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.

23
Sep, 2022

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.

September Health Update

I got a letter today from the specialists in CFS (condition I have) and it effectively said, after a year of waiting … hey, waits for our appointments are really long, here, have this leaflet!

Guess I have to love that I have the NHS here but, the slogan is … free at the point of need.

Except, this used to be the case at inception in 1948. Over the years this has been eroded down to ‘if you live in the right place, at the right time, and have some money, it’s free at the point of need’

The reality is, it’s now rarely entirely free. Gone are the time when the local doctor did house calls or would see anyone the same day if they turned up at the surgery. Many patients give up trying with many surgeries adopting the rule that all patients regardless of urgency must call at 8am and when the appointments are all gone, try again the next day. The result of that is, those who may be really weak don’t get appointments whilst the reasonably fit do. Indeed, potentially someone with cancer symptoms doesn’t get seen for weeks whilst they are beaten to the appointments by those wanting a few days off work. It’s totally crazy.

No medical service should rely on luck to get seen. No wonder Emergency departments are always full, all those who cannot get to see their GP!

Then we have hospitals. Originally, most were just a short walk or bus ride away from their hospital, for those who drove there would be parking onsite or nearby and it was free.

Not any more, for many it can take hours on public transport and most car parks charges start at £3+

Anyway, enough generic chatter about the state of the NHS in 2022!

I was struggling prior to getting covid in June this year (22). Covid itself wasn’t really any worse to me than a cold, I have felt much worse for sure. However, once I checked as negative the real problems started.

  • My temperature won’t regulate, I get hold and cold regardless of the outside temperature or my body temperature. It is 20°C in here just now and I am sweating like it’s 30°C.
  • My stomach cramps and I have to ‘go’ quite suddenly and it makes a mess
  • My stamina has taken a nosedive.
  • Eyesight really is very changeable
  • Chest pains

None of those has got a solution from the GP. Some they say ‘long covid’ which is effectively the condition I already had so, just adding some more symptoms.

With my chest pain I am waiting around 3 months for a thorough scan. For the tummy they plan on shoving a camera up my arse but, I got at least 3 months before they give me an appointment and who knows how long that will be?

With stress my energy level drops rapidly. Any sort of stress. It is why I try to impress on others , if I ask you a question, answer me. Being fobbed off raises my stress. I am also finding myself acting as an inbetweener passing messages on for people who could just speak directly to each other. Each time this wastes even more energy I cannot spare.

You must understand, I don’t get energy like ‘normal’ people.

Let me give you an example:

On Monday I can get up at 8.30am and when I wake I feel like it is 2am. I will then push through the day trying to keep going but, my mind is so active with the things I couldn’t physically achieve that I cannot then sleep until I wear out my mind.

My mind is used to life feeling like it is 2am, it never gets better than that and so, it’ll likely be literally 2am (or later) before I get to sleep.

Tuesday I am up at 8.30 but it feels like 2am, yes, I feel the same as I did before I went to bed. I will push through the day but hit a problem I was not expecting at 10am. By 11am it feels to me like it is 5am and I didn’t sleep yesterday either. I push through but, I am not able to concentrate on anything and everything bothers me. Pain, talking, listening, light, sound, everything. I go to bed around 2am

Wednesday I wake up 8.30, it feels like 2am for the first half hour and then I feel that 5am feeling creep in over around 5-10 minutes, it’s very clear to me when it is happening. I barely function on any worthwhile level and concede to a nap at 3pm. I wake at 4.30pm feeling like it’s 3am

This just keeps going on and on, one similar situation after another. I honestly cannot remember what it feels like to be actually properly awake.

Throughout this, I look normal. People life at my failed attempts to talk, some joker may ask if I have had the one too many. Yes, that’s so very funny (not). Others will ask what is bothering me like, if I can find that one thing it’ll all go away. They mean well but don’t actually understand it. many will have known me how I used to be and won’t accept this change, they keep burying their heads in the sand waiting for me to just be ‘me’ again.

What I need is actual physical help. If I look like I am struggling you can betcha I was struggling way before that.