This month I’m taking part in an instagram challenge to raise awareness of rare diseases in the UK, in the lead up to Rare Disease Day, which is the 28th February. As I have Vasculitis, which is a rare disease, I am taking part in the challenge. If you would like to take part, the details of the challenge will be at the bottom of the post.
Today’s challenge was about living with a rare disease. It was quite difficult to post a picture that sums up what it’s like to have Vasculitis, so I did a collage of a few pictures.
Here are some things I experience living with vasculitis:
1. I am always tired. Even if I sleep 12 hours, I am exhausted by doing every day tasks, like getting up, having a shower, getting dressed, drying my hair, putting my make up on. I have to break everything into small tasks, and have rest breaks. It is ridiculous.
2. It can take me an hour to do something that should take ten minutes. – see above. I have to take rests and allow myself extra time.
3. I’m unreliable. I’m that friend who always backs out of an event last minute. Most of my friends live 1-4 hours away. If I’m having a bad day or recovering from an infection I can barely get out of bed. I hate that I let people down.
4. I prefer to spend my free time reading, walking, and having meals with friends or family. I used to love dancing, karaoke and running. And reading. I’ve always been a bookworm.
5. No one has heard of vasculitis. It took 3 years of pushing my GP to get a diagnosis. If there isn’t something obviously wrong with you, people won’t understand that you’re sick. Sometimes this includes friends and family. People can be cruel and I often feel quite isolated.
6. Life is short. If you want to do something, then do it. Don’t put off doing anything.