This piece was written ready for last week’s blog post, on a day where I had a couple of hours of relief from the pain. I always like to take some time away from a blog post before editing it. When the time came to take a second look I was too sick to do it. This week I have been a bundle of nerves as I am off to see the neurologist later on this morning. By the time you read this on Thursday 23rd June that will have been yesterday!
This week has been a total crapfest bar one day, a week ago Wednesday when a friend popped over. It’s a couple of hours like that which keep me going even if it means collapsing into bed immediately after they leave. I basically went to bed on Wednesday afternoon and then barely left it after. Sleeping the majority of the weekend away as I was so worn out from the pain.
I will be honest I have been playing fast and loose with this of late, pushing back against the headache so that I may get a few more hours out of bed. This never ends well as it exacerbates the pain and leaves me worse off than I would have been if I had just laid down when the pain started. Denial has always been one of my biggest issues.
Even 9 years on I still can’t get my head around the fact that I cannot do the things I once did. It is as if my brain refuses to accept that things have changed and will never be the same again. This causes problems for me with people understanding how disabled I actually am because I continually downplay the crapfest which is my life and I “don’t look sick”. Although with this suspected CSF leak I am starting to look the part when the pain is unbearable.
The other day I caught myself thinking “I’d love to go for a run”, which is hilarious as there are times I struggle to walk from one sofa to the next. My brain refuses to admit defeat.
Due to my continual denial to the outside world, people who haven’t read my blog (mainly medical professionals), are completely clueless to how much my life is affected and consequently I have got to the stage where I am begging for help and it seems like no one is actually listening. I have emailed the people at my local council for help because I need equipment such as a commode for my bedroom for when the pain is so bad it’s a struggle to get to the toilet, a table that can go over my bed, just basic things really that would make the world of difference in a limited situation. Asking for help goes completely against my nature, so this year I have decided it is time to go big or go home.
I also asked the local council about a wheelchair assessment, I had one back in 2008 but due (again) to the fact I was in complete denial about how awful things were I refused to go back. All my chariots have been bought on-line mainly from Amazon however they are no longer suitable and although Amazon sell the type of wheelchair I am after, I don’t have the means to buy it myself. Hence the Go Fund Me – Help me walk the dogs again campaign. I am happy to report that we have raised over £900 now. Most of that has been raised through hubby being sponsored to have his back waxed. I am a little worried though as earlier today I ripped a plaster off his arm (he’d had a blood test) and I thought he was going to cry.
**Since this post was written we have now raised £1,300.
I have been truly amazed by people’s generosity and I know we still have a long way to go but we have made magnificent headway in less than 30 days. The trick now will be to keep the momentum up and we have been discussing ways in which we can raise more money.
So despite the week being mainly one filled with quite severe pain and vomiting, there have been some truly wonderful moments in it as well.