It Was A Cold, Dark Midwinter Night…

IMG_2170

A cold, dark midwinter night

Actually, no, it wasn’t, it was a warm, clammy, near midsummer night, but you get what I mean.

As I type this, it is Sunday morning and the clock reads 02:13. I have just sat down with a cup of coffee and a chocolate caramel biscuit. I got up 10 minutes ago, having retired at 9.00 o’clock last night because I was so tired it was almost literally painful. Just a few hours earlier, FPR had commented on the fact that I had been more awake than on the previous two days. S*d’s Law has had a very busy week, this week.

I had my assessment for a Blue Disabled Parking Badge on Wednesday of this past week. I had been anxious leading up to the day of the assessment but adrenaline saw me through – probably too well. The Occupational Therapist I saw informed me that it will take about 14 days for the matrix to calculate whether or not I am entitled to a Badge.

I was a bit tired for the rest of the day, but not overly so: I suspect the adrenaline was still working its magic. However, Thursday and Friday were completely written off. In fact, on Thursday, I could barely keep my eyes open. I was so fatigued it was making me nauseous. I managed to crawl into bed at 8.30pm – and I mean ‘crawl’. The thought of having to climb the stairs almost had me in tears. Somehow I made it into bed whereupon I slept. In fact, apart from a ‘comfort’ visit, I didn’t wake until late.

Friday wasn’t quite as bad, but I wasn’t able to do much. I did manage to do a little food shopping and a few rows of knitting, but that was about it. Oh, and I stayed up late. When I say ‘late’, I mean later than the previous night!

On Saturday, I had an appointment with the chiropodist. I have reached the point where I am too stiff to be able to cut my toenails. I don’t want to ask FPR to do them for various reasons, not the least of which is his eyesight. I don’t want to say he is myopic because of the connotations of that word, but he does have very short sight. Anyway, I digress. I attended the appointment and returned home. I spent the day awake but doing little, apart from arranging my forthcoming journey to see my baby son and his partner. I didn’t feel particularly fatigued, but neither did I feel like doing much. After dinner, I knitted just three rows of a very small item that I have on my needles before becoming exhausted. I sat quietly, becoming more tired and feeling more unwell until I managed to make the decision to go to bed. [NB I have worded that sentence like that deliberately as it’s how it happened. It took an inordinate amount of mental energy to actually realise and then decide that I had to go to bed.]

S*d’s Law was also at work earlier in the week. Last Sunday evening I had planned to meet a friend at a film screening in Longsight and to give another friend a lift home afterwards. I had dovetailed my entire weekend to give me the best possible chance of not having to cancel and everything was going well… Then our next-door neighbours’ daughter decided to play with her karaoke machine: outside, about 15 feet from our living room window, from around 3.00pm to 7.00pm – when I needed to sleep! I could have cried. I hadn’t expected that I would need to sleep, although, when I realised that I did need to, I didn’t perceive it as a particular problem as I had plenty of time. However, given that the ‘performance’ had started and then continued until 7.00pm, it completely scuppered any chance I had of going out, as I needed to leave soon after 6.00. I was sorely disappointed, especially as it meant letting down two friends. I am so very lucky to have understanding friends but it doesn’t stop me feeling embarrassed and ashamed at having to let them down.

S*d’s Law and Fibromyalgia (and, of course ME/CFS, if I do have it) have a lot to answer for!

 

Advertisements

‘Twas The Night Before Christmas…

IMG_2020

The Italian Chapel on Mainland in the Orkney Islands

FPR and I have spent a lovely few hours with family this afternoon. They had their Christmas celebration yesterday so on Christmas Eve it was Boxing Day! A bit of a mixed-up time, eh? Not only that, but I have had a generous early Christmas present.

My friend, Fibro, decided to give me a present consisting of multiple symptoms that I don’t usually have a problem with. I must say, at this point, that none of the individual symptoms has been unbearably awful. However, the arrival of lots of them at once has been a bit anti-social. It has felt overwhelming, at times. I have been feeling pain in places that don’t usually give me any trouble and it has also been making itself at home in the places where it is a familiar face. It has been particularly bad in the thoracic region of my back and up across my neck, shoulders and arms. Fatigue has been playing up for a while but, the last few days it has ramped up the action or, should I say, the lack of action. An example of this is that I have only been able to work a few short rows of knitting, before having to rest – particularly irritating as I am trying to complete a Christmas gift!

Sleep has been less restorative than usual. Up until now, sleeping has revived me, but that doesn’t seem to be working, at the moment.

The Fibro Feet have been working hard causing discomfort, as have the Fibro Fingers. Add to that particular mix, the Restless Legs and you have a lively dance to watch.

With the symptoms I have mentioned, and others, has come a general feeling of unwellness. Bossymamma has not been a happy bunny!

As Anne with an ‘e’ says: “Fibromyalgia: the gift that keeps on giving”.

Things That Go Bump In The Night

Barney

My lovely boy.

During the long, dark nights of Winter, many people like to share scary stories and so, on this dark winter’s morning I thought I would continue that tradition, albeit my timing is somewhat out. It’s a bit of an odd thing for me to do as I don’t enjoy being frightened. I have only ever watched one horror film: it was more than 45 years ago and it still gives me the creeps when it comes into my mind!

The start of my scary story is something of a cliché…

It was a cold, dark winter’s night and a gale was howling. There was no moon. Everywhere was black as coal: too dark to see anything. A bat skimmed by, leaving a whisper of its flight. A single, almost silent tap was heard, like a fingernail lightly touching glass. Suddenly that tiny sound exploded into a cacophonous clatter. The noise was deafening. It completely engulfed the cry of the rushing wind. Nothing existed but the sound which completedly overwhelmed the senses. There was an absolute knowledge of a cataclysmic happening. Life-changing. Earth shattering. Everything was obliterated by the intensity of the crushing and crashing. (*pauses dramatically)

It was the sound of Fibro Fog indelicately shoving all of Bossymamma’s marbles towards the brain’s Emergency Exit!

Ladies and gentlemen, Bossymamma’s marbles have left the building.

Fibro Fog rules in Bossymamma’s world.

You don’t think that’s very scary? Hmm. Try it. Try reading something, acting on it, making a telephone call about it and, during the call, realising that what you read was not what was written down. Try writing down some important information, only to find that you have changed just about every pertinent detail. Try having an apparently serious conversation with someone you have never met before and, halfway through a sentence, your brain turns to mush and, not only have you forgotten what you were going to say, but the entire discussion no longer makes any sense to you. Or, how about sorting your medication into dosette boxes, only to discover that you have made a confusing hash of it and have no idea what you’ve done or how to correct it? Believe me, it really does feel as though my marbles are AWOL.

But,

It’s not always like that. Sometimes my mind is as clear, as organised and as logical as it ever has been. Sometimes I can function like Me, Well, I suppose that should read “like the Me that I used to be”. However, I don’t want it to be the Me that I was, I want it to be the Me that I still am. It feels as though I am disappearing: being swallowed by Fibromyalgia and irrevocably changed by it. I’m not ready for me to vanish. Bits of me have been disappearing for years. Stress, anxiety and depression have taken their toll, eroding me. I used to be someone who coped, organised, did things, got others to do things, but that has been slipping away, to be replaced by a very different person – possibly one who is easier for others to be near, but not easier to actually be. Mind you, I haven’t completely given up.

Yesterday an article showed up in my Facebook Newsfeed. It discussed reasons why people with Fibromyalgia don’t like talking on the telephone. One sentence, in particular, stood out for me:

‘Personally, I really dislike speaking to strangers on the phone because I don’t want to appear stupid. At least if it’s someone I know well, I can say, “Sorry, I just had a fibro moment. Can you repeat that?” ‘

I have made a few telephone calls over the past couple of days during which Fibro Fog has made itself felt. However, unlike the author of that article, I am unconcerned about the possibility of appearing stupid. You see, I know that I’m not stupid and that is more important to me than the opnion of someone on the other end of a telephone. The way that I deal with Fibro Fog interfering in a conversation, either in person or on the telephone, is to tell the other person that I have a medical condition that sometimes turns my brain to mush and asking them to repeat what they have said, or explain it another way so that I can take it in. What I am telling them, in effect, is that I expect them to take some responsibility for ensuring that they are helping me to understand. I don’t think that’s unreasonable. How often have you heard someone say about computing, for example, that they ask their son/daughter/grandchild to show them? Then they go on to say that said son/daughter/grandchild just touches a few buttons and does it without explaining, so they don’t learn. It’s the same thing, isn’t it? What’s the point of me asking and then pretending that I have understood, when I haven’t? I’m not ready to sit quietly in the corner like a good little disabled person.

 

 

 

The Vice Squad Have Got Me!

DSCF1936

Jamaa al-Fna, Marrakech, Morocco. January 2012

It had to happen some day. I knew the Vice Squad would eventually catch up with me. I’m not sure that I deserve it, though. I really hope it will be gentle with me.

No, I don’t mean THAT Vice Squad! Whatever do you take me for? No, don’t answer that! The Vice Squad I am talking about is the one that attacks my upper arms and uses a metal prod on each arm, which feels as though it is about three inches (7.5 cms) in diameter, to do so. It squeezes those two circular discs together, towards each other, in its vice-like grip. Even though no-one can see them, and you could argue that they don’t exist, I can tell you exactly what they look like. How weird is that?

The discs are about 1/2″ (1.25 cm) to 3/4″ (2 cm) deep and the rims are painted a burgundy red, with a hint of blood red in the colour. The red paint is glossy but not brilliantly shiny. The face of the disc looks similar to a potter’s wheel, with a narrow concentric circular groove cut in every inch (2.5 cm) or so. That surface is unpainted metal, smooth, but not shiny. I don’t know if other people picture the instrument of torture they are suffering, but the image of those discs immediately comes into my mind when the vice starts to grip. My mind’s eye is a very busy little bee! Funnily enough, I was reading an article online yesterday about someone who is the very opposite of me when it comes to having a virtual image – she has Aphantasia. In other words, she isn’t able to picture things in her head. I found the piece fascinating – well worth reading, which is why I have included a link to it.