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.


Nice to be back…

The Italian Chapel on Mainland in the Orkney Islands

Hello, I’m back.

It’s been a while, hasn’t it? A long while.

In my last post I mentioned the theory that perhaps my Fibromyalgia would be gone with, what some perceived, as the cause gone. My younger son, the eternal optimist, had been the first person to actually say the words, but he was only saying what several important people in my life were thinking. I freely admit that I was one of those people, which is surprising given that I tend to be a pessimist! However, life has taught me that you have to recognise and appreciate the good times in order to help you through the bad.

For several months, the Fibro hardly made an appearance and I certainly recognised my good fortune. That was the main reason for the hiatus on here – there just wasn’t anything to write about! Other areas of my life were not so good, which was another reason that I didn’t post. Recently, life has found a new pattern which, disappointingly, includes a resurgence of the Fibro.

Since around Christmas 2016, I have been noticing bits of pain appearing in some parts of my body – a bit unpleasant but easily tolerable. Slowly the pain increased in intensity, but remained tolerable. I discussed these changes with my GP, Dr. Azeer, earlier this year and we agreed that it was better for me to continue without any medication for the time being. After all, that decision can be changed if circumstances alter, which they have done this week. Ladies and Gentlemen, Elvis may have left the building but Fibro pain has, most definitely, entered it!

Things began to change after a recent particularly busy period. Initially I thought it was simply a flare-up because I had overdone things: I was feeling more pain in a couple of spots and was having more frequent bouts of dizziness and of fatigue. The pain was steadily increasing and, although still tolerable, it was becoming more persistent. In addition, my sleep pattern had deteriorated. I was having to take frequent rests whenever I undertook any tasks: frustrating but OK. However, last week something new happened…

I had almost finished some sewing that I was doing and I was feeling tired, but in a way I didn’t remember having felt before. I decided not to stop as I had so nearly completed the task. With hindsight, I cannot decide whether that was the right or wrong thing to do. Once I had done what I wanted, I went to rest in my recliner chair and, oh, did I need to rest! I was assailed by more pain than I had experienced previously. Not only that, but the pain hurt more than it had before and I felt very unwell because of the combined effects of pain and fatigue. I am finding it impossible to adequately describe how I was feeling as it was far removed from my experiences with Fibro thus far.

As the evening wore on, I felt less unwell but was still in a lot of pain. It made being in bed, and sleeping, very difficult. I couldn’t find a reasonable position to lie in. My left arm and shoulder are heavily affected by pain and it was even worse that night, hence my difficulties in deciding how to lie. The severe pain continued well into the following afternoon, easing slightly as night-time approached. My partner and I were out for the day and, when I drove home in the early evening, I found it unusually painful to drive his car. That is a slightly concerning element but it does reinforce how pleased I am with the car I bought last year, as I find it easier to handle and less tiring to drive.

The days since that episode have become steadily better and, in fact, I have just had two, yes two, pretty good days on the trot. I think those closest to me are pleased as I tend to make noises when I am in pain. I try not to groan, but I am often unsuccessful…

**    Apologies to all Orcadians. My partner has just told me that the Italian Chapel is not on Mainland but on another of the Orkneys. Apparently we crossed water en route from Kirkwall! My excuse for not noticing is that I wasn’t really with it. It was just two or three hours after I had been told of my sister’s death.

The Up-Side Of Fibromyalgia! (I’ll bet you didn’t know there was one, did you?)


I’m writing this post at 09:50 BST or 16:50 Singapore time. I am struggling to keep up with what the time is or should be and, as for times to take medication… who knows? I am totally confused. I keep trying to figure out what day it is and, once I know that, I can start to think about what time to take my tablets.

I went to see my lovely GP, Dr. Azeer, on Tuesday. We discussed my imminent trip to Australia and agreed that we would pause the changing of dosages of the Amitriptyline for the time being. It can be resumed upon my return to the UK. Although Dr. Azeer had previously advised me not to travel to Australia during the drug changeover period, he immediately rescinded that and agreed that I must go. That’s one if the things that I really like about him: he takes into account what’s happening in his patient’s life when proposing how to deal with a condition. He agreed with me when I stated that I have the rest of my life to recover from the rigours (both emotional and physical) of this trip, and that could be a l-o-n-g time, whereas my sister doesn’t have that luxury.

For the time being, adrenalin still seems to be keeping me going. (I don’t want to imagine what I might be like when adrenalin is taken out of the mix!) however, a new symptom has appeared: I have been having pain in the back of my hands. Luckily it is intermittent and only mild, but it’s a new symptom, nonetheless.

There you go, there is an up-side to Fibromyalgia: you learn something new about it (almost) every day!

Learning About The Fibro Payoff

Yesterday was a good day. I went to meet some friends for coffee and a chat whilst knitting in the morning and then went Christmas shopping.

I had planned which shops I wanted to go to and restricted myself to those three. There was another nearby but I knew I was getting tired so I decided against pushing myself too much. Instead I returned home and had a rest.

After a short rest, I worked for a while on a present that I was making for Peter’s sister-in-law. Another break whilst I cooked and ate dinner then watched TV, then I was bright enough to complete the bag.

I was pleased to finish the present without feeling stressed about it as, ideally, it needed to be ready for this morning. Well, I managed it and didn’t feel too tired, or should I say I didn’t realise how tired I was? I fell asleep in the chair again. I must try not to do that: it is becoming too easy to not recognise how tired or sleepy I am. I didn’t waken until Peter came downstairs, whereupon I went to bed!

Then came today…

After breakfast I pottered about doing bits and pieces then sat down with a cup of coffee… and fell asleep for two and a half hours. Thinking about it, I should perhaps have realised that I was tired when I was pottering as I didn’t really feel much like doing anything.

Note to self: if you feel like just pottering, think about tiredness – do you need to rest?

And so we have the Fibro Payoff – busy today: tired tomorrow. At this stage, I don’t know if that will always be the way of things, but it certainly is at the moment.

One good thing, though: when I feel as bright as a button, I truly appreciate and enjoy the moment! That’s a silver lining of Fibromyalgia and we have to take whatever silver linings we can.