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!

It’s A Little Bit Me…

Handmade Mosaic Tile Borders. Morocco, 2012

Time for a touch of nostalgia, everyone. Today’s title is borrowed from this song by The Monkees. They were huge when I was young and impressionable. I used to enjoy hearing their songs and always thought Mike Nesmith was quite dishy. Oh gosh, that makes me feel old! Anyway, as I say, I borrowed part of the song title for this post.

It has been very quiet here, at Bossy Towers. Like much of the UK this week, we have had snow and low temperatures which have encouraged us to stay wrapped up warm and snug indoors – as if we needed any encouragement! The situation has suited me well during the past few days as energy levels have been low. Anything that I have managed to do has been for less than half an hour and, often only a few minutes. It’s been “do a little of this” then “a little of that”. In fact, for much of the time, I haven’t really been doing much at all. Life has certainly changed from when FPR would see me knitting, or sewing, and comment that I always seem to be doing something, always busy. I am hoping those days will return because, at the moment, I can’t even knit for more than a few rows before my oomph is oomphed out. Oh well, at least I can still knit… unless it’s something for me! That’s when the Fibro Fog kicks in, Big Style, but we’ll overlook that for the moment.

Just thought I would mention that Tinnitus is being a real pain at the moment. For the first time that I can remember, the tinnitus in my right ear actually interfered with my ability to hear. Usually I hear everything above the ever-present noise, but once or twice in the last couple of days, I have had real trouble working out if there was any external sound. Pah! Just get lost, tinnitus: I really am not interested in what you are trying to do.

It’s only a very short post, this week. My feet are getting cold and I have just spotted two microjoules of energy which I am going to grab and make full use of!


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

Hey Ho, Skip To My Lou

Patagonia, 2014

This has been a funny week, Fibro-wise, culminating in two, very definite, Fibro Days. They have been the sort of days when everything feels Fibro-y. “Out of sorts” types of days. Ache-y, tired-y, Fibro Foggy, weary, fatigue-y, grumble-y sorts of days. The type of days when lots of different Fibro symptoms make an appearance. In fact, if I was keeping a register, yesterday and today there would be ticks in almost every box.

One box that has most definitely been ticked for both days is the one that relates to “Skip to the loo”. I have most certainly done a lot of skipping in that direction! When I have these Fibro Days, skipping to the loo decides to make its presence known. And what a darned nuisance it is! Why does it have to happen on the days when I really don’t feel like jumping up and down? I really don’t feel like wearing holes in the carpet between the living room and the Little Girls’ Room! I would far rather stay collapsed in an elegant heap. It takes a huge amount of energy to rearrange myself into a supposed relaxed pose once I have completed the fifteenth “skip” of the day. It would, I’m sure, be far easier had I attended a Swiss Finishing School. However, my educational career fell far short of those dizzy heights – so far short that I haven’t even been to Switzerland. Hmm. Note to self: “Go to Switzerland on a lovely holiday”.  I just hope I won’t have to skip up a mountain to the loo!



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!



Perm Any Two From Three

12/12/2017 Premier League Burnley v Stoke City
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…


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