Next week I will be in hospital for five days under the care of my neurologist. A care week, in a way, in which I hope to receive some physiotherapy support and a look at why my right hand and arm are tingling and loosing its power. Why my heart is doing funny jumps, etc. etc.
I have had these 'support weeks' in the past. Sometimes they are immensely useful to get a chance to have the many symptoms associated with M.E. looked at.
I have had MRI scans, meetings with OT, muscle testing, physiotherapy, etc. But also a meeting with the liaison officer for unexplained neurological illness which truthfully broke my heart. The psychiatrist whom I met afterward deemed me of sound mind, but it all took a huge amount of energy. Which is something I don't have to spare...
The last time, two years ago, I was under the care of my neurologist's colleague, as my own neurologist was on holidays. I was there to have the intense back pain looked at. I could no longer sit for any longer than a few minutes, due to pain at the tailbone area. And the lump on my back was causing me a lot of grieve. The doctor in charge tried very hard to convince me that it was all in my head. I was given lectures about endorphins:
and that I was perceiving pain that was not there. That I don't have enough positive hormones.... GRRRRRR.
The pain arises from activities I LIKE to do, like writing, and weaving, and sculpting, and gardening... They give me huge pleasures. AND pain.
This time I am going will be going in armed with the documentation compiled by Joan et all, for the Millions Missing Protest. It is brilliant. Clear. To the point.
I will read it every day over the next few days and bring a few copies of the text with me. And hand it to anyone who will try to tell me that it is all in my head or dismisses the diagnosis of M.E.
So, yes.I am tired. I am worried. And yet I hope that the week will be a good and positive week.
I am planning to go in with an open mind, and trust that my neurologist did put a plan in place, like he promised to do. So no wasted days, and no frustration.
I hope that I can somehow use this week to build up some energy and have some rest too, as the following weeks will have an intensity of a different kind.
The family reunion is coming up in Holland.
It means a lot of travel. Staying in four different locations in eleven days. For one weekend being in a house with 30 people. It makes me anxious to think of it all.
But I have put the best self-care-plan in place.
Trust that all will be well over the coming weeks, and that I actually enjoy that big family event.
So for today, and the coming days, I will have a holiday in my garden.
I will sleep in my greenhouse and take adventure to my front garden.
Sitting there always makes me feel as if I am on holidays.
The view is so different from my back garden - a walled in garden. The view is so much wider. and Further. It has a different energy!
I will bring a book, and a snack, and just BE.
See you soon
Further reading and links