The ten day holiday in North East England was great. I really enjoyed it. It was great to spend time with Growler and have a break from the old routine. (I took LOTS of photos which you can see here)
What was brilliant (and quite amazing) was I managed to get up before lunch every day for ten days. More than that I went out somewhere 7 days straight and a total of 9 days out of the 10! OK so we’re talking managing any long hikes or excitement – everything was still moderated and planned within energy/health levels. But still that’s the first time in about 2 years I can claim that level of doing stuff.
I also knew and could feel that I was pushing myself harder than normal. Not crazy levels of pushing but pushing all the same. It was a calculated (well guestimated) risk.
Sure enough I was pretty wiped when we got home but recovery seemed easier (quicker) than 6 months ago. This week I got my period which always adds to the weariness and so I find myself back in bed until mid afternoon today, staying in my pyjamas, not having a wash every day and walking on the edge of a headache or migraine with my glands in my neck throbbing like the early days.
On holiday I slept pretty well, mananging to get off to sleep like old times most nights and those that took a little longer were still better than I’ve experienced this last 6 months. Back at home and the difficulty dropping off to sleep has returned. We’ve a few theories but still working on that one.
All of that said I am not gloomy and things are pretty OK. I’m close to finishing my second painting (acrylic on canvas) since I returned from holiday thanks to shaking up my routine and diverting more time to offline activities. I guess the hours of painting are also a contribing factor to my current wiped out feelings today.
I’m hoping that my ME is improving a little and I am least headed back to levels of function previous to the last 2 viruses I had (Christmas 2007 and summer 2007) which lasted for months and seemed to set me back a long way. As ever with this illness though it’s taking things a little at a time, pacing and moderating and planning and trying to lead a simple life.
I tell you I’m feeling horrible, yet I also say I may be improving and I see how these things sound at odds to each other. But it’s not always about dramatic improvement or even improvement measured by a non-ME standard.
On Sunday I went to an art gallery (in a wheelchair pushed by Growler) and saw wonderful photographs (by Ansell Adams) which made me think and feel and question. Then we went to my mothers and I sat and talked for over an hour before my words started to get mixed up or trapped into a stuttering loop. While that sounds pretty awful I am remembering when I couldn’t have done even this much. I remember when just a conversation (without any outing or other stimulation) would leave me fumbling with speech and struggling to comprehend from the first sentence. So to me – all of this is progress and a joy.