Which Way Shall I Go?

Image 91
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.

Advertisements

Transitioning

image
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”.

 

Taking Care Of Oneself, Bossy-Style

image

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

image

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…

image
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.

Is That Music I Hear?

image

I had a nasty shock a few minutes ago. I was checking the name of something in a book and was stunned by some of the information included in the entry. Please bear with me while I catch my breath and recover my composure…

21 September 1974 – my goodness, that’s 41 years ago! Almost exactly 41 years ago! Gasp!

What is the significance of that date, I hear you ask. Allow me to explain.

Today my head has been doing what Syreeta was doing on that date: Spinnin’ and Spinnin’. Well, I say spinning but it has felt different from the usual way that it happens. The only way I can think to describe it is to say that it felt as though it was spinning, but when I opened my eyes, the world wasn’t actually spinning. It certainly felt different from my usual bouts of dizziness: more intense, or something. I apologise, I just can’t conjure up any words that really explain how it felt, but it wasn’t nice.

And finding out that it was 41 years ago that Syreeta’s song was in the charts wasn’t nice, either!

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.

 

How Can Something So Easy Be So Difficult?

Penguins get cold too!
Penguins get cold too!

The tiredness and fatigue are continuing but not in the same way as I have had previously. Sometimes, when I am sitting, I feel fine but, as soon as I try to do anything, I have no energy whatsoever. I have been wanting to get some laundry done for several days but I have a problem. The laundry bin is upstairs and the washing machine is downstairs. I go upstairs to sort the laundry but, by the time I reach the top of the flight of stairs, I am totally exhausted – certainly too tired to sort the laundry! This has been going on since the end of last week! It’s so silly, isn’t it? Such a simple task but it has taken me several days to work out how best to achieve it. Even then, I set the washing machine to do its longest wash so that I could have a decent rest before tackling the next part of the process… taking the clean washing out of the machine and putting it somewhere to dry.

I have to admit that I have found the laundry challenge frustrating. I’ve lost count of the number of times I attempted it, times when I thought I had much more energy than I actually did, but, at last, it is done. Thank goodness.

The fatigue has been affecting me differently for the past couple of days: I can drag myself around slightly more easily than before – it hasn’t been suddenly striking me as I walk across a room. No, it hasn’t done that, instead it feels as though I am dragging a heavy load across Antarctica in hurricane force winds. To say that my limbs feel as though they are made of lead is just too glib. It doesn’t give any idea of the sensation that I have of them dragging behind me so badly that they are being stretched out of their sockets and simultaneously sucked into quicksand. I know that sounds like a strange description but, believe me, it’s a really weird feeling.

It’s a strange so-and-so, this Fibromyalgia. It keeps changing the way it affects me. I start getting used to a particular symptom but then it decides to change the way the symptom manifests itself. It really isn’t playing fair! Would someone tell the referee, please?