Hello? I’m Afraid I Can’t…

Photograph taken by me. Location unknown.

Those closest to me will be familiar with the phrase that I have used for the title of this post. Unfortunately I am having to say it to more people and on more occasions that I would like. And I don’t like it! Not one bit!

I very well know that I am not the most reliable of people, I am certainly notorious for not being on time – some may even say ‘late’! However, as my journey along the route known as Fibromyalgia continues and becomes more challenging, it becomes ever more difficult to stick to arrangements that have been made. Frustratingly, cancellation is an ever more frequent event. Just last night, FPR and I were in our coats, ready to leave his mother’s house, when I had to take off mine off, lie down on the sofa and try to sleep. That most unwelcome guest, Monsieur F.A. Tigué, suddenly popped up out of nowhere. So inconsiderate! Wouldn’t you think that, seeing FPR and me with our shoes and coats on and hearing us making our farewells, that Monsieur F.A. Tigué would keep his nose out and let us get on with it? Oh, no! Hmph! In he runs, bold as brass, wielding his slow-motion. Double hmph!

As if that wasn’t sufficiently annoying, this very afternoon, that irritating old codger decided to call in at our home. Grrr. I went upstairs to get ready. (I had arranged to go to meet a new friend before leaving to meet another friend for a film showing.) I didn’t notice anything in particular as I mounted the stairs but it was hiding behind the bathroom door and jumped on me as I entered. Grrr, hmph and stink bombs. Actually, it wasn’t Monsieur F.A. Tigué but his younger brother, Exhaustion-Related Back Pain. They are not a nice family, you know. If I were you, I would steer well clear of them. Each of them has a particularly nasty mean streak.

One of the Fibro symptoms that I get is back pain in the thoracic area of my spine. Sometimes it occurs at the same time as mirror-image chest pain. At other times, the onset of the back pain is a warning that exhaustion is about to knock me for six. There is a different feel to these two types of back pain, so I can normally recognise which is coming to visit. When it’s the Exhaustion-Related Back Pain I know that within a very few minutes I will be laid low by both back pain and exhaustion. Exhaustion rather than fatigue. And so it was, this afternoon.

It was so disappointing. Apart from being disappointed for myself, it meant I had to let down the two friends plus the person who was arranging the showing of the film. It’s at times like these that I get really fed up with the Fibro. I don’t want to disappoint people. It makes me feel pathetic that I am laid low in this way, but I know that it would be dangerous for me to attempt to drive when I am exhausted or fatigued. One positive thing that does come from times like these is that I am reminded of how very lucky I am in that I have friends who care and understand when I have to cancel: friends who know that any time we make arrangements, there is a considerable risk of me having to cancel, but they are still prepared to take the chance on me.

So, to all of my family and friends I would like to say thank you for still wanting to inlude me in excusions and arrangements and for not giving me a hard time when I have to cancel. I really do appreciate it. Please, let’s keep trying because it’s good fun when I don’t have to cancel.


Things That Go Bump In The Night

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.


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.




I Must Go Shopping!

Lettie is feeling a little chilly

Hello there. This will have to be a quick post as I am in a hurry to go shopping. I think John Lewis would be a good place to go but I may need to call in at a supermarket, too.

What do I need to buy so urgently, you ask. Well, our cutlery is looking a little the worse for wear so it would be as well to refresh that drawer. I think I shall buy a set with more place settings as we seem to use them all in no time at all. The situation is particularly bad with the spoons. It seems as though even first thing in the morning there are few usable spoons around. Not only that, but everything seems to need more spoons than usual. Just sitting in the chair, thinking about standing up, often feels as though it is using several of that day’s spoons. I think this is probably the worst patch of fatigue I have had since I was first diagnosed with Fibromyalgia. It would be easy to think “it’s not fair” but it doesn’t help. If anything, it makes things slightly worse. Mentally, I cope better if I keep away from the “Why me?” thoughts. I don’t know whether that would be the same for others but I suspect it may well be.

So, what about the supermarket? I need to dash (!) in there for some window cleaner. Everything is looking foggy so I think the windows must need cleaning. [Yes, I know, it’s corny but I just felt like being silly – on purpose, for a change!]

Actually, at the moment the Fibro Fog doesn’t seem particularly funny. Things have moved on from thinking one thing and saying another. This morning I was sorting out my medication and filling my weekly pill boxes. Things seemed to be going fairly well until I had filled the final box. I noticed that there was a half-full blister pack sticking out of a box. I had deliberately placed the pack that way after using it for the penultimate box as I knew I would be emptying it for the final box. However, once I had filled that box, I noticed that that pack was still half-full! I had put a different (and wrong) type of tablet in each day’s compartment of that box. I had no idea which type of medication I had wrongly used, although, luckily, I recognised which pill it was in each section and was able to remove it. It was a scary moment. Have I reached a point where I cannot be trusted to deal with my own medication? I really don’t want that to be the case… Really, really, really.

That mistake has given me a fright. However, I am not going to panic. I am going to allow myself to calm down and to mull things over. I need to recognise the best way to deal with this. I hope I manage to do so.



Sydney, July 2013

FPR is very interested in words and is engendering a similar interest in my grandsons. He and I have discussions about new words and the way the language is changing, not necessarily for the better, in our respective opinions. I mention that because of the word I have used as the title of this post: Transitioning. I used the word deliberately because of one of the ways in which the word is used. When I talk about “transitioning”, I am not talking about transgender issues but, rather, about the transition I am undergoing at the moment because of the Fibromyalgia.

My Fibro symptoms have altered recently: some have become more pronounced, others have been making their debuts on my personal Fibro stage. These developments in the symptoms create a huge learning curve (sorry, FPR!) around how to live my life. I must admit to feeling fed up with some of the restrictions that my health is trying to force upon me. I don’t mind having to carry out tasks in small chunks – I am used to that and have found it to be a useful coping mechanism – but I really don’t like being penalised for having the temerity to go out for a few hours’ enjoyment and entertainment. That is just not on!

Over the past few weeks, I have had to pull out from several planned trips with friends because of the effects of fatigue. I am unbelievably lucky that my friends understand and tolerate these cancellations. I don’t like having to cancel but I am trying to be sensible and take care of myself. Actually, going out is one of the few areas of my life in which I am an optimist. I always assume that I shall be fine to go when the plans are made and, if fatigue is making itself felt in the period immediately prior to the trip, I believe that it will (miraculously) lift so that I’ll be OK to go. Of course, too often the fatigue doesn’t lift so then I put on my sensible head and don’t go. When I do go, I know that later in the day will most likely be payback time but that’s OK, I don’t think I complain much about that. However, the fatigue is altering. I sincerely hope that this change is a Fibro flare, rather than anything longer-lasting. After my last few excursions I have found that the after-effects have been lasting longer than a few hours. It now seems to be taking a good two days for them to wear off. Hmph. This is not acceptable. For goodness’ sake, Fibro, sort yourself out and stop knocking me out like this. Bossymamma is not happy. In fact, I am so not happy that I am likely to stamp my feet in annoyance (and FPR knows what I am like when I reach that stage, having witnessed it in Singapore!).

For the time being, I shall try not to overdo things and hope that friends are still happy to arrange trips out in the hope that, occasionally, they come to fruition, but I really do hope that  the fatigue slips back into our old routine.

As my friend, Anne, says, “Fibromyalgia: the gift that keeps on giving”.


Fs, Buts And Maybes

Morocco (I think!), 2012

In the House of Commons, here in the UK, when the MPs have voted the result may well be that “the Ayes have it”. (‘Aye’ is pronounced ‘I’.) Well, unlike the House of Commons, in the house of Bossymamma it is the Fs that have it: Fibro Fog, Fibro Feet, Fumbling Fibro Fingers, Fatigue and Freezing [cold]. And I’m Fed up with it!

Let’s go through those and explain all the joys of the Fs.

Fibro Fog has been making itself felt over the past few weeks, in subtle ways rather than the full-blown muzzy headedness. I have found that simple things have been the ones that my brain hasn’t dealt with very well: for example, hearing “Monday”, repeating “Monday” but writing down “Wednesday”, or reading an instruction, apparently understanding that instruction, and then doing something completely different! One way in which the Fibro Fog has been particularly irritating is when I am knitting. Usually I can knit happily away making whatever takes my fancy. Hmph. Recently I have lost count of the number of times I have had to unpick my knitting because of silly mistakes that I would normally make only rarely. Very annoying.

Next we have the myriad delights of Fibro Feet. Oh, what would life be without Fibro Feet? For, literally, decades I have had hot feet. Admittedly, I don’t like having hot feet but that’s another matter. Now, however, I often have cold feet which, in itself, is not a problem: I simply put on a pair of socks. That’s fine until Fibro Feet decide to kick in [apologies for the unintended pun]. The internal temperature of my feet rockets, the knives start stabbing every part of my feet, the pain intensifies etc. etc. and I just don’t know what to do with my feet.

Now, Fumbling Fibro Fingers haven’t happened much up until now. The most notable occasion that they decided to play was when I was on at a hand sewing workshop – it was very inconvenient. So, Fumbling Fibro Fingers decided they were lonely and wanted to come for an extended visit. Gee, thanks, boys! Do you have any idea how frustrating it is when your fingers are following a different set of instructions from those your brain are giving them? Not only that, but they decide that not more than two fingers will work at any one time and when the next two join in, they will actually be following a third set of instructions that are in Japanese! I’ll just remind you of my love of knitting, here…

Fatigue. Need I say more?

Freezing? In September? In England? Surely not? Hmph. Surely, YES… I should say that this is possibly (or probably) nothing to do with fibromyalgia, but it’s happening now because I have been another sort of unwell and it’s adding to my fedupness.

I hope that my fedupness will soon be over and life will be more like my normal soon. I expect you are, too, so that my next post is not so grumpy.  Fumbling Fibro Fingers crossed!



A Few Days Have Passed

Aphrodisias, Turkey
Aphrodisias, Turkey

A few days have passed since my last post when I was talking about the Fibro Flare that I was having. Although the chest infection has pretty much cleared up, the Fibro Flare is still chugging along. However, it is not as acute as it was last week.

What I am finding is that I have very little energy. I don’t actually feel particularly lethargic when I am sitting down, but if I get up and try to do anything I become exhausted very quickly. For example, yesterday my son came to visit with some of his family. I saw his car arrive so went to greet them outside. It was just a matter of a few steps from where I was sitting and I was soon back indoors and seated again, but fatigue struck before I returned to my seat. Not only that, but the fatigue hit me in such a way that my brain was struggling to cope with them being around. I find it so upsetting when the Fibro stops me enjoying having my family around me. It’s no fun for them, or for me and it’s impossible to know when I will suffer that type of reaction. I don’t like it and I will NOT allow Fibro to stop me seeing my family and friends.

Day 2 – The Start of a Huge Learning Curve

Well, at least I didn’t feel as miserable when I awoke. However, neither did I feel as excited as I should have. My new sewing machine was due to arrive and, in the normal course of events, I would have been jumpy, chatty and as excited as a child in a sweetie shop – but I wasn’t. At some times during the morning I felt a bit of excitement, but I was certainly nowhere near as hyper as those who know me would expect. Usually, I can get excited about the opening of a brown paper bag!

There was a pile of ironing to be done so I decided I would attack it. After I had washed and dressed, I did a couple of small things upstairs then went down and prepared to make an assault on the ironing. I erected the ironing board and plugged in the iron. Ah! Plugging in the iron was like unplugging my energy supply. I suddenly felt really tired. No, “really tired” doesn’t describe it: it wasn’t the same as when you’re ready for bed. The tiredness felt more specific, more like an actual illness, as though it was a tangible thing: I wonder if describing it as an invisible coat that’s too small would give someone an idea of how it felt? However I describe it or you understand it, it was sudden and it was effective: not something that would be easy to ignore… so I didn’t ignore it. I made sure the iron was not switched on and I rested.

That set the tone for the day: do a but, feel exhausted, rest a bit. It continued even when I started playing with my sewing machine. Normally, I would be sitting here saying “snot fair!” But I don’t have the energy. That is disappointing. I have just realised that Fibro stole that from me: stole part of who I am, what I do, what makes me Dina. Well, I’m not having it! I won’t accept it! Fibro is not going to win that point. It’s too much a part of me. OK, so it won on that occasion, but it won’t always.

Oh dear. I’m going to have to fight this, aren’t I? Simply rolling over and accepting it isn’t going to work, is it? Oh, bother! That means I can’t be as lazy as usual. Hmph! ‘Snot fair!