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

Rubber Balls R Us

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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.

 

 

 

Posted in Bad day, Cannabis oil, Coping, Day to day life, Fatigue, Fibro Warrior, Good Day, Pain, Symptoms, Turmeric | Leave a comment

Two Days On The Trot. Or not.

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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?

 

 

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