I Can’t Think Of A Title!

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My first view of the Three Sisters, near Katoomba in the Blue Mountains*, New South Wales

I wrote on here recently about trust and confidence when living with Fibromyalgia. It is a subject which often kicks about in my mind.

I think that, upon meeting me for the first time, most people think that I have oodles of self-confidence. I am aware that I often come across to others as brash and in-your-face. However, that is not confidence. In fact, it is the exact opposite. When I am in a new situation I either go very quiet and melt into the wall, or I take a deep breath, grasp my own lapels (metaphorically speaking) and charge in to the situation, me and my outspoken-ness. Don’t worry, I’m not intending to get all philosophical or psychological about that side of me.

Another thing that I am known for and which is a more accurate insight into my character, is my honesty. By honesty, I mean that if someone requests my opinion, I tend to be honest, rather than saying what the other person is hoping to hear. Obviously, if someone simply needs a bit of a confidence boost, I will give an appropriate. However, I really don’t understand why people ask for someone’s honest opinion when, actually, what they want is for you to puff up their ego with as many lies as you can muster. There are occasions when someone benefits from the honest opinion of another, as I hope the following anecdote shows.

Little Sis and I were shopping in Exeter and were in the Ladies’ department of a well-known department store. There was a lady who was trying on an outfit to wear as Mother of the Bride. The shop assistant who was ‘helping’ her was telling her how lovely the outfit looked and the lady’s husband obviously would have said a purple banana suit was exactly right if it meant he could escape more quickly. Little Sis and I saw this tableau and both agreed that the outfit was, most definitely, not right. The lady, herself, was very hesitant and clearly not convinced about the outfit so I quietly whispered in her ear, apologising for interfering, saying that the outfit wasn’t the right one. She looked relieved and thanked me for my comment.  Later in the day we bumped into the same couple again. The lady’s face was wreathed in smiles as she told us that, since seeing her earlier in the day, she had found and bought the perfect outfit to wear to her daughter’s wedding. We were really pleased for her.

This week someone, whom I know gives honest opinions, was very complimentary about something I had done. Those words meant a huge amount to me, the more so because they were completely unexpected and uncanvassed. My confidence in my own abilities has taken a battering recently because of (i) the silly mistakes I’ve made which appear to be due to Fibro Fog and (ii) having to pull out of various activities, which gave those comments added significance for me. By and large, I do prefer people to be honest about my work and/or achievements. That’s not to say that I take them lying down! I don’t promise to change something just because it has been suggested to me – I never have been any good at doing as I was told! However, if I have asked for an opinion, for example, on how an item of clothing looks on me, I would prefer to be given an honest response which I can then take into consideration when deciding on my next step. Like everyone else, I make mistakes, but how can I learn from them if I’m not aware that I’ve made them?

 

*For those of you who don’t know, the Blue Mountains get their name from the highly flammable blue mist which comes off the eucalyptus trees. For those of you who already knew that, don’t read this paragraph!

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Some Enchanted Evening

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Only one pair is mine.

When I was a child I loved the film musical “South Pacific”. Actually, I still quite like it, and, also, Calamity Jane:

“Oh, the Deadwood stage is a-coming on over the hill, deedle-e-di-di diddle-iddly di dee. Twenty three miiii-iiiiillllllessss we’ve covered today, Oh! Whip crackaway, whip crackaway, whip crackaway”.

I liked the songs in South Pacific, as well – most of them, anyway. Having said that, I really didn’t like the corny accent of the male singer of Some Enchanted Evening. Although Rossano Brazzi played the character in the film version, the actual singing was apparently done by Giorgio Tozzi! No matter. Whichever one it was put on a strange accent.

What has all this to do with Fibromyalgia, I hear you ask. Oh, can’t you see the link between the two? Cue a perfect segue… No, can’t think of a perfect one so I’ll just continue with what I was planning to talk about in this post and hope that I remember to make it clear at the end.

I’m pretty sure that every Fibro sufferer (or Fibro warrior, if you prefer) experiences their Fibro differently from everybody else. There is such a range of symptoms, causes and degrees that that must be the case, mustn’t it? I find that some of my symptoms can be triggered by specific things, others seem to appear from nowhere and, yet more, decide to form their own habit. This post is about a symptom that has carved out its own special niche – not that it only uses that niche! Oh no, it still jumps out of the woodwork when it fancies making even more of a nuisance of itself. It’s a very naughty symptom and I would smack its bottom, if I could.

Most evenings, after dinner, I sit relaxing in front of the one-eyed monster, playing with some knitting or sewing. I have noticed that this symptom is very sociable and certainly not very happy when it can’t be near me so, each evening during my relaxathon, out it pops – full of the joys of spring and ready to wreak havoc. (Did I tell you it’s very naughty? I’m sure you can see what I mean!)

So, who is this pesky individual? None other than…  The one, the only… Ladies and Gentlemen, please put your hands together to welcome, with its exclusive one-symptom show… The world famous… The symptom everyone is talking about… The master, or mistress, of your destiny… the irritating discomfort of…

Da-da-dah…

Fibro Feet! (*tumultuous cheers and applause echo around the auditorium.)

Yes, just as I am settling down for the evening, the Fibro Feet start Going For Gold. Their knives have been honed to perfection and they have smashed the technique. In fact, Fibro Feet can do their job with their eyes shut. (I have a theory that they remove their eyes and send them on a scouting mission to find another unsuspecting victim as their aim is so accurate!) The feelings I experience include: like walking shards of glass, having someone stabbing them with a narrow blade, soreness, burning and painful itchiness. I haven’t noticed any particular routine regarding the sensations, it’s just the habit of coming to visit when I am sitting in the evenings. It doesn’t happen every evening but it happens more often than not and it does make appearances during the day, rather than being only nocturnal. It’s a very versatile opponent. It’s a shame it’s so effective.

However…

Some Enchanted Evening(s), it doesn’t take centre stage.

 

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.

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.

 

Being A Nana With Fibromyalgia

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Iceland

My grandchildren make my heart sing. Simple as that.

However, there is one thing they should bear in mind about having a Nana who has Fibro…

When I want to blow on their tummy, they should just give in and let it happen. If I have to struggle to pin them down to do the dastardly deed, it exhausts me and I suffer quite a bit of discomfort after they have gone home.

it’s worth it, though!

What A Week!

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What a week it has been this week! It has been full of ups and downs, forwards and backwards, and any other direction you can think of. I have had good days and bad days with the Fibro but I can’t honestly say that it has been a bad thing. With the way the Fibro has kept changing, it has helped me to understand more about my life and living with Fibro. It really came together last night. Someone asked that question that nearly all of us ask of others: “How are you?”.

I suddenly realised that I can only answer for how I am at the time the question is posed.

Take yesterday. As usual, I awoke early and, after lying in bed staring at the ceiling for about an hour, got up and had a cup of coffee. Whilst sitting and drinking the coffee, I worked on the computer sorting a few things out. Suddenly, the fatigue hit me and I started feeling very unwell. After I had slept, I still felt rough. I had been due to go out later in the day and that looked very much in doubt. Skip forward a few hours and things were completely different: I was feeling pretty good. In fact, I was plenty well enough to go out, as planned.

It was whilst I was out that I had the epiphany when asked how I was. I may be feeling awful at some time in the day, but that can change very quickly. Of course, it can happen in reverse, unfortunately, but that is just the nature of the beast that is Fibromyalgia. However, I think that having that epiphany has changed how I cope with having Fibro and that can only be a good thing.

The Danger Period

Market Day, Uzbekistan

Market Day,
Uzbekistan

At long last, life has calmed down somewhat, although it did get considerably worse before it got better. However, at least I have just one person in hospital now and the ‘life and death’ urgency has eased for the time being.

As you may imagine, the levels of stress have been almost unbearable and have stretched to bursting almost every seam of my being. As so often happens, now that the stress is less acute, its effects are now being well and truly felt – both mentally and physically.

In addition to Fibromyalgia, I also have long-term depression and anxiety. Whereas with Fibro I am still very much a learner when it comes to managing how to live with it, with depression and anxiety I am something of an old hand. There are periods when I go into a state of “lock down”. Sometimes that’s a good thing, sometimes not. I think that I am getting better at recognising which is which. At the moment, it is a good thing. I am mentally and physically exhausted by the recent events – and it shows. The Fibro is flaring, causing tiredness, fatigue, incessant tinnitus, dizziness, Fibro fog and bowel problems, amongst other things. Mentally I feel very fragile: I can become upset or unsettled by the slightest thing and, for much of the time, I feel unable to cope with what is happening, let alone deal with day-to-day things that need attention. Worse than that, my anxiety levels are up and I have been having panic attacks. Thank goodness for my “emergency” medicine!

When Peter and I were preparing to fly to Australia in May, Dr. Azeer, my GP, advised me to make full use of my emergency medicine during the trip. He even wrote a prescription for a 100ml bottle of it, so that I could carry some in my hand luggage without fear of it being confiscated!

I had cause to use the emergency medicine on Saturday and, since then, have been taking things very quietly and carefully to try and avoid the need to take more. I am definitely in “lock down”. The only person I speak to, outside of my family, is the friend in whose house my sister now lives, because it is she who answers the phone when I ring. I rang ‘Little Sis’ (her nickname, not actually a relative) on Wednesday of last week to let her know how things were and said that I would rather not talk for the time being. I am very lucky, we are extremely close friends and she understands my coping strategies so wouldn’t have been at all offended. I know she worries about me which is why I have said that emailing is fine. As for most other people, I am keeping my distance – it’s what I need to do, at the moment. I have to be selfish as I don’t have the capacity to cope with anything else. It’s not a good way to be, but it’s the way that’s familiar to me. If I crumble mentally, I’m worried that the Fibro will swamp me physically. And I don’t want that.

The Up-Side Of Fibromyalgia! (I’ll bet you didn’t know there was one, did you?)

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I’m writing this post at 09:50 BST or 16:50 Singapore time. I am struggling to keep up with what the time is or should be and, as for times to take medication… who knows? I am totally confused. I keep trying to figure out what day it is and, once I know that, I can start to think about what time to take my tablets.

I went to see my lovely GP, Dr. Azeer, on Tuesday. We discussed my imminent trip to Australia and agreed that we would pause the changing of dosages of the Amitriptyline for the time being. It can be resumed upon my return to the UK. Although Dr. Azeer had previously advised me not to travel to Australia during the drug changeover period, he immediately rescinded that and agreed that I must go. That’s one if the things that I really like about him: he takes into account what’s happening in his patient’s life when proposing how to deal with a condition. He agreed with me when I stated that I have the rest of my life to recover from the rigours (both emotional and physical) of this trip, and that could be a l-o-n-g time, whereas my sister doesn’t have that luxury.

For the time being, adrenalin still seems to be keeping me going. (I don’t want to imagine what I might be like when adrenalin is taken out of the mix!) however, a new symptom has appeared: I have been having pain in the back of my hands. Luckily it is intermittent and only mild, but it’s a new symptom, nonetheless.

There you go, there is an up-side to Fibromyalgia: you learn something new about it (almost) every day!

There’s Always Something New

I hope you were able to decipher the message in my last post which read:

“I had a really good day yesterday and felt like the me before fibro hit me and it was such a treat to feel human for a change rather than tired and lacklustre all the time.”

At this point I must apologise for any confusion or worry that my jumbled paragraph caused, and I do so unreservedly. It didn’t occur to me that anyone might misunderstand or misconstrue the meaning of my using the jumbled up words. I hid my message within that paragraph because I thought it would make the news of me feeling good a bit more interesting. One of my friends misunderstood and became very concerned about me as she thought hiding the message inside a jumble was my way of saying that i am beginning to struggle with communicating because of “a sea of gobble-de-gook” in my head. I know she has that problem sometimes which was why she was so upset for me. I am sorry for upsetting her and sincerely hope that no-one else was distressed or offended by what I viewed as a little bit of fun.

What about the “something new”, I hear you ask. Read on, Macduff.

After my wondrous day on Tuesday, Wednesday began quietly. I had all sorts of plans for what I wanted to do. However, whilst I was dressing I began to feel dizzy. It would probably be more accurate to say that my head felt swimmy (is that actually a word?). I occasionally suffer from dizziness (or vertigo) because of another condition, but Wednesday’s bout was completely different to those other bouts. This one felt much gentler, sort of floaty. The usual attacks happen hard and fast. They are so severe that I have to hold on to Peter as proof for my brain that I am not moving. Thank goodness that this new symptom was nowhere near as bad!

The remainder of the day was spent gently pottering and sleeping: I slept for around two and a half hours and would probably have slept longer, had I not been woken by the ring of the telephone! Today, Thursday, was fairly similar, but without the peculiar swimminess.

Fancy A Tipple?

I have just learned about another symptom of Fibromyalgia: thirst.

I had been noticing that I kept feeling thirsty and was drinking more. Mind you, the realisation took a while to register. For some time I have been waking at around 4:00 some mornings and have gotten up because I wanted a drink of some sort before trying to get back to sleep. A sip of water from a glass at the side of the bed just wasn’t going to hack it. I would go downstairs and make myself a cup of coffee then thoroughly enjoy drinking it. Usually I would sleep again after having that drink.

Actually, just typing the last paragraph has just made me realise the significance of the late-night coffee that I have been drinking regularly before retiring to bed. Surprisingly, the coffee doesn’t keep me awake!

In addition to these extra cups of coffee, I have also been drinking more cold drinks during the day. In fact, I have noticed that sometimes during a meal I can drink two or three glasses of water.

I hadn’t realised the significance of the increased amount that I have been drinking until one day last week when I received the latest newsletter from . There was a link to a by Plymouth University which is investigating whether there is a biological cause of Fibromyalgia. One of the questions in the survey asked about being thirsty: that was when my increased (non-alcoholic!) drinking made sense.

Isn’t it strange how we happen upon information? Even though I am not actively seeking information about Fibro, it seems determined to find me!