catch up : 31.05.2021 …

Fortnightly Catch Up 31.05.2021 …

Well what a fortnight I’ve just been through and I really don’t expect it to get much better. Until my husband, who is OoA (out of action) … returns to his former role I am doing more despite getting sicker by the day …

So please bear with …

* Don’t forget whenever you see MiA … it means I have been unable to journal anything on that day due to serious illness or just because I was unable to do anything, except keep my head above water, on that particular day.

What’s New …

We had a massive health scare. My husband who is generally very healthy has had an unplanned and emergency double heart bypass, which seemed to go well at first. But two days after returning home he got much sicker with bleeding into his lung and a serious infection and was subsequently readmitted into hospital for a further 7 days.

This has had a huge impact on me. Not only have I lost my main carer but it seems like many feel I now have to stop mucking about and get on with it by all of a sudden becoming well again. These expectations are huge on a physical level but also on a psychological level because it implies I’m taking the piss and I’m not really as ill as I say. It’s also tells me that these people do not really believe just how sick I am.

shame on them …

In actual fact it implies that I’m no where near as sick as my husband … well he has the evidence of his sickness, I don’t have the same kind of wounds and evidence, I just feel it myself … and if you listen to any real ME specialist you will find on a functional level, I am probably a lot sicker than he his right now …

ME/CFS has a greater negative impact on functional status and well-being than other chronic diseases, e.g., cancer or lung diseases, and is associated with a drastic decrement in physical functioning. In a comparison study ME/CFS patients scored significantly lower than patients with hypertension, congestive heart failure, acute myocardial infarction, and multiple sclerosis (MS), on all of the eight Short Form Health Survey (SF-36) subscales. As compared to patients with depression, ME/CFS patients scored significantly lower on all the scales, except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher.
Frank Twisk

What’s Important …

Know that until my husband is back on his feet there’s going to be a lot more MiA … days but I will get back to being more consistent as soon as I can. This blog is my lifeline …

Diary (17.05.2021-30.05.2021) …

Monday …

MiA … yesterday I had another major migraine and today isn’t much better. This is how it is with severe ME. You will find me engaged and active and maybe think, at least she can function, then I will be completely out of action for days, weeks, months.

But I will be back … I’m just not sure when … but I will always be back …

That said, when I am back it will be with a different focus. Or should I say back with my originally intended focus.

It will be about me & ME catch up …

and so instead of concentrating on my husband and his health condition and his progress, as I have of late, I will be going back to myself and ME, fibromyalgia and migraine and how loosing my carer has impacted me.

Tuesday …

MiA …

I had to go and collect our boy_2 in order for him to mow our lawn. It might not seem like much, it’s only about a 15 mile drive, but it’s too too much for my poorly body and poorly brain.

Wednesday …

MiA …

Woke up feel incredibly unwell.

So unwell that I lay in bed and silently cried.

I am really scared about where this is going to end.

But, I had to go and get my boy_2 to finish the lawn for us. We have almost an acre of garden, which isn’t much, when you have a ride on mower and are well. But, when you are this sick it’s impossible. Plus, boy_2 has spent his two days off work, working for us, which seems grossly unfair.

Thursday …

MiA …

Things are getting super hard and it all feels never ending.

People visiting my husband, wanting drinks, and to top it all off my husband offered my physical services out to others, in terms of offering a lift to our neighbours for them to pick up their car from the menders.

Like I am able and capable.

I’ve not said anything to him about this yet but that has really pushed me to my limits.

It says so much about what he really thinks I am capable of or maybe it says a lot about how much he needs others recognition above any respect he does, or does not have, for me and what he really thinks about or of me.

It made me cry …

Friday …

MiA …

I am the worse I’ve been in such a long time.

Each morning we wake, my husband is a little better and I am a lot worse.

go figure …

Saturday …

MiA …

Sunday …

MiA …

Monday …

MiA …

full on migraine …

Tuesday …

MiA …

I have been awarded a care package, consisting of a PA daily but I am not sure of the number of hours yet. The most important thing is, I don’t have to pay for it out of my nonexistent income …

Wednesday …

MiA …

Thursday …

MiA …

I am struggling so much. The more I do for my husband the more I am getting very sick and yesterday I overheard someone say to my husband

don’t worry about her running around after you, you’ve ran around after her for so many times …

This has devastated me on so many levels. Firstly, I have never let him run around after me, never ever. I am too sick to go into the evidence of this right now but I am beyond heartbroken by it. Secondly, I am so much sicker than he is and no one sees or believes  … this is so wrong and on so many levels too.

I feel like I am dying …

Friday …

MiA …

I am so so sorry but right now I can barley keep my head above water and although I’ve been awarded a care package, we live in the back of the beyonds and there’s been no uptake from a PA for me …

I seriously feel like I’m drowning …

Saturday …

MiA …

Sunday …

MiA …

I am so so sorry but I really am have a very awful time of things lately.

It will be payback for the few extra things that I have done while my carer was in hospital and while he was first home recovering.

 fragmented.ME xXx