I am a Haemochromatosis carrier, have hypoadrenalism (Addison’s disease), and genetic lymphoedema on top of chronic illnesses (brittle asthma and other things).
Everyday is a, let's see which one is playing naughty today. It's a juggle to manage lots of conditions, work and hospital. Days and nights include, pain, fatigue, problems breathing, lethargy, swallowing problems and incontinence. It's a rare occurrence to be able to enjoy respite and be able to undertake social activity. These combined can create lots of different extra costs.
To alleviate pain and help breathing, I sleep sat up and have legs raised, three different body support pillows are needed and a nebuliser and a humidifier. One day, I am hoping to buy an adjustable bed. This might help my partner sleep better too and not be disturbed so much by my movement and noise.
Managing multiple conditions involves having to pay for extra things
It's a full-time job. Managing conditions and extra costs and adaptations do take their toll sometimes.
In order to be able to work, moving 10 minutes way from the office, was a large cost that was needed for me to avoid commuting fatigue and infections. I am lucky that my partner, who thankfully works from home, is able to drive me to work and back.
Everyday costs for incontinence include pads, mats and constant washing of clothes and mats. Everyday costs in the seasons, winter and summer, mean one minute the heating is on all the time to keep the air warm for the lungs, and then an air conditioner on all the time when the air is too hot to be able to breathe well.
The advantage to having rare conditions I suppose is that every day is a different one. Who knows what tomorrow brings.
Scope are campaigning to tackle the extra costs faced by disabled people and their families.