Back To Square One

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Faroe Islands, August 2016

It feels as though I have gone back in time – well, sort of.

Let me to take you back to 2014, before Fibromyalgia had appeared on my horizon. My mother had finally moved into the retirement complex that was her idea of Utopia. Leading up to the move, on the Monday evening she had graciously (hmm, my tongue was firmly in cheek for that particular statement!) granted me special dispensation to begin packing her clothing, shoes and possessions. This was a huge concession on her part as it meant she was going to have to live surrounded by boxes for, oh, three days. Sorry, do I sound bitter?

Come moving day, I organised the removal men whilst trying to finish the packing, clean the flat, deal with all those last minute things that crop up and answer the phone to her, seemingly every 10 minutes. And, it was a stinking hot day. I do not and have never coped well with hot weather. The following fortnight continued to be excessively hot, with wall-to-wall sunshine. I was getting up at 5 o’clock every morning so that I could try to clean the flat properly before the day became even hotter. During the day I would have to take my mother out so that she could buy lots of new stuff for her new home, then, come the evening, I would do more cleaning and unpacking. After two weeks of cleaning, unpacking, sorting and so on, I finished. Phew.

I went home and, within a couple of weeks, was hit by a chest infection. After several weeks of the myriad joys of a chest infection, and almost as many courses of antibiotics, I was still suffering chest pain. I also had pain in the thoracic region of my back, which I had not previously experienced with a chest infection. Not only that, but I was totally exhausted: I was sleeping for hours during the day, as well as through the night. After a month or so, the Amazing Dr. A diagnosed Fibromyalgia.

I spent most of September, October and November asleep. Not dozing in a chair, but asleep lying on the sofa. (I don’t like going to bed during the day unless I really have to.) And, now, I feel as though I am in a time warp as I seem to be sleeping an awful lot of the time. Groooaaaaannnnn. Actually, I probably haven’t been sleeping quite so much as in 2014, but the amount of sleep does seem to be increasing this week. I have been able to do less and less during the past few days.

Not very long ago, I was able to do quite a bit. Even on a bad day I would be knitting, sewing or on the internet during the time that my body needed to rest. Now, however, things have changed. I still knit, but can only do a few rows in any session. I can do a bit of hand sewing, but only for 20 or 30 minutes. But… I now spend quite a while doing nothing (apart, perhaps, from watching trashy television). It’s a sobering reality, how little I can do. I still hope that this level of fatigue is temporary, that this Fibro flare will calm down, but it’s becoming more difficult to believe it.

I am at a stage in life when I should be enjoying myself. I have few responsibilities or obligations and I don’t have to work. I should be seeing, doing and learning new and exciting things, going out with family and friends, living the life I dreamed of. I shouldn’t be falling asleep at the drop of a hat and struggling to make sense of simple things. ‘Snot fair! I don’t like it!

 

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Well, I Didn’t Know That!

April Sunrise

April Sunrise

You find me, today, still languishing in the confines of a Fibro Flare. My memory isn’t very reliable at the moment, but I think this is the first flare that I have suffered since the onset of the condition in August/September last year. As you may imagine, there is an awful lot that I didn’t know about Fibro Flares, and I don’t wish to contemplate how much more I have still to discover. So, what didn’t I know?

I didn’t know that I could be so fatigued that even thinking would take more effort than it was possible to muster. It takes a huge amount of effort to formulate thoughts or ideas, and, as for actually putting them into words…

I didn’t know that I could be so fatigued that I would feel desperate for Peter or A.N. Other to know instinctively what I wanted to say so as to avoid the need for me to run the equivalent of a marathon by trying to put it into words.

I didn’t know that making my mouth and vocal chords work in harmony to convey my meaning could require so much effort that I would be able to actually feel the energy pouring out of me and leaving a metaphorical mess on the floor.

I didn’t know that I would struggle to say a straightforward sentence because my mind couldn’t keep up with ordinary, everyday things happening around me.

I didn’t know that taking something from the back of a shelf in the fridge would leave me on my knees, unable to close the door of the fridge, because I couldn’t move my arm because I was so utterly exhausted.

I didn’t know that, when I did manage to speak, it would rarely be louder than a hoarse whisper. Neither did I know that just three or four words could rob me of breath for more than a minute.

I didn’t realise how much effort is needed to even listen to another person. If someone says more than a few words, or speaks at the wrong speed, I have no hope of keeping up with them and, because my brain is so ‘foggy’ I can’t even guess what they were talking about.

I didn’t realise that being so worn out would make me so crotchety. It is easy to become sorely frustrated when the person I am speaking to hasn’t anticipated exactly what I wanted to say. Don’t these people understand that they are supposed to know what I am too exhausted to be able to even think? No, they don’t understand – why should they?

I didn’t know that I could be burning hot and sweating profusely, whilst my fingers and toes were frozen to the core. Nor did I know that the situation could change so quickly so that my body was desperately cold and my fingers and toes swollen and sore because they had heated up too quickly.

I didn’t know how desperate I would feel because of my complete lack of energy. I used to think that I knew a bit about being tired. Hah! In the words of a character from one of my all-time favourite TV programmes (Hogan’s Heroes): “I know noth-ing!”

Feeling A Bit Dippy

My Fibro Dip is continuing (hence the title of today’s post) and today it’s making me feel a bit miserable.

I think that sometimes Peter gets a little fed up with having me around feeling tired for much of the time, and who can blame him? Certainly not me. I get fed up with me feeling tired.

Today, for example, I got up at around 07.30 having slept well overnight. However, soon after 08.30 I needed to lie down and sleep. I slept until around 09.45, then promptly fell sound asleep until 11.30. Three hours!

I pottered around doing easy tasks and also ate lunch but I was still tired again before 14.00. That was when the misery hit me. Here I am. Little more than a tired lump. And it really hit me how tedious it is for Peter to have someone around who seems to be always tired. I felt like a drain on him for being so tired, so often. When I mentioned how I was feeling to him he assured me that he’s OK about it. I still felt miserable, although I think it was an actual symptom of the tiredness rather than an emotional reaction to it.

Some time has passed since 14.00 and I have spent it alternately doing tasks and resting – but at least I don’t feel as miserable as I did earlier.

I wonder if other Fibro sufferers feel misery as a symptom, rather than as a reaction, to misery?