Diary Day 101: An Example Of How MECFS Really is. Yes Really.

On Sunday afternoon, my family were visiting. It was the first time they’d seen me since Xmas, which, for a group of relatives who all live in London, and all regularly visit my silver surfer Dad, is an example of how much planning it takes for me to host a social event at my place.

Honestly, I spent all week last week working towards it. That should give any CFSME -sceptics a snapshot of what it’s like having this disease. It was literally the ONLY thing I did last week, yeah, getting ready for a gathering of my family on Sunday. That was it.

There could have been more people, but I stopped at inviting them only. That was enough for me to cope with. I cleared Monday completely also, that was to recover.

Not from a hangover or a big celebration like you’d expect or I used to feel after occasions like that, but because I knew that spending a few short hours with my loved ones would wipe me out completely. I mean completely the next day.

I had it all under control and because it was under control, I was OK and knew I could handle it. My family don’t see me when I’ve crashed so I only needed to get through the time they were there and the rest was my problem to deal with.

Half way through the afternoon my brother emerged from the toilet to tell me it was blocked. Not blocked blocked, just not draining properly when it had been flushed.

My mind sort of went fuzzy directly when he told me because I spent all last week getting everything prepared for that lunch, buying food in stages, preparing it over 2 days, resting a lot in between cleaning and everything that you do when guests are coming around.

If it sounds like hard work, it’s because it is.

My mind went fuzzy because they’d been around for about 2 hours at that point and I was slowly sinking sideways, listing into my sofa.

No, before you ask, I wasn’t drinking. I can’t drink alcohol any more – it makes me feel poisoned, even one glass full. That’s another MECFS symptom, by the way. Loads of us have it yet it goes unreported in the main.

An hour into the afternoon adrenaline had well and truly kicked in, mixed with the deep pleasure of seeing all my closest people in my home.

I could tell I was riding high on adrenaline and ME was starting to tug me on the sleeve to tell me I was doing too much, because I was telling a story and I totally forgot the name of my local MP.

Proper nouns disappearing out of my brain is a symptom of Brain Fog – I once forgot the name of a friend I was sitting right in front of. Stop laughing, I’m not kidding.

I’d been doing too much that afternoon as well, like on Sunday. She’ll never know I sat there with a sentence in my head that never got spoken because I couldn’t start it with her name as her name had gone from my mind completely. It floated back about 1/2 an hour later.

It was embarrassing that I forgot the MPs name because my family haven’t really seen that sort of symptom in me before. All of them exchanged glances when I sat there tapping my mouth with my finger and describing everything about my MP, what they looked like, what portfolio they had, what things they’d done locally, but where there should be his name – a total blank. Nothing. Total lack of anything there where it should be.

Hello ME! Thank you for reminding me that doing something anyone in life does totally effortlessly is putting me under too much pressure and brain foggy blanks are one result.

My mind had already gone fuzzy because the loo backing up was totally unexpected and since having ME, I can’t handle things that don’t go according to plan and surprises stress me out for that reason.

I literally cannot multi task, multi-think, multi-emote, multi-process thoughts, multi-speak. All that mental capacity has gone.

Luckily my brother helped me getting one of those snake things and also the obligatory bucket and the chemicals and by Monday morning everything was OK again. Phew.

To cut a long story short, it was obvious by yesterday evening that all my attempts to ignore this problem and think it had magically fixed itself was wrong and I was going to have to deal with my landlord to get it fixed.

No biggie, you are thinking. Well yes, biggie actually.

You see even talking on the phone is exhausting. After talking for a few hours on Sunday I had a sore throat. That’s one of my ME symptoms as well. This is why I usually don’t speak to anyone during the day, the sore throat symptom comes back if I talk too much.

Not good for socialising or calling friends or family either.

Planning for a different sort of day is exhausting too. I have to tread through days like today carefully.

In order to deal with calling my landlord and getting the ball rolling on getting the loo fixed, I had to wake up at 8:00 this morning. That is like the middle of the night for me. I staggered around in my kitchen talking to myself so that I’d remember what I was doing.

I’d left myself a list in my living-room. When I saw it I didn’t recall writing it to myself last night but I was really pleased I had. That happens all the time as well. I don’t remember doing things a day later.

The list said: “Get ready first, eat, bath and dressed then call LL.”

Yes, I had to write myself a list to guide myself through what to do. Are you surprised? I’m not. If anything complex happens I have to write a list.

I followed my list, thankful to the self I was last night before going to bed who had obviously realised I’d need a list with a lack of sleep today.

I called the landlord and then started a day of what I can only describe as high level of activity: interactions, phone calls, thinking, letting people into my flat and all the stuff that happens when you’ve called out a plumber and are negotiating with him or her, then a landlord etc. to get things done.

The last thing I said to my landlord at 1:30 this afternoon was: “once they’ve gone and it’s all fixed I’ll get back in touch to let you know what’s happened.”

But by 3:00 I was totally wiped out. I fell fast asleep on my sofa and I woke up at 6:30 from a groggy, heavy, yawny, heavy boned sleep.

I’ve only just remembered before starting this post that I said I’d call my landlord. Really – where my brain goes when ME symptoms kick in is simply galling, really it is.

I mean – to anyone reading this who doesn’t think ME is a ‘real illness’ or it’s ‘all in the mind’ – would you cope with this? Would you?

This illness has robbed me of a normal life, normal responses to normal situations, a normal capacity to cope with normal events.

Thank goodness I had such a nice time on Sunday because the memory is still warming my heart and keeping me forward thinking and happy. I am happy, by the way, my life isn’t doom and gloom despite what it is these days.

BUT

I don’t need Cognitive Behavioural Therapy and Graded Exercise Therapy, I need a CURE….

© Lindy 2016

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