Gymnastics Competitions

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Taken by me at Taronga Zoo, Sydney. August 2013.

This week I splurged many of my precious spoons (Spoon Theory) on just one task: gymnastics. Specifically, jumping through hoops. More specifically, jumping through the particular hoops one has to negotiate when applying for a Blue Disabled Parking Badge (“Blue Badge“).

I first began researching eligibility for a Blue Badge several months ago. I don’t fulfil any of the criteria to automatically qualify for a Badge so I wanted time to think about and prepare my application. It’s a funny thing, part of my rôle as a Financial Assessment and Benefits Officer, was to complete countless forms of many different types. I used to joke with clients (I refuse to call people ‘Service Users’!) that on my gravestone would be inscribed the words “She could fill in forms” because I spent so much time filling in all those black boxes. You would think that applying for a Blue Badge for myself would be a doddle, wouldn’t you? Well, you’d be wrong. In common with many other people, when faced with an important form to complete regarding my own circumstances, I become really anxious and lacking in confidence. And, my goodness, did the Blue Badge application form do that for me…

I’m not sure of the reason for my anxiety being so acute. I think it may have been because I was worried that if I was refused a Badge, I wouldn’t be permitted to make another application for quite a while. The boundaries of my world have shrunk considerably over the last few months. I have lost a lot of confidence in myself and my ability to cope alone when I go out. I panic at the thought that I won’t find a parking space very close to where I need to go. Having had several falls and near misses, it feels as though I am more likely to fall than not whenever I walk outside. The whole situation is making me increasingly fearful of going out alone. I really do feel that I should have a Blue Badge.

I actually began the application process for a Badge several times, but I didn’t finish it. I would save what I had done online but then not complete it within the two week limit. I kept drafting and re-drafting my replies to two of the questions, worrying over them, asking FPR to read them and asking his opinion. It was a very stressful process. However, I finally screwed up my courage a few days ago and completed the entire form. And I even submitted it! I received an acknowledgement and an appointment for my assessment at the end of June. I printed a copy of my application, as I like to be able to see what I have written on official forms. Also, I wanted to send a copy of my application to the Amazing Dr Azeer. He and I had discussed my applying for a Blue Badge and he had said he would be happy to support my application. I felt it would be wise to send him up-to-date about my condition as I have deteriorated since my last consulation with him. I have been terribly efficient and written to the Amazing Dr Azeer, sending the copy.

Now all I have to do is wait for my assessment – and hope like mad for the decision to go in my favour. Fingers crossed!

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The Other Choice

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Morocco. February 2012

Last time I said about having a choice to make and went on to write about Fibro Feet. Well, today I am writing about the other option that was in my mind at that time: Tinnitus.

I have had Tinnitus since my early 20s. I clearly remember the first time I recognised that I could have different sounds in each ear, at the same time. It was in the village of Smarden, in Kent, just as I was about to get out of the car. (Just a useless piece of information for you.)

Tinnitus has a been a feature of day-to-day living for most of my adult life. Occasionally it would be severe but then it would settle down again: annoying and sometimes rather too intrusive, but not actually causing any problems. However, since the onset of the Fibromyalgia, the tinnitus has worsened considerably. I’m not saying that the worsening is solely due to the Fibro as some of my medication mentions that Tinnitus can be a side effect, but I certainly believe that Fibro has contributed to the worsening of the condition. I am finding that, more and more, Tinnitus is interfering with my actual ability to hear and distinguish sounds. For quite a long time I have sometimes had to struggle to tell whether a noise is in the environment or just inside my head, but now I find that there are occasions when the noise in my head is so loud and intrusive that it obscures environmental sounds to some extent. The obscuration can range from very slight to almost complete. I don’t think it is affecting my ability to hear speech as that seems to be pretty good but, if FPR asks me is I can hear a certain sound, I can struggle to hear it. It’s not nice! And I don’t like it!

I know that many people with Tinnitus suffer far more than I. I am grateful that mine is not considerably worse and I feel deeply for the suffering that those people constantly live with. My complaint is not so much that I have Tinnitus, it’s that the effects of it are another thing about Fibro that eats away at my self esteem. Bits of me are being stolen by Fibro and other conditions that I have: my brain no longer works as efficiently as I have been used to, my ability to cope with stress is practically non-existent, my body doesn’t function as well and, now, my hearing is being impinged upon. It feels like I am losing being me, that I am being taken over by another being (Fibro). I don’t know but perhaps I am afraid that I will be so completely subsumed by Fibro that I won’t be me, I’ll just be Fibro living in my body.

I think that, probably, most people take their bodies and brains for granted. I certainly did. However, when that edifice starts to crumble, it can be a struggle to find who one is in the rubble. I am still searching.

 

I Wasn’t Expecting That!

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Scandinavian Architecture in Norway (I think)

I had to see one of the GPs in our health practice, this week. Unusually, it wasn’t the wonderful Dr A but another of the doctors to whom he had referred me for a particular problem. In connection with that problem, she and I talked about fatigue and Fibromyalgia in general. As we were nearing the end of the consultation, I asked her about sore throats. I mentioned that several times recently I had had a very sore throat, although it hadn’t developed beyond the soreness. I said I wondered if it might be to do with the Fibromyalgia as, about 20 years ago, I regularly used to get a sore throat and lose my voice, sometimes for a month or more, due to stress. Dr B said she wasn’t aware of it being a symptom of Fibro but, as Fibro can be reactive to stress, it may well be connected. Nothing more was said about it.

Later in the week, I was reading this page, which I had linked through to from another page on that website.

Now, I don’t tend to read much about Fibromyalgia as, early in my Fibro journey, I found that the information I was reading was depressing me. I read about all sorts of symptoms that I didn’t have (at that stage, the only symptom I realised I had was fatigue – huge great bucketloads of it!) and they weren’t very nice! In fact, I’d go so far as to say that they looked a bit unfriendly, or even downright nasty! I made the decision there and then not to read about Fibro unless I began having a new symptom. If and when that happened, I could just do a quick check that it was, indeed, part of that joyful pakage otherwise known as Fibromyalgia, then not read any more. And that’s what I have done. Mind you, I hadn’t thought to look at whether a sore throat might be connected – that only occurred to me when I was talking with Dr B.

Oops, sorry, I went off at a bit of a tangent there.

As I said, I was reading that page later in the week and I saw that Sore Throat is listed as a symptom of Chronic Fatigue Syndrome (otherwise known as CFS or ME).

Ting-a-ling.

I looked through the list of symptoms again and saw “adrenal stress (low stress tolerance)”.

Definitely ting-a-ling.

My ability to cope with stress has all but disappeared. It had been pretty ropey before the Fibro diagnosis, but now it is very notable by its absence. I may have misconstrued the phrase ‘adrenal stress’ but I have made a note for myself to speak to the wonderful Dr A about it. I’m not sure if being given a diagnosis of CFS/ME would make any difference but, somehow, I think it would feel tidier to know, one way or the other. There would be a place to cross-reference things in my brain’s internal filing system.

I hadn’t expected that I CFS/ME might be involved. I think I had avoided even thinking about any possible connection as it seemed a bit of a cliché and I didn’t, and still don’t, want to be a cliché. I already feel like a bit of one because I am an older woman who “suffers with her nerves” and I certainly don’t want to add to that feeling. However being able to say either “Yes, it is” or “No, it isn’t” would allow me to know where I stand… or, rather, where I collapse in a heap – very elegantly, of course! Ha ha ha.

And Now, Here Is The Weather Forecast

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Warning sign on the outskirts of Longyearbyen, Spitsbergen, Svalbard

I was thinking, only fairly recently, that I seem to be escaping Fibro Fog. I had noticed signs of Fibro Fog soon after my diagnosis, but it hadn’t hung around long. Oh, how easy it is to deceive oneself! I was conveniently ignoring the more subtle manifestations of Fibro Fog. Actually, I don’t believe I was deliberately ignoring them: I simply wasn’t recognising them for what they were. As I look back, I reealise the signs were there, all along.

In my defence, I believe some of the problem is connected to the long-standing anxiety and depression that I have. I think there is a considerable overlap between the effects of those and the Fibro Fog: it really isn’t easy to define where one ends and the other begins. Mind you, it probably doesn’t matter, does it? Whatever you call what happens to my brain, the effects are pretty much the same.

Events this week have shown just how muzzy the workings of my brain now are. It has been a shock, both to FPR and to me. Throughout our relationship, it has tended to be me who has dealt with the admin-type stuff in the household, and it has worked well – until now… However, this week, we have both seen some of the strange mistakes I have made. Some of the mistakes are amusing, but some could (and almost did) have serious consequences. It is quite a concern. Not only that, but it is annihilating my self-esteem. I had already accepted that my ability to cope has shrivelled away, but now I have to face the fact that what is in my head is not necessarily the same as what I see, hear or say.

I feel like an idiot. It is difficult for me to trust or believe in myself so heaven only knows how FPR is going to cope with it.

Believe me, it ain’t nice.

One Thing Leads To Another

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Morocco, February 2012

This week, FPR and I returned from a much-needed and long-awaited holiday. Despite all the “stuff” that has been going on, I think we both benefitted from the holiday. I found that often I needed to sleep after breakfast and, again, before dinner but was able to do all sorts of things during the times that I was awake, so the Fibro wasn’t causing me any particular problems.

During the last few days of our holiday I received a message and dealt with its contents, but it did leave a slightly unpleasant taste in my mouth. Yesterday the same issue arose again. I thought it had been successfully dealt with but, like a loose tooth, it keeps nagging away. Unfortunately, for the past year, I have been completely unable to cope with unpleasantness or stress which has meant that the current matter has knocked me out of kilter. That has affected my mood and state of mind which has, in turn, affected the Fibro. The sorts of symptoms I am experiencing are mainly brain fog – which is a nuisance as I need to sort my medication into the daily boxes – and sudden bursts of pain. I haven’t had the pain appear like this before: it’s almost as if the pain is saying “If you prod the fibro, it will make me leap up and make myself felt”. So…

I would like to send a huge “thank you” to everyone involved in nudging the Fibro monster into action: it was exactly what I needed to help dispel the “feel good” factor that I brought back from holiday.

Something, Or Not Something?

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Longyearbyen, Spitsbergen. August 2017

It’s been a bit of a break since my last post because not much has been happening, although quite a bit has been happening. Sounds like nonsense, doesn’t it? It isn’t nonsense, honestly.

As far as the Fibro is concerned, it’s true that not much has been happening – well, until the past few days. Where Life is concerned, things have been rather different, however. For a change, the Stuff has been happening in FPR’s family, not mine, but it does have an effect on me, of course.

What I have found is that the happening of Stuff has been accompanied by tiredness. I hesitate to call it fatigue as it hasn’t been quite like fatigue. The tiredness has been a slight nuisance, nothing more, except…

At the weekend, I went out with my son and his family for lunch at a local garden centre. I had hoped to accompany them to where they were going in the afternoon but didn’t feel quite up to it. During lunch we agreed that I would run an errand, to save him some time. When I moved in my chair to stand up, it became obvious that I wasn’t going to be able to fulfil that undertaking: I could feel Fatigue rushing towards me.

We headed towards the Exit, pausing to look at a display. As far as I was concerned, that pause was a mistake so I left them and returned home. By the time I got home I was shattered. In fact, I felt quite unwell. Throughout the afternoon and evening that feeling didn’t abate and, by the time I went to bed, my body felt alien. I had begun to feel pains in my arms that I hadn’t felt before. They differed from the pains I had been experiencing prior to taking turmeric – certainly, they felt sharper. Those pains continued through to the next day. I am sure that they were a direct result of me feeling so tired. Consequently, I feel that I need to avoid extreme tiredness, as far as I am able. Of course, it is not always possible, but I will certainly try. Maybe, it was coincidence and the Fibro has moved on a bit, but it has to be worth trying to avoid something that gives a good impression of a trigger.

* I drafted this post a couple of weeks ago but haven’t been able to publish it because accessing the internet has been difficult.

Waking and Sleeping

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Morocco, February 2012

It’s very easy to become anxious about one’s sleep patterns. How often do we hear someone talking about how they “can’t sleep”? Actually, how often do we, ourselves, say those words? I know I used to talk about lack of sleep (maybe that should say “complain about”) quite often.

You might think that sleep, or the lack thereof, would be high on my list of grumbles, but, actually, it isn’t. Lack of restorative sleep is a well-known symptom of Fibromyalgia. Luckily, I don’t seem to have that particular problem: when I sleep I am refreshed by it, even if I sleep for only a few hours overnight.

In the past, stress has greatly affected my sleeping, but not always in the way you might think. There have been just a few occasions where a sudden stressful event has caused me to become overwhelmingly tired and to sleep deeply for many hours. I think it was my brain’s way of escaping whatever awful thing was happening. It was always strange as the events were of a kind that one might imagine would make sleep impossible. As I say, that happened rarely, more usually I would struggle to sleep. (My late husband would sometimes deliberately bore me to sleep, if I was having a rough time of things, by talking about a subject that interested him but had the opposite effect on me. Most times it worked like a dream!)

Over the past four or five years, I have realised that worrying about the amount of sleep I have is pointless. I believe that if one begins to actually worry about sleep, the whole problem grows exponentially. When I am going through a period of disturbed sleep, I simply accept it. It is a benefit of Fibromyalgia [yes, really, there is a benefit!] that I can sit in an armchair, with my legs up, and fall asleep. In fact, it’s not particularly unusual for me to fall asleep more easily in the chair than in bed! So, if I am lying in bed awake, I am quite likely to get up and go downstairs. I might have a cup of coffee, do some knitting or sewing or, perhaps, watch TV. Sometimes I will fall asleep in the chair, or on the sofa, and at other times I’ll go back to bed. The one thing I won’t do is worry about it.

Obviously, my situation means that I am able to leave the sleep to sort itself out without it causing me too many problems. I no longer go to work and I have no dependants, so my time is my own. I am very lucky to be in that position, unlike so many other Fibro Warriors who have partners, children and homes to organise. However, please don’t think that I take my good fortune for granted. I have had some truly awful times in my life and long ago reached the point where I learned to enjoy and appreciate every good time that came along.

 

Another Lesson Learned

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Singapore, 2015

I am pleased to say that this week hasn’t been too bad. Yes, there’s been fatigue, but it has simply been a nuisance rather than dragging me way down. Also, pain has been minimal. I should add, at this point, that I began taking the turmeric capsules last weekend. Consequently, I cannot be sure whether it is the Fibro that has been better this week, or whether the turmeric is a wonder product that began annihilating it as soon as I popped the first capsule in my mouth! I think it more likely to be coincidence.

What I have learned this week is that the Fibro is very reactive to environment and stress, even in the very short term.

Peter and I were busy working on a particular task, one day this week. Unfortunately, due to circumstances beyond the control of either of us, things were not going as well as we had hoped – you know the sort of thing: one step forward, two steps back. I began to feel frustrated which led to feelings of agitation, then on to tiredness, verging on exhaustion, plus a general feeling of not being well. I said I was having a break and went to sit down. After 10 or 15 minutes, all of those feelings I had been experiencing were calming down and I felt able to face the task again. It had been an odd sensation, one which I wasn’t aware of having felt previously. Understandably, Peter had misread the signs I was apparently giving off. He thought that I was feeling too unwell to continue and was, I think, quite concerned for my wellbeing.

I think that what had happened was that I had been stressed and overwhelmed by the situation, which had led to me suffering several Fibro symptoms, albeit for a  very short time. Once I had taken myself out of the situation and had some “time out”, I quickly recovered my equilibrium.

The experience was a valuable lesson about how stress can bring on a sort of ‘mini’ Fibro attack and, also, how taking “time out” for just a short while can alleviate those symptoms.

 

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!