It’s A Little Bit Me…

DSCF2413

Handmade Mosaic Tile Borders. Morocco, 2012

Time for a touch of nostalgia, everyone. Today’s title is borrowed from this song by The Monkees. They were huge when I was young and impressionable. I used to enjoy hearing their songs and always thought Mike Nesmith was quite dishy. Oh gosh, that makes me feel old! Anyway, as I say, I borrowed part of the song title for this post.

It has been very quiet here, at Bossy Towers. Like much of the UK this week, we have had snow and low temperatures which have encouraged us to stay wrapped up warm and snug indoors – as if we needed any encouragement! The situation has suited me well during the past few days as energy levels have been low. Anything that I have managed to do has been for less than half an hour and, often only a few minutes. It’s been “do a little of this” then “a little of that”. In fact, for much of the time, I haven’t really been doing much at all. Life has certainly changed from when FPR would see me knitting, or sewing, and comment that I always seem to be doing something, always busy. I am hoping those days will return because, at the moment, I can’t even knit for more than a few rows before my oomph is oomphed out. Oh well, at least I can still knit… unless it’s something for me! That’s when the Fibro Fog kicks in, Big Style, but we’ll overlook that for the moment.

Just thought I would mention that Tinnitus is being a real pain at the moment. For the first time that I can remember, the tinnitus in my right ear actually interfered with my ability to hear. Usually I hear everything above the ever-present noise, but once or twice in the last couple of days, I have had real trouble working out if there was any external sound. Pah! Just get lost, tinnitus: I really am not interested in what you are trying to do.

It’s only a very short post, this week. My feet are getting cold and I have just spotted two microjoules of energy which I am going to grab and make full use of!

 

Advertisements

Fs, Buts And Maybes

fullsizeoutput_a5a

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!

 

 

The Balancing Trick

image

I have Fibromyalgia and I am extremely lucky. I am extremely lucky because, although I do have Fibromyalgia, I do not suffer excruciating pain unlike so many others who have Fibromyalgia. However, I am not completely lucky: after all, I do have Fibromyalgia. In the main, I am afflicted by tiredness, exhaustion and fatigue; “Fibro fingers” (when I am unable to feel my fingers properly and it is difficult to use them effectively); wildly fluctuating body temperature; extremely cold hands and feet; dizziness and Fibro fog. I must admit that having cold hands and feet is something of a revelation as, in the past, my feet seldom felt cold. Now, however, it’s a very different story. The cold in my extremities makes having a shower difficult and uncomfortable: my hands and feet are burned by the water and yet, when the water hits my body it is barely more than tepid.

I admit that recently most of my symptoms have been barely present, apart from the dratted cold hands and feet. I had been thinking that the lack of symptoms was due to adrenalin coursing through my body because of the stresses that have been around me recently. However, I’m not so sure now.

When I returned from Australia at the end of last week I was pretty much symptom-free. Yes, I was suffering nausea and sickness plus the ever-present foul taste in my mouth, but I was sure all of that was due to side effects of the Amitriptyline. I decided to reduce the dose from the 60mg I had been taking whilst in Australia, to 50mg per day. I hoped that the small reduction would halt the side effects. I was unsure whether that would be the case as originally the nausea had begun when I was taking 70mg but had reappeared when I was on 60mg, but I didn’t want to prejudge.

I duly reduced the dose last Friday. Unfortunately the nausea and other side effects continued so, after five days, I dropped again, to 40mg. Still the side effects have remained.

I had a telephone consultation with Dr. Azeer yesterday during which I told him about the side effects I was having and that I was struggling to eat because of them. I also told him that I was now taking 40mg. We agreed that I need to come off the Amitriptyline entirely and went on to discuss the remaining treatment options. He again mentioned that Pregbalin was really the only drug choice we had. At that point, I asked him whether its efficacy mainly worked for pain or tiredness. He replied that it works mainly on pain. Hmm. So this was where the balancing trick came into play. I had a choice to make:

1. Take Amitriptyline and feel almost constantly nauseous, suffer frequent vomiting and not be able to eat a reasonable diet;
2. Take Pregbalin and have my body become used to it, even before I have severe pain; or,
3. Don’t take any drugs for the Fibromyalgia.

Dr. Azeer and I had a good discussion during which I expressed the fear that if I start taking Pregbalin now, when I have little pain, it may not be effective if or when I suffer the levels of pain that many people with Fibromyalgia have. We agreed that I would not take any drug for the Fibromyalgia, for the time being, and that the decision can be reviewed whenever I feel the need.

Having heard what other Fibro sufferers have to cope with because of their doctors, I appreciate just how fortunate I am to have such an approachable, understanding and empowering GP as Dr. Azeer. I may have drawn the short straw in some things, but I am so lucky in who my GP is.

That’s A Change

Fairy Chimneys in Cappadocia

Fairy Chimneys in Cappadocia

Today has been a good Fibro Day! It started early: I was awake at 3.30am and, as I was still awake at 4.40am, I decided to get up.

I used my early start to good effect. I had been using my sewing machine yesterday and, after I had eaten breakfast, I decided to continue sewing. I took a break at around 7.45am and was pleased with what I had achieved by that time. Oh, what a welcome feeling it was, having achieved something easily!

At around 9.30 my early start began to take its toll so I decided to have a sleep. Well, I had been up for five hours so I think I may be forgiven! After sleeping I didn’t do much until lunchtime but set to with my sewing project in the afternoon.

It is difficult to describe how wonderful it feels to have had a ‘normal’ day, to have achieved something significant without having to keep having long rests during the process. I didn’t finish the sewing task I had embarked upon but that’s because there was a lot to do, rather than it being too much for me to manage doing.

The only Fibro symptom I noticed today was cold feet – before Fibro dumped itself on my doorstep I hadn’t suffered from cold feet for very many years. I almost welcome cold feet now! I did start feeling some back pain. Mind you, I think that was due to the cutting, pressing and sewing I had been doing, rather than because of fatigue.

Having a good day and, actually, a fairly good week, has given me such a tremendous boost psychologically. I am enjoying the good times while they are here! 🙂