Was It Ordinary, Or Extraordinary?

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Morocco, 2012

Something ordinary happened this week. Something extraordinary happened this week, at the same time.

No, I’m not talking about the hottest June day in the United Kingdom since records began (when was that, by the way? Does anybody know, or even care?). My description of the weather we’ve had this week would need to be subjected to heavy editing, so what’s the point of me wasting the effort of explaining?

Back to my original statement and I think I need to set the scene for you. The subject bears a massive build-up. The news is of such import that several national newspapers, including all of the broadsheets, naturally, have halted their respective print-runs to quote me for their lead story. OK, I may have indulged in a tiny bit of exaggeration there, but I’m sure you’ll agree that if I were telling the editors my story, rather than you, my lovely followers, they would be sure to recognise  how important a statement I am sharing here.

FPR and I have been away for a few days this week – hence the silence in these parts. Unfortunately, the weather decided to spoil our holiday. It was stinking hot and sunny,  for the entire time we were away instead of being cool and comfortable. The result was that I saw hardly anything and did almost nothing. I have disliked hot weather all my life: it actually makes me feel physically ill. However, despite the horrid heat with the added “bonus” of Fibro, I didn’t feel any worse than I do in any heatwave! In fact, once the thermometer began to look more like its usual self, I felt brilliant or, to be more accurate, I felt absolutely bl##dy brilliant! Better than I have felt for months, certainly since Christmas!

This week I have been mainly feeling like ME! Not Fibro me, but proper ME!

I didn’t realise how well I was feeling immediately – a bit like not noticing when a man has shaved off his beard – but, once I did, it was amazing. I have been able to do things over the past couple of days without having to work out when I’m likely to have sufficient energy. I have dashed about from one place to another, filling my day with various tasks and activities and even played football (well, more like foot-balloon) with my grandsons! I’ve been having a great time!

I admit that I was tired last night, but it wasn’t the Fibro tiredness and exhaustion, it was just plain old tiredness. In fact, it felt so ordinary that I almost felt happy that I was tired!

In my next post I shall probably talk about what I think might be the reason for how I’ve been feeling. Don’t miss it.

 

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Waves Are Not Only On The Beach

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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!

 

Posted in Coping, Day to day life, Fatigue, Fibro Warrior, Nausea, Sleep, Sleeping, Tiredness | Leave a comment

The Lurker

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The Sage, Gateshead, May 2017

Before we start, I know this photograph probably breaks lots of photography rules but I like it. I like how busy it is, how it has so many elements and that it shows lots of things and nothing, all at the same time. Not only that, but when I was looking for a picture to put at the top of this post, it just seemed to fit with the title.

The Lurker is a pretty good name for Fibromyalgia, don’t you think? It’s always lurking in the background, even if it’s not making itself felt. The trick is, I think, not to always be thinking of it. I don’t mean that one should go ‘hell for leather’ whenever one feels OK, after all, that probably wouldn’t be sensible, but not to carry around nagging thoughts about how soon it might manifest and in what way. It’s a fine balance to achieve, trying to be simultaneously aware but unaware, but it’s necessary for one’s own good. I suppose the trick is to find a level for day-to-day living that allows you to do things you enjoy in a way that, one hopes, won’t aggravate the Fibro. Obviously Fibro isn’t only reactive to outside forces, it clearly has a very stubborn mind of its own, but I think we can agree that, at times, what one does can trigger a flare-up. So, we have to find that balance for how we live our lives.

Part of my own search for balance has been to take life down a notch. That has happened in lots of ways, some of which I have barely been aware of, others that I have consciously decided needed changing. I’ll tell you what, though, it can be an interesting journey.

 

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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?

 

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Waking and Sleeping

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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.

 

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And Here’s Another Thing

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North Cape, June 2012

Yesterday I clicked on a link about Fibromyalgia that I saw on Facebook. A friend, who has had Fibro far longer than I, had shared this LINK to another Fibro-related blog. I rarely look at things about Fibro online, or elsewhere, unless there is something specific I want to research. However, something drew me to find out more.

When I clicked through to the blog and read the post, a light bulb went on inside my head! I could identify with what was being said. I don’t think I had ever really registered when something like this happens inside my head, but now someone else was talking about it… and it all made sense. Admittedly, and very fortunately, I don’t experience anything as bad as The Girl With Five Lads, but I certainly go through some of it. There are definitely times when it feels as though there is too much happening. Too much information. Too many directions I’m being pulled in. Too much to cope with.

“We all have times like those” you might say. “My life is really stressful.” “I’m always multi-tasking.” But, it’s not the same. It’s not trying to do cook the dinner, make a phone call, empty the bin and go to the loo, all at the same time. It’s trying to make sense of something that should be really straightforward, something which always has been simple before, but being unable to because you are being bombarded by huge amounts of information in different formats, at different volumes and speeds, in several different languages, all at the same time. The brain just wants to explode and then hide itself in a corner, so it decides to send you into a massive panic and tries desperately hard to make you crumple into tears. If you’re really lucky you’ll eventually be able to work out how to say “Stop”. And, if you’re luckier still, someone will be around who can help you to escape the attack of information, and give you a breathing space, a chance to calm down and recover.

Do you know the worst part about it? It’s feeling so pathetic because you “ought” to be able to filter all those ordinary things that have been attacking your senses and understand what’s going on – but you just can’t.

 

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Another Lesson Learned

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Singapore, 2015

I am pleased to say that this week hasn’t been too bad. Yes, there’s been fatigue, but it has simply been a nuisance rather than dragging me way down. Also, pain has been minimal. I should add, at this point, that I began taking the turmeric capsules last weekend. Consequently, I cannot be sure whether it is the Fibro that has been better this week, or whether the turmeric is a wonder product that began annihilating it as soon as I popped the first capsule in my mouth! I think it more likely to be coincidence.

What I have learned this week is that the Fibro is very reactive to environment and stress, even in the very short term.

Peter and I were busy working on a particular task, one day this week. Unfortunately, due to circumstances beyond the control of either of us, things were not going as well as we had hoped – you know the sort of thing: one step forward, two steps back. I began to feel frustrated which led to feelings of agitation, then on to tiredness, verging on exhaustion, plus a general feeling of not being well. I said I was having a break and went to sit down. After 10 or 15 minutes, all of those feelings I had been experiencing were calming down and I felt able to face the task again. It had been an odd sensation, one which I wasn’t aware of having felt previously. Understandably, Peter had misread the signs I was apparently giving off. He thought that I was feeling too unwell to continue and was, I think, quite concerned for my wellbeing.

I think that what had happened was that I had been stressed and overwhelmed by the situation, which had led to me suffering several Fibro symptoms, albeit for a  very short time. Once I had taken myself out of the situation and had some “time out”, I quickly recovered my equilibrium.

The experience was a valuable lesson about how stress can bring on a sort of ‘mini’ Fibro attack and, also, how taking “time out” for just a short while can alleviate those symptoms.

 

Posted in Agitation, Day to day life, Fatigue, Learning, Stress, Symptoms, Tiredness, Turmeric | Leave a comment