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.


Mountaineering, anyone?

Tierra del Fuego, 2014

As a child, I loved mountains. I had never actually seen one, in real life, but I loved them. My dream was to visit Switzerland, the land of mountains. In my very limited knowledge of the world and its geography, Switzerland = the Alps, ergo Switzerland was the place to go to see mountains. In fact, I so loved mountains that my mother and my grandmother each gave me a framed picture of mountains for a birthday or Christmas. I still love mountains. When I say ‘mountains’, the picture in my mind is of high, rocky places, bare of vegetation, with steep, jagged profiles with some covering of snow and/or ice – the amount of snow and ice is unimportant. I love to gaze upon mountains: they have such a powerful presence which I find oddly fascinating and calming. I can be easily  mesmerised by them, by photographs of them. Uluru, previously known as Ayers Rock, has a similar effect. I don’t have much of a ‘bucket list’ but Uluru is most definitely at the top of it!

FPR has climbed quite a few mountains around the world. He’s thrown himself off one or two, as well. He doesn’t understand that I can be fascinated by mountains but not interested in climbing them. I think my lack of desire to climb them may be because I wouldn’t be able to see the mountain while I was climbing it – well, apart from the bit around where I was standing or climbing. I would be too close. I love the majesty of the mountain. However, that is changing somewhat.

I still love mountains and now, at my greatly advanced age (well, in the eyes of my two loving sons!) I am finally taking up moutaineering. It is a particular type of climbing that I am indulging in but, actually, it isn’t through choice. With any mountain there are several choices of how to move past it: go up it, go round it, go through it or, fly over it. Hmm… Yes… Well… That’s true of mountains like Everest, Aconcagua, the Matterhorn and so on, BUT… when the mountain is a set of high, steep steps those choices don’t apply. The single option, if you want or need to access the paradise which is only accessible by those same steps, is to go up them.

That’s where the mountaineering begins.

I have noticed in the past two or three weeks that my Fibro is changing considerably. My entire body has stiffened so much and become incredibly weak. I have never been physically strong or powerful. In fact, my baby son has teased for years because my wrists and hands are so weak! However, the weakness in my body has become very much more pronounced during these past few weeks. When I mount the stairs, at home, I have to pull myself up using the bannister. It is quite a nuisance as, if I was carrying anything upstairs I would hold it in my left hand, but I now need to hold our only bannister with that hand. I am finding that I can barely manage to carry the laundry basket upstairs because of the way I hold it. I need to find a new position or technique to hold it.

Returning to the mountaineering, last week I had to ascend and descend the same set of three (or four) very deep steps several times. It was quite a challenge. I do not use any mobility aids and there was no rail to hold onto so it really was like being faced with a mountain. When I first saw them, I froze. How on earth was I going to get up them? It’s not just the amount of energy that is needed, but also the way my balance is affecting me, plus the weakness and the stiffness of my body.  The steps were not particularly user-friendly. There wasn’t much depth, from front to back, to place one’s foot: the depth was in the risers. I think they would be challenging for many people. Oh, my goodness. I really wished I had had a walking stick with me. In fact, I am thinking that it might be wise to keep a walking stick in the car – just in case. Oh dear, I am feeling decidedly old and decrepit – definitely not like a mountaineer!

A Very Special Gift

Screen Shot 2018-02-24 at 17.59.08
Bondi Beach (I think!). Summer 2013

Here in the UK the National Health Service has a vaccination programme each winter to protect certain vulnerable people from flu. I can’t remember which groups are included – and I’m too lazy to check it, at the moment – but I know that I am one of the people invited to have the flu jab because I have a chronic chest condition. It usually takes me a while to get around to having the jab, but I do always make sure that I take advantage of its availability. I think it is sensible to have vaccinations when they are available. In fact, in 2015 I heard that there was a Shingles vaccine available.

Now, my body is extremely reactive to stress. Over the years, stress has caused me to suffer prolonged periods with no voice – the problem was so bad that I began learning sign language so that I could communicate with my family without having to write everything down. (Have you ever tried losing your temper when you have to express that anger down on paper? T’ain’t easy, I can tell you!) Stress has also caused me to suffer excruciatingly crippling headaches – not migraine but most definitely as bad as migraine – and also to develop Irritable Bowel Syndrome, amongst other things. Oh, yes… and Fibromyalgia.

Anyway, back to the Shingles Vaccine. When I learnt about it I was under a huge and prolonged period of stress. I knew, as did my favourite GP, that I was likely to be susceptible to anything and everything when the stress dissipated, so I asked him if I might be given the Shingles vaccine. He agreed that it would be a good idea but, unfortunately there was no way that it could administered within the NHS as I was outside the qualifying criteria. I decided to pay privately for the vaccine and, even though it cost more than £100, I remain certain that it was a sensible thing for me to do.

As you can see, I am a believer in the use of vaccines and so, this winter, I had the flu vaccine, as usual.

During the past three weeks I have been in the company of some people who have been suffering from the nasty cough/cold/flu lurgy that has been touring the UK. Usually, I would steer well clear of those nasty germies, but it wasn’t quite as easy as usual. Consequently, I have been half-expecting to be struck down with a severe case of Fibro Flu. Cue this week.

On Tuesday I began to feel unwell: very unwell. I had severe pain in the thoracic region of my back and also in my chest, both of which are pretty reliable signs of a chest infection working itself up into a frenzy. I was boiling hot. Then I was freezing cold. Fatigue and tiredness were off the scale. I felt decidedly l-o-u-s-y. My favourite GP likes me to keep antibiotics at home so that I can start taking them as soon as a chest infection starts because, once the infection takes hold, it is an absolute whatsit to get rid of. However, this time, I didn’t start taking the antibiotics. Although I seemed to have almost all of the symptoms, I wasn’t completely convinced that I actually had an infection. I already had an appointment booked with my favourite GP for Wednesday afternoon and decided that I would wait until I saw him and ask him to take a listen to my chest. Wednesday came and in I trotted to see my favourite GP. He checked me out and said that my chest was completely clear. It wasn’t a chest infection! Hmmm. Peculiar…

It turns out that my symptoms were all courtesy of “the gift that keeps on giving” (to quote my friend, Anne). My Fibromyalgia has decided  to make me feel so lousy that it feels like flu. Isn’t that fun? You’re right. It’s not.

Fave GP and I discussed Fibro, symptoms and medication and agreed on the same conclusion i.e. there is little point in me taking any of the recognised medications for Fibro as they are all aimed at the pain, which is the least of my problems. Fave GP asked me which symptoms I have and I went blank. I just couldn’t think! Whilst I was trying to reply, I had to pause for a while, after which I told him that dizziness (which had been the reason for the pause) is one of my symptoms. I told him that I have a wide variety of symptoms but little pain, compared to other suffers, for which I am very grateful. Please be sure, fellow Fibro sufferers, that I am truly thankful that the pain I have appears slight in comparison to what seems to be the case for very many people who have Fibromyalgia.

In view of the discussion of symptoms with Fave GP, I have decided to try and add a page to this blog where I can note any symptoms that I have. So, watch this space – or should I say, watch the space next to this space?


A New Realisation

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

Ghouls, Ghosties and Other Scary Things

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.



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

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…


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!



‘Twas The Night Before Christmas…

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

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.




This? That? Or Maybe Some Other

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?