‘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”.


It’s VERY Expensive!

Not very welcoming, is it?

FPR’s mother is still in hospital, with all that it entails. She rings me, asking if I will do something for her, then gives instructions in her own particular way. Often the tasks are clearly unnecessary and unlikely to yield any positive result, which makes it difficult to be enthusiastic in the carrying out of them. The trouble is that these tasks take a heavy toll. They drain what little energy I have – and, believe me, it is very little.

You know what it’s like when someone is in hospital: there are telephone calls, more telephone calls and even more telephone calls; chasing round trying to find things the patient has asked for; walking and caring for the patient’s dog; miles and miles of extra driving, much of it on unfamiliar routes; meals at peculiar times because of visiting hours and travelling time to and from the hospital; trying to fit in ordinary day-to-day appointments, and so on. Then there’s the cost…

The cost I am talking about isn’t financial, it’s physical. I am feeling constantly drained and, because I am so exhausted, that is interfering with my sleep pattern. For the past couple of weeks I have been lucky to manage four or five hours at night, and, on several occasions, it has been much less than that. It is taking a heavy toll. The more tired I become, the more problems I encounter with my sleeping, the more pain I have, the foggier my brain is and the more unwell I feel.

As I said, it’s very expensive.

Waves Are Not Only On The Beach


Waves aren’t only found on the beach, are they? If you’re like me, your hair has waves, but waves can also be abstract (thank you, FPR for giving me the word I was seeking), like a wave of sound. However, the waves I am talking about cannot be heard by anyone and only one person can feel them when they develop. They are waves of things like fatigue, nausea or hunger.

Just a few days ago, I was thinking about and enjoying the relative hiatus in my fatigue – tempting providence, some might say. I’m not sure if “tempting providence” would be the right description: I prefer to describe it as appreciating the good times. Anyway, within a few hours the good times had rolled.

It began on Saturday morning with me feeling quiet. I know that might seem like a strange word to describe how one is, but, really, it is the best word I can come up with to describe my whole demeanor. When I’m quiet, I don’t feel ill, but neither do I feel well; I don’t feel like doing anything but neither do I want to be doing nothing – it has to be a very low-key activity; I don’t feel like talking, or listening, but I don’t want silence – just some low background sound from something like the TV or radio. This “quiet” feeling lasted several hours then the waves began.

The first wave swept across me when I had popped upstairs for some reason. It was an “I don’t feel right” kind of wave. By the time I had gone back downstairs, the next wave was hitting: fatigue, followed quickly by a wave of hunger. As I hope you can tell, the waves were coming thick and fast. Hunger was followed by fatigue, which was being chased by nausea which, in turn, had hunger hard on its heels, but fatigue wasn’t letting hunger get away with that and quickly overtook it. It was a peculiar sensation having so many feelings sweeping over me. I really needed to sleep.

Nowadays, when fatigue hits, I have a sleep in my recliner chair. I don’t like going to bed during the day as I tend to sleep too deeply. Usually, sleeping in the chair in sufficient to refresh me. (I realise how lucky I am that my sleeping does tend to restore me.) However, when I tried to settle in my chair, I realised that it wasn’t where I needed to be. My body wanted to be lying down so, for the first time for many months, I lay on the sofa, but as soon as I lay down another wave of hunger hit, quickly followed by nausea. I knew that I needed to eat something, despite the sporadic waves of nausea. I grabbed a breakfast bar and managed to eat it before the nausea reappeared. As soon as I finished eating, I lay down again, falling asleep within a short time.

When I awoke, I felt much better and got through the rest of Saturday with no problem. Sunday was fairly good. On Monday morning, I had my regular post-breakfast nap but it lasted longer, and was deeper, than usual. I was awake in time to go to my regular Monday morning activity and was pretty much OK for the rest of the day – “OK” meaning I was able to do a little, then rest, then do some more and rest some more. I was more tired than usual in the evening and retired to bed earlier than I normally would. I slept well and got up around my usual time and had a cup of tea before my post-breakfast nap (P-BN). The only thing was that my P-BN was just the start: no sooner had I woken from it than I fell asleep. That sleep went on for longer than I would have liked as, by the time I came to, it was too late for me to go to Tuesday morning’s activity. That was disappointing as fatigue and other reasons have prevented me from attending several of those meetings.

I am due to go out this evening and am desperately hoping that, by taking things easy today, I shall be sufficiently hale and hearty to be able to go tonight. Fingers crossed!


Waking and Sleeping

Morocco, February 2012

It’s very easy to become anxious about one’s sleep patterns. How often do we hear someone talking about how they “can’t sleep”? Actually, how often do we, ourselves, say those words? I know I used to talk about lack of sleep (maybe that should say “complain about”) quite often.

You might think that sleep, or the lack thereof, would be high on my list of grumbles, but, actually, it isn’t. Lack of restorative sleep is a well-known symptom of Fibromyalgia. Luckily, I don’t seem to have that particular problem: when I sleep I am refreshed by it, even if I sleep for only a few hours overnight.

In the past, stress has greatly affected my sleeping, but not always in the way you might think. There have been just a few occasions where a sudden stressful event has caused me to become overwhelmingly tired and to sleep deeply for many hours. I think it was my brain’s way of escaping whatever awful thing was happening. It was always strange as the events were of a kind that one might imagine would make sleep impossible. As I say, that happened rarely, more usually I would struggle to sleep. (My late husband would sometimes deliberately bore me to sleep, if I was having a rough time of things, by talking about a subject that interested him but had the opposite effect on me. Most times it worked like a dream!)

Over the past four or five years, I have realised that worrying about the amount of sleep I have is pointless. I believe that if one begins to actually worry about sleep, the whole problem grows exponentially. When I am going through a period of disturbed sleep, I simply accept it. It is a benefit of Fibromyalgia [yes, really, there is a benefit!] that I can sit in an armchair, with my legs up, and fall asleep. In fact, it’s not particularly unusual for me to fall asleep more easily in the chair than in bed! So, if I am lying in bed awake, I am quite likely to get up and go downstairs. I might have a cup of coffee, do some knitting or sewing or, perhaps, watch TV. Sometimes I will fall asleep in the chair, or on the sofa, and at other times I’ll go back to bed. The one thing I won’t do is worry about it.

Obviously, my situation means that I am able to leave the sleep to sort itself out without it causing me too many problems. I no longer go to work and I have no dependants, so my time is my own. I am very lucky to be in that position, unlike so many other Fibro Warriors who have partners, children and homes to organise. However, please don’t think that I take my good fortune for granted. I have had some truly awful times in my life and long ago reached the point where I learned to enjoy and appreciate every good time that came along.


Two Days On The Trot. Or not.

Stained glass
Beautiful stained glass window

May I begin by saying that I am not making any religious statement by showing this photograph – I photographed it, and am showing it here, because I think the colours are beautiful.

Back to Fibromyalgia…

Yesterday started sluggishly and didn’t ever manage to speed up. I was paying the price for having lived something like a *normal* day on Sunday. The Fibro was obviously thinking about punishing me for actually feeling pleased at what I had achieved over the weekend. Well, it was terrible of me to imagine I’d had something like a good day, wasn’t it? No, actually, it wasn’t terrible. Despite what the Fibro might think, I am allowed to have positive thoughts and good or goodish days. When it tries to tell me otherwise I will stand with a mutinous expression on my face, my fingers fixed firmly in my ears, loudly chanting “Nah nah, nah-nah nah” at it.

However, I may not be quite so bold the next day. Hmmm.

Cue, Monday and the sluggish start. I wasn’t too bad, but I certainly wasn’t lively. I managed to go out in the morning but by the time I returned home, just before lunch, I needed to rest and, preferably, to sleep. That wasn’t to be. We had visitors due at 1:30 pm so I simply rested in an armchair for a while. Then I received a message that they were likely to be late, but by then it was too late to sleep. “Oh, well,” thought I, “I can sleep after they leave”. No, that wasn’t going to happen as they were later leaving than I had anticipated. That wasn’t a problem in itself as they are pleasant people and it was good to see them. It was simply that, by the time I had sorted through some of the items they had brought, it was almost time for dinner so there was no time for a nap.

I slept fairly well overnight. (I am thankful that currently, my sleeping at night, although short, does refresh me reasonably well.) This morning I awoke earlier than necessary so lay in bed awhile before getting up to face the day.

My first task of the day before I even went downstairs. I wanted to continue some easy sorting and tidying that I had started yesterday. I had been tackling it in fits and starts and thought I would do a little before my first coffee of the day. It didn’t take long for my energy to wane and, unfortunately, that was how it stayed for most of the day. I had been due to have the morning out with some friends today but had to cancel as I knew I had to sleep and was unlikely to wake up in time to get ready and go. In fact, I awoke at the time I should have been arriving at Elizabeth’s house and couldn’t find enuogh energy to get up from the chair for quite some time after that.

That sluggishness and fatigue has lasted all day, although I have managed three or four small, sedentary tasks over the course of the whole day. I have deliberately tried not to overdo things today as I have things to do tomorrow so, would you mind letting the Fibro know that it would be better if it didn’t come to see me on Wednesday, please?



It All Mounts Up

Lots of bridges across the River Tyne

Little Sis and I are still on our holiday. Yesterday we sampled the delights of Hartlepool on a half-day excursion.

We had spent quite some time thinking, discussing and planning what we would do and had finally decided to visit the Art Gallery. As we alighted the coach, we were directly opposite the square where the gallery is situated so had only to walk about 100 yards to go inside. When we left we headed for the shopping centre which was directly opposite the square, right by where the driver had dropped us off.

We found a coffee shop where we stopped for a while, then we wandered around some of the shopping centre, calling in at just three or four shops. By the time we had done that, I was becoming very fatigued and the telltale back pain was starting. In view of that, we found a bench and sat down to wait out the last hour before the coach was due to pick us up.

During the short drive back to the hotel I rested. There was an optional excusoin in the afternoon which Little Sis and I had talked about going on. However, I realised that I was too lacking in energy, so Little Sis decided to go without me.

We ate the lunch we had brought back with us and Little Sis departed. After spending some time online, I lay down to rest. I fell asleep soon after, waking when Little Sis returned. I didn’t stay awake for long, though. Two and a quarter hours later, I was wakened by the telephone!

Even though I had slept for much of the afternoon, I also slept well overnight. I think going out each day this week has drained me to the extent that I haven’t been able to fully recharge my batteries. I think the cumulative effect of the past several days has hit me. I don’t know whether it has happened because of the bad patch I have had, or whether I have, perhaps, reached a stage where a holiday like this is simply too much to cope with in a short space of time. I think I shall reserve judgment until I have tried another coach holiday. Maybe that will give me a better idea…


A New Dimension

It’s been a funny old week, Fibro-wise. Adrenalin has played a huge part this week.

Staying with my mother is always a busy time: in fact, frantic would be an accurate description of some of the time. We live about 250 miles apart and she is knocking on a bit (she’ll be extremely annoyed with me if I were to say she is old!). Added to that, she has complex health problems which have progressed to a point where she is pretty much unable to go out alone. She manages pretty well with support from friends but there are some things which she would, understandably, prefer to be able to do with the help of someone more closely connected to her… and that means me, as my only sibling lives in Australia. Consequently, visits to her entail dashing about getting things done, either at her home or elsewhere. And that’s where the adrenalin comes in.

Even before the onset of Fibromyalgia I would be absolutely shattered on arrival at my own home, so you can imagine the impact now!

What I have noticed about the Fibro during this visit is an underlying fatigue, accompanied by feelings of nausea to a greater or lesser degree. At its worst during this week, it has felt as though I was actually going to end up vomiting. I am very pleased to be able to say that it didn’t actually come to that, although the nausea has felt dreadful at times.

I have tried to rest during the day but circumstances make it difficult. It has also been hard to get sufficient sleep at night. Hmmm.

I shan’t dwell on the possibilities, instead I shall continue taking each day as it comes.

Where Did Thursday Disappear To?

It was there. I know it was. I got up and it was Thursday morning. Peter was going to see his mother on Thursday morning and he did. So, where did Thursday go?

I’ll tell you where it went: it gently flowed through the passage of time, although it didn’t collect £200 for passing “Go”. It thawed what remained of the overnight frost. It ticked and tocked its way around the clock to the end of the working day. It followed the ebb and flow of the traffic. It thanked its lucky stars that it wasn’t Election Day. It softly called to say that the weekend is nearly here. It tiptoed into darkness. It slipped silently away to make room for Friday.

And, for most of the time, it left me to sleep.

My sleep pattern has been poor recently. I have been waking for the day early in the morning and haven’t managed to nap during the day. In the evenings my eyes have been becoming very tired making it difficult to focus and feeling sore and scratchy. Yesterday it all caught up with me. Peter went to visit his mother at 10.00am, after which I was promptly overtaken by sleep. I didn’t stir until about 2.00pm! I managed a couple of small tasks then fell asleep again some time after 4.00pm until 7.00.

I’m hoping to see rather more of Friday. Wish me luck!

Well, That’s New.

The tiredness hass continued this week. On Monday we were on a coach travelling to the northwest of Scotland. I had slept badly on Sunday night and on Monday I was desperate for sleep – and I mean desperate. I began to get frantic on the coach because I was so desperate to sleep. It was a horrid feeling. Peter was marvellous: he simply accepted that I needed to sleep. He didn’t ask questions, there was no unnecessary chatter, he simply let me rest.

Tuesday wasn’t too bad but Tuesday night was awful. I kept waking during the night: sometimes I was so cold I was shivering, at other times I was too hot. When I awoke this morning I didn’t feel at all refreshed. I felt exhausted, I ached all over and felt generally below par. All I really wanted to do was sleep. Although I lay on the bed after breakfast I didn’t drop off to sleep and, in fact, couldn’t really relax. I decided to get up and go down to the hotel lounge area whilst Peter lay down. I knitted for a while and would have been happy to just sit around all day. However, we had talked about going to the town centre today and finally managed to stir ourselves to go.

The trip to the town wasn’t particularly successful. The aches and pains I had woken with were very much in evidence during the bus journey each way and also whilst we were pottering around the town.

On our return to the hotel I lay on the bed and did, eventually manage to fall asleep but, again, upon waking I did not feel refreshed.

Apart from feeling tired, all of the symptoms that I have mentioned above are new to me. I think today can definitely be put down as a Fibro Day. Oh gosh, I hope they don’t happen often.

How Much Sleep Is “Enough”?

I wonder how much sleep is “enough”?

When Margaret Thatcher was Prime Minister it was said that she needed only four hours a night.

I read this on the website :

While sleep requirements vary slightly from person to person, most healthy adults need between seven and a half to nine hours of sleep per night to function at their best. Children and teens need even more (see Average Sleep Needs table below). And despite the notion that our sleep needs decrease with age, older people still need at least seven and a half to eight hours of sleep.

I don’t think I would want to keep a note of how long I sleep when I’m having a bad few days with the tiredness and exhaustion as it would be too depressing. However, what about on good days? How much sleep might I need then? Well, if last night and today are anything to go by, n-o-t v-e-r-y m-u-c-h. NOT VERY MUCH. Not very much.

Last night I stayed up late watching an enjoyable, rubbishy film on TV, then I watched the news on a 24-hour TV news channel, followed by a comprehensive weather forecast before doing some tidying up. It ended up being around 2.45am when I went to bed and at least 3.15am before I fell asleep. I awoke somewhere around 8.45am which meant I had something like five and a half hours’ sleep and yet, today, I have had a good day. And I mean a good day!

I have had no bouts of exhaustion today – hooray! I haven’t suffered excessive tiredness today – woohoo! I’ve been able to function (almost) normally today – wow! (OK, maybe the ‘wow’ is a little over the top 😉 ).

It has been lovely to have a bit of time today when I have felt normal, oh and my goodness, it has felt so good. It has been a while coming and it is so very welcome.


It wasn’t normal. It wasn’t what my normal seems to be now, as I wasn’t feeling desperately tired, but neither was it my old normal – I had too little energy for that. However, it was so much better than when I am drowning in exhaustion, that ‘normal’ seemed to be the most appropriate label for it.

Anyway, regardless of how today is labelled, it was a good day and I gad it after only five and a half hours’ sleep. Pretty good, huh? Well, I think so!