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A typical day 

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Yesterday was a typical day. With me exhausted although I managed to do very little.

Morning :  

Woke at 7.15 am.  Had a cereal bar and water for breakfast. (Keep these by the bed.) Then sent a few text messages. Then had a quick look at Twitter (thats usually where I get any news about whats happening in the world). And re-tweeted a few tweets by other people to help raise awareness about ME or CFS. I don’t manage to talk to people on twitter much. It’s usually too exhausting for me. But retweeting some things makes me feel I am doing something. Taking part. 

 By 9 am I was pretty tired and that was all I had done. Oh – and I had brushed my teeth too.  The headache, which had started after about two minutes of using my mobile phone, was now quite bad. (Even thinking and typing a text can be an exhausting activity.) And the exertion of brushing my teeth had made me out of breath and the movement had made the headache even worse. I had to give in and rest. Lying down in bed again. And took painkillers. 

I had to rest in bed until 3pm. Lying down, doing nothing, no stimulation at all, sleeping much of the time.                   6 hours rest/sleep needed after 90 mins of “activity”.                                                      I put activity in commas because in no normal well person’s world would it take 90 mins to send 4 texts and 4 retweets on twitter. And brush teeth. 

Afternoon :  

Got up around 3 pm.                           Managed to freshen up using body wipes (wet wipes). And got dressed. Eat a banana and a babybel cheese for lunch. And drank more water. Lots of water. As just the exertion of freshening up and getting dressed made me out of breath and thirsty. And I was tiring again.                             Tried to fight the urge to rest – as I was hardly up any time. Tidied up the bedroom, opened window and folded the duvet back to air the bed.    Forced to rest as now very tired, even more out of breath, and chest heavy. Plus neck pain. 

Sat on sofa in living room for about an hour or more. Just resting, with neck and head propped up and supported with cushions (to try to ease neck pain). I was so tired again that I wanted to lie down on the sofa. But the feeling of weight on my chest got worse when I tried this.

By 5 pm I wasn’t really feeling much better. But I needed to eat something more. A sickly headache was starting up,  and I was aware that I hadn’t eaten very much today. Which was probably now causing the headache, or making it worse. (I always feel awful if I go too long without food.)   

In the kitchen I just put some cheese and cold ham on a plate. With some cherry tomatoes. And a muffin. Ideally I would have liked to make a sandwich – but I couldn’t stand long enough to do this. So it was a case of just grabbing what I could.  After eating the food I felt a bit better. And was able to make a cup of tea.  This helped ease the headache a bit  – but the other symptons were still there. 

I wanted to do something (anything) to try and distract my attention away from the symptons. This isn’t easy to do. Because doing anything physical is very hard with the chest symptoms. And usually increases them and I end up even more breathless with a worse “weight” on the chest. Or a tight restricted feeling.  Reading wasn’t possible as I knew it would trigger more headaches. And it is hard to read and remember any of it with the level of “brain fog” that I have with ME.  Watching any TV was out of the question too. As i couldn’t tolerate the sound, or any bright colours or movement on the screen.   

So I eventually decided to listen to a recording from a website from an American Life Coach/trainer/motivational person. I had come across this on twitter and had saved the link, as thought it might be helpful.  To be honest, I have probably saved hundreds of interesting looking links to things over the years on twitter. But I haven’t been well enough to read or listen to most of them.                                             With ME – the gap between what I would like to do and what I can actually do is huge. And a big source of frustration. 

Early Evening : 

I listened to the 30 min recording. And it was good – I liked it. I immediately forgot most if it of course (damn brain fog . . .).  But I will listen to it again for sure.  It was about taking full 100% responsibility for everything that has happened in your life. Especially the bad stuff. And losing any kind of “victim” mindset.  It was good and I can definetely see the value in this. As I know I am holding onto a lot of anger, resentment and distress. And I still have so many nightmares about the bankruptcy (which is still ongoing). And about bad experiences with medical people. Plus the attempted PIP claim and terrible experience with Atos (nurse from Hell) just about finished me off. 

But maybe even listening for 30 mins was too much for me. Not only did my headache and neck pain come back with a vengeance, but my head was spinning. And my mind racing with the memories of all the bad things that have happened over all the years I’ve had ME. All the losses. All the medical mistreatment. The possibly ill-advised Bankruptcy (bankruptcy in reverse really). My marriage almost breaking (several times) with the strain of everything.   Then my brain was running through memories from the Property years – some rubbish letting agents, bad tenants (one actual tenant from hell), scum tradesmen, etc etc.  All bad memories. 

My energy just totally crashed.              And I had to take more painkillers and get into bed. Just as my husband got home from work. Luckily he would make the dinner. (He always has to make the dinner, and I’m really grateful for this.) 

I didn’t manage to get up again until 11.30 pm. Still felt rough but was hungry and thirsty. Hubby had eaten his dinner ages ago and was about to get ready for bed. So I warmed my dinner up in the microwave and eat it at midnight. Not ideal . . .  But very grateful that hubby had cooked it. And also grateful (or relieved) that I had been able to get back up and eat.  There have been many nights I couldn’t do this at all. And had to eat in bed, sometimes in a lying down position. Or just too exhausted to eat at all.  Over the last few years. 

But limited and small as this day was – I would rate this as an OK day. Out of a choice of Good, Bad or OK. 

I have had much worse days than this over the last few years. 

And I have had better days too.

And hope to have more better ones. 

But it shows how far removed our lives are from normal levels of ability when we have ME.  In what other illnesses  would a person class their day as OK when all they could manage to do was : 

Send a few texts messages, be on twitter for 10 mins, up and out of bed for only 3 or 4 hours (much of this resting),  eat some food, listen to a 30 min recording, talk to husband for about 20 mins.

Its not much . . .                                           But as I mentioned – I have had many poorer days than this. And I’m very grateful for the better days. 

 

Gratitude 6 : Red Roses

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A short post – as recovering from a rather bad week.
But I’m not going to write about that.

Instead, here is a photo of some lovely flowers from my neighbour. This was so thoughtful.
Aren’t they beautiful ?
Such a deep vivid shade of red.

How nice it was to water them this morning and take delight in how they have bloomed.
Isn’t nature amazing . . . . ?

Gratitude 5 : Newlands Park

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Had a walk in a lovely park the other day. In Glasgow’s south-side.
Its called Newlands Park and is a lovely smallish park. With lots of interesting areas and plenty benches to sit on. It was quiet with just a few people walking their dogs.
It was just heaven – breathing in the fresh air, enjoying all the greenery and some flowers out, and listening to the birds tweeting.
Just heaven.
I need more of this for sure . . . .

Grareful to have such a nice park close to home.

Gratitude 4 : Bagels made by Hubby

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Grateful for – Bagels with cheese and ham, with some cucumber and baby tomatoes. Made by my husband.
And a cup of tea.

Had this for breakfast this morning. And really really enjoyed them, especially as I’d eaten nothing since yesterday afternoon.
Was starving . . . !

Reason for this was bad headaches resulted in me getting into bed early evening. With painkillers. And the plan (ie. hope) that a couple of hours lying down, comfy with eye patches on would do the trick.
It did – eventually.
But I was feeling exhausted after just printing 6 emails off in the afternoon. I find it too hard to read things some days unless its in print form. But just looking at the laptop screen for too long, plus the noisy printer triggered off the dammed headaches. Anyway I ended having to stay in bed right thru to this morning.
Hence no dinner last night.

But don’t want to dwell on that.

My point is that I’m always so grateful for my hubby making these bagels for me. (Although they’re meant for my lunch, not breakfast.)
He always makes them the night before while making his lunch rolls for work. He has been doing this for so long now he kindof does it on autopilot.
And I’m very grateful for it . . .

Gratitude 3 : Blueberries for breakfast

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Ok, another not very exciting photo I know.  But I’m doing my best – bear with me . . .
Today I’m grateful for enjoying a nice breakfast of blueberries with yoghurt.
Healthy and refreshing , and tastes lovely too. And easy to make, which is extremely important when energy is limited.
And they say blueberries are a superfood. Hoping for some super effects . . . !

Gratitude 2 : Tea

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A day of being in bed almost the whole day, after just a small amount of exertion in the morning. (Some texts then checking emails. And opening mail. Not much else.)
So frustrating . . .
But I’ve had worse days. Almost no headaches today – and I actually feel that I’ve had a lot of “good quality” sleep. And I’m grateful for that.

Now having a nice cup of tea made by my hubby.
And teacakes.
In this pretty mug which was a present.

Enjoying . . .
And tomorrow is another day.

Things To Be Grateful For

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I’ve mentioned before, somewhere on this blog, that I sometimes try to write gratitude lists. I’ve been doing this off and on for years.
You know, 4 or 5 things I’ve been grateful for at the end of the day. Most often – at the end of a bad day. In an attempt to divert my thoughts away from all the bad stuff.  The only problem with this is – when the bad days are so regular you can run out of things to write. Or just keep writing the same things on the list. And it becomes boring. Like a chore even.
This isn’t because there is nothing at all to be grateful for, or nothing new. But when exhausted and the brain fog is bad it can be too hard to think – even of nice things.

On Twitter recently I read a piece about somebody who published a book about gratitude. Seemingly the person took a photo of something she was grateful for every day of the year – all 365 days.
I didn’t manage to read the whole article as my brain fog can make reading and concentrating difficult much of the time. And actually remembering the details of what I have read. (A massive frustration . . . )
But I don’t think the author had intended it to become a book. It was just something she wanted to do. And she enjoyed doing it. And if I remember right (and it is a big IF) the author suffered from depression. But doing this helped her enormously.
Then I read a bit from an ME/CFS sufferer’s blog.
Louise from http://www.getupandgoguru.com
(Oh dear, just the title of that blog makes me feel quite weak – sorry Louise !)
Anyway she had set herself a challenge to do this too, ie. take a photo of something every day and publish it. To her blog or other social media.
And she did it.  She called it #365Gratefuls or something similar.
Very well done Louise !!

Now there’s no way I’m going to say I will do this every day of the year. I would just be setting myself up for failure.

But I did find this interesting. Anything that has helped people’s health has got to be worthwhile.
And the idea of a photo I like as it sounds simple. And a move away from trying to think. And its not too energetic.

So I will start adding photos to this blog of things I am/was grateful for.
They will just be very random, not in any order of importance, etc.  Just whatever I happen think of. Ideally without much thinking at all . . . .
And they may well be very boring to people, as will probably be indoor things for a while.

Starting soon.
Maybe even later today if I can.  But I am very drained and headachey after just writing this post.
But soon . . .

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