Ghouls, Ghosties and Other Scary Things

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Morocco, 2012

Do you believe in ghosts? I don’t know whether I do, or not. I’ve never seen a ghost but that doesn’t mean they don’t exist, it simply means that none have appeared to me. I do believe that some people have abilities that we don’t exactly understand, although there are lots of charlatans who take advantage of people.

???

I can hear all the question marks knocking about in your head as you read this, wondering what on earth I am rabbiting on about. Allow me to enlighten you.

I have noticed what I think is a slightly weird phenomena. (OK, OK, FPR, I know that’s wrong, I typed it deliberately just to wind you up!) No, what I noticed was a weird phenomenon.

I seem to have developed an internal Early Warning System which lets me know when Fatigue is rushing in my direction. When I have been doing something for a while – it could be for any length of time from five minutes upwards – a knowledge comes upon me that I should stop. I don’t feel tired or fatigued. In fact, I often feel that I want to continue what I am doing. However, there is a voice in my head that tells me I should stop. I then find that within, literally, a minute or two, Fatigue has arrived for a visit. It really is most peculiar as the knowing can come at any time – it doesn’t appear after a certain period of time. As I said above, it can be five minutes after I start, or it could be 45 minutes but, regardless of how long it takes to happen, the Fatigue follows hot on its heels.

You may think that it is a self-fulfilling prophecy: that I think I might get tired and so I do get tired. However, it doesn’t seem to be. It matters not whether I continue what I am doing or take a break, Madame La Fatigué arrives with her suitcase looking set to outstay her welcome – just like the archetypal mother-in-law.

Generally, when this spooky starts, I will stop what I am doing. I have found that when Madame L F arrives in this manner, she packs a real punch. She sure does like to make her presence felt! These are the times when my every muscle screams to be allowed to fall in a heap wherever I am standing. The times when I don’t have the energy to knit, or surf the net; when I’m too exhausted to cope with even the most mindless programme on television; the times when I simply sit and do nothing. The strange thing is that this utter exhaustion isn’t any indication of how long I will feel unwell: I may feel much brighter after 10 or 15 minutes, or I might feel lousy for three or four hours. There is just no knowing.

 

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Temptation

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Luscious-looking lovely chocolates

I love chocolate. It definitely has the ‘feel good’ factor. For me, chocolate is the ultimate temptation and, as Lord Darlington said in Oscar Wilde’s Lady Windermere’s Fan, “I can resist everything except temptation”.

There are occasions when I do a little tempting of my own. My last post was a perfect example of that.

You may remember that I talked about having had a good week. (Actually, when I was thinking about it a while after publishing that post, I realised that it hadn’t been as good as I had said, but that doesn’t matter.) Silly me. Silly, silly me. You’d think that at my greatly advanced age (according to my sons!) I would have learned not to tempt fate, wouldn’t you? Ha! Not me. I just jumped right in there: streamers streaming, flashing lights flashing, sirens sirening and me yelling “Here I am! Look at me! Look at me! Aim right here, Fate!”.

And it did.

The day after I wrote and published that post I had an abysmal day. I could barely move because of fatigue. Indeed, even thinking about moving wore me out. I struggled all day, trying to find the energy to pack my suitcase as FPR and I were going off on our jollies on Monday morning.

Yes, I know. Anyone sensible, particularly if that anyone has a condition which is generous with the fatigue symptom, would pack their case a couple of days in advance to avoid the risk of being hammered by a lack of energy. Yeah, well, I don’t claim to be sensible. Sensible is boring. And, anyway, if I pack too far in advance, I am likely to forget half of what I want to take – and packing at any time prior to the afternoon before departure, is way too early. I am famous, or maybe infamous, for packing at the last minute. I have been known to leave my packing until the day of departure! I remember, the day before my first trip to Australia, being absolutely amazed that people thought I would have been organising my packing for three weeks beforehand!

Sorry, I got a bit distracted there.

I managed to do my packing and other bits and pieces late on the Sunday evening, prior to our 7.45am departure the following day. I’m sure you can imagine how relieved I was to find  that the awful fatigue had lifted when I awoke on Monday morning!

It really isn’t a good idea to tempt Fate, you know.

 

Strange Happenings At Bossy Towers

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Morocco, 2012

Strange things have been a-happening here at Bossy Towers, this week. Life has taken an unexpected twist. Bossymamma’s toes have been tripping the light fantastic along the road less travelled. Life has been dancing to a different tune. Nothing has been quite the same as usual.

The oracle has been consulted, horoscopes read, clairvoyants sensed and tarot cards dealt, all in an attempt to understand the conundrum that has been “this week”. In fact, at one point, there was talk of an official enquiry as foul play was suspected in some quarters.

As you can tell, it was an extremely serious matter, which was reacted to in a timely and appropriate manner.

I am struggling to find a way to fully explain the events of this week which would adequately convey the implications of the circumstances in which I have found myself. However, I shall certainly try. I will give it my best shot. I only hope that my vocabulary is sufficiently broad to enable me to share every detail of the situation in which I have found myself.

Here goes…

Um…

Well, it’s…

Since last…

I’ve had a good week!

A bit of fatigue – but that’s neither here, nor there. Very little pain. Fibro feet have been (nearly) fighting fit. A little dizziness, but nothing to get in a spin about.

A pretty good week!

Whoopee!

 

Perm Any Two From Three

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My Grandchildren’s Favourite Team [Photograph from Burnley Football Club website]
Do you remember the old Football Pools? That desperately important form that had to have crosses marked in an array of tiny boxes, to indicate which matches you thought were going to end in a draw. There was a phrase connected with “the pools” which was along the lines of “Perm any two from three”. I didn’t understand what it meant except that I think it was connected with how many draws one had to predict out of the number of crosses entered.

What has all that to do with Fibro? Well, in my last post I talked about back pain and about which of three things might have been the cause, and now, I think I have it sussed. I have whittled the options down, getting rid of two of them so I quite liked the idea of using that, apparently, redundant phrase.

I am pretty sure that the back pain is attributable to my fall on Christmas Day. Admittedly, the actual pain is different now from how it had been, but no chest infection has developed and I am still fatigued. In fact, it has been a toss-up this week as to whether the fatigue or the back pain have been more of a nuisance. On balance, I think it would have to be fatigue as, when I have had to have a rest due to fatigue, I haven’t done anything for quite some time whilst sitting. Usually, I would do some knitting, sewing or crochet, or surf the net whilst resting, but I have been too exhausted even to do any of those things. When I have had to have a break solely due to back pain, I have usually been able to do something to amuse myself, whilst resting.

Fatigue is definitely having an impact on how I live my life, at the moment. No, let me be honest, it has been having quite an effect for several months. I find that I really cannot be certain that I will be able to fulfil commitments that necessitate a journey away from home. That uncertainty creates in me a degree of anxiety and lack of confidence. I know that family and friends are aware that I have this problem and I think they understand that sometimes I have to cancel at the last minute, but it can’t be much fun for them. I also know that they worry about me, which upsets me. I don’t want to be a worry or burden. I want to be the partner/mother/Nana/friend that they enjoy spending time with, not the one they are worried about. This message is for them:

I am OK. Fibromyalgia is a pain in the bottom. While I do need you to make allowances for the restrictions it sometimes imposes on me, I am OK. I feel rotten for a while, then I start to feel less rotten, or perhaps even quite good, then I get back to feeling [my] normal. Generally I am coping with it. I am finding ways of living with it and altering how I do things. The main thing I am trying to do is live each day as it comes.

 

One Good Turn…

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Edinburgh

For a variety of reasons, FPR and I went on a quick coach holiday to Edinburgh over the Christmas period. I love Edinburgh but struggled to find a photograph which reflects that, to use for this post. Then I realised that when I think of Edinburgh feelings, rather than images, come to mind. That must be why it has taken me far longer to choose a photograph for this post, than to write the actual post itself!

Anyway, back to the point of this blog post.

Regular readers will know that I have been encountering more difficulties with the Fibro lately than I usually do. New symptoms have cropped up, with tiredness and fatigue being particularly troublesome. I had taken the build-up to Christmas gently to make best use of my spoons, but it had still made itself felt. Luckily, those around me are aware of and accommodate the restrictions of my Fibromyalgia.

We were staying in a hotel but had been invited to spend time with FPR’s brother and his family. We had also had an invitation to visit friends, so that was Christmas Eve and Boxing Day spoken for. We spent a quiet day at the hotel on Christmas Day. Well, I say quiet… but, more of that later.

The plan was that, on Christmas Eve, the entire family group would go to North Berwick for some cobweb-blowing therapy, but my cobwebs would be allowed to remain intact. In other words, they would walk and be battered by the wind, but I would stay in a cafe, snug and cosy, knitting up my own personal storm. However, as the weather was being a trifle unco-operative, North Berwick was knocked off the agenda. We adjourned, instead, to the House of the Long Men (so named by me as all the males were over six feet long!). The change of plan was a surprising bonus for me. Remaining at the House of the Long Men meant that I was able to properly relax. I enjoy having coffee in a cafe but it is definitely a less-refreshing form of relaxation than being with people, and in a place, one is at ease with. The pleasant result of the day was that I felt better than I had for a while. My Fibro symptoms eased right off. Bliss.

As I mentioned earlier, we were remaining in the hotel on Christmas Day, which was absolutely fine with us. Our fellow travellers were generally a pleasant bunch, our coach driver was cheerful and ready to chat with anyone and the hotel staff were pleasant, polite and helpful.

There was a couple on the holiday we had been talking with, both of whom had obvious disabilities. At mealtimes, the husband would to fetch his wife’s food first, then return to the buffet to pick up his own. In my interfering way, at the Christmas dinner I said to him that I would like to give him a Christmas treat by fetching one of the meals, so that they could eat at the same time. I was very pleased when he accepted. (What I hadn’t told either he or his wife was that I was going to be providing the entertainment.) He told me that they were going to have soup so I fetched two bowls of soup and a couple of rolls. When I was a couple of steps away from their table, my performance began.

I caught my foot on the wife’s wheeled-walker and went flying through the air, soup and rolls in hand. I made a technically superb piroutte before landing elegantly in a crumpled heap on the floor – and I didn’t even drop the soup! Actually, I must have dropped it at some stage as the bowls crashed dramatically, emptying their contents on the floor. I have to say that I was very pleased that I didn’t get any of the soup on me!

I will say, at this point, that contrary to what many people thought, I was not in the least embarrassed. I was disappointed for the couple that I hadn’t managed to carry out what I had promised. I was also upset that the husband tried to take the blame for my fall. It was nobody’s fault but my own. I had been the one to suggest that he park the walking frame in that spot and I was the one who tried to walk through it, instead of round it.

OK, back to the gory details of the performance. Help appeared from all directions, in an instant. I was not really hurt – just a bit of muscular pain and some preparatory work for a couple of bruises. I think you could say I was very lucky! I certainly felt lucky FPR jokingly said that’s what I get for doing a good turn and that I’d better not do any more but I hope it won’t stop me.

(This is where I found the photograph at the head of this article. It was one of the results that came up as being free to use, when I searched on Google. https://www.ed.ac.uk/literatures-languages-cultures/dashkova

‘Twas The Night Before Christmas…

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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.

 

 

 

This? That? Or Maybe Some Other

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Riga. December 2016

Things have been a bit confusing over the past few days.

The Amazing Dr. Azeer’s diagnosis of my Fibromyalgia came hot on the heels of a chest infection I had been suffering. I have an underlying chest condition which means that chest infections have to be managed carefully. At the time, I attributed the pain in my chest and thoracic region of my spine to the infection. It is not at all unusual for me to need 2 or 3 courses of antibiotics to completely clear things up, so you can see why I made that assumption. However, the Amazing Dr. Azeer (ADA) soon realised that it was Fibromyalgia that was actually causing the pain.

Luckily, I have been in a prolonged period where I have managed to avoid catching many chest infections. Hooray! However, over the past few days, it has been feeling as though I have a good one brewing – just in time for Christmas! But… now, I’m not so sure. The pain that I have had over the past 24 hours has felt more like the Fibro pain in the chest and back. I tend to get that pain when I am very tired (as opposed to simply fatigued). I would define it as coming when the tiredness is due to my having been busy, rather than feeling fatigued without apparent cause. The pain I had felt in the day or so prior was accompanied by the sort of unwellness that I recognise. Consequently, I am confused. Is it an infection taking a leisurely stroll in my direction, ready to knock me for six at Christmas, or is it merely due to tiredness?

I am hedging my bets and trying very hard not to overdo things. I do a bit of a task, then rest. The proportion of resting to working is very skewed because I don’t have to do much to become tired, but that’s OK. Even with all of the necessary rest, I am on target to complete the task in hand, so I regard that as a ‘win’. Oh! We Fibro Warriors are easily pleased, aren’t we?

 

You Have To Take The Bad With The Good

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Carpets on display in Morocco, February 2012

Sometimes, someone or something somewhere (depending upon your beliefs) smiles upon you, making things go well. Sometimes, those same someones or somethings are in a pesky mood and decide to take it out on you and make life a giant-sized pain in the bottom.

Last weekend, the someones/somethings were in a good mood because they decided to go along with my plans to have a day out with my family. Everything that I did or did not do in the few days leading up to Sunday, was designed to help me manage to actually take part in the activity. I can scarcely believe it, but it actually worked! Like a dream! Woohoo! I even managed to get a little shopping done on my way home!

Result!

(Can you tell that this doesn’t happen as often as it did pre-Fibro?)

However, since that expedition, the someones/somethings have decided to use me as their personal punch ball. Their displeasure culminated in me grinding to a sickening grinding halt halfway through a little task I was doing for FPR. I must have been in a bad way because he commented on it when I thought I was still managing quite well. It didn’t take long for me to be not managing at all. Anyway, it was a price worth paying for having managed to go out on Sunday. So, it is still a…

Result!

The Vice Squad Have Got Me!

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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.