You Have To Take The Bad With The Good

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Carpets on display in Morocco, February 2012

Sometimes, someone or something somewhere (depending upon your beliefs) smiles upon you, making things go well. Sometimes, those same someones or somethings are in a pesky mood and decide to take it out on you and make life a giant-sized pain in the bottom.

Last weekend, the someones/somethings were in a good mood because they decided to go along with my plans to have a day out with my family. Everything that I did or did not do in the few days leading up to Sunday, was designed to help me manage to actually take part in the activity. I can scarcely believe it, but it actually worked! Like a dream! Woohoo! I even managed to get a little shopping done on my way home!

Result!

(Can you tell that this doesn’t happen as often as it did pre-Fibro?)

However, since that expedition, the someones/somethings have decided to use me as their personal punch ball. Their displeasure culminated in me grinding to a sickening grinding halt halfway through a little task I was doing for FPR. I must have been in a bad way because he commented on it when I thought I was still managing quite well. It didn’t take long for me to be not managing at all. Anyway, it was a price worth paying for having managed to go out on Sunday. So, it is still a…

Result!

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Posted in Achievement, Bad day, Coping, Day to day life, Fatigue, Fibro Warrior, Good Day | Leave a comment

The Vice Squad Have Got Me!

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Jamaa al-Fna, Marrakech, Morocco. January 2012

It had to happen some day. I knew the Vice Squad would eventually catch up with me. I’m not sure that I deserve it, though. I really hope it will be gentle with me.

No, I don’t mean THAT Vice Squad! Whatever do you take me for? No, don’t answer that! The Vice Squad I am talking about is the one that attacks my upper arms and uses a metal prod on each arm, which feels as though it is about three inches (7.5 cms) in diameter, to do so. It squeezes those two circular discs together, towards each other, in its vice-like grip. Even though no-one can see them, and you could argue that they don’t exist, I can tell you exactly what they look like. How weird is that?

The discs are about 1/2″ (1.25 cm) to 3/4″ (2 cm) deep and the rims are painted a burgundy red, with a hint of blood red in the colour. The red paint is glossy but not brilliantly shiny. The face of the disc looks similar to a potter’s wheel, with a narrow concentric circular groove cut in every inch (2.5 cm) or so. That surface is unpainted metal, smooth, but not shiny. I don’t know if other people picture the instrument of torture they are suffering, but the image of those discs immediately comes into my mind when the vice starts to grip. My mind’s eye is a very busy little bee! Funnily enough, I was reading an article online yesterday about someone who is the very opposite of me when it comes to having a virtual image – she has Aphantasia. In other words, she isn’t able to picture things in her head. I found the piece fascinating – well worth reading, which is why I have included a link to it.

 

Posted in Arm pain, Coping, Day to day life, Fibro Warrior, Mind, Pain, Symptoms | Leave a comment

Oxy-Acetyline

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Morocco. February 2012

Occasionally, one can learn (OK, ‘hear’ rather than actually ‘learn’!) something from even the most mindless source. That was what happened to me a couple of days ago. It was something about oxy-acetyline torches and it was quite interesting – to me, anyway. Sadly, I can’t remember exactly what it was but I do remember being amazed at the extremely high temperatures that can be reached.

“Hmm,” you say, “what on earth has that to do with Fibromyalgia?”. Allow me to enlighten you, although, may I say how surprised I am that you haven’t yet worked out the link? It seems pretty straightforward to me!

Allow me to give you a hint…

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Bossy Feet!

Have you worked it out, yet?

Do you give up?

OK, I’ll tell you.

For the past few days, my feet have been feeling as though the skin is being burnt to a frazzle by an oxy-acetyline torch, causing it to peel off in huge pieces. The pain in my feet has been very much more severe than previously. It would be easy to say that it was unbearable but, of course, I have borne it. It has certainly been unpleasant. Actually, it wouldn’t be an overstatement to say it has been downright nasty.

It was a shock to me that the pain in my feet was so bad, and so different from what I had experienced previously. I don’t know why I was so surprised but I suppose it was because I had become used to how it felt when I was suffering Fibro Feet and it hadn’t occurred to me that those sensations might change! Pretty dumb, huh?

Hmph! Shame it wasn’t ‘numb’ rather than ‘dumb’, then they wouldn’t have felt so darned sore!

 

Posted in Changes, Coping, Day to day life, Feet, Pain, Symptoms | Leave a comment

I Must Go Shopping!

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Lettie is feeling a little chilly

Hello there. This will have to be a quick post as I am in a hurry to go shopping. I think John Lewis would be a good place to go but I may need to call in at a supermarket, too.

What do I need to buy so urgently, you ask. Well, our cutlery is looking a little the worse for wear so it would be as well to refresh that drawer. I think I shall buy a set with more place settings as we seem to use them all in no time at all. The situation is particularly bad with the spoons. It seems as though even first thing in the morning there are few usable spoons around. Not only that, but everything seems to need more spoons than usual. Just sitting in the chair, thinking about standing up, often feels as though it is using several of that day’s spoons. I think this is probably the worst patch of fatigue I have had since I was first diagnosed with Fibromyalgia. It would be easy to think “it’s not fair” but it doesn’t help. If anything, it makes things slightly worse. Mentally, I cope better if I keep away from the “Why me?” thoughts. I don’t know whether that would be the same for others but I suspect it may well be.

So, what about the supermarket? I need to dash (!) in there for some window cleaner. Everything is looking foggy so I think the windows must need cleaning. [Yes, I know, it’s corny but I just felt like being silly – on purpose, for a change!]

Actually, at the moment the Fibro Fog doesn’t seem particularly funny. Things have moved on from thinking one thing and saying another. This morning I was sorting out my medication and filling my weekly pill boxes. Things seemed to be going fairly well until I had filled the final box. I noticed that there was a half-full blister pack sticking out of a box. I had deliberately placed the pack that way after using it for the penultimate box as I knew I would be emptying it for the final box. However, once I had filled that box, I noticed that that pack was still half-full! I had put a different (and wrong) type of tablet in each day’s compartment of that box. I had no idea which type of medication I had wrongly used, although, luckily, I recognised which pill it was in each section and was able to remove it. It was a scary moment. Have I reached a point where I cannot be trusted to deal with my own medication? I really don’t want that to be the case… Really, really, really.

That mistake has given me a fright. However, I am not going to panic. I am going to allow myself to calm down and to mull things over. I need to recognise the best way to deal with this. I hope I manage to do so.

 

Posted in 'snot fair, Coping, Day to day life, Decisions, Fatigue, Fibro Fog, Thoughts, Tiredness | 2 Comments

I Can’t Think Of A Title!

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My first view of the Three Sisters, near Katoomba in the Blue Mountains*, New South Wales

I wrote on here recently about trust and confidence when living with Fibromyalgia. It is a subject which often kicks about in my mind.

I think that, upon meeting me for the first time, most people think that I have oodles of self-confidence. I am aware that I often come across to others as brash and in-your-face. However, that is not confidence. In fact, it is the exact opposite. When I am in a new situation I either go very quiet and melt into the wall, or I take a deep breath, grasp my own lapels (metaphorically speaking) and charge in to the situation, me and my outspoken-ness. Don’t worry, I’m not intending to get all philosophical or psychological about that side of me.

Another thing that I am known for and which is a more accurate insight into my character, is my honesty. By honesty, I mean that if someone requests my opinion, I tend to be honest, rather than saying what the other person is hoping to hear. Obviously, if someone simply needs a bit of a confidence boost, I will give an appropriate. However, I really don’t understand why people ask for someone’s honest opinion when, actually, what they want is for you to puff up their ego with as many lies as you can muster. There are occasions when someone benefits from the honest opinion of another, as I hope the following anecdote shows.

Little Sis and I were shopping in Exeter and were in the Ladies’ department of a well-known department store. There was a lady who was trying on an outfit to wear as Mother of the Bride. The shop assistant who was ‘helping’ her was telling her how lovely the outfit looked and the lady’s husband obviously would have said a purple banana suit was exactly right if it meant he could escape more quickly. Little Sis and I saw this tableau and both agreed that the outfit was, most definitely, not right. The lady, herself, was very hesitant and clearly not convinced about the outfit so I quietly whispered in her ear, apologising for interfering, saying that the outfit wasn’t the right one. She looked relieved and thanked me for my comment.  Later in the day we bumped into the same couple again. The lady’s face was wreathed in smiles as she told us that, since seeing her earlier in the day, she had found and bought the perfect outfit to wear to her daughter’s wedding. We were really pleased for her.

This week someone, whom I know gives honest opinions, was very complimentary about something I had done. Those words meant a huge amount to me, the more so because they were completely unexpected and uncanvassed. My confidence in my own abilities has taken a battering recently because of (i) the silly mistakes I’ve made which appear to be due to Fibro Fog and (ii) having to pull out of various activities, which gave those comments added significance for me. By and large, I do prefer people to be honest about my work and/or achievements. That’s not to say that I take them lying down! I don’t promise to change something just because it has been suggested to me – I never have been any good at doing as I was told! However, if I have asked for an opinion, for example, on how an item of clothing looks on me, I would prefer to be given an honest response which I can then take into consideration when deciding on my next step. Like everyone else, I make mistakes, but how can I learn from them if I’m not aware that I’ve made them?

 

*For those of you who don’t know, the Blue Mountains get their name from the highly flammable blue mist which comes off the eucalyptus trees. For those of you who already knew that, don’t read this paragraph!

Posted in Achievement, Coping, Day to day life, Decisions, Fibro Fog, Learning, Reassurance | 2 Comments

Some Enchanted Evening

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Only one pair is mine.

When I was a child I loved the film musical “South Pacific”. Actually, I still quite like it, and, also, Calamity Jane:

“Oh, the Deadwood stage is a-coming on over the hill, deedle-e-di-di diddle-iddly di dee. Twenty three miiii-iiiiillllllessss we’ve covered today, Oh! Whip crackaway, whip crackaway, whip crackaway”.

I liked the songs in South Pacific, as well – most of them, anyway. Having said that, I really didn’t like the corny accent of the male singer of Some Enchanted Evening. Although Rossano Brazzi played the character in the film version, the actual singing was apparently done by Giorgio Tozzi! No matter. Whichever one it was put on a strange accent.

What has all this to do with Fibromyalgia, I hear you ask. Oh, can’t you see the link between the two? Cue a perfect segue… No, can’t think of a perfect one so I’ll just continue with what I was planning to talk about in this post and hope that I remember to make it clear at the end.

I’m pretty sure that every Fibro sufferer (or Fibro warrior, if you prefer) experiences their Fibro differently from everybody else. There is such a range of symptoms, causes and degrees that that must be the case, mustn’t it? I find that some of my symptoms can be triggered by specific things, others seem to appear from nowhere and, yet more, decide to form their own habit. This post is about a symptom that has carved out its own special niche – not that it only uses that niche! Oh no, it still jumps out of the woodwork when it fancies making even more of a nuisance of itself. It’s a very naughty symptom and I would smack its bottom, if I could.

Most evenings, after dinner, I sit relaxing in front of the one-eyed monster, playing with some knitting or sewing. I have noticed that this symptom is very sociable and certainly not very happy when it can’t be near me so, each evening during my relaxathon, out it pops – full of the joys of spring and ready to wreak havoc. (Did I tell you it’s very naughty? I’m sure you can see what I mean!)

So, who is this pesky individual? None other than…  The one, the only… Ladies and Gentlemen, please put your hands together to welcome, with its exclusive one-symptom show… The world famous… The symptom everyone is talking about… The master, or mistress, of your destiny… the irritating discomfort of…

Da-da-dah…

Fibro Feet! (*tumultuous cheers and applause echo around the auditorium.)

Yes, just as I am settling down for the evening, the Fibro Feet start Going For Gold. Their knives have been honed to perfection and they have smashed the technique. In fact, Fibro Feet can do their job with their eyes shut. (I have a theory that they remove their eyes and send them on a scouting mission to find another unsuspecting victim as their aim is so accurate!) The feelings I experience include: like walking shards of glass, having someone stabbing them with a narrow blade, soreness, burning and painful itchiness. I haven’t noticed any particular routine regarding the sensations, it’s just the habit of coming to visit when I am sitting in the evenings. It doesn’t happen every evening but it happens more often than not and it does make appearances during the day, rather than being only nocturnal. It’s a very versatile opponent. It’s a shame it’s so effective.

However…

Some Enchanted Evening(s), it doesn’t take centre stage.

 

Posted in Changes, Coping, Day to day life, Feet, Fibro Warrior, Itchiness, Learning, Pain, Shards of glass, Stabbing pains, Symptoms | Leave a comment

Can You Hear Me, Mother?

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Morocco, February 2012

I think you’ll need to sit down before you start to read this post. It might even be a good idea to have a cup of hot, sweet tea to hand – I understand it is beneficial when someone has had a severe shock, so it could come in handy. You’ll definitely need to give yourself a bit of time to allow the contents of this post to permeate your brain. In fact, you might need to read the whole post several times as you will probably find it difficult to believe your eyes.

Now, go and make that cup of tea and find a chocolate biscuit, for good measure.

It’s OK. Don’t worry. I’ll wait for you.

Ah, good. You’re back. Are you comfortable in that chair? Would you like an extra cushion? No? How about a footstool? What was that? You want me to get on with it? Oh, OK. Brace yourself…

Here it comes…

Today’s post is all about…

*drum roll

Well, actually…

Today’s post is not about…

Fatigue.

That’s right! For once, I’m not going to drone on about fatigue!

See? I told you it would be a shock. Ha ha ha. Right, let’s get on to today’s subject which is tinnitus.

I have suffered with tinnitus for around 40 years. The severity has varied greatly during that time, as has the intensity of the sounds. What has also varied has been the sounds that the tinnitus produces. The sounds that go through my head include:

  • a continuous single note. When I say a single note, what I mean is that that one note continues steadily, without varying in tone or intensity – a monotone
  • ticking
  • whooshing
  • whirring
  • thrumming.

I remember one particularly difficult evening when I first noticed that the tinnitus could produce different notes in each ear. Oh my goodness! On that occasion I was hearing different notes in each ear, extremely loudly. It was incredibly intrusive and distressing. In recent years, the sensation of a different note in each ear has become commonplace.

So, why am I going on about tinnitus in a Fibro diary, you may ask? Well, I would also have wondered that when I first set out on my epic expedition to the densely populated planet of Fibromyalgia. I had no idea, when I first embarked on this adventure, that tinnitus can be one of the symptoms of Fibro but, boy, do I know it now!

I am very lucky that I have little pain from my Fibro but I suffer from many of the other symptoms and, one that is particularly troublesome is tinnitus. Over the course of my Fibro, my tinnitus has become far worse: it is intrusively present for, what appears to be, most of the time, the volume is very much louder and it is considerably more difficult to ignore. I often find its effects distressing. For years I have tried to avoid being within hearing distance of ticking clocks because the sound triggers a similar one in my head, which continues for a long time and is very unpleasant to experience. With the ticking sound it can be tricky to figure out whether the noise is real or ‘tinnitic’. (I don’t know if ‘tinnitic’ is a word – if it isn’t, I’ve just created it!) In any event, I find that situation distressing.

I am also finding that my hearing of ‘proper’ sounds is being affected by the loudness of the tinnitic sounds. The tinnitus is so loud and overwhelming that, sometimes, I struggle to hear things like the television. Listening to someone talking in the same room is easy, (unless they are talking rubbish! Ha ha ha) but technologically reproduced speech is harder to make out, occasionally.

I have to say that, although I very much appreciate being pretty much pain-free, some of the other Fibro symptoms that I experience I could well do without, and tinnitus is most definitely one of them. Are you listening, Fibro?

 

Posted in Coping, Day to day life, Fatigue, Symptoms, Tinnitus | Leave a comment