catch up : 19.04.2021 …

Fortnightly Catch Up 19.04.2021 …

So I didn’t do too well with this last fortnight. So, I’ve decided that for the next month or so I am going to really try even harder 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 …

I am getting more and more severe migraines again and so lots of my days are simply spent in bed with the blinds closed. However, I have been trying to take a picture #FromMyWindow every single day no matter how sick I am. Hope you enjoy seeing them, and because it’s spring and gardens change so quickly in this season I’m going to continue this idea through the whole of April.

What’s Important …

Now, the most extremely important thing is that I stick with trying to stay within my anaerobic threshold so that 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 (05.04.2021-18.04.2021) …

Monday …

#FromMyWindow believe it or not, it snowed last night …

I woke at 07:15 and took my pain medications. Each time I move my HR goes above my AT, literally just turning over or the slightest movement sends me over my AT.

I made myself a latte and a large French Earl Grey tea (in my keep it warm cup). Tomorrow instead of #FromMyWindow image I’ll take one of my lovely latte and French Earl Grey tea setup. It means I only need to go downstairs once for two drinks LoL.

I’m staying in bed until I can cope with this.

I am contemplating if I should stay here all day in order to keep within my AT. How else will I do this pacing thing otherwise.

That said, I wanted, more like needed, a bath too.

morning symptoms: headache, left eye feels like it’s being twisted and pulled, painful aching upper back, all over raging flu like feeling, fast HR (just lay down it’s in the low 90s).

Anyone, who gets migraine will understand what I’m saying next. I feel as though I’m heading for a migraine so I got up and had a bath. I always charge my FitBit while I’m bathing so I’ve no idea what my HR was during my bath but after getting dried and dressed and lay flat downstairs on the settee it was between 105-125 for at least 45 minutes. Like I’d really overdone it.

How am I ever going to be able to take care of my personal needs and stay within my AT zone?

This makes me feel really sad … as I am sure that it would make anyone feel …

Sending myself lots of love and kindness today xXx

Tuesday …

#FromMyBed this is the image I promised yesterday.

I woke at 08:02 but my head hurt that much, apart from taking my tablets, I couldn’t move. Fortunately for me I woke at the right time to take my pain medications too. Yesterday, I took the full allowed amount so today, no matter how poorly I am, I am bound by the same tablet taking time pattern as yesterday.

Sometimes, when I take the full allowed amount of pain medications the following day I wake up extra early and in extra pain and apart from falling back on to aspirin or brupofen style medications I have to suffer along with ice alone until the time arrives when I can safely take my next tablets. Because I take pain medications daily, and I already have a damaged liver, this is really important in order for me not to accidentally overdose or damage my liver any further.

I lay very still and very quiet and I needed the loo, some ice packs for the top of my head, and a drink too but I just couldn’t move because I felt so poorly. It took till almost an hour later when I could move and I seriously needed the loo and a drink too.

morning symptoms: 8/10 pain level on top of my head, 10/10 pain level in my upper back, 7/10 pain level all over my body, sore throat and ‘I’m poorly sick’ overall feeling. 

I just remembered that I had some horrific scary dreams last night and I woke at 02:15 feeling really afraid and unable to get out of bed because of fear. I don’t generally recall my dreams and I almost never have scary dreams.

I stayed in bed until 15:30 and got very unwell again after my tea at 18:30.

Wednesday …

MiA …

#FromMyBed 07.04.2021 … feeling so poorly today. I may not even be able to do my symptoms until much later or even until tomorrow.

I woke at around 02:30 after another awful and realistic dream. Weird, because I honestly don’t normally remember my dreams or have lucid dreaming. But I’m unsure as to whether even the waking up was part of the dream and I didn’t actually wake at all. There’s no evidence on my FitBit sleep record of any prolonged wake ups.

That said, I feel like I have had a very broken and uncomfortable night with barely any sleep. Yet, my FitBit tells a different story. My body says I slept like shit and I am on the edge of a migraine. My sleep report says you had a good sleep.

morning symptoms: woke properly at around 06:15 and I felt seriously sick, like I have something quite serious. I expect that it’s nothing more than PEM, but it’s all relative and PRM is still serious and shows that I’m not getting out of this crash soon or by resting.

Thursday …

#FromMyWindow – YaaY I am up and downstairs before 09:30. This image is taken from our lounge patio door windows. It’s another rainy day in Cumbria, but it’s still beautiful too.

The reason for me being up and about, if not dressed, is basically because we’re having McDonald’s for breakfast LoL … there’s nowt like food to shift me.

* I love food. However, my ability to digest food has become extremely poor since becoming more severe with ME. So, I don’t often have breakfast or lunch. Regarding McDonald’s, it’s a treat that we plan for, while I can still manage to digest food, so that I still feel a little normal.

That said, I am still in my PJs and that’s ok. PJs in the car is ok, isn’t it? And of course I will pay a price for eating so much and so early too. But, some days you take the price and enjoy the pleasure.

Right? Well I do anyway …

morning symptoms: woke at 06:20 with a massive headache. Took my tablets, got an ice pack, and lay still and quiet for an hour. I had massive head, neck and upper back pain with full on nausea. I had moderate body pain. 

Once I could cope with the pain levels I got my usual drinks (a latte and a French Earl Grey) and took them back upstairs. The husband was still in bed, which was very unusual, and the smell from our room was really affecting me so I opened the window an inch, it was raining. Then I took another very gentle hour to come round fully.

Got up and went to McDonald’s. The husband drove and I just had my PJs and a cardigan on. My HR was crazy the whole of the time.

By the time we got home I felt drugged tired and my HR was in the 120s. I fell asleep and woke four hours later. HR below AT, but only just.

While eating my tea, half of the tooth that I’m having extracted next week fell out. It hurts. It cut the side of my inner cheek. I am just so poorly. The whole of me is falling apart.

Friday …

MiA …

#FromMyWindow …

I am so poorly today that I had to get my husband to open the blinds so I could take a picture. This is what I am looking at from the one open blind …

I didn’t get up until 18:45 today and was presented with the sad news that HRH Prince Philip had died. RIP HRH and much love to The Queen and the Royal Family too in their loss and grief.

I have a treat for you, tomorrow’s pictures are from outside tonight. My husband took them at 18:45 as I came downstairs he messaged them to me and I thought I’d use them for tomorrow’s post.

My inside cheek from where my tooth has broken off is swollen, raw, and painful, more so that the actual open tooth. I have it extracted on Wednesday, preplanned, and so I really don’t want to go to the dentist now. I’m guessing this tooth is why I’m feeling extra poorly today.

Saturday …

MiA …

#FromMyGarden (yesterday evening) …

Woke up the first time at 04:15, too early to take my pain medications as I have to get through the whole day.

Woke again at 06:30 and took them and went straight back to sleep. In too much pain to face the day.

Finally woke at 10:30 feeling much better but in lots of pain and my HR is crazy. Just lay in bed it’s in the 100+ so I’m not moving just yet. May also need to take second lot of pain medications, which doesn’t bode well and probably means a day of pain and full allocation of pain medications …

Sunday …

MiA …

#FromMyBed 11.04.2021 …

Another day in bed …

So poorly …

Got up around 14:00, maybe later. I am having a really prolonged shit time of things lately.

Monday …

Had a very bad night last night. Was extremely insomniac and didn’t get to sleep until 05:00 this morning.

Look at these gorgeous gorgeous dr martens my oldest boy bought me … I love love love them …

I’ve no idea when I’ll get to go anywhere to wear them but it’s things like this that give me hope … being a woman who loves clothes & shoes these are enough to make me need a well day LoL …

I woke at 07:05 and took these photos then had to sleep again until 12:00. But, oh how lovely it was to see these when I woke again.

I have to have a bath today or the smell of my hair will knock the dentist out on Wednesday … so sometime later I will be having a bath.

I will also start my twice weekly coronavirus tests (because I’m not being vaccinated I think this is a good way for me to manage my status).

I had my bath and felt utterly dreadful and had to just sleep until teatime.

We had tea and watched a bit of TV. I came to bed at 22:00 and fell asleep straight away.

Tuesday …

Woke at 06:00, took my tablets and slept until 10:00. I don’t feel too bad considering I had a bath yesterday. But, I’m guessing by the anxiety I’ve got it’s adrenaline from anxiety about going to the dentist tomorrow and also worrying about having a migraine and having to either cancel or go there very sick.

The nerves and anxiety started today. I am so scared. The dentist is one of my biggest fears. Actually no, any kind of intrusion on me creates anxiety and fear.

I have to keep telling myself that some people, who have cancer, and are so poorly with ME they have to be tube fed, and loads of other debilitating conditions, have to go through worse than this. They really do. And so I just need to breathe … and keep breathing long, slow and deep. I can do this!

Wednesday …

Dentist appointment (for two dental extractions) (14:55) …

I thought I’d share a throwback image with you. I know the sky is ominous but look at that perfect rainbow.

I find rainbows are so symbolic for me (I’ll tell you about this another day).

This was taken on 31.03.2017, the birthday of my deceased dad, and just prior to starting our house build.

I haven’t been able to write anything much today, but once I return from the dentist, or tomorrow if I’m too poorly when it’s over, I will fill this in with the whole physical, psychological and emotional experience.

This is so hard for me … so really hard … it’s not my old dentist who I was used to neither. It’s a new one that my husband claims isn’t as good as our old one …

before …

I am so afraid. It’s like a phobia it’s that bad.

I am sweating, my HR 120+ (doing nothing just lay there), I have a headache that is raging, my feet and lower legs are freezing, yet my upper back and upper half of my body is dripping in sweat, and I have palpitations.

I arrived at the dentist at 14:40 and checked in at 14:47. I waited until 15.10 to go in to the dentist.

At one point, I almost said to the receptionist if I don’t go in soon I’m going to have to leave. I felt sweaty. I felt dizzy. I felt faded in my head. I was so scared and I’d been like that since waking up.

It was all way too much for my poorly body.

during …

The new dentist was very nice, extremely kind and very reassuring and so was his lovely kind assistant. He explained everything to me and injected the anaesthetic at 15:15 and before the needles were out of my gums the teeth were numb. He hardly believed me.

By 15:25 I was leaving with both teeth gone. So I’m guessing it was a relatively easy procedure.

After having the anaesthetic my HR went to 157, but the dentist said that was OK, some people go from 60+ to 150+, mine went from 125+ to almost 160, which was fine.

after …

I am home now at 16:15 lay down on the settee. My HR is crazy but I no longer feel anxious. I already have pain around the extraction areas, so I know the anaesthetic is wearing off already.

I feel so exhausted.

I have a nasty headache and so I’m keeping quiet now.

I haven’t eaten anything yet today, but I need to wait for two hours to eat and drink, and really to be honest I don’t feel hungry I feel poorly.

It’s 17:20 now and the numbness is finally shifting from my tongue. It still feels thick, but I can feel a bit more of it now. My head is still mega even though I took my tablets 30 minutes ago.

Thursday …

MiA …

Friday …

MiA …

Saturday …

MiA …

Sorry I have been extra unwell. Probably because of all the adrenaline, my own and the injections …

Sunday …

MiA …

Sorry but I’m still out of action …

* just a reminder that I am fundraising for The ME Trust UK as part of ME awareness 2021. I am going to read 10 books in 10 months and document them on the ‘ten books in ten months …’  blog page.

Please click the link above to read more about this and to also donate and help me raise as much money as we can to The ME Trust UK.

 fragmented.ME xXx