It wasn't that long ago that all these things were part of my life :
Stand Up Comedy
Working a full time Job
Any one on its own could fill a persons time easily, let alone all of them. And at the time I juggled them all without feeling too many stretches and strains at my life force.
Then I started to notice changes - and had a couple of severe crashes which the docs wrote off as depression and anxiety (as is their way) and started long term meds.
I lost focus - it was most noticeable in my writing, which more or less stopped. I didn't enjoy it. Especially not the editing - it was like the text wouldn't quite gel in my head when I read it. I put it down to the anti depressants.
Memory loss - well jokingly I put it down to age or genetic (Mum was famously scatty, Dad has Altzheimers) but this was also scary for me. There is a huge difference between forgetting something which as soon as you realise you forgot it comes back to you clear as day, and searching sometimes quite desperately to remember something you just did and finding absolutely nothing - not a vague recollection - nada. I recall quite clearly doing an improv game called alphabet I think. Each person in the scene needs to start their bit of dialogue with the next letter - it was going great until suddenly I froze - had to actually just not say anything - not because I couldn't think of anything for the letter, I didn't KNOW the next letter. It was ever such a small incident to others. To me I knew it was wrong. Very odd feeling. I started pulling back from improv a little and the fear began to creep in a bit further.
Word tripping (or word salad) - I would be in full flow conversation and a completely different word would come out of my mouth - mid sentence, making me do a double take as if I was hearing someone else. Sometimes they still made sense sometimes not, but always they were NOT the word in my head and just came out of the blue to me. It was funny sometimes. Sometimes not. In my teaching kids would notice, and I'd pretend it was on purpose to see if they were listening.
Co Ordination and Balance - In my youth I used to dance - Ballroom, latin, Disco - I was really good at it and I loved it. I've always had quite good co ordination and balance, but I began to notice more trips, wobbles, dizzy spells, losing my balance. I'd regularly walk into walls. Not head on, no, more like those trolleys at tesco that go to one side...
Gradually I dropped off the things I'd been juggling - the writing, the stand up, the improv, and finally and most drastically, the teaching.
June 2013 I had a massive crash and that was the last day I worked. Haven't worked since. A variety of things now came to the fore - some pretty massive vitamin deficiencies, the Coeliacs disease, and the fatigue. Having tackled the Coeliacs with a change of diet, removing gluten, I felt some changes.
I still have nowhere near conquered the deficiencies and fatigue. That massive, all consuming drained feeling is something I experience every single day.
Now to the new life - Lots of things have gone (see above) - and along with them a lot of the energy draining things and stressors. Also along with them went social things like seeing others on a daily basis. I don't see anyone except Derek, Rob and Edna. Sometimes for weeks or more. I have social contact on facebook. I chat sometimes for a minute or two to people walking their dogs when I'm out with Edna. And I shop. Love to scour the charity shops for bargains.
There are some other new things - sewing, decorating, gardening, cooking. Probably I'd have done these things more before were it not for the other pesky creative stuff taking all my time :D
I sleep a lot. Probably about 12 hrs on average each day. Don't use a lot of energy during the other waking 12 hrs either because if I do, I suffer the next day. My joints ache most of the time and I limp. I feel healthier though, I eat better and I look better. My doctor says that my bloodtests show nothing in particular and I'm sure he thinks I'm a nut, so I've stopped bothering. He wants to let my diet improve and rule out the other stuff before he looks at anything else. This is what its like with Chronic Fatigue and M.E. - Doctors don't know nearly enough about it to pin it down. If they can see another reason for the fatigue and symptoms, that's what they will pick - its the coeliacs, its depression, its a deficiency. Some doctors will identify ME or CFS, others won't. And if they have no idea, then I'm bloody sure I don't know. So, we need more info, people. I read what I can (yep, I blames the tireds!!) and I know enough to know that we don't know nearly enough.
The BIG ASK -
If you are doing nowt on Sunday 17th May at 8pm - Come to the Frog N Bucket and add some coffers to the pot to try and discover more about M.E. and CFS - aside from helping the cause, its a great line up and well worth the money :)
Tickets on sale NOW from http://www.skiddle.com/
I ask myself sometimes if I miss those things - its odd - I recognise that I used to do them, but now I don't. I loved doing them, now I likely wouldn't. I'm scared of the word trips and forgetting what to say, I don't have the drive to get off my butt and do them. I certainly don't have the energy or presence of mind needed for most of them. I love remembering.
I'm oddly content though. Stress in my life is way down - good for my health. I'm managing financially, just. My head is clearer and my heart is full of love for myself and those dear to me.
I still wonder - should there be more in my life?
But I'm a bit tired, so I'll maybe do more another day.