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All the things that you never wanted to know about my life with an acute chronic illness

I’ve lived within the four sides of my single bed for 11 years. I haven’t seen outside apart from the times I’ve been in an ambulance.

I’m unable to sit up so when nature calls, I have to slide onto the commode beside my bed whilst doubled over so that I don’t pass out.

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I’m unable to speak. Up until last Autumn, I used hand signs and gestures to communicate and I also used my finger to make the shape of letters on my duvet to spell out words. Now that my hands, wrists and arms have become so bad, even this isn’t possible and I’m completely locked in.

I’m too ill to have people in my room so the only time I see anyone is when one of my parents brings in water/food/empties the commode. Twice a year (my birthday and Christmas), my family come in for a few minutes to give me my presents and take photos. Those few minutes cause months of agony and deterioration but it’s worth it to see them.

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I severely struggle to breathe now. I have to work so hard to keep breathing.

My food has to be very soft (e.g. scrambled egg) and has to be cut into tiny pieces for me because my chewing and swallowing muscles are badly affected. I can’t hold cutlery; I used to be able to use a plastic spoon until last Autumn (when my hands, wrists and arms deteriorated because of what I was forced to do in hospital) so I have to use my fingers now, which are very shaky from the exertion and overuse.

My water is in small plastic water bottles with straws because I’m unable to lift them.

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I press a buzzer a few times a day when I need water bottles refilled/food/the commode emptied.

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My heart is so unstable and my condition so fragile that my body cannot be moved.

I’ve been too ill to have a hair wash or a proper bed-bath for 3 years. It’s a horrific choice between being alive-but-dirty OR dead-but-clean. To state the obvious, it’s disgusting, embarrassing and I hate it. But it’s better than dying.

I wear ear defenders most of the time – sound is agony. Sound is a physical activity that makes me deteriorate.

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My curtains are closed 24/7 – light is agony. Light is also a physical activity that makes me deteriorate. There was a crack of light coming through the curtains for the photos on my birthday but it had to be quickly closed up afterwards.

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All these things pale into insignificance compared to the torture of constant acute symptoms. I won’t go into all my symptoms again (you can see them here). Being on the brink of death is not fun. Understatement of the year.

Twitter and Facebook used to be my lifelines. I couldn’t communicate a fraction of what I wanted to or properly reply to people but I was able to write a few sentences every couple of days or at least press the ‘Like’ button to show someone that I was thinking of them. Now that my hands, wrists and forearms have deteriorated so badly from being pushed and pushed too far, every time I pick up my iPhone and write something (e.g. this blog post), I lose the use of my hands, wrists and forearms for about 3 months afterwards and cannot pick up my iPhone at all during this time. This means that I am completely isolated and cut off; I no longer have the solace of the internet – I can’t check my email, twitter or facebook.

I do have an amazing friend (the incredible Tanya Marlow) who writes an email to me every week and expects nothing in return. She knows that I can’t check my emails anymore so she also sends the email to my Mum so that it can be printed out and given to me. My life is dark but her emails have saved me many times over. She reaches into my life and makes such a difference. It’s nice to know that someone cares about me enough to write to me regularly and tell me all about their life, thoughts and feelings. I’d forgotten what it was like to have a current friend as opposed to friends from the past. I always reply to her emails telepathically even though I can’t do so physically.

I’m able to watch some television in the evenings, which brings me a lot of joy. Looking forward to it sustains me through the day and keeps me going. At the moment I’m rewatching Heroes (Heroes Reborn reminded me how much I enjoyed Heroes when it was first on the telly so I asked for the DVD boxset for my birthday to rewatch it all).

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I am frightened for the future. How is this all going to end? My parents won’t be here to care for me forever. I can’t afford to let myself think about this though. I can’t be emotional or mourn what I’ve lost (everything!). I just have to focus on surviving and staying alive. It’s the only way to cope. I can mourn when this is all over. If it’s ever over.

Today is M.E. Awareness Day. If you’re able, please consider either making a one-off donation or setting up a monthly donation to M.E. Research UK. If your workplace has a Payroll Giving scheme, you can donate via this.

Our dog, Harry, is wearing a forget-me-not crown for M.E. Awareness Day (!):

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