ME/CFS

Went to the Designer Outlet at York to meet my brother and his wife. They were there to have the soft top on their MX5 replaced. Do not try this yourself. It’s very difficult apparently. Walked around the shops and had an orange juice. The others had coffee but coffee really mangles me! I was fine all morning and drove home. That was the fun part.

When home was tired and slept but awoke feeling rubbish. Stiff muscles, shaky and dizzy. Still bad Saturday and slept a lot in the afternoon. Mind you the football was rubbish. Getting better now. So booked a car for holidays. Hope I can go! Hope I can drive! Looking forward to hols. Can’t wait.

When I’m bad, a small amount of exertion is a problem. I a) Go dizzy b) Shake c) Jump and jerk when sleepy d) Have palpitations e) Be worried, frightened and expect (hope?) to die.

When not so bad some of these return. I can find no correlation with my activity levels or anything else. It’s just weird and bloody annoying.

Went to www.HousingUnits.co.uk . Asked the assistants if they had the Visicook Crisp and Bake Cooker. WHICH said it was the best. Assistant said no until I showed them their website on the iPhone. That sorted it. Now a proud owner and have had superb low fat chips tonight. My body was upset with confronting the sales assistant, even though I knew she was wrong. I felt dizzy at first, then my muscles tightened up and I started to shake. Once I calmed down and drove home I was fine. Two hours lie down helped then it was up and at ‘em! Adrenaline really knackers me. More chips tomorrow and maybe sausages!!

Went off a bit last Wednesday. The boys were round for cards and I found that worrying. I don’t know why. They are all good friends but anything that gets the adrenaline going makes me hyper in a bad way. Not too awful… only HFIR 7.0, better the next day (HFIR 9.8) and perfect 10 today.

Now following TeenagersWithME She’s probably 45 years my junior. I could have taught her! Don’t think I did as she writes much better than me. Mind you, I was a physics teacher – we don’t write well!

Her symptoms follow mine almost exactly. I had about 7 years of feeling good, and working, before symptoms returned. Feeling good now.

Must have taught some kids with the same condition and never realised it.

Live for the day!

Ever had that feeling that no matter how many times you clean your glasses, they are still blurry? No? Well just me then! Decided I needed an eye test. Booked in for 10 a.m. Far too early!

The optician was a pleasant and gentle soul who asked all the usual questions until he came to general health.
“All OK?” he inquired.”
“ME.” I say.
He went quiet for a moment then asked. “What is that exactly?”
I countered with “CFS” but he was obviously none the wiser! How lucky can you be that you have never even heard of ME/CFS!

The upside is that I will soon have some less blurry glasses and the HFIR index is perfect at 10 at the moment. Booked a holiday and the sun just came out. My cup overflows!!

I’ve been brilliant since my last post. Fine over Christmas and the New Year. HFIR index at 10. Perfect! Had a bit of a problem after I tried to a bit of DIY too far. Lots of swearing and sweating involved! Whenever I do anything there is a lot of sweating and swearing involved! Usually I sort it but nothing is ever easy. Has taken 9 days to get back to good. Missed out on the boys cards night out but can walk, talk and help take the Christmas decorations down now, so can’t complain. Well, actually I can but I’m just a GOM. (Grumpy Old Man!)

I’m so good I booked flights to Nice from Liverpool by Easyjet for the spring. Easyjet website is so much better than it was and a lot better than Jet2. Cheaper than Jet2 as well. Unfortunately a big disadvantage is that we fly from Liverpool (1 hour away) rather than Leeds/Bradford which is just down the road. I have to be able to drive to Liverpool, park, book in, fly and collect car at the other end. If I’m well that may be hard. If I’m bad that will be a problem! Not insurmountable but a problem. Expect to shattered for the next 3 days at least. Who cares? I shall lie in the sun and drink red wine!

For 2 months now I have started to shake and become unsteady on my legs as soon as I get any sort of stress. This can be as little as talking to a stranger or carrying a cup of tea. Really stressful situations made me vibrate like a tuning fork. As always I blame myself. I must have drunk too much… or I haven’t rested enough… or it’s the general nameless dread that hits me all the time when I’m bad.

Gradually over the last week this has started to go and yesterday I forgot it was there. Today I helped lift an estimated 100 kg of engine onto the back of a wagon. No problem; not tired and no shakes. Actually it was a problem as it was freaking heavy but we made it.

It seems that just as I get to feel better and complacent this sodding illness hits me with a new symptom which is my fault… according to my brain. When I start to feel better the thinking gets more rational. Strange!

Have been good now for well over a month apart from a few times when I get stressed.

Drove to Wales to be with friends. That was tiring and stressful so was very shaky and tired. HFIR index at 6. Not too bad.

The last week has been fine. I can work for about 45 minutes every 2 hours. After 45 minutes I get very sweaty! Yuk! Positively drips off and stays that way for some time. I go through loads of towels! Not ME/CFS tired at all. Good tired. Slightly shaky at times but that’s improving. HFIR index is at 9.8. Near perfect.

I’m doing good. Thanks for asking and my drive is clear of leaves thanks to Angie for lending me her leaf blower. Its brilliant, as is Angie but that’s another story.

So have stopped shaking and being dizzy now and felt perfectly fit for about 5 days but each of these days I have had a glass of cider and each day have gone bright red in the face and upper body and felt uptight and congested. Blotchy. Having a cold as well maybe something to do with this but expect this is just another manifestation of ME/CFS’ myriad facets!! (Stands back and feels proud of his magnificent use of long words and of the apostrophe. Am I a prat or what?)

Have unsubscribed from the MEAssociation (bless them). The lovely Gill asked me why.

I replied:
“The reason is difficult for me to put into words. I have found nothing that helps my symptoms or makes them worse, except stress. Stress, however, is not the only cause, it randomly attacks, but my illness has a psychological component. I think many of your members would strongly disagree with that.

I know that nobody has a cure, or even any proven method of reducing symptoms, yet the literature is full of suggestions that have as much value, in my opinion, as bleeding or leeches. In other words there is nothing to say about ME and I don’t want to read about fellow sufferers who are worse than me, as this may make me more like them! The psychological link again!

So I’m just going to live with it and hope that if I ignore it, it might go away! I know it’s unlikely but it did between 2002 and 2008 when I worked as a phone salesman for a Cambio (brilliant people) and van driver for Valentine Haulage. The best haulage company in the UK. Then I got crap again… bugger! Ho Hum! I had 6 good years!

Bought myself an iPhone 4s and talk to Siri. He’s (I want a she, like my TomTom) sympathetic at times and downright formal at others. OK we’re not going to have sex but women have other uses… I will not go on as I may be in a spot of bother! I DID NOT mean cooking… although true, as she is much better than me, but looking good, sounding nice, smelling good, empathising and feeling squishy. I seem to have segued away from Siri to real women! Well worth it in my humble opinion!

The latest idea of my ME/CFS is make my muscles go rigid as I get tired. So any part of my body may suddenly jerk. Difficult when using a mouse. I visit all sorts of websites I don’t mean to… and that is the case for the defense!

It also makes me shaky and for some reason, dizzy.

ME/CFS seems to do this. Just when I come to terms with one symptom and decided it’s not going to kill me, it disappears and comes up with another symptom that feels like its trying to kill me!