a week with ME … Q1

I know I keep my ‘fortnightly catch up …’ journal posts, but this blog post is going to be more in-depth than those. It is going to be a no holes barred, fly on the wall, week with ME. So expect swearing and talk about death & dying, and possibly this might lead on to wanting to die and suicide references.

One thing there won’t be, even though you’re spending a week, mostly in bed, with ME, is sex. There won’t be any sex or sex references, except for this one LoL …

   . . .   a   w e e k   ( s a d l y   m o s t l y  i n   b e d )   w i t h  M E   . . .   

day 1: Monday … 

It’s a Monday and I woke at 07:15 with my typical ME symptoms. Like I have flu, a bad headache, which is not a migraine but almost as painful but without the neurological symptoms I get with migraine. I take my pain medications and lay there as still as possibly breathing deeply and thinking as peacefully as possible, while I wait for the medications to do their magic.

During This first hour it’s crucial I stay as calm, peaceful and still, both physically and psychologically as it can mean the difference between getting benefit from my pain medications and them not working at all.

An hour later I get myself a latte and a travel mug of French Earl Grey tea and take them back to bed.

A further hour later I decide that today, even though I still have pain and my left eye feels like someone is twisting it out of its socket, I must have a bath. I’ve been quite sick and sweaty of late and my sense of smell is keen and I smell myself. So a bath it is.

I’m torn between a Molton Brown bath soak, that smells fairly strong, or something that doesn’t smell at all. The smell will mask the smell of me but might also make the eye pain worse.

I usually get the eye pain as part of cluster headaches. I have oxygen for these but really strangely enough I find that taking oxygen exhausts me further.

I opt for the Molton Brown smell as I really can’t stand my own smell.

That’s it, that’s me done for the day now. My HR is between 100-150 and I’m just trying desperately to recover. The rest of the day is spent lay flat on the settee kind of looking out of the patio windows.

I ate tea, my husband makes this for us each night, at 18:00.

At 20:00, after I brush my teeth downstairs, we watch 2 hours of TV, which is too much for me today and by 22:00 when we go to bed I’m feeling quite poorly sick again.

I listen to an audio book and fall asleep quite quickly.

day 2: Tuesday … 

Woke with a migraine. Took tablets and went back to sleep until 14:00, waking regularly and taking tablets four hourly.

The thing is I half knew yesterday it, the migraine, was coming. I never said anything above because I was hoping not to be correct. More and more I’m able to tell the night before that I will have a migraine the following day. But, I’m not always right, so I do have hope when I get the migraine premonition that I could be wrong.

As well, I am always extra poorly the day following a bath. The energy I use, which I don’t actually have, just makes me sicker and depending on my starting state of none health (I can’t say health here because I honestly don’t have any), anyway depending how unwell I am when I have the bath can mean the difference between feeling more poorly or triggering a full blown migraine later on that day or the following day.

I got up and made my first drink of the day, a latte, at 15:00. I brought it back upstairs to have in bed.

I stayed in bed until tea time at 18:00. Ate my tea and we watched an hour of TV. This made me really unwell again and I had to go back to bed for the night.

day 3: Wednesday … 

Day 2 of my migraine. Yesterday, because of the migraine I took my full allowed amount of pain medications, which include paracetamol. Paracetamol is the drug that causes the most accidental overdoses in all over the counter medicines. Because of this, and because I take them daily so will have a build up inside me, I always stick to the rules. Plus, sick as I am, I actually want to live and love being alive.

I woke at 05:30, which was much earlier than yesterday. So, I couldn’t take any medication until 07:15 (as discussed in the preceding paragraph) and I still had a lot of pain. My husband got me two ice packs, one for my eyes and one for my head / neck, and I lay and listen to a ‘calm’ meditation over and over until I could take the pain medications. I then slept, except for tablet times, until 14:00 again.

I woke at this time feeling much better and I got up and sat downstairs with a latte.

I lay flat on the settee for the rest of the day until tea time, 18:00.

Because of my experience last night, we didn’t put the TV on until 20:00. We watched an hour and then I just lay quietly on the settee until 22:00, when we went to bed.

I have again taken the full allowed amount of pain medications so I need to stay asleep until at least 07:15 so that I can take my tablets as soon as I open my eyes. There’s no point in hoping I won’t need them because that is an extremely rare occurrence.

day 4: Thursday … 

Awful, awful day. I’m writing this from memory because on the actual day I couldn’t do a thing but lay there and look at the bedroom ceiling. Every turn over in the bed was too much never mind each trip to the loo.

I woke exceptionally early as I usually do if I have high pain levels, or a migraine. On first waking it was too early to take my pain medications. Not because of the previous day’s medication time table, I couldn’t take them, just because if I took them that early, then how would I get through the day.

On a high pain day it’s more important than ever for me to space out my tablets as much as I can so that I can get through the full day. So I went back to sleep and at 06:30 I woke again and took my first pain medications and went back to sleep.

Today, I spent the whole day in bed. No latte, no tea, no warm drink just a bottle of Evian, pain medications and plenty of ice packs.

I did listen to podcasts, and a specific radio drama, true story, it’s more like a monologue (actually I do not know want to call it). Whatever it is, I listened to this several times today. I often revert to this when I need to fall asleep.

It’s called Goodbye to All This …
it’s a story about losing the man you love and going on without him; about raising two girls through grief, being alone and surviving – mostly intact.
The lady who wrote and presents it is called Sophie Townsend. She has an incredibly soothing voice. While the whole story is captivating and moving. It makes me cry but it also soothes me too. It’s a sad but hopeful and very honestly real story.

Whenever I’m struggling I will often revert to listening to this. I sincerely hope the BBC never take it down. Some days, it’s a life line.

Today was nothing more than survival. Getting through days like this are where I have to completely let go of any pretence and accept this is the reality of how poorly I am actually am.

YIKES … I’ve done it again, I have made a mistake with my pain medications and took them an hour too early. FFS how many times will I do this before I accidentally overdose? I have an app that I use, but when I’m as sick as I was today I often can’t look at my phone screen and take my medications by memory. My memory was I only took six yesterday, but in fact I took the full eight. Oh, well it’s now Friday, as I write this day retrospectively, and I’ve just realised today what I did yesterday and I’m still alive.

* note to self … always always use your medication app, but especially when you are extra poorly …

day 5: Friday … 

Better than yesterday, but not by much.

In bed all day. Blinds shut.

Actually, no I take that back. Today I’ve had latte, French Earl Grey tea, food, and chicken Kiev and chips for my tea. And I was able to catch up with the blog post. I don’t often do timescale posts because I can’t work to order I need plenty of leeway, which is why on my ‘fortnightly catch up …’ blog posts there is the MIA … option used frequently. Extremely useful for me, but it also gives you, the reader, a clue as to days when I do bloody nothing at all. Which seems to be most days I’m afraid.

I’ve also had my full allocation of pain medication for three days in a row now and today is going to make it four days in a row. Writing this has just made me realise I took my pain medication too early yesterday, when I was extra sick. This is bad for my liver but also has the potential to turn into accidental overdose pretty easily because I take pain medications that include full dose paracetamol every day.

Paracetamol is both acutely and accumulatively toxic. Toxic doses of paracetamol may cause severe hepatocellular necrosis which may ultimately be fatal. Liver damage is maximal 3 – 4 days after paracetamol overdose. Therefore, even if there are no significant early symptoms, patients who report taking a paracetamol overdose should be transferred to an acute hospital urgently.

Boy do I hate this illness.

18:00 : teatime and I smell so bad. So I quickly went into the bathroom and changed my smalls (LoL BIGS), and had a very quick mini wipe wash, so I could cope with myself and I didn’t offend the hubby. I’m exhausted now. Can’t eat my tea yet. My HR is mental at above 150+ just because I did that little bit of personal care.

day 6: Saturday … 

I feel so poorly and so useless and I want to share this with you all. I hope by sharing it you who are poorly will feel less alone and if you share your own personal experiences we may also find how we feel, and spend are days, are quiet normal for people so poorly.

I think today I have to push and have a bath and wash my hair. I honestly cannot remember when I last washed my hair. And even though I don’t feel as though I’ve gotten over the last few days yet, I do feel I must get in the bath and wash away all the sweat.

We do have showers in the house but they are not in use (that’s another very long story), and what it means for now, and the past three years plus is that I have to use the bath. Bathing is quite exhausting for me. I get through it all, and often scrimp on bits, but by the end I’m totally wiped out and know the next next day I will have lots of pain, bad head pain, maybe even a full on migraine. Because of this I don’t often bathe. I think if I had someone to prepare the bath and clean it for me afterwards I may take more baths. That said, I do find I get eczema and dry skin these days, and so each bath strips my natural oils and I have to replenish them with body creams (if I had a helper I might try a bath oil every other day to avoid this and only wash my hair in the bath once a week). I really couldn’t let anyone wash me or cream me (never, well not yet anyway, but with each drop in ability I find myself letting go of the things I’ve previously said never about, so who knows what’s next …).

mini update: Bath done. Clean PJs. Wet, but clean hair. Totally exhausted. Just lay in bed listening to my HR buzzing away to let me know I’m over my AT.

I fell asleep and slept until teatime. Got up. Ate tea. Watched two hours of TV. Back to bed by 22:30.

day 7: Sunday … 

WTAF … mega mega poorly. No migraine but full on ‘I’ve got something serious’ feeling.

I went downstairs at 10:30. Stayed on the settee all day. Managed to take three lots of pain medication (six tablets in total), which is excellent considering how I feel.

By teatime I felt very hungry and ravaged my food. Watched TV for three hours and came to bed by 22:30. WoW am I really living the life and living it up right now LoL …

what kind of a week was this …

This has been a not so goodish, not the worse, but typical, kind of week for me. I live my life in pain. I take pain medications every single day. But some weeks, everyday is like Tuesday and Thursday and by the end of it I just want it to end or for me to die peacefully in my sleep. I accept these feeling as only natural, because it’s horrific living like this, even on my good days. So, too many bad days and I just don’t have the skills needed to want to keep going. My hope is not strong enough or it is fading.

That said, please don’t misunderstand this post. I am in no way actively suicidal. I’m just exhausted and struggling with the skills of wanting to keep going while in so much pain and exhaustion. Finding, life and enjoyment and, I guess, hope when you don’t have much to live for is difficult.

follow up …

I think I may do one of these ‘a week with ME …’ blog posts quarterly (one every three months). So if I say this is the March one, just so my month coincides with a year as I understand it, I will be due the next blog post at the end of June, to be posted maybe beginning of July.

‘a week with ME …’ series is now scheduled (March, June, September, December, to be posted either end of the corresponding month or at the beginning of the following month).

a special note …

I have decided I will turn this into a new feature series. And so I don’t get confused, once this particular blog post is complete I will change the date to 31.03.2021 (it just helps me and my awful memory see a date pattern and know where I’m up to) and post it. You can then expect one on the last day of March, June, September, and December each year.

Let me know below what you think …

 fragmented.ME xXx