Hello there

JustynaK

I just wanted to introduce myself. My name is Justyna and I have had breast cancer in 2017 followed by 6 rounds chemo, lumpectomy with lymph nodes removal and radiotherapy. Finished all treatments in March 2018.
Thereafyer, I was waiting to go back to work and my normal routine but that never happened, and my body did not recover from cancer treatments. My body immune system is still very weak and I get a lot of infections and inflammation. In December 2021 I was diagnosed with MECFS. I have tried going back to work several times but that made me worse and I am mostly bed bound. I can go out on occasions but after I pay with being in bed with pain and infections. One after another, so at least I know what to expect. I think I will need to have a Carer but Birmingham City Council DIDNT want to help with that. I look ok so people assume that I am a fine. On top of that I have ADHD with some kind of mental disorder and going to psychiatrist every month or a week. MECFS CLINIC DIDNT really help apart from pacing. Every day when I wake up I scream in pain as I need to move my muscles and joints to get moving. It’s like I am paralysed every day at first, and I have to “kind of defrost my body and brain”. I am very lonely as I lost a lot of friends who had enough of listening about my health issues. Plus they have busy schedules and I am just surviving. I don’t really complain much anymore and maybe that’s the reason that no one gets it. However, it’s not easy to explain it at all. They all think I am just lazy. I am on UC and PIP but I need a carer and a cleaner plus someone to cook for me ;( it’s £35 per hour.
I can’t really afford as I also have Motability car. Without it, I would never leave my house. Any advice how to get some money or a grant to get a part time carer please?

Albus_Scope

Heya @JustynaK and welcome to the community, it's a pleasure having you here. 😁

Firstly, do not worry about complaining here, we are all allowed to vent and I actually encourage talking about our problems. It's good for the brain after all. 😊

Regarding a carer, have you had a needs assessment yet? I'd say that would be the first port of call. It's also worth looking at a benefits calculator, just to make sure you're claiming what you can.

Holly_Scope

Lovely intro @JustynaK! Loving the picture ☺️