Lately, I’ve been thinking what I want to do with this blog. My main focus is raising awareness and trying to educate people on my chronic illnesses and life as a chronically ill person. And hopefully learning things myself along the way.
I haven’t done an update for a while so I’ll get that out the way first. Things have been pretty crappy to be honest. I have FINALLY moved house which feels amazing. I was living in a first floor flat and when I lost the partial use of my legs last May, I had to bum shuffle up and down the stairs whenever I wanted to go out. The flat was not accessible in the slightest and it was honestly awful – absolutely awful and so disheartening. My housing association left me waiting there for 7 months. 7 MONTHS. Which I think is absolutely disgusting and I dread to think how many other people are out there in the world in my situation – or worse.
So at the end of January, I lost the complete use of my legs and what I mean by that is I can’t move them at all now unless I physically pick them up and move them. It’s awful and so heartbreaking and not knowing how my condition might progress is so scary. I am going to do a post on my main chronic illness FND soon so watch out for that. I saw occupational therapy last month and they have given me some equipment which is really helping me.
I finally have an appointment with the specalist I mentioned a few months ago. It’s in London so it is going to a trek but if it gives me some small grain of hope then it will all be worth it. It’s just a pain that I have to wait until July BUT I am just so grateful that he is actually going to see me. I’m also on the waiting list to see the neuropsychologist for my NEAD.
I think I’ve probably covered everything health wise. I’m just trying to keep busy and distract myself and doing little bits here and there to try and help me feel a bit better about myself.
Learning to say no.
If you know me, you will probably know that I am absolutely terrible at saying no. I hate letting people down and I hate admitting to myself that I’m not able to do everything I used to be able to do. I also hate saying no to myself. If I have a mental note that I have to do things then I hate not completing them. But I am learning and I am trying to say no more often. I’m trying to pace myself and listen to my body – something I never really was able to do before. I am quite lucky in the sense that most of my friends have chronic illnesses themselves so they understand if I don’t reply to their message straight away (or at all) or if I can’t do something. My best friend understands that I’m not able to do something we have planned or help around the house.
I really do try to think positive and focus on the things that I can do rather than what I can’t. It’s not always easy and sometimes I just need to wallow in self pity.
I think that’s all I have to say at the moment. I am trying to grow this blog and raise awareness – and doing my favourite thing, writing. I want this to be a place that people can relate to my posts and maybe learn a thing or two. If there’s anything you would like to see please let me know.
Well if you’ve made it to the end of this post – well done you! ☺
Come and find me.
You can contact me here; firstname.lastname@example.org