A Very Special Gift

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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.


‘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.




You Have To Take The Bad With The Good

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!


(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…


The Pleasure And The Pain

Sunset at Stepping Hill Hospital, 29 August 2017

Regular readers of this blog will know that I am very fortunate as pain is not a large part of my fibromyalgia. I hope new readers will accept that fibro isn’t always all about pain.

FPR’s mother has recently been sampling the delights of the NHS, as delivered by Stepping Hill Hospital, which is to the south of Stockport in Cheshire. We live on the northern fringes of Greater Manchester which means there are quite a few miles, and an awful lot of traffic between there and here! Even though I love driving my car and find it less tiring to drive than my previous one, sitting in traffic is no joy.

On Tuesday of this week, FPR and I set off with Lettie, m-i-l’s best-ever black labrador, on a hospital visit. Having made an early start, we had decided, for various reasons, that we would return home before the rush hour. There were a couple of tasks that I was hoping to complete for m-i-l that day which was why we set off when we did. Yes, well, the best laid plans and all that. I think it fair to say that our day did not go as planned – it felt rather like swimming in custard with an anchor tied to the ankles.

Due to a particular problem that cropped up, and a poor decision made by me, we ended up getting home much later than anticipated – but at least I had the pleasure of having completed everything I had hoped to! Oh my goodness, though, have I suffered for it!

On Wednesday, I had a quiet day. I knew I needed to be careful having had such a full-on day on Tuesday and I was feeling a bit tired. No, that’s not quite it. I felt a bit ‘squashy’. By that I mean that my brain was foggy, and my body felt like the physical equivalent of that, resulting in an overall feeling of squashy-ness. I gently plodded through the day, doing a bit of knitting, a bit of reading, spending a bit of time on my iPad – nothing too strenuous – and feeling very pleased with myself. Oops, that last bit was a mistake.

On Thursday I felt diabolical. I was so fatigued, I couldn’t even reach the dizzy heights of squashy-ness. I took things very easy. I did less knitting, no reading and less time on my iPad, but, even so, I felt worse as the day wore on. By the time 4.00pm came I knew I needed to go to bed. I usually avoid sleeping in bed during the day as I tend to recover my energy better after resting (with or without sleeping) in my recliner chair. However, sometimes that just isn’t enough, and that’s what was happening on Thursday: I wasn’t only feeling completely exhausted, I was feeling decidedly ill and nauseous – and it was getting worse with every step I took. Going up the stairs was quite interesting as I had to stop after every couple of steps.

I fell asleep almost as soon as my head hit the pillow. Zonk!

I awoke at around 6.00pm for three or four minutes and then zonked out again until about 7.00pm. I felt very much better than I had before I went to bed, but I still didn’t feel great. However, I did improve as the evening wore on until, by the time I was thinking of going to bed, I was wide awake and raring to go. I stayed up a bit longer, doing things that should prepare one for sleep, then retired to bed. I lay in bed, wide awake, for a couple of hours then gave up trying to sleep and got up again. I eventually fell asleep in my chair for an hour and a half or so and that was it until Friday night. Consequently, I wasn’t full of beans on Friday either. Unbelievably, the fatigue and exhaustion were still hanging over me yesterday!

I had the pleasure of doing everything I had planned to on Tuesday, but, my goodness, I have paid for it with the psychological pain of fatigue and exhaustion that I have suffered since.


Rubber Balls R Us

Sydney Opera House from The Rocks

Well, given the title of this post, you won’t be surprised to hear that the Fibro has been up and down this week. Monday was mainly up then Tuesday was down. Move on to Wednesday and the Fibro was behaving itself pretty well.

Peter and I spent most of Wednesday at his mother’s home, after having delivered a car-load of charity donations en route. RB (Peter’s nickname for his mother) has asked me to help her with sorting and disposing of some of the things in her home. Her health has been fragile recently and it has given her plenty of time to fret over all sorts of things – something that I and, probably, many people with a chronic condition can identify with! Although I have far less energy than before the Fibro, decluttering is one of my favourite hobbies – especially when it is someone else’s clutter! The advantage of helping RB is that, in her current state of health, she needs to be careful not to overdo things, which means that I also get to rest.

RB was so concerned about things that she had convinced herself the room we were planning to sort was in a terrible state. In fact, it was far better than I had anticipated. Most of the chaos was superficial, meaning that very little energy was needed to make a huge difference. I was glad about that because, although I felt considerably better than I had the previous day, I could feel the fatigue waiting to pounce. However, I took things carefully and managed to last the day.

Cue, Thursday and abysmal energy levels. I spent most of the day in my armchair, doing easy tasks. Whenever I moved from the chair, the pain in the thoracic area of my back (my particular alarm bell for impending extreme fatigue) came on almost immediately. Moving around also made me feel unwell, due to the lack of energy.

My goodness, those rubber balls have been busy bouncing up and down this week, haven’t they?

Friday came and, with it, an increase in my ability to do things. I was still fatigued and struggled to do things but I did manage to do a full grocery shop in the morning, which was just as well as the cupboards were bare.

In the afternoon, I was due to see my GP, Dr. Azeer. I have to give him bonus points for not letting his welcoming smile slip when I told him I had a list. It was a successful visit during which we discussed the use of turmeric to ease pain. I wanted to check that taking turmeric capsules would not interfere with any of my medication and he confirmed that to be the case. I told him I had tried cannabis oil and it had not helped but that I thought it worth trying turmeric, especially having heard good things about it from several sources. I began taking the turmeric on Friday evening so, watch this space for news of if or how it affects my pain levels.




The Trouble With Friends…

Seydisfyjordur, Iceland

The trouble with friends is that if the house is dirty and they decide to visit, cleaning has to be done! That is most definitely a major disadvantage. I have never liked housework but now, with having Fibromyalgia, I dislike it even more.

I did a lot of cleaning over the weekend, all of it punctuated by periods of rest, or even sleep. As the weekend wore on, I became more worn out. I don’t suppose my strong dislike of housework helped. I ground to a halt on Sunday afternoon and had to really drag myself upstairs to pack the small suitcase I would need for the short holiday said friend and I were going on. I had planned to have a shower and pack the case whilst my body was drying (I’m too lazy to dry myself!) but I was just too doggone tired.

I got up bright and early this morning – OK, not ‘bright’ but definitely ‘early’ and managed to shower and wash my hair, ready to face the day. After a very quick drink of squash (couldn’t face coffee), we set off on our adventure. Peter and I had agreed that I would drive the three of us to the coach pick-up point. I have to say, I was glad it was only three miles away – I really didn’t feel like driving far.

We sat in the car for a few minutes, awaiting the coach, boarding it soon after it turned up. It soon became obvious that energy was going to be in fairly short supply.

By the time we reached Thirsk, where we were stopping for two hours or so for lunch, I was completely worn out. I had pain in all the usual places, plus a couple of new ones and was struggling to walk along. Lunch and a coffee revived me somewhat but the benefits were short-lived. All I wanted to do was lie down and sleep. I tried to sleep on the coach but only managed short snatches. I think I was over-tired as I couldn’t sleep in the hotel room, either.

My fingers are well and truly crossed that I sleep well tonight as we have a long day in Durham tomorrow and I really, really, REALLY want to see Durham!

Wish me luck!