Category: M.E. chronic fatigue syndrome

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Stressing

This is what I need just now as I am not keeping up with ‘things’.

Days are starting and ending with a struggle. The amount of pain I am in means I rarely go a night without having to get up for a bit and sometimes take meds.

I can’t look forward to anything because I no longer hold the purse strings.

I need a holiday, I want to look forward to my 60th but, at the going rate of things, the first won’t happen or, it’ll be so ‘not for my needs’ and the second I am starting to think should be very low key.

The mobility scooter I bought turned out to be an utter pile of trash. I will be lucky to recover £50 selling it for parts. It is not worth my while chucking more money at it because it just has too much wrong. Final nail in it’s coffin was the seat falling off on Monday! Oh well, only wasted £350 on it, it’s only money.

No flight for the Philippine trip can be booked until Dennis gets his UK passport (April/May estimated). By then there will be very few flights left and it’s already stretching the budget to a point where we’re either in crap hotels or sleeping on floors and, no more can I sleep on floors and walk the next day. So, unless prices drop drastically or, Dennis lowers his expectations, that won’t be happening at all. It’ll just be three weeks at home.

I have been driving around in a Mercedes for the last week and, lovely as it was, I am glad to get my car back from the repair shop.

@motability are so useless with their insurance policy that the claim took the best part of a year. They have this idea that it’s OK to put all those with drivable cars behind those who don’t as though somehow, our insurance isn’t also as valid!

They argued that the parts were just not available because of a world wide shortage. As I had been arguing for months, they were talking bollocks! Electronic components were in short supply, not body panels (what I needed). They eventually agreed for me to choose my own garage and it was fixed within the month. Just before I took mine in, their chosen garage offered me a date in June!

The garage forgot to ask for the £100 excess payment so I told #motability that I will only consider paying that when they fully deal with my official complaint they’ve never looked at and when they do, they can award me £100 compensation!

Walking … it’s really difficult at the moment. Pain relief lasts no more than 2 hours and then I am a lot of discomfort, even standing is really uncomfortable. I need a mobility scooter in the car but, it is shite so, I am back to my walking stick which doesn’t even come close to being enough. I might have to buy a ramp and take my big scooter with me. Even sitting is so incredibly ‘ouch’.

It is Valentines Day today, well, maybe after I go bed and get up again.

I’m not feeling all loving just now. Just shattered and really don’t want to cook tomorrow

Do we think someone else might cook?

I think I should try and sleep. I took some pain relief just over an hour ago, it’s stopped working already.

Good night

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Dosette Box

Pill Organizer

I have a lovely one. Each month I sort out all my pills by day and AM/PM and it’s great.

I cannot use it without the clock nearby which tells me the date because, most mornings I don’t have a clue and … if I don’t have a month supply of meds, I run out toward the end and then, at the end of the month I struggle to work out why it is I have ceased up and can’t get around … maybe because I am taking zero pain relief!

My medical condition is flippin’ horrible like that. I forget stuff all the time, get confused so easily and well, forget the day! When having a crash …

(When I have pushed myself too much and it takes days to get any energy at all)

When having that crash I amaze myself if I manage anything at all. Yesterday on a less than 10 minute drive I had to stop and sleep for just over 10 minutes just one minute from home as I realised I was not fit to drive (I know the line very well).

Not me in the picture of course

I cooked a meal earlier, personally I didn’t enjoy it, because my (probably covid) illness over Dec/Jan, it wasn’t nice for me. So much food I used to enjoy I find unpleasant now either because I cannot taste it at all or else, what I can taste isn’t how it used to be and I don’t like it. It’s actually just putting me off food.

This was going to be a positive entry but, just lately I have had to deal with so many arsewipes, I am just sick of the UK and how it doesn’t work and the attitude of too many that they can get away with appalling levels of ‘service’ and it’s all OK. I am not going into detail, it’s too horrible for me to concentrate on to be honest with you.

Positive thought, really looking forward to Feb 1st when Dennis becomes British and then some mad crazy rush to apply for a passport the same day before they hike the price on Thursday!

I know I really need a damn holiday, the sort of holiday whereby I can actually just totally relax, I don’t have to be doing this or that, no commitments, just relaxing. I have no optimism that is going to happen.

A good selection of TV and Movies so, great net connection but, I don’t think I want communication from anyone who can stress me. Just nice stuff, friends, family.

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Two clear days

Am so looking forward to this! (No, I am not)

It doesn’t seem very exciting but, I had two clear days whereby I didn’t need to rush to the loo.

I’ll be honest, there was that remaining optimist part which said that I didn’t need to worry any longer, my belly was under control. It was lovely just ‘going’ like most other people.

Since June and getting over covid-19 I have had this issue of daily diarrhoea, several times a day. The doctor has ruled out most nasty things but I still have to wait on a colonoscopy to literally look into it better. The theory there is that all really serious conditions will be ruled out leaving IBS as the culprit. Who knew covid could bring that on? It’s shit really!

My stability today has been really poor. Several times I didn’t seem totally in control of my leg movements and was fortunate to have support to avoid accidents.

Yesterday I had to stop driving to rest for a while. It seems that a few minutes is enough to trick my brain. I don’t know how that works, it shouldn’t by rights but it does allow me to continue for a little longer.

Covid booster jab next week, most of the family are having it.

I still have a few months yet to wait on my medical stress test for my heart. I hope that finds nothing sinister. Not that a negative will explain the chest pains but it should rule out something life threatening.

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What is the difference between day and night?

For many sufferers of ME, not a lot!

I find there are two primary difference:

It gets Dark at night and not so much at day time and, there are fewer people at night.

What makes me decide to go to bed?

Lack of anyone to interact with. In short, I get bored.

How do I feel at 2am (as it is now)?

Tired but, no more tired than I felt at any other point. No, that’s not quite true, I do feel more tired but, it’s tired upon tired and I cannot think of a better way to describe that. I sometimes feel this way at 2pm so, it’s not really dictated by the time of day. Feeling this way at 2pm could just as easily happen if I have a week of 7 hour sleeps.