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”.

 

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Trust

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My Sister

This photo is of my sister. She was a lovely person – kind, generous, forgiving, intelligent, placid – but she had demons. Oh, and she used to drive me mad! We were very different characters: I am every bit as volatile as she was placid, we had opposite character traits, different hobbies and interests. Despite all of that, and much more, we had a very deep, strong and special loving bond. It was a faithful bond, one we could trust absolutely. Trust of that kind is very important: it is deep within who we are, almost as deep as the trust we have of ourselves.

Anyone with a reasonable level of self-awareness, will pretty much know and recognise their own strengths and weaknesses. We know the sorts of things we are good at, those we struggle with, the things that we will never be able to master (I wonder if one could use the word ‘mistress’ in these feminist days?). We know who we are and what abilities we have. They are things we can trust about ourselves. But…

What happens when we can no longer trust those very same things? How does it affect how we see ourselves? What happens to our self-esteem? Our confidence? Our understanding of ourselves and the world around us?

I wrote on here recently about how Fibro Fog was making itself felt. Well, it has continued to hang around being a danged nuisance. The reason I had mentioned Fog was because of an incident involving the day of a hospital appointment: I was convinced the appointment clerk had told me it was on Wednesday (as opposed to the usual Monday), but, in reality, it was on the Monday.

Another significant incident has taken place which has really shaken my self-confidence. I feel I can no longer trust myself, my thoughts, my memories. It is very scary. I cannot be sure that what I remember, even from just a week or two ago, is actually a memory. FPR had asked me to order something online for him. During the process I offered him a couple of options and he made his choice, I placed the order and paid for the goods, then I emailed a copy of the order confirmation to him. Except that I didn’t email a copy of the confirmation to him, because I hadn’t placed the order!

Yes, I know that lots of people forget things like that but when one has Fibromyalgia, especially Fibro Fog, and something that seems so real is actually a figment of one’s imagination, it can be very, very scary indeed. Throughout my adult life I have been efficient and logical in dealing with administrative-type tasks, both at work and in the home. I have devised systems and spreadsheets; organised diaries and appointments; filled in enough forms to keep a whole army of civil servants busy; researched issues; interpreted information; completed comprehensive case notes so that any colleague who picked up the file would have all of the necessary information to hand, in a sensible form and myriad other tasks. But that time has passed.

I can no longer glide through tasks like those. Each telephone call, each blank form is like a mental mountain to climb. It feels as though an important part of my brain is playing tricks on me, making me think and act illogically. It makes me feel pathetic. It makes me feel as though a chunk of me is missing. It makes me feel less than I was. It makes me feel stupid. And it makes me feel anxious.

How can I trust what my brain is telling me? It is, in effect, telling me lies, although I can’t tell which are lies and which are memories. How can I trust my brain to keep me safe?

I am feeling out of my own control and, instead, under the control of Fibro. If you were in my shoes, would you trust Fibro…?

 

 

 

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Nice And Easy Does It

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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!

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It Makes Me Sick!

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Some very special people

FPR has been in a sticky situation recently: he has been stuck on the Macbook, which has meant that I couldn’t get near it to type a post on here. I know I could have typed it on my iPad, but I prefer using the Macbook. Silly, isn’t it? Wotevva! That is why it’s been a while since my last post. (As I typed that last sentence I could hear The Last Post playing in my head!!!)

OK. Let’s get on to the business in hand…

Back in early September, I mentioned in this post having felt nauseous. This is something that happens occasionally. I don’t really remember it being an issue since I tried taking Amitriptyline back in 2015. The Amitriptyline caused me to suffer dreadful nausea and vomiting. Since that time, I have suffered bouts of nausea occasionally. However, those occasions are becoming more frequent and, consequently, more troublesome. I hadn’t attributed them to any particular cause but rather just viewed them as unpleasant things that happened once in a while. Recently, though, I have been wondering if there is an underlying cause for the nausea so I decided to check whether it is a recognised symptom of Fibromyalgia. No prizes for guessing what I discovered.

I can’t remember, now, which website I read about nausea being a symptom of Fibro but, because I wanted to add a link about nausea in this post, I did a quick search online and this site came up. The piece I read last week didn’t mention nausea as being a common symptom of Fibro so it was something of a revelation to read it in this post. This is probably a good time to remind you that I tend not to read about Fibromyalgia. I did so when I was first diagnosed but found the information so depressing that I decided not to read any more, unless I was looking for something specific. I was depressed enough, without adding lots of information about symptoms I didn’t have, but  which which might develop in the future.

The article I read the other day mentioned that sufferers of fibro-related nausea should consult their doctor about it. I don’t want to bother Dr. Azeer at the moment: instead, I shall see how things go. If the nausea keeps putting in an appearance and becomes a particular nuisance I may need to review that decision but, for the moment, I shall leave him in peace.

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Fs, Buts And Maybes

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Morocco (I think!), 2012

In the House of Commons, here in the UK, when the MPs have voted the result may well be that “the Ayes have it”. (‘Aye’ is pronounced ‘I’.) Well, unlike the House of Commons, in the house of Bossymamma it is the Fs that have it: Fibro Fog, Fibro Feet, Fumbling Fibro Fingers, Fatigue and Freezing [cold]. And I’m Fed up with it!

Let’s go through those and explain all the joys of the Fs.

Fibro Fog has been making itself felt over the past few weeks, in subtle ways rather than the full-blown muzzy headedness. I have found that simple things have been the ones that my brain hasn’t dealt with very well: for example, hearing “Monday”, repeating “Monday” but writing down “Wednesday”, or reading an instruction, apparently understanding that instruction, and then doing something completely different! One way in which the Fibro Fog has been particularly irritating is when I am knitting. Usually I can knit happily away making whatever takes my fancy. Hmph. Recently I have lost count of the number of times I have had to unpick my knitting because of silly mistakes that I would normally make only rarely. Very annoying.

Next we have the myriad delights of Fibro Feet. Oh, what would life be without Fibro Feet? For, literally, decades I have had hot feet. Admittedly, I don’t like having hot feet but that’s another matter. Now, however, I often have cold feet which, in itself, is not a problem: I simply put on a pair of socks. That’s fine until Fibro Feet decide to kick in [apologies for the unintended pun]. The internal temperature of my feet rockets, the knives start stabbing every part of my feet, the pain intensifies etc. etc. and I just don’t know what to do with my feet.

Now, Fumbling Fibro Fingers haven’t happened much up until now. The most notable occasion that they decided to play was when I was on at a hand sewing workshop – it was very inconvenient. So, Fumbling Fibro Fingers decided they were lonely and wanted to come for an extended visit. Gee, thanks, boys! Do you have any idea how frustrating it is when your fingers are following a different set of instructions from those your brain are giving them? Not only that, but they decide that not more than two fingers will work at any one time and when the next two join in, they will actually be following a third set of instructions that are in Japanese! I’ll just remind you of my love of knitting, here…

Fatigue. Need I say more?

Freezing? In September? In England? Surely not? Hmph. Surely, YES… I should say that this is possibly (or probably) nothing to do with fibromyalgia, but it’s happening now because I have been another sort of unwell and it’s adding to my fedupness.

I hope that my fedupness will soon be over and life will be more like my normal soon. I expect you are, too, so that my next post is not so grumpy.  Fumbling Fibro Fingers crossed!

 

 

Posted in 'snot fair, Cold feet, Coping, Day to day life, Fatigue, Feet, Fibro Fog, Fingers, Temperature | Leave a comment

It’s VERY Expensive!

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Not very welcoming, is it?

FPR’s mother is still in hospital, with all that it entails. She rings me, asking if I will do something for her, then gives instructions in her own particular way. Often the tasks are clearly unnecessary and unlikely to yield any positive result, which makes it difficult to be enthusiastic in the carrying out of them. The trouble is that these tasks take a heavy toll. They drain what little energy I have – and, believe me, it is very little.

You know what it’s like when someone is in hospital: there are telephone calls, more telephone calls and even more telephone calls; chasing round trying to find things the patient has asked for; walking and caring for the patient’s dog; miles and miles of extra driving, much of it on unfamiliar routes; meals at peculiar times because of visiting hours and travelling time to and from the hospital; trying to fit in ordinary day-to-day appointments, and so on. Then there’s the cost…

The cost I am talking about isn’t financial, it’s physical. I am feeling constantly drained and, because I am so exhausted, that is interfering with my sleep pattern. For the past couple of weeks I have been lucky to manage four or five hours at night, and, on several occasions, it has been much less than that. It is taking a heavy toll. The more tired I become, the more problems I encounter with my sleeping, the more pain I have, the foggier my brain is and the more unwell I feel.

As I said, it’s very expensive.

Posted in Coping, Day to day life, Fatigue, Fibro Fog, Pain, Sleep, Sleeping, Tiredness | Leave a comment

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.

 

Posted in Achievement, Bad day, Choices, Coping, Day to day life, Decisions, Fatigue, Lacklustre, Nausea, Pain, Sleeping, Symptoms, Tiredness | Tagged , , | Leave a comment