Bring chronically ill means you have to do some things a little differently but, not always in an obvious way and that tends to really throw people off.
I get a taxi to the next village over every morning to catch my train to work, it's about a 5/6 minute drive and most people walk it but, that's simply not an option for me. I have tried it once, it took me over an hour and I was in agony for days. Although my friends and family know I can't walk long distances they still suggest I walk it, someone mentioned cycling once, whenever I complain that my taxi was late or too expensive. All a lot of them see is the wasted money because that's £5 a day I could save by walking. What they don't realise is that I would pay five, ten times that if it meant I could work at a job I love and feel like a 'normal' functioning member of society.
Other little costs are things like trousers. I can't wear denim or scratchy, non-stretchy fabric like it so buying trousers that don't look like they were designed for a grandma can be a real pain and usually I have to travel to certain stores and pay extra for cotton jeans. My coat is a ski jacket which cost me a fortune, not because I love skiing, but because its very insulated and getting cold is painful.
All of these little costs add up to making a spoonie life so much more expensive without even taking into consideration the big costs like travel to hospital visits (£300 to the specialist on the train).
When people whinge about chronic illness sufferers claiming benefits like PIP or DLA because they say we don't have any extra costs like 'real' disabled people then I wonder if they have ever considered all of the little invisible costs adding up and taking their toll on our income.
