Quick Step, Anyone?

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My late mother, who was a lifelong dance-a-holic

I’m assuming that you are familiar with the “slow, slow, quick, quick, slow” of the ballroom dance called the Quick Step. Those instructions comprise one of my strongest memories of my childhood. My sister and I used to go to ballroom dancing lessons every week in a small hotel which had its own modestly-sized ballroom.

There’s not much chance of me doing the Quick Step at the moment. I’d be fine at the “slow” but the “quick” would be more of a problem. Well, I say a problem but, really, it would be missing completely. As you might guess, fatigue is being an absolute pain in the proverbial. Whilst we were on holiday I was pretty sure I would be hit by the post-adrenaline crash when we reached home. However, surprisingly, it didn’t quite happen like that. We arrived home last Saturday evening, and I was feeling just the usual weariness that comes after a long journey. On Sunday, I was a little tired, but nothing too awful. Come Monday morning, though, it was an entirely different story.

I was up and dressed at a reasonable hour (nowadays I often don’t dress until late morning). I was planning to go to meet a couple of friends, although I really didn’t feel much like it. I was very relieved to receive a text message from E saying that J was away and that if I still wanted to meet, she would get ready and see me half an hour later than originally planned. It gave me the perfect excuse to withdraw. That was important to me because I so often feel that I am letting them down when I have to cancel arrangements.

Rather than having a protracted text conversation I rang E to chat. Within a few minutes of ending the call I went to sleep… for several hours! And it feels as though I have been sleeping ever since.

I think this may have been my worst week of fatigue during my whole Fibro (and now also CFS) journey. I sleep for an hour or so after my first cup of coffee in the morning. When I waken I attend to a small task downstairs, planning to wash and dress immediately after, but the task wears me out and I collapse in a heap in the chair. Cue more sleep. I wake again and go upstairs (a huge effort, in itself) and force myself to deal with another small task in addition to washing and dressing. Fatigue rears its ugly head again so that I am feeling dreadful by the time I get downstairs. Oh, good, there’s my chair: I can collapse in another heap. Oh! I’ve fallen asleep again!

I think you get the picture.

There are things that I wanted to do this week and I haven’t managed any that needed me to be outside of the house. FPR and I went to see his mother one day but that was a mammoth struggle which took its toll the following day.

It has been difficult during the past few weeks to keep any sense of humour about things but I’m hoping that it will return soon. In the meantime, I have realised that I need to have a serious think about adapting the way I live my life to cope with the restrictions that fatigue is forcing upon me. It will have to include the craft activities that I do and may well mean some serious stash-busting will have to take place. I wonder where I can find some energy to deal with that? Ideas on a postcard, please.

 

 

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A Change Is As Good…

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Transiting the Kiel Canal. 19 April 2018

FPR and I yesterday returned from a little holiday to the southern Baltic. We were on a cruise with a cruise line that we have travelled with several times. Due to my state of health, amongst other things, we had to change our plans for various parts of the trip. Initially I had been going to drive us to Essex (the ship was departing from Tilbury), parking my car at the new home of my Baby Son and his partner. However it became clear that for me to drive that distance would be very challenging so we decided to travel to Tilbury via public transport. And that’s where the problems began!

Access to the coach which was to take us to London was via a set of very steep steps. I had been finding walking increasingly difficult and labour intensive, during the days leading up to the holiday. Consequently, when I tried to board the coach, I could barely lift my foot off the ground, let alone pull myself up the steps. Eventually, with help, I managed to get up the steps but the incident shocked and disappointed me.

Over the next couple of days I struggled on. I was finding it challenging to walk aboard ship. My balance was shot to pieces, I had quite a bit of pain and I felt as though I had lost the ability to walk properly. It was all rather unnerving.

Last Sunday, FPR and I went ashore to explore the town where the ship had docked. The difficulties with walking still persisted and fatigue was being troublesome. I was resting at one end of the town square when FPR beckoned me. I set off at my snail’s pace but disaster struck. With FPR something like 80 or 100 yards ahead, I tripped and fell, bumping my head in the process. Luckily there were four passengers from our ship who witnessed my fall and rushed over to help, for which I was and am very grateful. I was not badly injured: just an interesting lump on my temple, followed by a bruise featuring some rather exotic colours!

The fall made me realise something very important which is to use a walking stick on days when walking is a problem. Certainly, after that day, if I went ashore at all, I used the walking stick that I had taken on holiday with me and it made walking, and keeping my balance, much easier. I didn’t use the stick on the ship as I seemed to be managing fairl well. However, I did use it whenever I went ashore.

You never know, I may even manage to use the stick now that I am home…

Watch this space.

 

Which Way Shall I Go?

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My Big Sister

I am wondering which way to go, today. I’m spoilt for choice as I could go this way, or that. I am stuck between Scylla and Charibdis Charybdis (spelling mistake courtesy of FPR!). Caught between a rock and a hard place and trying to choose between the Devil and the deep blue sea. I’m weighing up all my options before I come down on one side or the other as, at the moment, I am sitting on the fence.

I need to make a decision.

Had you guessed that?

The decision concerns this blogpost but I shall continue as I am, for the moment.

When I go to bed I really like snuggling under the duvet. I especially like the winter because snuggling feels so cosy and warm, even though my nose is probably still cold. However, there is one problem with diving in bed and drawing the covers right up and around me: Fibro Feet.

Between about five to fifteen minutes after I settle in bed, my Fibro Feet switch on to maximum, which means that the covers have to be kept well away from my little tootsies. They are burning hot inside and it feels as though the skin is being scraped off with a rasp. In fact, that scraping feels so realistic that a picture of it happening comes into my mind. That, in itself, is unpleasant because, as those closest to me know, I am very squeamish. I really dislike blood and gore and the image that comes into my brain contains both of those.

Another sensation that begins is that of my feet being pinched by a strong metal clamp. It doesn’t feel as though they are being squashed, it has a very definite feel of being pinched. I wonder why it is that all the sensations and feelings connected with having Fibromyalgia and/or Chronic Fatigue Syndrome are all so unpleasant? The two conditions really should be told that it’s rather unkind to inflict all of that onto people who are having to cope with life encumbered by long-term illness.

The Fibro Feet don’t just attack when I am in bed, although they do consistently appear then. Their campaign against my poor plates of meat reignites at all sorts of times and in various places, but there doesn’t seem to be a regular pattern – except when I go to bed. It’s OK if I fall asleep immediately (feel free to snort with laughter at this point, if you wish), if not, they attack and they attack fast – and they ain’t takin’ any prisoners.

Ghouls, Ghosties and Other Scary Things

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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.

 

Transitioning

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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”.

 

The Pleasure And The Pain

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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.

 

Was It Ordinary, Or Extraordinary?

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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

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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?!?

The Radical Option

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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!

You Might Say It’s Been Quiet But…

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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.