Apologies for my absence recently. Things have been up and down and round the houses, and just a bit all over the shop.
M.E. being a fluctuating illness and all that, means that just when you think you know where you are (on the up), the rug is pulled from under your feet (down you go!). When you think, "when will things ever get better?" and all you can see is days in bed or on the sofa ahead of you, all of a sudden you feel weirdly alright and able to potter about doing things. How come I can pace, pace, pace, be fine, fine, fine, then woah have a good day, then soon after feel so ill and in pain?
What's that all about?
I know Pacing theory would say "oh well that was just another boom and bust" and I realise that if you raise your game even just a little bit or that you do one thing out of the ordinary, that you should steel yourself for some pretty solid Post-Exertional Malaise - and expect it to stick around for, oh say, 2 weeks.
Pacing is dull, dull, dull. Its nice to have steady improvement, and sometimes you look back over the long stretch and see how far you have come, compared to where you were. For instance, not so long ago I was able to do a bit of container gardening - nothing heavy, just sowing seeds in little pots, or transplanting seedlings, light weeding, or if my arms and legs are not too heavy, a bit of watering. No digging or lifting or anything. Compared to my bed-and-sofa-and-bed days this is pretty remarkable.
But then a family wedding. Even with good pacing through the day, sitting all the while, taking time out for quiet time, a 2 hour sleep after dinner, etc I end up with severe PEM 3-4 days later. Well, that will be because I managed to dance to a few songs (not good pacing, but who cares).
The following two weeks feature exhaustion prominently. Then bam. Severe pain in my legs. What's this? I don't normally get "pain-pain" (severe aching and stiffness yes, but not severe pain). As I dont have medication for pain, all I could do was keep taking regular doses of paracetamol and asking my husband to rub my legs for me and keep them raised.
This led me to cancelling a special family event I had been looking forward to which would involve me travelling far and being around a lot of other people. I was so torn about this decision but its probably the right one. Lots of tears and bad thoughts followed. Pretty exhausting.
This leads me to a new chaos theory. When things are uncertain and ever-changing, I think what matters most is how you deal with it. Yes I felt sorry for myself yesterday. Yes I feel foolish for dancing at the wedding. Yes I feel foolish for saying I'd be talking about going back to work around the end of this month. Yes I feel foolish for thinking I was on a one-way ticket to imminent full health! Yes I was foolish for "bragging" this to people.
But O.K. thats all done now. Its gone, and I can't say what tomorrow will be like or tonight or any time soon. I'm not going to dwell on the past. Because I think what matters most is adaptability. I'm still working on it. I'm still going through denial and acceptance cycles, boom and bust cycles, predicting and failing cycles, but who cares? Really the key point is that I keep going, cry and laugh now and then, but keep going along this wobbly path, wherever it is going....
Whatever it is going to throw at me, I can handle it. Whatever happens, its alright.
I want to thank my amazing friends and family for looking after me and for the hugs xxxx