I Must Go Shopping!

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.



I Can’t Think Of A Title!

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!


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 Radical Option


Do you ever go “commando”? Or ride bareback? If you do you’ll be able to identify with what I’m about to do…

I went to see Dr. Azeer this morning – oh, and that is a story in itself! Anyway, to get back to the point, I saw him to discuss the side effects of the Amitriptyline that I have been experiencing i.e. nausea. As usual, he asked me a few questions about what has been happening, in order to get a feel for how life is treating me, before moving on to health matters. At that point I explained that I had reduced my dose of Amitriptyline due to the nausea and that, when I put the dose back up, the nausea had returned. We reviewed the medications that I had tried and what the next step could be. He mentioned the possibility of trying Pregabalin. However, I wasn’t keen on taking it. I don’t really know why I was reluctant, I certainly hadn’t had any feelings about it one way or the other prior to going into see him. This was where things got radical! I suggested not taking Pregabalin but, rather, going without any medication for the Fibromyalgia, for a while.

I explained that the Fibro had been behaving quite well recently. I also told him about what my younger son had said concerning the possibility of the Fibro getting better now that the “cause” of it had gone. We agreed that it would be worth me having a period without taking any medication specifically for the Fibro. As I said to him, if the Fibro starts causing problems I can always contact him to ask for some medication.

So, that’s it: I’m going ‘commando’! I’m living with the Fibro without my (drugs) clothes on. Wish me luck!

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 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!

Expect The Unexpected

Camels with burdens
Camels with burdens

In my last post I mentioned the nausea I had been having. Unfortunately the nausea continued and worsened. It began adversely affecting my life. In fact, on Saturday, I felt decidedly unwell and had to find refuge in sleep.

I was awoken from my sleep by a surprise visitor but was still feeling very ill. Luckily the nausea evaporated after a while so I was able to enjoy having my son and his dogs staying overnight. However, I have had repeated bouts of nausea: not a nice experience.

This morning I was having a telephone consultation with my GP and told him about the nausea. I mentioned that I had been wondering if it might be a side effect of the Amitriptyline. He suggested that I reduce my dose from the 80mg that I have reached, to 50mg: again the change of dosage must be gradual. He said that I should see how well (or not) the Amitriptyline deals with the Fibro, giving it about six weeks on the 50mg a day, and we would review the situation. If a change of drug was needed we would look at Pregabalin.** So, I now have a slightly longer test period for Amitriptyline, which is such a nuisance. I need to visit my sister in Australia as soon as possible but I’m not sure whether I dare leave the country for three or four weeks during this time. It is very frustrating. At times it feels as though Fibromyalgia is ruling my life.

** I expect some people would take issue with my use of the word “we” when talking about my treatment. However, I have used the word deliberately as, for me, when decisions are made relating to my treatment they are made jointly Dr. Azeer and me.

Starting and Stopping

Sydney July 2013


At the moment I am going through the transition period for changing the medication I take for my Fibromyalgia. It had been quite a journey reaching the dosage of Gabapentin that my GP, Dr. Azeer, had prescribed and, once I got there, the nine capsules a day weren’t doing a good enough job to justify the upheaval involved in taking them every day. Consequently, Dr. Azeer and I discussed other treatment options and agreed that I would cease taking Gabapentin and change to Amitriptyline.

It has been a complicated process changing from Gabapentin to Amitriptyline. I have had to reduce the dose by one capsule every three days. Now that I am almost down to nil Gabapentin, I have had to cut by half, the amount of antidepressants that I take, then stop taking it completely. After three days without the antidepressant, I am set to start taking Amitriptyline. At that point, I can stop taking the medication that protects me from the interaction of my current antidepressant with the aspirin that I take. Then, when I start on the Amitriptyline, I have to increase the dose every four or five days until I reach the prescribed dose. I don’t know why, but I didn’t feel confident remembering all of the timings and dosages! So, I jotted down the information whilst I was still with Dr. Azeer. He was impressed that I had noted it all down. He said that often patients haven’t written down what he has told them and, consequently, they become confused about what they should take and when. It’s not really surprising, is it?