It’s that time of the year again: ME Awareness Day. I haven’t managed half of the awareness raising things I usually do; I’ve been having to take it easy following a lot of appointments & there’s more coming up.

As has become tradition I’m writing about a day in my life with ME, describing how I am and what I can do on an average day.

So here goes….

“I wake around 8:15am and lie there slowly moving my joints, stretching, assessing the pain levels. I slowly attempt to push myself up into a sitting position; this often takes a few attempts as my arms collapse under me as I try and push myself up. Once in a sitting position I move my legs round so I’m sitting on the edge of my bed and there I stay for a few minutes while my body adjusts to being upright. If I attempt to stand too quickly I get very dizzy & feel faint. I make my way to the stairs, usually leaning on the door frames and walls on the way, before beginning the slow trek down the stairs, often on my bottom; bum shuffling as it feels safer than trying to walk down them.

Once downstairs I use the bathroom before sitting on the sofa, propped up on pillows with my feet up, resting for at least 15 minutes before attempting to get my breakfast. I get breakfast while sitting on a perching stool, having assistance with lifting and opening bottles of squash and milk etc. Before returning to the sofa, with my breakfast, usually carried by one of my parents, where I eat it before taking my pills.

I rest for a while after breakfast before climbing the stairs very slowly to get some clothes; I sit on the edge of my bed getting my clothes out of my wardrobe and chest of drawers (the perks of having a tiny bedroom!) before slowly making my way down the stairs again.

I have another short rest before I head to the bathroom to get dressed, I sit on the top of the closed toilet seat to do this and either use a helping hand or have one of my parents help me with dressing my bottom half. Whatever happens socks get left until I’m back on the sofa!

I have another short rest, then it’s usually half past ten, if not eleven o’clock – boy does time fly by when you have to do things slowly, punctuated by resting! – so I make a start on doing something, usually replying to a message from a friend, knitting or catching up on a TV show I’ve missed. Whatever it is, my concentration vanishes after 20 minutes and I can’t knit for long because it hurts both my arms and hands.

Another rest follows, before lunch. This is often made for me by one of my parents now, and brought to me to eat on the sofa. It takes me a while to eat and I require yet another rest afterwards as even just eating & digesting food takes energy.

The afternoons are often spent outside on my garden sofa in the dry warmer weather, laying there with my sunglasses on (and earplugs in if it is noisy), on colder or wetter days it’s the sofa inside that has the pleasure of me laying on it! I might read if it’s quiet, watch a little TV or just lay there quietly chatting to my family.

I have another rest mid-afternoon, before I get one of my parents to help me into my pyjamas. Then I curl up in a comfy chair (feet up) and watch my Dad cook dinner, often chatting to him as he does so.

I return to the sofa where dinner is served to me on a lap tray – since spilling my dinner all over both myself and the sofa a few weeks ago I am no longer allowed to hold a full plate!

After dinner I often just lay on the sofa listening to the conversation going on around me. Depending on how fatigued I am, I might well be wearing my sunglasses and possibly even have an ear plug in order to cope with that.

Come 10pm I head to the bathroom to get ready for bed, my legs often trembling underneath me as I do so. I have to sit down to do my teeth before making my way back to the living room where I take my final lot of painkillers of the day. My Dad helps me get up the stairs, ready to support me if my legs do decide to completely give way underneath me. It’s an incredibly slow trek as by this time my legs are shaking constantly under my weight.

I get into bed, write in my journal, turn down the light & wait for sleep to claim me; by some miracle that is usually by 11pm! “

As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I think I can handle with no negative effects on my health. Anything more and I pay the next day. (a recent deterioration means I’m not 100% sure this is accurate right now – it might be slightly less activity to have no negative effects).

Looking back on last year’s post it’s disappointing to see things have deteriorated again and things are that bit more difficult again. I did know things had become worse of late but I hadn’t realised just how drastically things had changed in the past year. Life goes on though & I remain positive.

Some things haven’t changed since last time though, so I shall quote from my post back then:

“…when people visit I always put on a brave face, an act so they don’t see just how bad the ME is. I don’t do this for my sake, but to protect them from the truth. There are some who see the ‘real’ me now but it’s taken a few years for me to ‘drop the act’ for them. And if they themselves are having troubles or stresses the ‘act’ of being better than I am and not letting on how bad I really am comes back to protect them. I don’t want to add to their worries.”

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