It’s A Little Bit Me…

Handmade Mosaic Tile Borders. Morocco, 2012

Time for a touch of nostalgia, everyone. Today’s title is borrowed from this song by The Monkees. They were huge when I was young and impressionable. I used to enjoy hearing their songs and always thought Mike Nesmith was quite dishy. Oh gosh, that makes me feel old! Anyway, as I say, I borrowed part of the song title for this post.

It has been very quiet here, at Bossy Towers. Like much of the UK this week, we have had snow and low temperatures which have encouraged us to stay wrapped up warm and snug indoors – as if we needed any encouragement! The situation has suited me well during the past few days as energy levels have been low. Anything that I have managed to do has been for less than half an hour and, often only a few minutes. It’s been “do a little of this” then “a little of that”. In fact, for much of the time, I haven’t really been doing much at all. Life has certainly changed from when FPR would see me knitting, or sewing, and comment that I always seem to be doing something, always busy. I am hoping those days will return because, at the moment, I can’t even knit for more than a few rows before my oomph is oomphed out. Oh well, at least I can still knit… unless it’s something for me! That’s when the Fibro Fog kicks in, Big Style, but we’ll overlook that for the moment.

Just thought I would mention that Tinnitus is being a real pain at the moment. For the first time that I can remember, the tinnitus in my right ear actually interfered with my ability to hear. Usually I hear everything above the ever-present noise, but once or twice in the last couple of days, I have had real trouble working out if there was any external sound. Pah! Just get lost, tinnitus: I really am not interested in what you are trying to do.

It’s only a very short post, this week. My feet are getting cold and I have just spotted two microjoules of energy which I am going to grab and make full use of!



Can You Hear Me, Mother?

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…


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?


Taking Care Of Oneself, Bossy-Style


Last time I posted on here I mentioned that I was coming off the Amitriptyline and not replacing it with any other medication for the Fibromyalgia. Having gradually reduced the Amitriptyline, I took my final dose just over a week ago. So far, things are going well. OK, I know it’s only been a week but it’s still worth recording how the Fibro has been behaving.

I have been having some of what I call the “side” or “small” symptoms, but, by and large, they are easily manageable. The nausea hasn’t cleared up completely which makes me wonder if it had a different root cause, all along. Alternatively, the cause may have changed during the time I was coming off the Amitriptyline: time will tell. I have had some dizziness, including one very unpleasant bout, but it hasn’t caused any real problems in my day-to-day life. The tinnitus is not as instrusive as it was whilst I was on the Amitriptyline. My internal thermometer is playing silly wotsits, but it’s not a problem – in fact, it’s quite novel to have cold feet! As for the tiredness, it has increased slightly but is not a big issue. I have been keeping strange hours lately as I’ve had to make lots of telephone calls to Australia in the middle of the night! Generally, if I’ve been on the phone a lot during the night, I have a bit of a lie-in in the morning, which seems to be keeping the worst of the tiredness at bay.

What I have noticed, lately, is that I am not doing much. Usually, whenever I sit in my armchair, I do some knitting, crocheting or sewing. However, over the past two or three weeks or so, I have spent an unusual amount of time just sitting doing nothing, or surfing the net. I seem to be happy to live life more slowly, at the moment – and that’s perfectly fine. After several months of extreme stress, now that half of that stress has lifted, it feels ‘safe’ to allow myself to slow down. In fact, I have slowed down to such an extent that I am actually relaxing! I can definitely feel a very welcome difference in the way that I am. Not only that, but I have even been told how well I look, by several people!

Perhaps my ‘baby’ boy was right about the Fibro disappearing, now that the cause has gone?!?

You Might Say It’s Been Quiet But…

April Sunrise

There doesn’t seem to have been much happening here lately, does there? Well, actually, that’s completely wrong as a huge amount has been happening. So much, in fact, that Fibromyalgia hasn’t really had much of a look in. That doesn’t mean that it hasn’t been making itself felt – it has – but, rather, that I haven’t really had much of a chance to think about it, except when it decides to bare its teeth. Even then, I have tended to just sort of acknowledge that it is still around and then dismiss it to the back of my mind.

The symptoms I have been having are the ones that I tend to think of as the “side” symptoms, or “small” symptoms. By that I mean that they are inconvenient, uncomfortable and unpleasant, but they don’t exactly stop me from doing things. However, again, I think that adrenalin has had an enormous part to play in this. Some of the stresses of the past three months increased considerably recently which meant that I had to focus on certain things.

Luckily the dizziness and nausea didn’t prevent me from doing everything that needed to be done. They were certainly a nuisance and felt rather nasty – particularly the nausea – but, in order to get everything done, I would do some things, rest, do some more, rest again and so on. It was handy that the nausea tended to hit me during the evenings or nights, so it didn’t interfere too much with what I was doing. Phew!

Last week, the adrenalin wasn’t coursing around my body quite so vigorously. Consequently I felt drained. It wasn’t fatigue in the way that I have had it previously with the Fibro. Rather, it was an empty, lacklustre sort of feeling. I didn’t try to fight it as I knew that I needed to take care of myself. I have been running “on empty” for quite some time so was in dire need of some “down time”, so I simply took things easy last week.

Because of the reappearance of the nausea, I decided to reduce my dose of Amitriptyline last week. By the middle of last week I felt brighter so I increased the dose back to its previous level… Bad move. The nausea returned almost as soon as I took that higher dose! Accordingky, I have made an appointment to see my GP to discuss where we go from here. I really don’t want to continue taking the Amitriptyline: as well as causing nausea, it also puts me off eating savoury foods. In addition, I think it may be to blame for the increase in intensity of my tinnitus, which has been well and truly making itself felt. I don’t remember ever having suffered tinnitus at these levels previously.

Anyway, I am due to see Dr. Azeer early (too early!) on Wednesday morning so that we may discuss my medication. Keep your eyes peeled for an update from me, after that appointment.

Yesterday, Today, Tomorrow?

Hyde Park, Sydney
Hyde Park, Sydney

It’s a while since I posted anything here, isn’t it? The reason for radio silence is that, with regard to the Fibromyalgia, things have been uneventful. I have had tiredness and fatigue, but not to any extreme. I have also had some mild pain, which went as quickly as it appeared, and other bits and pieces of symptoms which are not worth mentioning. However, the tinnitus continues to intrude and, at times, can feel unbearable.

My main difficulties recently have been stress-related: anxiety and depression (A & D). Although I am aware that Fibro can cause A & D, I have suffered from both for very much longer than I have had Fibro. Yes, I know lots of people have Fibro for a very long time before it is diagnosed, but Dr. Azeer recognised mine for what it was, or is, within a few weeks of it appearing. Consequently I view A & D separately from the Fibro. Anyway, the A & D have been playing up because my stress levels have been high. I am hoping that, now I’m feeling less stressed, the A & D will ease. In the meantime, Dr. Azeer has suggested I take regular doses of my emergency medicine to help me through. Whilst I haven’t been doing so, I have been taking it more than I was before I saw him this week.

During my appointment with Dr. Azeer, we discussed how well the amitriptyline seems to be controlling my symptoms. We also discussed the well-known effects of stress on Fibro i.e. Fibro Flares. We agreed that, with everything that’s going on, I could be susceptible. However, I told him that I do not intend to spend my life worrying about what Fibro might do to me: I will deal with things as and when they arise. I refuse to use all my energy simply counting spoons.

(By the way, he had never heard of the Spoon Theory.)

New Things Are Happening

Tree at Aphrodisias

The major stresses in my life recently are continuing. The levels of stress vary but are consistently high and the impact on my health and wellbeing becomes more apparent.

My mood has lowered during these last three weeks and I am having to monitor myself carefully to ensure that I don’t slide down into the dark pit. The situation vis-a-vis anxiety is slightly different, as there have been fluctuations in the level. Generally speaking, I have been suffering more anxiety lately and have had to resort to taking some of my emergency medication on occasion. I really do keep that medicine as a last resort so, having had to take some, is disappointing. Disappointing but not surprising.

As for the Fibromyalgia, I am still of the opinion that I am very lucky. Considering how difficult life has been for some time, I am amazed that my symptoms have not been worse than they have. I am definitely getting more tired, more often and the fatigue is also more apparent. In case you are wondering about why I use the two words “tiredness” and “fatigue” I will explain. I use “tiredness” to describe the times when I feel sleepy and when I feel the sort of tired anyone might feel after physical exertion. “Fatigue”, on the other hand, describes when my energy suddenly disappears and I feel as though I am trying to walk through a wall.

I have previously mentioned that the tinnitus has increased to a level that makes it more difficult to ignore. I am mainly hearing a level tone in my ears, albeit rather loud, but at least it is only a single tone and the ticking and other noises appear to have abated.

One symptom that has decided to make an appearance is pain. It has been generalised pain, all over my body, and low level. I feel stiff and it seems as though I ache everywhere. Not only that, but at times when I am moving around, the best I can manage is an undignified shuffle. However, I am very thankful that the pain has been mild and I have not needed to resort to painkillers – plenty of time for those in the future.


A Different Perspective

A visual metaphor
A visual metaphor

Today I am moving away from the tedious subject of fatigue to look at another symptom of Fibromyalgia that I am having. Tinnitus.

I have had tinnitus for more than 30 years. It is more troubling at some times than at others, but is usually well within my ability to cope with it. Things have changed now. The tinnitus has become markedly more intrusive than it has been previously. Although, at times, it has been decidedly unpleasant, it has never been so noticeable and uncomfortable for as long as it has been recently.

The noise in my ears has been much louder and more insistent than I have known it be before. Whereas, usually, I would notice the tinnitus just occasionally, now I hear it almost all the time. One good thing is that it is a single tone that I hear. When it has played up in the past I would hear different sounds in each ear, and sometimes more than one sound in each ear. That scenario is very difficult to cope with. However, the multiple tones have previously been for short periods: short bursts just a few times a day for a week or so. My current discomfort has been for long periods, almost continuous.

This morning a metaphorical bell rang in my brain, linking tinnitus and Fibromyalgia. A quick search of the two conditions soon brought up various articles which showed that it is believed that there is a link. I’m going to try not to moan about the tinnitus as I am very well aware of how lucky I am not to suffer anything more than mild pain with the Fibro. I do not forget to be thankful about that. Long may it continue.

I am trying to keep positive about the change in my tinnitus, rather than allowing it to get me down. After all, the prospect of having the noise in my ears continuously and indefinitely, is not something I am keen to dwell upon. For the time being, increased tinnitus is just one more of the “odds and ends” of Fibro symptoms that I have.

*Information and support relating to tinnitus can be found at