Hello? I’m Afraid I Can’t…

Photograph taken by me. Location unknown.

Those closest to me will be familiar with the phrase that I have used for the title of this post. Unfortunately I am having to say it to more people and on more occasions that I would like. And I don’t like it! Not one bit!

I very well know that I am not the most reliable of people, I am certainly notorious for not being on time – some may even say ‘late’! However, as my journey along the route known as Fibromyalgia continues and becomes more challenging, it becomes ever more difficult to stick to arrangements that have been made. Frustratingly, cancellation is an ever more frequent event. Just last night, FPR and I were in our coats, ready to leave his mother’s house, when I had to take off mine off, lie down on the sofa and try to sleep. That most unwelcome guest, Monsieur F.A. Tigué, suddenly popped up out of nowhere. So inconsiderate! Wouldn’t you think that, seeing FPR and me with our shoes and coats on and hearing us making our farewells, that Monsieur F.A. Tigué would keep his nose out and let us get on with it? Oh, no! Hmph! In he runs, bold as brass, wielding his slow-motion. Double hmph!

As if that wasn’t sufficiently annoying, this very afternoon, that irritating old codger decided to call in at our home. Grrr. I went upstairs to get ready. (I had arranged to go to meet a new friend before leaving to meet another friend for a film showing.) I didn’t notice anything in particular as I mounted the stairs but it was hiding behind the bathroom door and jumped on me as I entered. Grrr, hmph and stink bombs. Actually, it wasn’t Monsieur F.A. Tigué but his younger brother, Exhaustion-Related Back Pain. They are not a nice family, you know. If I were you, I would steer well clear of them. Each of them has a particularly nasty mean streak.

One of the Fibro symptoms that I get is back pain in the thoracic area of my spine. Sometimes it occurs at the same time as mirror-image chest pain. At other times, the onset of the back pain is a warning that exhaustion is about to knock me for six. There is a different feel to these two types of back pain, so I can normally recognise which is coming to visit. When it’s the Exhaustion-Related Back Pain I know that within a very few minutes I will be laid low by both back pain and exhaustion. Exhaustion rather than fatigue. And so it was, this afternoon.

It was so disappointing. Apart from being disappointed for myself, it meant I had to let down the two friends plus the person who was arranging the showing of the film. It’s at times like these that I get really fed up with the Fibro. I don’t want to disappoint people. It makes me feel pathetic that I am laid low in this way, but I know that it would be dangerous for me to attempt to drive when I am exhausted or fatigued. One positive thing that does come from times like these is that I am reminded of how very lucky I am in that I have friends who care and understand when I have to cancel: friends who know that any time we make arrangements, there is a considerable risk of me having to cancel, but they are still prepared to take the chance on me.

So, to all of my family and friends I would like to say thank you for still wanting to inlude me in excusions and arrangements and for not giving me a hard time when I have to cancel. I really do appreciate it. Please, let’s keep trying because it’s good fun when I don’t have to cancel.


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!



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”.


Nice And Easy Does It

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!

The Pleasure And The Pain

Sunset at Stepping Hill Hospital, 29 August 2017

Regular readers of this blog will know that I am very fortunate as pain is not a large part of my fibromyalgia. I hope new readers will accept that fibro isn’t always all about pain.

FPR’s mother has recently been sampling the delights of the NHS, as delivered by Stepping Hill Hospital, which is to the south of Stockport in Cheshire. We live on the northern fringes of Greater Manchester which means there are quite a few miles, and an awful lot of traffic between there and here! Even though I love driving my car and find it less tiring to drive than my previous one, sitting in traffic is no joy.

On Tuesday of this week, FPR and I set off with Lettie, m-i-l’s best-ever black labrador, on a hospital visit. Having made an early start, we had decided, for various reasons, that we would return home before the rush hour. There were a couple of tasks that I was hoping to complete for m-i-l that day which was why we set off when we did. Yes, well, the best laid plans and all that. I think it fair to say that our day did not go as planned – it felt rather like swimming in custard with an anchor tied to the ankles.

Due to a particular problem that cropped up, and a poor decision made by me, we ended up getting home much later than anticipated – but at least I had the pleasure of having completed everything I had hoped to! Oh my goodness, though, have I suffered for it!

On Wednesday, I had a quiet day. I knew I needed to be careful having had such a full-on day on Tuesday and I was feeling a bit tired. No, that’s not quite it. I felt a bit ‘squashy’. By that I mean that my brain was foggy, and my body felt like the physical equivalent of that, resulting in an overall feeling of squashy-ness. I gently plodded through the day, doing a bit of knitting, a bit of reading, spending a bit of time on my iPad – nothing too strenuous – and feeling very pleased with myself. Oops, that last bit was a mistake.

On Thursday I felt diabolical. I was so fatigued, I couldn’t even reach the dizzy heights of squashy-ness. I took things very easy. I did less knitting, no reading and less time on my iPad, but, even so, I felt worse as the day wore on. By the time 4.00pm came I knew I needed to go to bed. I usually avoid sleeping in bed during the day as I tend to recover my energy better after resting (with or without sleeping) in my recliner chair. However, sometimes that just isn’t enough, and that’s what was happening on Thursday: I wasn’t only feeling completely exhausted, I was feeling decidedly ill and nauseous – and it was getting worse with every step I took. Going up the stairs was quite interesting as I had to stop after every couple of steps.

I fell asleep almost as soon as my head hit the pillow. Zonk!

I awoke at around 6.00pm for three or four minutes and then zonked out again until about 7.00pm. I felt very much better than I had before I went to bed, but I still didn’t feel great. However, I did improve as the evening wore on until, by the time I was thinking of going to bed, I was wide awake and raring to go. I stayed up a bit longer, doing things that should prepare one for sleep, then retired to bed. I lay in bed, wide awake, for a couple of hours then gave up trying to sleep and got up again. I eventually fell asleep in my chair for an hour and a half or so and that was it until Friday night. Consequently, I wasn’t full of beans on Friday either. Unbelievably, the fatigue and exhaustion were still hanging over me yesterday!

I had the pleasure of doing everything I had planned to on Tuesday, but, my goodness, I have paid for it with the psychological pain of fatigue and exhaustion that I have suffered since.


The Wonders Of Modern Science?

Henry. A very special member of the family.

Oh, dear. Another gap in broadcasting. Oops.

In my last post, I said that, in this subsequent post, I might discuss what I thought may have contributed to the improvement in my Fibro. Amazingly, because I’m not good at following through on comments such as that one, that is what I am going to do!

Several months ago, my Baby Son (all 6′ 12″ of him!) suggested that using Golden Paste might improve my situation regarding the Fibromyalgia. He had been reading about Golden Paste and was giving it to his dogs. He said that many people use it for their own health problems. Following those discussions with him, I read a bit about it and, certainly, much of what I saw was positive. However, there was one problem, the thought of ingesting Golden Paste was distantly unappealing to me. I chatted to Baby Son again and he said that the paste was the best way to take it: the capsules do not work as effectively. The best compromise I could come up with for trying it, was for him to make some for me to try the next time I went to visit him. In the meantime, I noticed a few snippets about turmeric in the media.

Moving on from the discussion about the paste and before my next trip to see him, Baby Son found another miracle remedy. I tried that one during, and after, my next visit to him but it did absolutely nothing for me. A few days after that visit, I happened to overhear someone saying that she “couldn’t manage without [her] turmeric capsules”. Cue Bossymamma’s ears pricking up! This was said by someone whom I knew suffered greatly with arthritis.

At the time of the comment, I was still trialling the ‘new’ wonder cure so filed the information away for future reference.

The wonder cure wasn’t, so a return to the turmeric was scheduled.

I knew that I really didn’t want to try Golden Paste. Having heard confirmation of the efficacy of turmeric capsules, I decided that I would try those. When I was away for a few days with Little Sis, I mentioned that I would like to buy some turmeric capsules. We found a branch of Holland & Barrett, where I bought these **. I have been taking one capsule twice a day for about four weeks and they seem to be helping. The Fibro pain that I was experiencing in my arms has virtually gone and the arthritis pain in my shoulder has eased considerably. The fatigue also appears to have lessened. In fact, I have generally felt much better during the time that I have been taking turmeric, to the point where I had a period of 48 hours where I felt really well. Woohoo! I am still experiencing symptoms of Fibro, but, on the whole, those symptoms are far milder than immediately before I began taking the capsules.

Obviously, it is still early days and this is just my opinion, not a scientific trial, BUT I do feel as though taking turmeric is helping me. I shall continue to take the capsules and monitor the results.

The wonders of modern science? I think not. More a natural remedy that, if you can afford to (as it is quite expensive), is well worth trying.


** This is not an affiliate link. I have included the link simply to show the exact product that I have been trying.

The Lurker

Version 2
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.


Support Group, Anyone?

My lovely boy.
My lovely boy.

I think I have mentioned previously on here that I don’t read up on Fibromyalgia. When a new symptom appears, I make a quick search online to see if it is connected to Fibro. When I was first diagnosed I made the mistake of reading about it, but I very soon recognised the error of my ways. For many people, learning about their condition is an important and useful part of living with it. However, I find that I cope better if I don’t know. I’m the same when it comes to having any treatments. In fact, I am so bad that a consultant once operated on me, rather than carrying out the lesser [and more appropriate] treatment, because he knew I wouldn’t be able to cope with being awake and aware of what was going on! His was exactly the right course of action. I like to know the details after the event, not before.

Anyway, when I was diagnosed with Fibro, as well as reading about it, I joined a few support groups on Facebook. One year on, I am thinking of leaving those that I haven’t already ceased to be part of. Let me say at this point that, in general, I think support groups can be a marvellous thing but, for me, when it comes to Fibro, they are not really helping. Allow me to explain why.

You will have noticed that I don’t tend to have much pain associated with my Fibro. I have several other symptoms that cause difficulties for me, but pain is not one of them. However, pain is what most people equate with Fibro. Usually, if I tell someone I have Fibro, if they have any knowledge at all about the condition, they make the immediate assumption that I suffer a lot of pain. This seems to hold true within support groups, also. It feels to me, that many people with Fibro, will not believe that someone has Fibro if they don’t have the pain associated with it. It’s almost as though they are wishing the pain upon people! Not only that, but often, people who do have pain can come across as quite aggressive in the way that they speak. Some of the posts I have read in a couple of the Facebook groups are quite unpleasant. Now, I know that being in pain can cause anyone to be short-tempered, but it doesn’t excuse the nasty comments that I have seen in what is supposed to be a support group.

I have seen the phrase “Fibro Warrior” used to describe people living with Fibro. OK, be a warrior if you want to, but please remember that the ‘enemy’ is Fibromyalgia, not your fellow sufferers!

I know that I am not the only person who has noticed this phenomenon as within the last couple of weeks someone else mentioned it in a post that we were both responding to. Indeed, within just the past few days, I have seen a woman being verbally attacked by another member of a particular support group because she goes to work. The assumption of some people with Fibro seems to be that no-one with Fibro is able to work: they seem to forget that everyone’s experience of Fibromyalgia is different. That difference is not wrong, it’s just different.

As for the support groups, I haven’t yet made a definite decision about whether to stay or to leave. I shall probably just go with the status quo, for the time being.

Shall I Go Up… Or Down?

Dandelion fountain in the King's Cross area of Sydney
Dandelion fountain in the King’s Cross area of Sydney

In my last post I talked about the medication transition process, including how long the whole thing was taking. Since then, a new twist has appeared in that particular road. Would you believe that my Amitriptyline dose has increased? I know. Pretty unbelievable.

Even before my last post, I had noticed that my mood was dipping. Having suffered several major depressive episodes, I was lucky enough to be able to recognise what was happening. By that, I do not mean that if someone has been depressed before they are able to tell when it is happening to them again, but, rather, that I saw what was happening and somehow my mind managed to realise the risks involved – usually it doesn’t realise and so off I go down that slippery slope.

As I say, I recognised the risk. I had also noticed that various Fibromyalgia symptoms were beginning to crop up, albeit mildly. I tried to arrange a telephone consultation with Dr. Azeer but it wasn’t possible. I had wanted to discuss my thoughts that the low mood and the appearance of the Fibro symptoms were linked to the decrease in my Amitriptyline dose. As I couldn’t speak to Dr. Azeer and the weekend would occur before I managed to speak to him, I did something I wouldn’t normally do: I increased the Amitriptyline. My dose had dropped to 10mg the previous day but I decided that it would be a good idea to put it back up to 20mg. My reasoning was that it would be a while before I could be put onto another drug and for it to start being effective, so I might have more success with what I was already on. ***

I saw Dr. Azeer on Monday of this week to discuss how things were going and to tell him that I had upped the amount of Amitriptyline I was taking. We talked about the pros and cons of continuing with the Amitriptyline and of going back to taking Citalopram for the depression. For the time being, I shall continue on Amitriptyline, albeit on a lower than ideal dose, and we will review the situation in four or five weeks.

*** I do not advocate changing the dose of any medication one has been prescribed: always seek professional medical advice.

The Balancing Trick


I have Fibromyalgia and I am extremely lucky. I am extremely lucky because, although I do have Fibromyalgia, I do not suffer excruciating pain unlike so many others who have Fibromyalgia. However, I am not completely lucky: after all, I do have Fibromyalgia. In the main, I am afflicted by tiredness, exhaustion and fatigue; “Fibro fingers” (when I am unable to feel my fingers properly and it is difficult to use them effectively); wildly fluctuating body temperature; extremely cold hands and feet; dizziness and Fibro fog. I must admit that having cold hands and feet is something of a revelation as, in the past, my feet seldom felt cold. Now, however, it’s a very different story. The cold in my extremities makes having a shower difficult and uncomfortable: my hands and feet are burned by the water and yet, when the water hits my body it is barely more than tepid.

I admit that recently most of my symptoms have been barely present, apart from the dratted cold hands and feet. I had been thinking that the lack of symptoms was due to adrenalin coursing through my body because of the stresses that have been around me recently. However, I’m not so sure now.

When I returned from Australia at the end of last week I was pretty much symptom-free. Yes, I was suffering nausea and sickness plus the ever-present foul taste in my mouth, but I was sure all of that was due to side effects of the Amitriptyline. I decided to reduce the dose from the 60mg I had been taking whilst in Australia, to 50mg per day. I hoped that the small reduction would halt the side effects. I was unsure whether that would be the case as originally the nausea had begun when I was taking 70mg but had reappeared when I was on 60mg, but I didn’t want to prejudge.

I duly reduced the dose last Friday. Unfortunately the nausea and other side effects continued so, after five days, I dropped again, to 40mg. Still the side effects have remained.

I had a telephone consultation with Dr. Azeer yesterday during which I told him about the side effects I was having and that I was struggling to eat because of them. I also told him that I was now taking 40mg. We agreed that I need to come off the Amitriptyline entirely and went on to discuss the remaining treatment options. He again mentioned that Pregbalin was really the only drug choice we had. At that point, I asked him whether its efficacy mainly worked for pain or tiredness. He replied that it works mainly on pain. Hmm. So this was where the balancing trick came into play. I had a choice to make:

1. Take Amitriptyline and feel almost constantly nauseous, suffer frequent vomiting and not be able to eat a reasonable diet;
2. Take Pregbalin and have my body become used to it, even before I have severe pain; or,
3. Don’t take any drugs for the Fibromyalgia.

Dr. Azeer and I had a good discussion during which I expressed the fear that if I start taking Pregbalin now, when I have little pain, it may not be effective if or when I suffer the levels of pain that many people with Fibromyalgia have. We agreed that I would not take any drug for the Fibromyalgia, for the time being, and that the decision can be reviewed whenever I feel the need.

Having heard what other Fibro sufferers have to cope with because of their doctors, I appreciate just how fortunate I am to have such an approachable, understanding and empowering GP as Dr. Azeer. I may have drawn the short straw in some things, but I am so lucky in who my GP is.