This year up to now has been a real struggle for me with the M.E. I feel that over all my symptoms have been worse and I have managed getting out less which reduces my quality of life. I have been in a cycle of trying to stick to eating the limited foods that don't appear to make my symptoms worse, then slowly introducing other foods, but after a while I always have to go back to a restricted plant paradox regime - mostly for pain reasons. It is not always apparent which foods cause me pain, but we think maybe it is a slow build up with some foods. The problem being that with my level of exhaustion it is near impossible for me to sustain the plant paradox way of eating for long, mostly due to the sheer amount of work involved in preparing and making the food - I simply cannot do it due to my exhaustion .
So I find myself stuck eating a semi plant paradox diet with pain levels creeping up to unbearable at times ( and quite often this year). Its a hard situation to be in when you know eating a certain diet can reduce pain and other symptoms but not being well enough to make that food, but also not really being sure which foods are exacerbating symptoms. I have asked for a referral to a dietician for help with trying to work out problem foods but that was last year and nothing has happened so will be asking about it at my next GP appointment
I am also experiencing tender swollen glands in my neck more frequently and to a much worse degree for most of this year - it used to be just one but its now mostly 3/4. As well as swelling around my eyes which seems to come and go with no apparent reason, - no signs of infection or allergy, mostly in the area between my eyebrows to eyelids which is odd, this usually accompanies the pain I get across both cheekbones ( this frequently appears to be made worse if I eat certain foods). I frequently wake feeling like I have been punched across the face and neck. Today I have a new symptom of swelling across knuckles in one hand and aching across knuckles in both hands. It feels like my body is reacting badly to something and its not pleasant. On top of all this Ive had what I think may be the start of gout over the last few months too, although my blood tests do not indicate gout, its still possible thats its in early stages, or as my GP thinks possibly arthritis ( it doesnt fit the pattern at all)
 |
Exhaustion levels are very high, and this is made worse by sleeping issues that are common to M.E. Cognitive problems are also a major problem - a half hour conversation can leave me wiped out.
I do think i might have found a CoQ10 that seems to be giving me a little bit of energy, but it has also been causing some stomach issues, Im trying having it with food to see if this helps - fingers crossed.
Now all this may come across as me being very negative, whilst in actual fact I do not dwell on it, I try to occupy myself each day with minimal exertion activities that make me happy, distract me from my symptoms and attempt to be productive ( sometimes to my own detriment). I am simply documenting it here partly as a record for where I am at and for comparison in months or years to come, as my memory is poor - and as a record for raising awareness of what it is like living day to day with M.E. Whilst I have not been managing my trips out to local country parks etc maybe once or twice a month lately, I have occupied myself with getting back into watercolour painting earlier in the year, which has been very enjoyable and therapeutic. I have been reading a lot and watching youtube videos on various topics such as painting or photography as well as meditation videos.
I have been trying to do photography in our dining room - mostly macro, floral or still life, but this is truly exhausting and I struggle to limit myself to only short spells as I get so absorbed in it. I have pushed myself a bit far with it in recent month trying to put together a set of images for a time limited project, but recognised my limitations and pulled back, trying to pace myself better. I have been enjoying zoom webinars with online groups such as camversation and sheclicks - these are a massive positive outcome from the pandemic. I also facetime my daughter more often too.
I have really struggled with nights out ( which was the only time I saw friends) this year for a couple of reasons, firstly the sheer exhaustion just in getting ready for a night out is enough to wipe me out, but on the rare occassion that I make it out I have struggled having conversations with the background noise, and whilst I love seeing bands and enjoy the music so much - it was making me so ill, the impact on my health was not worth how ill I felt in days following, I was getting to see bands and friends but not really having much in the way of meaningful friend contact as I struggled to converse so much in that environment. Added to that my body and brain appear to be having an adverse reaction to alcohol - another thing i think I may have to give up or only have minimal amounts on special occassions if I can find something that does not cause this reaction. As it is I rarely touch alcohol this year. I have managed a weekend away at a bike rally with friends, but did need to rest a lot in our tent. I struggled with the lights and noise at the front of the tent but managed better further back - and found wearing sunglasses helped! It was wonderful to spend some time with friends. We also managed a weekend away with friends and family which again, I spent large parts of it resting in our van/tent, but still had a fantastic time.
With all that serious stuff out of the way I have still managed to make some positives happen this year, as usual with my photography. I have had a few good results and awards - just shows what you can achieve with photography mostly done sat at a table at home.
EDIT - this has been written and updated over a couple of months. Its October now and Im barely managing self care at home, the exhaustion is severe, cognitive functioning is dreadful, the neck gland swelling and eye swelling almost constant. I commenced HRT about a month ago and really feel my body is totally overwhelmed by it - Im hardly out of bed 6-8 hours a day. So will be reviewing it with my GP. I am trying to have a mostly low lectin and low or no dairy diet where possible. But as of this last month or so I feel the M.E. is almost the worst its been in the last 5/6 years. It could be linked to the menopause or HRT, time will tell, but Im very strictly pacing myself.
