Positives this year - I finally managed to get to a bike rally which was fantastic with great company, Ive managed about 4 portrait photo-shoots this year (with help from my lovely partner) which has been lovely to get back into. Its been lovely to share doing things with my partner, doing new things together and sharing all sorts of experiences - luckily for me we share a few interests. I managed to get to the Beltane fire festival. Ive had a wonderful day trip to the Lake district with a good friend. I celebrated my 50th birthday this year in my favourite pub with lush friends and a fab band playing.
My health has been quite up and down, Ive managed to get out and about more this year than last, which has been heaven, but still paid for it afterwards. I feel lucky that Ive got out to see bands regularly too. There have been times where I dared to think I might be recovering as I was actually managing to get out about 3/4 times a week, but still felt very fatigued and was in pain most days - I still needed 3 or 4 full days of rest every week, but its the closest Ive come to living a near normal life in 11 years. Although at present I am struggling again. Back to being exhausted from washing in the shower and needing to sit a while before drying myself, back to struggling to dry my hair, and evening finding typing on my laptop or my phone tiring. Ive been here before, its feeling like a major crash and Im finding it hard to adjust back to doing literally nothing - nobody wants to sit around doing nothing all day. But Im trying to keep my mind occupied, trying to think positive and hope this wont last long, even though Im terrified that I could be this way for months again.
My plan is to eat super healthy. lots of healthy fruit, veg and protien, avoiding processed foods, gluten, dairy and sugar or anything that could exacerbate this crash/relapse. Take all my supplements and rest lots. Listen to my body for a change.
It may not just be down to M.E this time as my Thyroid levels have been swinging all over the place resulting in Thyroxine dose altered twice. Most of my worsenning symptoms can probably be attributed to the Thyroid problems, but some I can tell the difference and are definately from M.E.
My mind is not working properly at all, Im more forgetful than ever, struggling to think properly and find the right words, Im getting confused or muddled at times and have also been tearful for next to no reason at all. ( Im not depressed - Ive a lot to be grateful for and appreciate a lot in my life, but my brain/mind just isnt working properly and that in itself can be distressing). Plus Ive had some bug causing sinus and throat inflammation with flu like symptoms - not much different to the M.E symptoms but its been a raging sore throat some days, it seems to be clearing up slowly on its own, but minor illnesses often put me back to square one. Frustrating when its summer, beautiful outside and lots of fun activities and event going on that I want to get to.
Not getting out when you live alone is a whole new circumstance, I can just about manage to get ready but Im so exhausted by the time Im ready that I cant walk more than a few steps at a time sometimes. I darent go out alone when like this. A wheelchair could be great but I cant self propel - no energy and have nobody to push me anywhere most days and really really dont want to have to rely on someone to push me anywhere, or put anyone out. An electric wheelchair is out of the question as I cant pay for one. So, Im stuck at home, back to the option of ordering food online despite it costing about twice the price of my local shops. Back to a life spent communicating on the internet until my body is ready to let me do more again. Fingers crossed this is a short crash/relapse as Ive worked so hard on trying to build my stamina and fitness levels just to get out.
And so my invisible illnesses are seriously messing with my life right now. Life has pretty much stopped this last week or so. The difference being this time I have a lovely partner who has kindly driven me to the beach and to an outdoor theatre production. Its kind of hard letting a new partner see you at your worst and learning to negotiate a way forward that doesnt impede his enjoyment or put pressure on him. I keep making the mistake of pushing myself too far so that we can do things together - Im like a kid in a sweetshop, excited that I can share doing things with someone I love. But really he has been amazing, supporting me through a few life changes, an operation, putting up with my craziness :) and sharing so many life experiences together. I feel very lucky to have him in my life.
Lets see how the next week goes healthwise, fingers crossed I will be back to being able to get out again. Blood tests for Thyroid levels and a GP review coming soon.
