Its been a crazy few weeks, following my Grandma's death, arranging the funeral and clearing her house and we have only been involved in a small part of it. The funeral was on Monday, very emotional, but went smoothly and lots of family and friends joined us to say goodbye. June has just passed in a blur and just when we thought we could relax a bit Rob's grandma had a fall and is now awaiting a hip replacement so we will now be visiting and supporting the other side of the family too. Living 40 miles away from family makes it hard and we have to fit everything into the weekends as Rob has to work and Emily go to school. I don't know how people manage that are further from their families. I got quite stressed about being unable to help more and being so far away. I ended up looking at houses to be nearer, but discovered we can't afford to move, or at least not to anywhere where we could be any use. I hate feeling so useless and cut off.
I am just about managing to keep going, mainly running on adrenaline. I do have times when I literally cannot do anything and have to go to bed, then get back to feeling able to manage although feeling quite ill, but I am used to that. Adrenaline is a great pain killer, so I have actually had less pain, but am very stiff and fed up of feeling sick and dizzy and my concentration is non existent. I am sleeping badly and feel cold most of the time, whilst everyone else is saying its too hot!! I am having long term problems with my throat that started about February after a sinus infection and has not cleared up, I have a hospital appointment in 2 weeks, I am just hoping bits worth going and that I don't get fobbed off. The other problem with adrenaline it's that it makes me restless, so although I am exhausted and need to rest I can't sit still. If I try to lie down and rest my heart is pounding. My tinnitus is really bad, so loud and endless, making rest and sleep so difficult, it drives me mad and means even at quieter times I get no peace.
I think craft projects will be on hold until after the school holidays now, although I do hope to get some cards made for August birthdays. There are quilting classes in July and August, but I am not sure I can make them, with end of term activities followed by 6 weeks of school holidays to get through.
Emily has her first Willows session tomorrow. I do hope it helps her, she has been very unsettled. I need to be able to spend some quality time with her, not time when I am doing something else or barely functioning.
I am amazed at the number of views of Michael's story, it has 184 views, my normal view rate is about 20. Its a very good piece and demonstrates very well the difficulties for carers as well as sufferers, especially those with severe ME. Michael also does a lot of work to get recognition of ME and promote research. He is involved with several facebook pages Sheffield ME, Invest in ME, ME Alliance and Honesty about ME
I saw this on facebook, so true
And this, but easier said than done