A New Realisation

0632092877fd1a2fd344474ebae03d7e5f6949262252b9bf80e8f863bcf28acaadc5f031

An eye-catching sculpture seen on one of our holidays

Today there was almost an enforced continuation of the dearth of writing on this blog. My frustration levels are quite high this morning. I have done quite a bit of IT and internet jobs for others over the past fortnight or so but this morning could have done with someone to sort out my own IT problems. Instead, I have cheated: rather than struggling to sort out the tantrum that our MacBook is in the middle of having, I decided not to log in as myself but, rather, to pretend I am a guest. Grooooaaaaaannnnn.

The need for this capitulation is irritating but I simply cannot face any more frustration at the moment. I have had several weary days during the last couple of weeks or so which have been frustrating but have also brought with them a new realisation. When I’m having a bad Fibro Day due to fatigue and lethargy, it affects my physical abilities. I don’t mean the direct physical effect of the fatigue making it exhausting to move but, rather, that I can also feel a difference in my abilities from a physical perspective. As you may have guessed by now, I am finding it difficult to describe what I mean. I think I shall explaining from a different direction.

The bad days I’ve been having have not exactly been Fibro Fatigue Days. They have been more generalised than that. I have felt achey, lacklustre, a bit foggy, weary, sort of “unpolished’, as though all of me needs spring cleaning. That description also includes how my body has felt. I have felt very stiff and my mobility has been poor. Even when I have felt brighter, it has been an illusion. My ability to walk any distance has been severely restricted. I went out with Little Sis earlier in the week and could barely put one foot in front of the other. It was as though each of my limbs and my body were being held back by some physical restriction. It wasn’t fatigue in my usual sense. It was more that I felt the Fibro was making me unwell and so stopping me moving.

I hope that explanation is clearer and easier to understand because I just cannot think of another way to describe it, apart from being frustrating. Sometimes I would be sitting and feeling fairly OK but, as soon as I moved, I looked and felt severely impaired. It was as though I had aged 20 years in 20 seconds.

Hey! Where did all those birthdays go? Where are my 20 years of presents?

What do you mean by “Just because you feel older, it doesn’t mean you are older”? Hmph!

OK, well, what about all the birthday cakes? *smiles hopefully

Advertisements

The Pleasure And The Pain

36776294562_1f2c9183db_o

Sunset at Stepping Hill Hospital, 29 August 2017

Regular readers of this blog will know that I am very fortunate as pain is not a large part of my fibromyalgia. I hope new readers will accept that fibro isn’t always all about pain.

FPR’s mother has recently been sampling the delights of the NHS, as delivered by Stepping Hill Hospital, which is to the south of Stockport in Cheshire. We live on the northern fringes of Greater Manchester which means there are quite a few miles, and an awful lot of traffic between there and here! Even though I love driving my car and find it less tiring to drive than my previous one, sitting in traffic is no joy.

On Tuesday of this week, FPR and I set off with Lettie, m-i-l’s best-ever black labrador, on a hospital visit. Having made an early start, we had decided, for various reasons, that we would return home before the rush hour. There were a couple of tasks that I was hoping to complete for m-i-l that day which was why we set off when we did. Yes, well, the best laid plans and all that. I think it fair to say that our day did not go as planned – it felt rather like swimming in custard with an anchor tied to the ankles.

Due to a particular problem that cropped up, and a poor decision made by me, we ended up getting home much later than anticipated – but at least I had the pleasure of having completed everything I had hoped to! Oh my goodness, though, have I suffered for it!

On Wednesday, I had a quiet day. I knew I needed to be careful having had such a full-on day on Tuesday and I was feeling a bit tired. No, that’s not quite it. I felt a bit ‘squashy’. By that I mean that my brain was foggy, and my body felt like the physical equivalent of that, resulting in an overall feeling of squashy-ness. I gently plodded through the day, doing a bit of knitting, a bit of reading, spending a bit of time on my iPad – nothing too strenuous – and feeling very pleased with myself. Oops, that last bit was a mistake.

On Thursday I felt diabolical. I was so fatigued, I couldn’t even reach the dizzy heights of squashy-ness. I took things very easy. I did less knitting, no reading and less time on my iPad, but, even so, I felt worse as the day wore on. By the time 4.00pm came I knew I needed to go to bed. I usually avoid sleeping in bed during the day as I tend to recover my energy better after resting (with or without sleeping) in my recliner chair. However, sometimes that just isn’t enough, and that’s what was happening on Thursday: I wasn’t only feeling completely exhausted, I was feeling decidedly ill and nauseous – and it was getting worse with every step I took. Going up the stairs was quite interesting as I had to stop after every couple of steps.

I fell asleep almost as soon as my head hit the pillow. Zonk!

I awoke at around 6.00pm for three or four minutes and then zonked out again until about 7.00pm. I felt very much better than I had before I went to bed, but I still didn’t feel great. However, I did improve as the evening wore on until, by the time I was thinking of going to bed, I was wide awake and raring to go. I stayed up a bit longer, doing things that should prepare one for sleep, then retired to bed. I lay in bed, wide awake, for a couple of hours then gave up trying to sleep and got up again. I eventually fell asleep in my chair for an hour and a half or so and that was it until Friday night. Consequently, I wasn’t full of beans on Friday either. Unbelievably, the fatigue and exhaustion were still hanging over me yesterday!

I had the pleasure of doing everything I had planned to on Tuesday, but, my goodness, I have paid for it with the psychological pain of fatigue and exhaustion that I have suffered since.

 

And Then Came Saturday

IMG_2487

Door knocker at Durham Cathedral

After all the activity of the holiday, it was good to be home. I definitely felt the need to relax in that way which, for me, only really seems possible at home. It’s a similar feeling to the one that comes when I am feeling a lot of fibro pain and fatigue and can finally collapse into bed.

I was hopeful that, on Saturday morning, Little Sis and I would be able to trot into Manchester to a shop that we were each keen to go to. Alas, when Saturday dawned – far too early – it was obvious that Manchester was not going to be graced with our presence. I was feeling something like fatigue, although not exactly, but also an unusual flatness of mood – not depression, not apathy. I don’t know what it was or how to describe it. However, it held me in its grasp all day – not only was I unable to go out due to fatigue, I didn’t even want to think about going out, let alone actually go out. It was no fun for Little Sis, which saddens me somewhat, but I am so very lucky because, even so, I know it’s OK.

Little Sis went home early on Sunday, as planned, and I had another quiet day. I was no longer in the grip of Saturday’s strange mood, but I was still lacking much vim and vigour. Various pains came and went, then came back and went again. All in all, it was a pretty unremarkable day.

Along comes Monday, and with it more changes. This time things were more “normal”. When I say “normal”, what I really mean is “fibro normal”, in other words, intermittent fatigue, accompanied by sporadic aches and pains. I’m beginning to wonder whether holidays are worth all the bother.

Hmm. Yep, I think they probably are.

You Might Say It’s Been Quiet But…

image

April Sunrise

There doesn’t seem to have been much happening here lately, does there? Well, actually, that’s completely wrong as a huge amount has been happening. So much, in fact, that Fibromyalgia hasn’t really had much of a look in. That doesn’t mean that it hasn’t been making itself felt – it has – but, rather, that I haven’t really had much of a chance to think about it, except when it decides to bare its teeth. Even then, I have tended to just sort of acknowledge that it is still around and then dismiss it to the back of my mind.

The symptoms I have been having are the ones that I tend to think of as the “side” symptoms, or “small” symptoms. By that I mean that they are inconvenient, uncomfortable and unpleasant, but they don’t exactly stop me from doing things. However, again, I think that adrenalin has had an enormous part to play in this. Some of the stresses of the past three months increased considerably recently which meant that I had to focus on certain things.

Luckily the dizziness and nausea didn’t prevent me from doing everything that needed to be done. They were certainly a nuisance and felt rather nasty – particularly the nausea – but, in order to get everything done, I would do some things, rest, do some more, rest again and so on. It was handy that the nausea tended to hit me during the evenings or nights, so it didn’t interfere too much with what I was doing. Phew!

Last week, the adrenalin wasn’t coursing around my body quite so vigorously. Consequently I felt drained. It wasn’t fatigue in the way that I have had it previously with the Fibro. Rather, it was an empty, lacklustre sort of feeling. I didn’t try to fight it as I knew that I needed to take care of myself. I have been running “on empty” for quite some time so was in dire need of some “down time”, so I simply took things easy last week.

Because of the reappearance of the nausea, I decided to reduce my dose of Amitriptyline last week. By the middle of last week I felt brighter so I increased the dose back to its previous level… Bad move. The nausea returned almost as soon as I took that higher dose! Accordingky, I have made an appointment to see my GP to discuss where we go from here. I really don’t want to continue taking the Amitriptyline: as well as causing nausea, it also puts me off eating savoury foods. In addition, I think it may be to blame for the increase in intensity of my tinnitus, which has been well and truly making itself felt. I don’t remember ever having suffered tinnitus at these levels previously.

Anyway, I am due to see Dr. Azeer early (too early!) on Wednesday morning so that we may discuss my medication. Keep your eyes peeled for an update from me, after that appointment.

And There It Was… Gone.

Palmyra, Syria

Palmyra, Syria

During the last few days I have been feeling a little tired. It has taken me a while to get going in the morning as I have struggled to wake up properly. I have also dozed off in the armchair several times. It hasn’t been particularly bad, though. It’s been almost as though Fibromyalgia was knocking at the door and saying “Don’t forget me. I’m still here.” Despite that, I have pretty much been able to carry on with my everyday life, apart from yesterday: I overslept and had only been awake for a few minutes when Elizabeth arrived. She already knew that there was a possibility that I wouldn’t be able to go out to play, so she wasn’t particularly surprised. She was collecting the box I made on a course with her recently, to be included in a forthcoming exhibition, so at least her journey wasn’t wasted.

As the day wore on, I had more energy although it wasn’t up to recent levels. I was feeling quite lacklustre. This morning it, again, took a while for me to start firing on all cylinders. I had a few tasks that I had planned for today so I spent a few minutes deciding what order to do them in. Everything went well until lunchtime. I had been doing some sewing and felt that I needed to stop and have a cup of coffee, and a short rest.

That short rest took longer than I had anticipated – falling asleep in the chair can have that effect! When I awoke I had to struggle to stay awake and it took a mammoth effort to get out of the chair. It didn’t help that I was beginning to get symptoms of a migraine. I took my migraine medication and battled to sort the newly-washed laundry and hang it to dry. As it was, I only managed to deal with the large items, the small stuff is sitting in the laundry basket glaring at me as I type this. How is it that inanimate objects can make a person feel guilty?

My energy has simply disappeared. My arms and legs feel swollen and heavy, like lead. It feels as though my neck can barely hold up my head. The effort needed to expand my chest when I breathe is just too much to contemplate, so my breathing is shallow, which probably doesn’t help my energy levels. I had almost forgotten how this lack of energy felt but I’m being well and truly reminded of it now.

Somehow, I don’t think the lawn will get mown this afternoon.

Sometimes It’s Hard To Describe

Ushuaia

 

 Sometimes it’s hard to accurately or meaningfully describe how I am feeling. There have been several days recently when I haven’t been laid low by tiredness and fatigue, or by any other recognisable symptoms of Fibromyalgia. However, on those days, I haven’t really felt that I was having a ‘good’ day. Often, on days like those, I feel decidedly lacklustre.

What do I mean by lacklustre? Well, that’s where I have the difficulty: I struggle to find a way of adequately describing how I feel on those days. Anyway, here goes…

Lacklustre: feeling dulled and enervated (strange word ‘enervated’, it means the exact opposite of what it should mean, by the way it sounds). Lacking in motivation. Uninteresting and uninterested. Quiet. Slightly low mood. Not feeling bright and breezy. Things are a bit of an effort. Can’t really be bothered. The word ‘relaxing’ becomes a synonym for ‘lazy’. Not very alert. Wishy-washy. Not hugely productive. Having or wanting a ‘duvet day’.

Lacklustre is pretty much how I have been feeling for most of this week. I think I need to give myself a mental shake!