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.

 

 

 

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Hello! Can You Hear Me?

Turkish sea view

 

You may have guessed that yesterday was not a “good day” for me. Actually it turned out to be a hugely better day than either Saturday or Sunday, but it still wasn’t good. I did manage to stay awake for much of the day but I wasn’t up to doing much. The sum total of my achievements for yesterday was:

  1. Writing my Fibro Diary post
  2. Knitting three rows of a child’s hat in the morning
  3. Knitting four rows of said child’s hat in the evening (I shouldn’t have knitted the fourth, it was a row “too far”).

During the day I spent some time watching trashy TV programmes and some time online. It was during one of the online periods that I read a post on Facebook, ostensibly written by Fibromyalgia. It was on the Fibromyalgia UK Facebook page: https://www.facebook.com/pages/Fibromyalgia-UK/127650910695587?fref=nf

It was quite a lengthy piece and I don’t intend to reproduce the entire thing here. However, I did request, and was granted, permission to use some of it. So, here goes:

Hi….My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun?
I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!

I hear you’re going to see a doctor … You will be put on pain pills, sleeping pills, energy pills, … given a TENs unit, get massaged… you cry to the doctor how debilitating life is every day.

Your family, friends… will all listen to you… hearing about how I make you feel, and that I’m a debilitating disease…while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

Hmmm.

I have edited the piece removing sections to make it more relevant to my situation. Please remember, though, that Fibro is different for each sufferer. Remember also that it’s not just the person with Fibro who suffers, but also those closest to her or him.

I hope that reading both this and yesterday’s posts will help you to understand a bit more about how it feels to have Fibromyalgia. And I sincerely hope that you are never affected by it.

Oh! I Remember…

Or perhaps I don’t remember.

My mother is ** years old. She would be annoyed with me if I told you but, as
I am in my late 50s, you may insert your own estimate of her age. Anyway (as usual
I have wandered off the point) even at that age her memory is good. She has often grumbled at me when I have not remembered something and told me how bad my memory is. In my defence, let me say that I am not sufficiently interested in where she bought a particular item of clothing to bother committing it to memory.

During this week, I noticed that I was have trouble recalling a couple of things. It made me wonder if it might be the start of a sinister decline in my short-term memory. Following on from that, last evening I received an email newsletter from which included a link to a survey which is looking at symptoms of ME/Chronic Fatigue Syndrome, Fibromyalgia and Irritable Bowel Syndrome. One of the questions asked about memory problems. There came upon me a strange phenomenon colloquially known as a “light bulb moment”. It may be true that I am experiencing some short-term memory problems and they may be attributable to Fibro. Oh dear.