A Very Special Gift

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Bondi Beach (I think!). Summer 2013

Here in the UK the National Health Service has a vaccination programme each winter to protect certain vulnerable people from flu. I can’t remember which groups are included – and I’m too lazy to check it, at the moment – but I know that I am one of the people invited to have the flu jab because I have a chronic chest condition. It usually takes me a while to get around to having the jab, but I do always make sure that I take advantage of its availability. I think it is sensible to have vaccinations when they are available. In fact, in 2015 I heard that there was a Shingles vaccine available.

Now, my body is extremely reactive to stress. Over the years, stress has caused me to suffer prolonged periods with no voice – the problem was so bad that I began learning sign language so that I could communicate with my family without having to write everything down. (Have you ever tried losing your temper when you have to express that anger down on paper? T’ain’t easy, I can tell you!) Stress has also caused me to suffer excruciatingly crippling headaches – not migraine but most definitely as bad as migraine – and also to develop Irritable Bowel Syndrome, amongst other things. Oh, yes… and Fibromyalgia.

Anyway, back to the Shingles Vaccine. When I learnt about it I was under a huge and prolonged period of stress. I knew, as did my favourite GP, that I was likely to be susceptible to anything and everything when the stress dissipated, so I asked him if I might be given the Shingles vaccine. He agreed that it would be a good idea but, unfortunately there was no way that it could administered within the NHS as I was outside the qualifying criteria. I decided to pay privately for the vaccine and, even though it cost more than £100, I remain certain that it was a sensible thing for me to do.

As you can see, I am a believer in the use of vaccines and so, this winter, I had the flu vaccine, as usual.

During the past three weeks I have been in the company of some people who have been suffering from the nasty cough/cold/flu lurgy that has been touring the UK. Usually, I would steer well clear of those nasty germies, but it wasn’t quite as easy as usual. Consequently, I have been half-expecting to be struck down with a severe case of Fibro Flu. Cue this week.

On Tuesday I began to feel unwell: very unwell. I had severe pain in the thoracic region of my back and also in my chest, both of which are pretty reliable signs of a chest infection working itself up into a frenzy. I was boiling hot. Then I was freezing cold. Fatigue and tiredness were off the scale. I felt decidedly l-o-u-s-y. My favourite GP likes me to keep antibiotics at home so that I can start taking them as soon as a chest infection starts because, once the infection takes hold, it is an absolute whatsit to get rid of. However, this time, I didn’t start taking the antibiotics. Although I seemed to have almost all of the symptoms, I wasn’t completely convinced that I actually had an infection. I already had an appointment booked with my favourite GP for Wednesday afternoon and decided that I would wait until I saw him and ask him to take a listen to my chest. Wednesday came and in I trotted to see my favourite GP. He checked me out and said that my chest was completely clear. It wasn’t a chest infection! Hmmm. Peculiar…

It turns out that my symptoms were all courtesy of “the gift that keeps on giving” (to quote my friend, Anne). My Fibromyalgia has decided  to make me feel so lousy that it feels like flu. Isn’t that fun? You’re right. It’s not.

Fave GP and I discussed Fibro, symptoms and medication and agreed on the same conclusion i.e. there is little point in me taking any of the recognised medications for Fibro as they are all aimed at the pain, which is the least of my problems. Fave GP asked me which symptoms I have and I went blank. I just couldn’t think! Whilst I was trying to reply, I had to pause for a while, after which I told him that dizziness (which had been the reason for the pause) is one of my symptoms. I told him that I have a wide variety of symptoms but little pain, compared to other suffers, for which I am very grateful. Please be sure, fellow Fibro sufferers, that I am truly thankful that the pain I have appears slight in comparison to what seems to be the case for very many people who have Fibromyalgia.

In view of the discussion of symptoms with Fave GP, I have decided to try and add a page to this blog where I can note any symptoms that I have. So, watch this space – or should I say, watch the space next to this space?

 

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Nice to be back…

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The Italian Chapel on Mainland in the Orkney Islands

Hello, I’m back.

It’s been a while, hasn’t it? A long while.

In my last post I mentioned the theory that perhaps my Fibromyalgia would be gone with, what some perceived, as the cause gone. My younger son, the eternal optimist, had been the first person to actually say the words, but he was only saying what several important people in my life were thinking. I freely admit that I was one of those people, which is surprising given that I tend to be a pessimist! However, life has taught me that you have to recognise and appreciate the good times in order to help you through the bad.

For several months, the Fibro hardly made an appearance and I certainly recognised my good fortune. That was the main reason for the hiatus on here – there just wasn’t anything to write about! Other areas of my life were not so good, which was another reason that I didn’t post. Recently, life has found a new pattern which, disappointingly, includes a resurgence of the Fibro.

Since around Christmas 2016, I have been noticing bits of pain appearing in some parts of my body – a bit unpleasant but easily tolerable. Slowly the pain increased in intensity, but remained tolerable. I discussed these changes with my GP, Dr. Azeer, earlier this year and we agreed that it was better for me to continue without any medication for the time being. After all, that decision can be changed if circumstances alter, which they have done this week. Ladies and Gentlemen, Elvis may have left the building but Fibro pain has, most definitely, entered it!

Things began to change after a recent particularly busy period. Initially I thought it was simply a flare-up because I had overdone things: I was feeling more pain in a couple of spots and was having more frequent bouts of dizziness and of fatigue. The pain was steadily increasing and, although still tolerable, it was becoming more persistent. In addition, my sleep pattern had deteriorated. I was having to take frequent rests whenever I undertook any tasks: frustrating but OK. However, last week something new happened…

I had almost finished some sewing that I was doing and I was feeling tired, but in a way I didn’t remember having felt before. I decided not to stop as I had so nearly completed the task. With hindsight, I cannot decide whether that was the right or wrong thing to do. Once I had done what I wanted, I went to rest in my recliner chair and, oh, did I need to rest! I was assailed by more pain than I had experienced previously. Not only that, but the pain hurt more than it had before and I felt very unwell because of the combined effects of pain and fatigue. I am finding it impossible to adequately describe how I was feeling as it was far removed from my experiences with Fibro thus far.

As the evening wore on, I felt less unwell but was still in a lot of pain. It made being in bed, and sleeping, very difficult. I couldn’t find a reasonable position to lie in. My left arm and shoulder are heavily affected by pain and it was even worse that night, hence my difficulties in deciding how to lie. The severe pain continued well into the following afternoon, easing slightly as night-time approached. My partner and I were out for the day and, when I drove home in the early evening, I found it unusually painful to drive his car. That is a slightly concerning element but it does reinforce how pleased I am with the car I bought last year, as I find it easier to handle and less tiring to drive.

The days since that episode have become steadily better and, in fact, I have just had two, yes two, pretty good days on the trot. I think those closest to me are pleased as I tend to make noises when I am in pain. I try not to groan, but I am often unsuccessful…

**    Apologies to all Orcadians. My partner has just told me that the Italian Chapel is not on Mainland but on another of the Orkneys. Apparently we crossed water en route from Kirkwall! My excuse for not noticing is that I wasn’t really with it. It was just two or three hours after I had been told of my sister’s death.

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.

Onward And Upward.

A very special gateway...

A very special gateway…

Things have been a bit odd over the past two or three weeks. The Fibromyalgia has been “different”. I was prepared, or as prepared as one can be, for a full-on Fibro Flare, but I wasn’t prepared for “different”. I was taken by surprise.

What do I mean by “different”? Well, the bits and pieces of symptoms that I have had, have behaved differently from how they usually are. For example, today I have been having pain in my legs, but it has felt different. Also, I have had stabbing pains in my hands, as well as my feet – I’ve not experienced those pains in my hands before. The dizziness has also been different from previous occasions. Unfortunately the nausea has been awful. I have a sneaking suspicion that it is due to the Amytriptyline so I have reduced my dose by 10mg – but don’t tell Dr. Azeer because I haven’t told him yet. 🤔 I certainly haven’t had a flare-up during these last three weeks and for that I am extremely grateful. There has been so much to do: telephone calls made and received; appointments with all and sundry, in various locations; information to find; decisions to make; places to go; packing to do; clearing; avoiding nosey gossips. (As for nosey neighbours, here’s a handy tip: ** it’s amazing how useful the phrase “Well, you know…” can be – it answers the enquiry without actually revealing anything!)

At the moment life is less stressful than it has been. In fact, yesterday someone commented that I look really well – and, when I looked in the mirror, I saw that it was right! I DO look well. I look much better than I have for a long time. I’m hoping that things continue like this for a while, so that I have time to really enjoy it. We’ll have to see how that goes, won’t we?

A Quick Poke Around The Edges

Similar to my current surroundings

Similar to my current surroundings

Here I am, at four minutes past midnight, sitting in surroundings which bear more than a passing resemblance to the photo above.

It has been a challenging week, or so, in a variety of ways, including the edges of a certain medical condition which keep giving me a poke. For example, today the dizziness decided to make an appearance whilst I was transacting some business. It’s quite embarrassing, trying to cope with dizziness when there is a stranger in front of you, watching you and obviously wondering what on earth is going on. Luckily the attack passed quickly.

Then there have been the times when I’ve been explaining something that needs to be done but simply don’t have the word that I need. And, how about all those times when I’ve been discussing something with my partner, or someone else, and that dear miss, Ang Zya Tee, decides to butt in?

There have been other symptoms, as well, which have been nudging their way in at the edges of my being, rather like physical reminders of the beast sheltering in the background. Maybe the Fibromyalgia is getting wise to the ways of the adrenalin that has been rushing around my body for some time.

Admittedly, the adrenalin levels are most probably considerably lower than they were during most of August and all of September and October, but November has brought with it stresses and strains of its own, so I don’t want to count my chickens. All in all, though, I do feel much calmer than I have done of late, and that is probably why the Fibro is managing to poke me convincingly.

I am doing my best to take care of myself, particularly in relation to stress levels. I am choosing the least stressful option whenever possible as I think I’ve had enough stress to last a lifetime! We’ll have to see how well that works, won’t we?

Since Last We Met….

A gift from a lovely lady

A gift from a lovely lady

Much has happened since my last post: some rather amusing, some most definitely not. A considerable amount of activity was centred in or around hospital and/or medical staff.

On Wednesday of last week the goal posts were moved. It marked a huge sea-change affecting some of the stress that I have been under for the past two months or so.

Thursday brought forth an unbelievably good blood pressure reading, despite what life was bombarding me with. And then things got worse…

Throughout all the trauma, the Fibromyalgia has been kept at bay by the adrenalin surging through my veins. However, I am very aware that when life calms down I am likely to go into an enormous Fibro Flare, but there is little I can do to prevent it. For the time being, I am trying not to overdo things, but it’s not easy. I have a huge amount to do, much of which has a deadline, but I am trying to remember to rest in between tasks. It is very easy to slip into the mindset of “It’s easier to do it myself” but I am trying not to do that – seldom successfully. I am using various strategies to make things easier. For example, I am working on one thing at a time and then, when that task is complete, I move on to the next task. Working like that seems to reduce the amount of stress I feel.

I am also making copious notes. My brain is a little “Fibro-foggy” so making notes is helping me to keep track of what I am doing, what I have done and what I need to do. This particular aspect is not always as useful as it could be as various people are not hearing what I am telling them, resulting in them acting inappropriately and, consequently, creating more work.

The next thing I am doing is keeping things organised. There is a logic to what I am doing, although others may not think so! Things have been placed where they are for specific reasons so woe betide anyone who moves something that I have put in a particular place!

Space and time are looking as though they will be problematic but I think, if I continue plodding along, that I should be able to keep things under control.

As for the Fibro, I have been having more dizzy spells than I usually do and my sleep pattern is currently very disturbed. Oh yes, and the stabbing pains in my feet are dancing attendance, as is the anxiety!

All things considered, it’s a wonder that I haven’t ended up an absolute wreck, even without the Fibro. I am definitely thankful for small mercies. Long may they continue!

Look After Yourself

That about sums it up!

That about sums it up!

I received a tweet today from @NLOFibromyalgia asking me how I deal with stress and Fibromyalgia.

When I first read the tweet I thought it was an easy question to answer. However, whilst sitting here thinking of what to write in this post, I have realised the question is anything but easy to respond to: what symptoms of Fibro will people assume I have? How much stress will they imagine I have in my life at the moment? I learned an important lesson about stress during the Los Angeles Olympics in 1984. My younger son, still a babe in arms at the time, was seriously ill in hospital. I was chatting with two of the other mothers and the inevitable question was asked: “why is your child in hospital?”. The first mother said that her daughter was having the plaster cast removed following an earlier operation on her ‘clicky’ hips. I told them about my son then the third in our little group told us that her daughter “B” had cancer of the spine. The first mother said how awful it was for “B”‘s mother and that our problems were nothing compared to hers, whereupon “B”‘s mother replied that they were our children and their problems were big to us. She also said that it didn’t matter what she was going through, our problems were big to us. Her daughter, “B” died the following day.

I always try to remember that lesson, although I often fail. However, what I think it shows is that it’s difficult to measure stress levels and convey them in such a way that others can relate to them. The best I can do is to say that I have been suffering particularly high levels of stress in my life for more than two months now. At various times during that two-month period, my Fibromyalgia has made itself felt mainly in relation to my energy levels but also by tossing some new symptoms into the mix. However, I am very fortunate as, so far, I have not experienced the high levels of pain that other people have to endure. That’s not to say that the Fibro doesn’t make itself felt, it does. As well as the fatigue, I’ve had nausea, dizzines. intrusive tinnitus, poor concentration and niggles of pain in various places. However, I am convinced that the Fibro has been pretty much kept at bay by adrenalin: I haven’t been plagued with major problems, thank goodness. I must add, though, that I am lucky to be blessed with amazing support from those around me: my partner, my sons, my best friend and the members of the craft groups I attend. In addition, my GP and I have an excellent patient/doctor relationship. He understands how my mind and body react to stress and takes it into account when suggesting any treatment.

So, returning to that tweet, how do I cope with stress and Fibro? With the love and support of those around me, a great GP, gallons of adrenalin and and a bit of luck. Long may it continue, but I rather think that, when these stresses have eased, I will be hit by a major Fibro flare. Oh, well! I’ll just have to deal with it when it arrives, won’t I?

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.