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!

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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

Transitioning

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Sydney, July 2013

FPR is very interested in words and is engendering a similar interest in my grandsons. He and I have discussions about new words and the way the language is changing, not necessarily for the better, in our respective opinions. I mention that because of the word I have used as the title of this post: Transitioning. I used the word deliberately because of one of the ways in which the word is used. When I talk about “transitioning”, I am not talking about transgender issues but, rather, about the transition I am undergoing at the moment because of the Fibromyalgia.

My Fibro symptoms have altered recently: some have become more pronounced, others have been making their debuts on my personal Fibro stage. These developments in the symptoms create a huge learning curve (sorry, FPR!) around how to live my life. I must admit to feeling fed up with some of the restrictions that my health is trying to force upon me. I don’t mind having to carry out tasks in small chunks – I am used to that and have found it to be a useful coping mechanism – but I really don’t like being penalised for having the temerity to go out for a few hours’ enjoyment and entertainment. That is just not on!

Over the past few weeks, I have had to pull out from several planned trips with friends because of the effects of fatigue. I am unbelievably lucky that my friends understand and tolerate these cancellations. I don’t like having to cancel but I am trying to be sensible and take care of myself. Actually, going out is one of the few areas of my life in which I am an optimist. I always assume that I shall be fine to go when the plans are made and, if fatigue is making itself felt in the period immediately prior to the trip, I believe that it will (miraculously) lift so that I’ll be OK to go. Of course, too often the fatigue doesn’t lift so then I put on my sensible head and don’t go. When I do go, I know that later in the day will most likely be payback time but that’s OK, I don’t think I complain much about that. However, the fatigue is altering. I sincerely hope that this change is a Fibro flare, rather than anything longer-lasting. After my last few excursions I have found that the after-effects have been lasting longer than a few hours. It now seems to be taking a good two days for them to wear off. Hmph. This is not acceptable. For goodness’ sake, Fibro, sort yourself out and stop knocking me out like this. Bossymamma is not happy. In fact, I am so not happy that I am likely to stamp my feet in annoyance (and FPR knows what I am like when I reach that stage, having witnessed it in Singapore!).

For the time being, I shall try not to overdo things and hope that friends are still happy to arrange trips out in the hope that, occasionally, they come to fruition, but I really do hope that  the fatigue slips back into our old routine.

As my friend, Anne, says, “Fibromyalgia: the gift that keeps on giving”.

 

Posted in 'snot fair, Changes, Choices, Coping, Day to day life, Decisions, Fatigue, Fibro Warrior, Symptoms | Tagged , , , , | Leave a comment

Trust

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My Sister

This photo is of my sister. She was a lovely person – kind, generous, forgiving, intelligent, placid – but she had demons. Oh, and she used to drive me mad! We were very different characters: I am every bit as volatile as she was placid, we had opposite character traits, different hobbies and interests. Despite all of that, and much more, we had a very deep, strong and special loving bond. It was a faithful bond, one we could trust absolutely. Trust of that kind is very important: it is deep within who we are, almost as deep as the trust we have of ourselves.

Anyone with a reasonable level of self-awareness, will pretty much know and recognise their own strengths and weaknesses. We know the sorts of things we are good at, those we struggle with, the things that we will never be able to master (I wonder if one could use the word ‘mistress’ in these feminist days?). We know who we are and what abilities we have. They are things we can trust about ourselves. But…

What happens when we can no longer trust those very same things? How does it affect how we see ourselves? What happens to our self-esteem? Our confidence? Our understanding of ourselves and the world around us?

I wrote on here recently about how Fibro Fog was making itself felt. Well, it has continued to hang around being a danged nuisance. The reason I had mentioned Fog was because of an incident involving the day of a hospital appointment: I was convinced the appointment clerk had told me it was on Wednesday (as opposed to the usual Monday), but, in reality, it was on the Monday.

Another significant incident has taken place which has really shaken my self-confidence. I feel I can no longer trust myself, my thoughts, my memories. It is very scary. I cannot be sure that what I remember, even from just a week or two ago, is actually a memory. FPR had asked me to order something online for him. During the process I offered him a couple of options and he made his choice, I placed the order and paid for the goods, then I emailed a copy of the order confirmation to him. Except that I didn’t email a copy of the confirmation to him, because I hadn’t placed the order!

Yes, I know that lots of people forget things like that but when one has Fibromyalgia, especially Fibro Fog, and something that seems so real is actually a figment of one’s imagination, it can be very, very scary indeed. Throughout my adult life I have been efficient and logical in dealing with administrative-type tasks, both at work and in the home. I have devised systems and spreadsheets; organised diaries and appointments; filled in enough forms to keep a whole army of civil servants busy; researched issues; interpreted information; completed comprehensive case notes so that any colleague who picked up the file would have all of the necessary information to hand, in a sensible form and myriad other tasks. But that time has passed.

I can no longer glide through tasks like those. Each telephone call, each blank form is like a mental mountain to climb. It feels as though an important part of my brain is playing tricks on me, making me think and act illogically. It makes me feel pathetic. It makes me feel as though a chunk of me is missing. It makes me feel less than I was. It makes me feel stupid. And it makes me feel anxious.

How can I trust what my brain is telling me? It is, in effect, telling me lies, although I can’t tell which are lies and which are memories. How can I trust my brain to keep me safe?

I am feeling out of my own control and, instead, under the control of Fibro. If you were in my shoes, would you trust Fibro…?

 

 

 

Posted in Day to day life | 1 Comment

Nice And Easy Does It

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Singapore, May 2015

For the past two or three weeks (actually, it’s probably longer than that), I have been living quietly. By ‘quietly’ I mean that I haven’t been rushing about: instead I have been doing things when I feel like doing them, resting when I feel like resting, getting up and going to bed when I feel like it – you know the sort of thing. Some of the time it has been through choice, the rest of the time it hasn’t. I have been trying to give my body a chance to recharge its batteries. That may sound odd coming from someone who has problems with fatigue caused by Fibromyalgia, but it has felt as though I needed to have a bit of ‘slow’ time.

It has been an odd state of affairs, this slow time. For a start, I dislike being disabled by the fatigue. It is dreadfully frustrating not to be able to do things that I have been looking forward to, but, after a while, it just felt right to slow things down a bit. I had recently returned, after a long break, to a group that meets on Thursday evenings and I was thoroughly enjoying it. However, I was finding that for probably half of the time, I was too weary to be able to attend. Instead of railing against fate, I decided that my default position would be that I was unable to go to the meetings. That way, if I felt bright enough to go, it would be a big, fat bonus, rather than suffering the disappointment of missing it when the fatigue was playing up. I must say, making that particular decision has made it easier to cope with not being able to attend. At this point, I was going to say that perhaps I should adopt this strategy for everything, but I think that would be a bad thing. It would be a terribly pessimistic standpoint so I don’t think it would work. For the moment, it’s enough to use it just for the Thursday evening group.

I am finding that I am having to keep adjusting the way I live with the Fibro. I suppose much of that is because the Fibro has changed and has been affecting me differently over the last several months. For the time being, I don’t mind the ebb and flow – which is a good thing – but it remains to be seenhow long that remains true. For now, I shall continue on my slow journey, with occasional bursts of speed – not only in my lovely car!

Posted in Changes, Choices, Coping, Day to day life, Decisions, Fatigue, Fibro Warrior, Thoughts | Leave a comment

It Makes Me Sick!

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Some very special people

FPR has been in a sticky situation recently: he has been stuck on the Macbook, which has meant that I couldn’t get near it to type a post on here. I know I could have typed it on my iPad, but I prefer using the Macbook. Silly, isn’t it? Wotevva! That is why it’s been a while since my last post. (As I typed that last sentence I could hear The Last Post playing in my head!!!)

OK. Let’s get on to the business in hand…

Back in early September, I mentioned in this post having felt nauseous. This is something that happens occasionally. I don’t really remember it being an issue since I tried taking Amitriptyline back in 2015. The Amitriptyline caused me to suffer dreadful nausea and vomiting. Since that time, I have suffered bouts of nausea occasionally. However, those occasions are becoming more frequent and, consequently, more troublesome. I hadn’t attributed them to any particular cause but rather just viewed them as unpleasant things that happened once in a while. Recently, though, I have been wondering if there is an underlying cause for the nausea so I decided to check whether it is a recognised symptom of Fibromyalgia. No prizes for guessing what I discovered.

I can’t remember, now, which website I read about nausea being a symptom of Fibro but, because I wanted to add a link about nausea in this post, I did a quick search online and this site came up. The piece I read last week didn’t mention nausea as being a common symptom of Fibro so it was something of a revelation to read it in this post. This is probably a good time to remind you that I tend not to read about Fibromyalgia. I did so when I was first diagnosed but found the information so depressing that I decided not to read any more, unless I was looking for something specific. I was depressed enough, without adding lots of information about symptoms I didn’t have, but  which which might develop in the future.

The article I read the other day mentioned that sufferers of fibro-related nausea should consult their doctor about it. I don’t want to bother Dr. Azeer at the moment: instead, I shall see how things go. If the nausea keeps putting in an appearance and becomes a particular nuisance I may need to review that decision but, for the moment, I shall leave him in peace.

Posted in Coping, Day to day life, Fibro Warrior, Nausea, Side effects, Symptoms | Leave a comment