catch up : 05.04.2021 …

Fortnightly Catch Up 05.04.2021 …

So I’ve decided that for the next month or so I am going to really try and do the activity management using a HRM that I wrote about on my ‘anaerobic threshold & ME …’ page. Because, I know for sure if I carry on like I am there won’t be any tomorrows.

* 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 …

As well as prescribed pain medications, from my GP, I also take SYNDOL (original). They have an extra ingredient that acts as an anti-sickness and anti-allergy and I really need them. But, for the last six months I’ve struggled to get them and last week I found out that stock has ran out and they won’t be back on the shelves until 2022 (no specific month stated). I generally take two a day, and up to four when I have a major migraine. They were off the market some time in 2015-2019 and my migraines became really violent. However, since, they’ve been available again I’ve stopped vomiting because of them (I’ve not committed for over 12 months now). 

What’s Important …

The most important thing is that I stick with in my anaerobic threshold so I don’t make myself any sicker. Over the last few months I have actually felt like I could be dying, and seriously I don’t want to die. So, even more seriously, I have to change how I am handling this illness.

Diary (22.03.2021-04.04.2021) …

Monday …

MiA …

I’ve been up all night with a massive allergy. Because of the lack of SYNDOL I’ve been trying to get by on 1 a day and because mornings are my worse time I’ve been taking it then. But since doing this the allergies at night have been growing and tonight they were unbearable.

Tuesday …

MiA …

I found an online chemist that had some SYNDOL in stock. So, I bought 30 in my name and 30 in my husband’s name. I need to source at least 365, but I’m not expecting them to be back on the shelf early 2022, more like late 2022. Therefore, I believe that I need to source 720 so I have enough tablets for, at the very least, 1 a day but for bad migraine days I need up to 3 each day and I have at least two days each week like this. So, really I need a further 416 tablets to see me through two complete years. This is devastating for me because nothing, in recent years, has worked as well as these do and I can’t find them in stock anywhere.

Wednesday …

MiA …

M I G R A I N E   A G A I N   . . .

Thursday …

MiA …

Still in bed. Second day of migraine! In the afternoon, while I was still in bed, someone from my surgery rang me regarding my ME appointment. It was a very wimpy appointment where it felt like she almost wanted me to say no thanks don’t ring again after claiming how unwell I was to her. This is the woman that stopped my CCG from referring me out of the area for specialist ME care. And now she wants to discharge me. FFS … I wish I had the anger or the backbone, whichever, that was needed to to tell her that because of her I am now paying for specialist ME care that I’m actually entitled to through the NHS but didn’t get. I am angry but I also want to cry. Why oh fucking why can’t I ever get my needs met?

Friday …

MiA …

W T A F    a n o t h e r   m i g r a i n e   . . .

l i k e   I   a c t u a l l y   n e e d   t h i s   . . .

Saturday …

MiA …

And yes, again I wake with a major headache. Not a full blown migraine but equally as painful without most of the neurological symptoms.

my life feels really shit right now …

Sunday …

MiA …

I am going to try and put my coat on and wander round the garden every single day next week. I will take a few pictures and share them too …

Monday …

MiA …

#FromMyWindow this is a lovely picture taken from my bedroom window. As you can see, it’s been raining a lot in Cumbria and our river water level is up.

I stayed in bed untill tea time. And, I only opened my blinds to take this lovely photo for you. The rest of the time I had to have the blinds closed because of light sensitivity. But a glimpse of this view is enough to set me up for the day.

Tuesday …

MiA …

#FromMyWindow this is today’s lovely picture taken from the same bedroom window as yesterday. As you can see, it’s been raining a lot in Cumbria and our river water level is even higher today. Other parts of England have been having a mini Easter heatwave, but not here in Beautiful Cumbria, it’s still raining here.

Today, I left one of my blinds open a bit longer, maybe an hour. I am still massively unwell but I’ve given up asking ‘what did I do’ because right now I flare and crash for no apparent reasons.

Wednesday …

MiA …

#FromMyWindow this was taken from the same window as the previous two images as I’m still in bed. Same Beautiful Cumbria.

I am still super super poorly. I think I’ve an idea as to the problem. Firstly, even though we’ve not left the house, we’ve probably had something because even my husband has been under the weather. Secondly, I’ve spent too much energy on the blog. Being pedantic I wanted to get everything looking good and matching. Plus, I wanted to get enough content and ideas on the go so that it didn’t look bare and new. I think that too has taken its toll. So, except for the ones already in progress or completed I will begin to post one blog a week, and only if I can manage it.

I will also try to post an image from my window or from outside, in actual person, regularly. You might get sick of the same views. But, I don’t ever get sick of my view, so maybe you’ll enjoy the changes you can see, like I do.

I cannot remember when I had my last bath but of late I’ve been sweating so much and felt like I could smell myself. Everywhere I went I could smell apple & pork sausages. Not bad you might think. But I was making myself feel sick. Plus I have eaten sausages in months, maybe years as they make me poorly.

So, I had a very necessary bath. And, from the point of getting out of the bath and putting my FitBit back on my HR was above 100 until about 21:00.

Thursday …

MiA …

#FromMyWindow today’s Beautiful Cumbria photograph. The sun came out yesterday afternoon and dried up the river overspill puddle. I wanted to wait for sunshine again to take today photo but I really couldn’t as today I have been simply too unwell and had to quickly take the picture and go back to sleep.

Really missing in action today, massive migraine, and ironically enough I have a headache forum meeting to attend on zoom. Not sure if I’ll make it but if I can turn me off then I may do it. Will let you know. And when I can cope with the brightness I will take a photo from my window again.

Today, I sold two of my items that have been up on eBay forever and I had to choose between going in the office, which is upstairs, and arranging postage for these or going downstairs and getting myself a drink. I choose the postage over my drink because that’s what I do. I always put others’ above my needs. Silly girl.

Friday …

#FromMyWindow today’s image has finally been taken with a cast of sunshine. Look at that beautiful blue sky.

And, I feel like I can enjoy that small amount of brightness today. Although, I’m still super unwell I am much improved over yesterday and some of my previous days. Only my ME friends will totally get this because even though I’m improved I’m still very seriously unwell. Yet, that small improvement makes me feel happier and gives me hope.

That said, I’m still in bed.

Saturday …

MiA …

#FromMyWindow … I’m simply too exhausted to add anymore words today. Sorry xXx

…

Sunday …

MiA …

#FromMyWindow … I’m simply too exhausted to add anymore words today. Sorry xXx

…

 fragmented.ME xXx