We went to legoland discovery yesterday and despite my husband discovering how heavy my new wheelchair is it was a huge success yay. OK…..so there were a few minor crashes at first while I got used to the controls. There was none of the stigma of a mobility scooter and I was independent and could go where I was woo hoo. Only downside is the kids constantly trying to get me to suddenly recover and get out of it so they can play. So they were delinquents in the car park racing around with it on full speed while I sat in the car and Rob lost the will to live while chasing the kids. I also had many times of panic when the wheelchair seemed to be struggling. It wasn’t known to me that jess was riding along on her heelys behind it to drag her along. And the battery was awesome and hardly went down all day which was a huge relief. And it didn’t feel like it was going to tip over like the mobility scooter does. So for once I am happy ha.
Starting to enjoy not working. Just because we can do things on a weekend. And also it’s nice not having that pressure that I have to be well enough. In fact I slept through when I would be at work on Saturday as I had taken jess to gymnastics but hardly slept the night before. My sleep is terrible at the minute. Just due to pain. The painkillers I used to be on my body has become immune to. I have some for neuropathy which is a major problem at the minute but honestly aren’t keen on taking them due to the side effects. Mainly weight gain. But then I am pretty immobile at the minute and struggling. So got an appointment on Wednesday to discuss the pain. My last two appointments were with a registrar who looked like she wanted to cry when she looked at my notes ha. So I thought I should be good this time and see a doctor who knows me. The doctor I saw last week also didn’t know how to spell psoriatic which didn’t fill me with confidence when I have psoriatic arthritis.
But she was very good with jess who also had an appointment. She needs to have blood tests which is causing her huge distress. Frankly I could tell her I am sending her to be executed and she would react better. I have never done anything to make them afraid of needles and they often come to my 7000 blood tests and I never react and they both enjoy stabbing me with my own injections. Again….another way of them not being afraid. But no, I think jess would rather run away than go for this blood test. It’s my worst fear, to check her for arthritis. There is no denying that despite the fact I am the first person in the family to have an autoimmune disease it is hereditary. I don’t think she will have it yet. I think she just pushes herself so hard at gymnastics that she is picking up regular injuries. But to get her to go to this blood test I have promised she can have a new doll and if she does have arthritis she will get pretty crutches and can have an electric wheelchair. So she is now sold on the idea. Nothing like bribing your children. Sadly finley is the one who actually shows more signs of arthritis but has had blood tests and no inflammation yet thank God. I can’t help but feel guilty but I thought my health was fine when I had both kids. We had a few months from hell when finley was two and I was diagnosed and he was diagnosed with special needs within 3 months. That was not a good time.
When you have worked since 16 the thought you might not be fit enough to work is scary. I have never been on benefits and didn’t even know how to. I was lucky with my disability application that it went through straight away. Although we are thinking of contacting them to change the car. I have become so much more disabled I need some more adaptations really. Which sucks. But I know how lucky I am that the government provide this. I see people in the support groups online from other countries who have it so much harder than we do.
Anyway have whittered on enough. As you can tell I am in a better place than the last blog. So bye 👋