Warm weather but stuck indoors: Yep we finally have left the cold weather and the sun is shining.
I used to love the warm days, after all my pain is generally lower but now I actually prefer the cold and wet months!
Today it’s warm, my daughter and the grandchildren are over and they are playing in the garden. Meanwhile I am sat indoors on the settee unable to get outside.
We are lucky to have a nice large garden but to get outside is quite a lot of effort and like an assault course.
The bottom of the patio doors are about four inches high on the inside and its eight inches on the outside. The patio is on three levels and they are not that deep, it’s really like three large steps about three feet then down.
Last week I did bum shuffle out, it’s very painful and after an hour I felt unwell from the effort of getting out but I had run out of energy. This isn’t your usual tired lack of energy, this is totally flat, nothing left.
It took me 45 minutes to get up the steps, resting on each one and the final push to get over the threshold that at only two inches wide is very painful and so I just stay indoors.
Of course my family feel bad for going and sitting outside, they don’t want to leave me on my own stuck inside, but I have told them that there is no point in us all missing out on the warm weather. It’s bad enough that this is happening to me, there is no need to let it confine us all!
And so I now prefer the wet and cold winter months, I know I cant go out and the family are inside with me.
We have looked at getting decking that makes one level area at the level of the door, but the estimate is £1000 and it is therefore never going to be an option.
Last week I had eight vials of blood taken to test for a wide range of possible problems, I used to be unwell, disabled but still able to do things if I wanted and just suffer the pay back later. For some reason I am at a constant low now and showering yesterday left me so unwell that I was throwing up and feeling so unwell. I now have more flare ups than good days!
I was diagnosed with ME or CFS as it is now known and in 2010 I was diagnosed with CRPS but now the doctor is looking at whether the diagnosis of CFS is in fact wrong and it is something else. MS is one thing that they have said it might be and so I am being referred to see a specialist.
So for now I am missing out on the summer, my time is spent either in bed or on the settee, it is the spoonie life!
So my wife decided to set up a campaign on JustGiving to try and raise money to get decking put outside, that way I could then at least get outside onto the decking.