Today is my 18 month bed-iversary... I've spent at least 20 hours of the day in bed for the past 18 months. (I'm "celebrating" with chocolate mud cake and a soy latte a bit later, in case you're wondering).
Two days ago, I had an assessment for the Disability Support Pension... not something that I ever thought I'd be queuing up for, but you have to go with what life is presenting you.
Attending the assessment meant getting dressed and leaving the house. That's a big deal. It meant walking a short distance and dealing with noise, also a big deal. At my assessment, I explained that I am mostly bed bound, am unable to care for myself (that I've to give up work and move in with my parents)... needing someone to cook for me, clean, do washing, and help me with showering. I said I often could only sit up for 30 mins at a time, and some days not at all.
I had prepared a summary of my medical tests, symptoms, and treatments for the assessor to read, so that I didn't have to explain everything. From past experience, I knew that by the time I got to the appointment (only 15 minutes away), much of my energy would be gone and I would have difficulty thinking clearly and talking. I offered it to her, and she refused it, saying she didn't want to waste 10 minutes reading, and that it would be easier for me to just tell her in my own words. So, instead, she wasted 10 minutes whilst I rummaged around in my brain, trying to recall what treatments I'm currently on.
Then she then asked:
Do I drive? (No).
How do I go at the shops? (Don't go).
Would I use a mobility scooter if I went to the shops? (No, can't sit up for that long, or cope with the sensory overload from a shopping centre environment).
What if I want something from the shops? (Ask someone else to buy it for me, find it online or go without).
What about walking? Does this impact my ability to walk around? (Yes. Reminded her of the difficulty that she saw I had had moments earlier of walking from the waiting room to her office).
Does it impact my ability to do physical things? (Yes, see earlier comment about parents as carers, giving up job, and needing help with every day tasks).
Do I use public transport? (Ummm... ).
I understand that she was just doing her job, and needed to tick some boxes. However, it is an illustration of what it can be like to live with an invisible illness like ME/CFS (and, indeed, any invisible illness). That sometimes, no matter how many times you say something, people just don't hear it.