Ghouls, Ghosties and Other Scary Things

Morocco, 2012

Do you believe in ghosts? I don’t know whether I do, or not. I’ve never seen a ghost but that doesn’t mean they don’t exist, it simply means that none have appeared to me. I do believe that some people have abilities that we don’t exactly understand, although there are lots of charlatans who take advantage of people.


I can hear all the question marks knocking about in your head as you read this, wondering what on earth I am rabbiting on about. Allow me to enlighten you.

I have noticed what I think is a slightly weird phenomena. (OK, OK, FPR, I know that’s wrong, I typed it deliberately just to wind you up!) No, what I noticed was a weird phenomenon.

I seem to have developed an internal Early Warning System which lets me know when Fatigue is rushing in my direction. When I have been doing something for a while – it could be for any length of time from five minutes upwards – a knowledge comes upon me that I should stop. I don’t feel tired or fatigued. In fact, I often feel that I want to continue what I am doing. However, there is a voice in my head that tells me I should stop. I then find that within, literally, a minute or two, Fatigue has arrived for a visit. It really is most peculiar as the knowing can come at any time – it doesn’t appear after a certain period of time. As I said above, it can be five minutes after I start, or it could be 45 minutes but, regardless of how long it takes to happen, the Fatigue follows hot on its heels.

You may think that it is a self-fulfilling prophecy: that I think I might get tired and so I do get tired. However, it doesn’t seem to be. It matters not whether I continue what I am doing or take a break, Madame La Fatigué arrives with her suitcase looking set to outstay her welcome – just like the archetypal mother-in-law.

Generally, when this spooky starts, I will stop what I am doing. I have found that when Madame L F arrives in this manner, she packs a real punch. She sure does like to make her presence felt! These are the times when my every muscle screams to be allowed to fall in a heap wherever I am standing. The times when I don’t have the energy to knit, or surf the net; when I’m too exhausted to cope with even the most mindless programme on television; the times when I simply sit and do nothing. The strange thing is that this utter exhaustion isn’t any indication of how long I will feel unwell: I may feel much brighter after 10 or 15 minutes, or I might feel lousy for three or four hours. There is just no knowing.




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”.


Was It Ordinary, Or Extraordinary?

Morocco, 2012

Something ordinary happened this week. Something extraordinary happened this week, at the same time.

No, I’m not talking about the hottest June day in the United Kingdom since records began (when was that, by the way? Does anybody know, or even care?). My description of the weather we’ve had this week would need to be subjected to heavy editing, so what’s the point of me wasting the effort of explaining?

Back to my original statement and I think I need to set the scene for you. The subject bears a massive build-up. The news is of such import that several national newspapers, including all of the broadsheets, naturally, have halted their respective print-runs to quote me for their lead story. OK, I may have indulged in a tiny bit of exaggeration there, but I’m sure you’ll agree that if I were telling the editors my story, rather than you, my lovely followers, they would be sure to recognise  how important a statement I am sharing here.

FPR and I have been away for a few days this week – hence the silence in these parts. Unfortunately, the weather decided to spoil our holiday. It was stinking hot and sunny,  for the entire time we were away instead of being cool and comfortable. The result was that I saw hardly anything and did almost nothing. I have disliked hot weather all my life: it actually makes me feel physically ill. However, despite the horrid heat with the added “bonus” of Fibro, I didn’t feel any worse than I do in any heatwave! In fact, once the thermometer began to look more like its usual self, I felt brilliant or, to be more accurate, I felt absolutely bl##dy brilliant! Better than I have felt for months, certainly since Christmas!

This week I have been mainly feeling like ME! Not Fibro me, but proper ME!

I didn’t realise how well I was feeling immediately – a bit like not noticing when a man has shaved off his beard – but, once I did, it was amazing. I have been able to do things over the past couple of days without having to work out when I’m likely to have sufficient energy. I have dashed about from one place to another, filling my day with various tasks and activities and even played football (well, more like foot-balloon) with my grandsons! I’ve been having a great time!

I admit that I was tired last night, but it wasn’t the Fibro tiredness and exhaustion, it was just plain old tiredness. In fact, it felt so ordinary that I almost felt happy that I was tired!

In my next post I shall probably talk about what I think might be the reason for how I’ve been feeling. Don’t miss it.


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?!?

A Very Strange Sensation

Looking forward to my "special place"
Looking forward to my “special place”

There was something odd about Sunday, but I couldn’t quite put my finger on it. A strange sensation that I knew should be familiar, although I couldn’t quite figure out what it was. By Monday morning, however, I had realised what was different… I wasn’t feeling completely stressed out. In fact, I think I would almost go so far as to say that I was really rather r-e-l-a-x-e-d. Yes, really! It’s no wonder I didn’t immediately recognise it as it’s been a while since I have felt that way.

And, it didn’t just happen on Sunday: it continued in to Monday, and even Tuesday. It felt absolutely, bl**dy amazing! Not only that, but there was precious little evidence of the Fibromyalgia to be found on those days.

Ooh, I really enjoyed that light-headed feeling! Which was just as well, as I was back down with a bump yesterday: feeling myself winding up, familiar twinges of Fibro-related pain and tiredness leaping upon me, making me feel decidedly unwell and that awful dizziness compounding matters. Luckily, the tiredness and feeling unwell lifted after I had gone to bed in the afternoon and rested for a couple of hours. I usually don’t like to return to bed during the day but, yesterday, bed felt like the only place that would help.

Today has been different again. Today I have been literally faced by one of the two enormously stressful situations that are going on in my life at the moment. You could be forgiven for thinking that I had turned into a politician today as, clearly, there have been questions that have had to be asked and difficult decisions to be made. I am on the horns of a dilemma. I try to be a truthful and honest person, but sharing the truth with two of the most important people in my life will cause each of them pain and anguish. On the other hand, if I lie to them, instead… well, I’m lying to them, aren’t I? And I’m being dishonest, at a time when they deserve the respect my being honest would afford them.

It would be fair to say that I am currently in an unenviable position. Not only that, but so are the other most important people in my life: they can see what is happening but are powerless to help.

I cannot express how thankful I am that the Fibro is allowing me to function. I really don’t know what I would do if the inevitable flare-up were to appear in the midst of all this.

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.)

Time For Musical Chairs

Luscious-looking lovely chocolates
Luscious-looking lovely chocolates

Life is the same, but it’s different. I still have a lot of very stressful “stuff” going on but it is changing shape. No, it’s not changing shape: what’s really happening is that one of the huge things is building to a crescendo. And it’s scary, really scary. As far as my health goes, it seems to be the “scary” that is causing the most problems, rather than the level of stress. Consequently, the Fibromyalgia is no longer in the driving seat. It has been relegated to the position of backseat driver, with anxiety doing the driving and depression sitting firmly in the navigator’s seat.

As far as the Fibro is concerned, my main problems are tiredness, fatigue, tinnitus and ocular migraine – but, they’re a doddle to cope with compared to everything else that’s going on. Thank goodness I have Peter around to support me: he is helping me more than he knows.

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.


The Danger Period

Market Day, Uzbekistan
Market Day,

At long last, life has calmed down somewhat, although it did get considerably worse before it got better. However, at least I have just one person in hospital now and the ‘life and death’ urgency has eased for the time being.

As you may imagine, the levels of stress have been almost unbearable and have stretched to bursting almost every seam of my being. As so often happens, now that the stress is less acute, its effects are now being well and truly felt – both mentally and physically.

In addition to Fibromyalgia, I also have long-term depression and anxiety. Whereas with Fibro I am still very much a learner when it comes to managing how to live with it, with depression and anxiety I am something of an old hand. There are periods when I go into a state of “lock down”. Sometimes that’s a good thing, sometimes not. I think that I am getting better at recognising which is which. At the moment, it is a good thing. I am mentally and physically exhausted by the recent events – and it shows. The Fibro is flaring, causing tiredness, fatigue, incessant tinnitus, dizziness, Fibro fog and bowel problems, amongst other things. Mentally I feel very fragile: I can become upset or unsettled by the slightest thing and, for much of the time, I feel unable to cope with what is happening, let alone deal with day-to-day things that need attention. Worse than that, my anxiety levels are up and I have been having panic attacks. Thank goodness for my “emergency” medicine!

When Peter and I were preparing to fly to Australia in May, Dr. Azeer, my GP, advised me to make full use of my emergency medicine during the trip. He even wrote a prescription for a 100ml bottle of it, so that I could carry some in my hand luggage without fear of it being confiscated!

I had cause to use the emergency medicine on Saturday and, since then, have been taking things very quietly and carefully to try and avoid the need to take more. I am definitely in “lock down”. The only person I speak to, outside of my family, is the friend in whose house my sister now lives, because it is she who answers the phone when I ring. I rang ‘Little Sis’ (her nickname, not actually a relative) on Wednesday of last week to let her know how things were and said that I would rather not talk for the time being. I am very lucky, we are extremely close friends and she understands my coping strategies so wouldn’t have been at all offended. I know she worries about me which is why I have said that emailing is fine. As for most other people, I am keeping my distance – it’s what I need to do, at the moment. I have to be selfish as I don’t have the capacity to cope with anything else. It’s not a good way to be, but it’s the way that’s familiar to me. If I crumble mentally, I’m worried that the Fibro will swamp me physically. And I don’t want that.