Friday, 28 February 2014

The fustration of ME overwhelms me

Yesterday was not a great day.  I got up and on autopilot left the house at 7.10am to take DD1 to her school bus, by the time I got back I realised that all was not well and wondered actually how I had managed the driving.  Fortunately nothing major was planned for the day.  Ben and I sat in the office whilst he did his school work, but really all I wanted to do was lie down.  When we'd finished I made him  some lunch and we sat on the sofa for the rest of the afternoon and watched two films.  It was during this time that I struggled.  I watched Ben on the sofa next to me, a healthy 8 year old boy, adopting the position and demeanor of his ill 47 year old mother and just thought this is not right.  For the first time EVER I actually thought he might be better off at school than being home schooled.  This is a sign of how low I had slipped mentally.  There's no way when I'm feeling good that I think that is the right place for him.  At home he is learning well and in advance of his peers in most subjects.  He has good home educated friends who he sees regularly and other outside interests - today he is off at forest school which he wouldn't be able to do if he was at school.  But, some days it is so hard for me.  Not often, but, he is dependant on my energy levels and they are just not reliable.
At 4.40pm I dragged myself off the sofa to take Ben to his swimming lesson, it wasn't far away by car (less than 10 mins) and I thought manageable.  I was glad I took him as it did mean he was at least a little active for that half an hour.  When I arrived at the pool as someone I knew asked how I was  -  just in a friendly hello sort of way - I had to stop myself bursting into tears because I felt so awful.
We made it back to the sofa and more video.  When Ant came in from work he had to cook the dinner, collect DD1 from her bus - which takes 40 mins - put Ben to bed and then go and collect DD2 from her evening activity,  that was his evening gone and that makes me feel worse.
I was in bed by 7pm and slept relatively well until 5.00 this morning.
Today I feel much better, drove to the bus without any problems and although my legs are weak and a little trembly on the stairs I actually feel pretty okay...how can that be????  It is soooooo frustrating!
I do feel that my symptoms are still being exasperated by my menstrual cycle and am looking forward to seeing the endocrinologist to hear her thoughts on the matter.
Today, although still a little tearful, mentally I'm in a much better place, but it just goes to show how easy it is for the mind to follow when the body is weak.  I read something on twitter yesterday that made me smile.  It was a Dr talking about how to tell the difference between someone who is depressed and is fatigued and someone with ME.  If you ask them both "if your energy returned to you right now what would you do?"  the depressed person will say they don't know, but the ME patient will reel off a whole long list of things they are just desperate to get on with.  I have so much I want to do, besides the normal, besides the running of the house and the nurturing of my children there is so much more I want to do.  The truth is, when I have a day like yesterday I don't even have the energy to nurture myself.  Today I have a little energy, so I'm going to start with me and then see if I can reach out.

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