period of time.
I think it's worth talking to your GP about trying LDN and seeing if it helps you, as with most ME/CFS treatments results will vary from person to person. 🙂
These responses are so valuable and much appreciated. I am on the cusp of diagnosis (I hope) many years after first looking for answers and going through so many tests and investigations. Mental health has been a huge confounder also. My trickiest issue I think will be trying to help my family to lower their expectations of my capacity in our future plans, accepting that rest is the way to go and exercise is not the answer. (Edited to remove some potentially identifying info). Thank you all for sharing your experiences.
I wish someone told me, every time you push through PEM, your battery (energy) may not ever be as full as before 💙💜💚
Speaking of covid. I'm having a flareup of my chronic bronchitis. It gives me a permanent tickle in my chest and dry cough and might be worsened by reflux or allergies. These flares always give me covid anxiety (the symptom conveniently started when the pandemic did 🙄) but it's particularly bad today, maybe the worst it's ever been, which is making the covid anxiety all the worse. Last time I had a bad flare I got a covid test which was negative, so I'm fairly confident I know these symptoms and its just a chronic illness/autoimmune thing but I still hate it and wish I had access to a RAT to put my mind at ease.
@gretch@KayElle I actually just wrote 2 blog posts on the topic of energy debt and rest the other day which I think you've neatly summarised in your comments! Calling it something other than rest is a good idea
Hi everyone! I've seen a new booked talked about a bit on Instagram lately, and shared by one or two people with ME. It's called Cook as You Are by Ruby Tandoh (I think she won one of the British Bake offs). The idea is that it's an accessible cook book - there are lots of adaptations for all sorts of needs - energy, cost, sensory etc. Perfect for us! (Well anyone who is able to do a bit of their own cooking 🙂 or it might help carers who are time poor!)
Thought it was such a different approach and something that would be great to see more of. This is an Amazon link which has a few reviews and Google Books has a preview of quite a few pages.