Monday 18 September 2017

Basket case

So this happens quite a lot.



It's not that I don't want to talk to people. It's just that when I stand up for more than a few minutes, I don't get enough blood to my brain and I can't focus on complicated things like words and language. Its a common symptom of CFS, called POTs (postural orthostatic tachycardia) or OI (orthostatic intolerance). I call it 'my being upright problem'. Its severity fluctuates with my other symptoms, but its generally been pretty bad for the past five months. I spend most of my time lying down, apart from when performing the essential upright tasks of daily living.

Feeling awkward about needing to act 'unusual' in public is a thing that many disabled people must come to terms with. Doctor surgeries or the welfare office (the only places I go outside the house) have been awkward for me, as I'm not even very good at sitting on a chair when my feet are all the way down on the ground. I prefer to sit or squat on the floor so my feet are a shorter distance vertically from my head. That's if I don't need to lie down.

I'm pretty sure the staff at the welfare office wondered if I was a basket case when I last had to go there. That day I was really sick, but there was no way out of that appointment if I wanted to keep my payments. I collapsed on the floor soon after walking in, and handed the attendant a note I'd written beforehand, explaining I was really sick, sensitive to noise and needed to lie down. But my body was malfunctioning worse than I had expected and I couldn't answer any of their questions. The three staff members who gathered around me didn't seem to know what to do, until my mum came in from parking the car.

Earlier in the year I had three separate dog walkers approach and ask if I was okay when I had to lie down on the grass in the middle of a park. My body couldn't make it the hundred meters to the beach that day. Of course it was an encouraging sign of community and human nature that they did so, but I really didn't have the energy to explain myself. And what does one say anyway? Yes but no, no but yes? I wished I had a little sign or note to show people. Maybe they thought I was drunk, drugged or mentally ill? "I'm not okay, I'm seriously sick, thanks for asking but there's nothing you can do. I might look terrible but I'm actually happy to be out of my house and close to the water for once. I just need to lie down".

Do other disabled people stay at home because they worry about what people think of them? I must admit at the time my largest worry was how I was gong to get back to the car, not what people thought of me. I wondered how many times I had made assumptions or been scared of unwell people acting strangely in public before? I know I will be more open minded and check my fear reaction in the future.

Because POTs is the most disabling of my symptoms, I've started taking medication that stops my kidneys excreting so much salt and therefore raises my blood volume. It might be helping. But not so much that I can say for sure. 

The inability to concentrate also occurs when there's other distractions, such as lawn mowers, music, other people talking nearby or strong chemical smells. 

Compared to a normal functioning human-being I am a bit of a basket case really. Or you could say I'm a crocheted beanie case. (I must have made at least a hundred over the past year). 

"When a given situation has no solution. It makes reference to someone who has lost their health and has no cure. It is said that people without cure to a mental disease used to be sent to a mental health care facility for life where they would manufacture baskets for the rest of their lives. " (the Urban Dictionary)

At least, despite my sometimes unusual appearance and actions, nobody has institutionalised me, and I still do have my mental health. I'm still okay. But I don't take it for granted anymore, like I used to take my physical health for granted. I consider it lucky that I'm still able to find beautiful moments, meaning, connectedness, peace and sanity in life, even with extremely limited mobility, and a physical illness that doctors can't cure. And I retain the ability to communicate my lucidity, and my struggle through the written word. 

Things could always be worse, and have been.

This talk of mental illness is very close to the bone for many chronic fatigue patients. Millions of people have been inappropriately treated for decades due to misunderstandings about the illness by medical profession. "Can't find anything wrong? It must all be in your head...." I am personally 100% sure this illness is not all in my head. But having an invisible, variable, chronic illness is such a mind-fuck that, even for me, doubt sometimes creeps in. I can't imagine how it would be if I did have a history of mental illness, or if doctors were thinking that I was just making it up to get attention. I am lucky to live in a time where patient advocacy has gathered enough momentum, and biomarkers for CFS/ME/SEID have been recently discovered by science, so it is far less likely I will be sent to a psychologist to 'cure' this invisible, physical illness.

In the meantime, come to think of it, basket weaving does sound like a nice gentle, contemplative past time achievable from the couch, floor or bed, while myself and other patients wait for the researchers to learn more about how to help us. So perhaps becoming a literal basket case shall be my next career goal. Stay posted :)