Hello? I’m Afraid I Can’t…

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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.

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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?

 

Perm Any Two From Three

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My Grandchildren’s Favourite Team [Photograph from Burnley Football Club website]

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

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

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

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

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

 

One Good Turn…

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Edinburgh

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

Anyway, back to the point of this blog post.

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

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

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

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

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

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

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

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

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

‘Twas The Night Before Christmas…

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The Italian Chapel on Mainland in the Orkney Islands

FPR and I have spent a lovely few hours with family this afternoon. They had their Christmas celebration yesterday so on Christmas Eve it was Boxing Day! A bit of a mixed-up time, eh? Not only that, but I have had a generous early Christmas present.

My friend, Fibro, decided to give me a present consisting of multiple symptoms that I don’t usually have a problem with. I must say, at this point, that none of the individual symptoms has been unbearably awful. However, the arrival of lots of them at once has been a bit anti-social. It has felt overwhelming, at times. I have been feeling pain in places that don’t usually give me any trouble and it has also been making itself at home in the places where it is a familiar face. It has been particularly bad in the thoracic region of my back and up across my neck, shoulders and arms. Fatigue has been playing up for a while but, the last few days it has ramped up the action or, should I say, the lack of action. An example of this is that I have only been able to work a few short rows of knitting, before having to rest – particularly irritating as I am trying to complete a Christmas gift!

Sleep has been less restorative than usual. Up until now, sleeping has revived me, but that doesn’t seem to be working, at the moment.

The Fibro Feet have been working hard causing discomfort, as have the Fibro Fingers. Add to that particular mix, the Restless Legs and you have a lively dance to watch.

With the symptoms I have mentioned, and others, has come a general feeling of unwellness. Bossymamma has not been a happy bunny!

As Anne with an ‘e’ says: “Fibromyalgia: the gift that keeps on giving”.

This? That? Or Maybe Some Other

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Riga. December 2016

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

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

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

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

 

A Little Bit Of This

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Newcastle-upon-Tyne, May 2017

This week, Freddy Fibro seems to have settled into a bit of a routine. I can’t really say it has been bad, but neither can I say that it has been good. What it has been is changeable, rather like the weather we’ve been having hereabouts over the past few days.

It’s all been a little bit of this and a little bit of that. When I have felt fairly good, I’ve been tidying, sorting and decluttering the items I have amassed in connection with all the crafts I like to dabble in. Because I flit from one craft to another, I have ended up with a lot of craft stuff. That, in turn, means that tidying, sorting and decluttering is, necessarily, a huge task. (*blushes gently) I am determined not to become overwhelmed by job and am taking it in tiny, bite-sized pieces. Actually, I have little choice but to tackle the job this way as there isn’t much energy flying around my body at the moment!

I am finding that, having set to tidying and sorting, I soon run out of energy. The manifestation of the fatigue has altered: whereas, previously, the fatigue has hit me like a 10-ton truck, this week it has crept up on me. It’s difficult to put it into words but it feels as though my mind and body are responding to sub-conscious signals. It doesn’t feel like fatigue initially. However, the telltale pain in the thoracic region of my back comes on very quickly and I do have to rest. My periods of activity are short, whereas the periods of rest are longer than usual. Despite that, I am getting on with my major sort-out. Shame I can’t “sort out” Freddy Fibro, isn’t it?

 

An Honest Day’s Work…

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Echo, April 2016

Today, I have managed to achieve a fair amount, with just a short rest from time to time. In Fibro terms, I think I would be justified in claiming that I have done an honest day’s work today. Yes, I have done considerably less than someone without a chronic condition would be likely to do, but I am happy with my achievements for the day – except when I look in the room where I was working and spy the chaos that reigns. That is due to the sudden enforced end to my work. Everything just had to be left. However, although it looks as though it is an absolute tip, it is actually very near the point of being beautifully tidy, so it won’t take long to complete the task I was engaged in.

It is a wonderful feeling, knowing how much I have done today – even if I am suffering the thoracic pain of fatigue. Oh well, can’t have everything, can we?

 

What Does Pain Feel Like?

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I think this image is probably a pretty good place to start!

While I was lying in bed awake this morning, the subject of pain came into my mind – not really surprising as I had been in the process of turning over, which is a painful process. I started thinking about the pain that I feel, the different places it manifests itself and how varied it is in character and ‘feel’.

I thought I would insert an image here to show the trigger points associated with Fibro: enter problem number 1. Everyone with Fibro experiences it differently and, although there are several known trigger points, not everyone has them. None of the images I found showed all of the places where I experience pain. (I’m not saying that the images don’t exist, just that I couldn’t find what I was looking for.)

Feet

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Bossy Feet!

These are my feet. Fat. Puffy. Ugly. Feet.

In the very early days of my diagnosis I didn’t have any particular fibro-related problems with my feet. I had had hot, swollen feet for many years so, for a while, it was difficult to tell the difference between my pre- and post- diagnosis discomfort. However, that is no longer the case.

Some time ago, I began to feel pains in both feet which I could only explain to people felt as though I was walking on shards of glass, even if I was sitting down – a feeling that was definitely different to anything I had felt pre-diagnosis. Gradually that sensation changed to more of a stabbing pain – feeling as though someone was continually piercing me with a knife in both feet. Sometimes the pain in my feet is so bad that it makes walking nigh on impossible: the pressure involved in actually placing the sole of my foot on a hard surface becomes pretty hard to bear. I try to have my feet elevated when I sit, to ease the discomfort, but when it is particularly bad, it really only eases when I am lying in bed, relaxed.

Arms

Oh, this is a fun one! Where do I start? Well… The pain comes in several different ways in various areas of, in particular, my left arm. Sometimes the pain begins in the tips of the fingers of my left hand, goes all the way up through the left arm to my shoulder, all around the thoracic region of my trunk, across my neck, through my right shoulder and all the way down to the tips of the fingers of my right hand. Luckily, that doesn’t happen too often. More usually, the pain is concentrated in my left arm and shoulder, appearing also in my right arm and shoulder if I am feeling particularly tired.

Most of the time, I have pain in my upper left arm and shoulder which feels similar to a pulled muscle. When it becomes more severe, I have difficulty lifting, or even moving, my left arm. When the pain appears in the lower left arm, it has the feel of pain that emanates from a muscle, but seems to be in the wrong place. Those pains are unpleasant, but the worst is when I feel pain on the outside of both upper arms which feels as though I am being squeezed and squashed between two thick metal discs on long rods. I think the reason why this sensation is so horrid is because it feels as though I am being restrained and it leads to me feeling slightly claustrophobic. It also feels weird.

My upper left arm is also sometimes painful when I shower. Occasionally, feeling water splashing on my skin causes pain but, more usually, it seems to be a reaction to the sensation of the shower puff rubbing across the skin. Much as I like using a shower puff, I have invested in a couple of soft baby sponges, which appear to be alleviating the problem.

Neck

I touched on this in the previous section. As well as the pain that creeps across from my left arm, pain also develops independently in my neck. It creates a tired feeling in my neck which, in turn, makes my head seem so heavy that it’s as though my neck is unlikely to be able to bear its weight. I think this leads to fatigue taking hold, although it may be that the fatigue is what causes the phenomenon.

Back and Chest

I’ve put these together because, often, pain appears in both simultaneously. This happens, particularly, when I am reaching the point of overdoing things. The location of the pain in the chest is directly opposite where it is in the thoracic region of my spine. The pain doesn’t spread across the area, it remains stationary. In the chest, it manifests as a tightness, similar to the tension that one can feel in an anxiety attack. In my back, the pain is very like that which I feel when I have a chest infection. In fact, this was the first Fibro pain that I experienced and was the initial symptom that led my GP to make the Fibro diagnosis.

As you can see, the pain pops up all over the place, and in several guises. The pain is debilitating to a greater or lesser degree. Sometimes, it appears all over my body, making everything hard to do: sitting, standing, walking, bending. At other times, it is more manageable. However it feels, I try to carry on with my life, to a greater or lesser degree, adapting how I do things. I’m not ready to give in to the pain completely, even if I do groan when it hurts!

 

And Then Came Saturday

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Door knocker at Durham Cathedral

After all the activity of the holiday, it was good to be home. I definitely felt the need to relax in that way which, for me, only really seems possible at home. It’s a similar feeling to the one that comes when I am feeling a lot of fibro pain and fatigue and can finally collapse into bed.

I was hopeful that, on Saturday morning, Little Sis and I would be able to trot into Manchester to a shop that we were each keen to go to. Alas, when Saturday dawned – far too early – it was obvious that Manchester was not going to be graced with our presence. I was feeling something like fatigue, although not exactly, but also an unusual flatness of mood – not depression, not apathy. I don’t know what it was or how to describe it. However, it held me in its grasp all day – not only was I unable to go out due to fatigue, I didn’t even want to think about going out, let alone actually go out. It was no fun for Little Sis, which saddens me somewhat, but I am so very lucky because, even so, I know it’s OK.

Little Sis went home early on Sunday, as planned, and I had another quiet day. I was no longer in the grip of Saturday’s strange mood, but I was still lacking much vim and vigour. Various pains came and went, then came back and went again. All in all, it was a pretty unremarkable day.

Along comes Monday, and with it more changes. This time things were more “normal”. When I say “normal”, what I really mean is “fibro normal”, in other words, intermittent fatigue, accompanied by sporadic aches and pains. I’m beginning to wonder whether holidays are worth all the bother.

Hmm. Yep, I think they probably are.