Old Wives’ Tales

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Sydney Opera House from The Rocks

We’ve probably all heard an old wives’ tale or two, haven’t we? Do you remember, as a child, pulling a face only for your mother to say “you should be careful or the wind will change and your face will stay like that”? I must admit, I have never seen anyone whose face did actually stay like it!

I remember, many years ago, hearing or reading that each of us is most awake and active at the time of day when we were born. I can’t remember whether it was from a printed article, a TV or radio broadcast, or whether someone said it to me. I have no idea whether the idea has been looked at scientifically but I tend to think of it as a bit of an old wives tale. Anyway, that little gem found its own nook or cranny in my brain and slept there for years, just occasionally waking up and giving my mind a little nudge, before dozing off again.

This week, my pet snippet decided to poke its tiny head out. Just a quick “hello”, you understand.

I was born in the middle of the night, 3.10am actually, and there have been plenty of periods when I have been quite a night owl. The first such period I remember was when I was at primary school: for several weeks I would wake somewhere around 2.30 or 3.00am. I was wide awake and would go downstairs. I would get myself something to drink, and possibly a snack, then settle down comfortably in an armchair and read the daily paper. I remember my mother coming downstairs the first time this occurred, and asking me what I was doing. I simply said that I had woken up and was wide awake so had decided to sit downstairs and read the paper. As I wrote that it sounded rather precocious but it wasn’t meant to be: I was just answering her question. Well, she accepted that answer and went back to bed. And, just like that, the whole family accepted that I got up for a couple of hours during the night. As I said above, it went on for several weeks.

At various times in my life, I have gone through these periods of early morning activity. It may be more accurate to say that they happen in the middle of the night. As a teenager, one of my jobs at home was to do the ironing. My favourite time to do it was immediately after I had been out on a Saturday night. I would return home at something like midnight or 1.00am, entering through one of the bars in the pub we lived in. I would say ‘hi’ to everyone who was at that night’s lock-in, then go through to the living quarters and do the ironing. I would have the radio blasting out (we were well away from any houses) whilst ironing clothes, with the back door wide open. As I look back, I realise how unwise it was to have the back door, not just unlocked, but flung open. Ah, the folly of youth! Oh well, I wasn’t confronted by burglars, nor did I suffer anything worse than a few moths coming in because of the light. Obviously Fate didn’t feel very tempted by my actions!

Since retiring from work early, I have often noticed that I don’t feel like going to sleep at a ‘normal’ time. However, I don’t necessarily heed that inner voice but do go to bed at a reasonable time. Not this week, though. I began the week with a few days of moderate fatigue. After a couple of days I realised that, as the day turned to evening, the fatigue would begin to lift slowly. This meant that by late evening I was feeling I had some energy that could be used. I have been known to do vacuuming when I feel like this late at night – not this week, though. I am in the middle of a huge sorting and decluttering job so expended the energy on that task. (When I say ‘energy’ it is a relative term. Don’t imagine I am leaping about because you would be sorely disappointed at the reality!)

It is not easy to figure out how much of this week’s fatigue and energy peaks and troughs are due to Fibro. At a guess, I would say that they are part-Fibro and part-Old Wive’s Tale.

 

 

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Back To Square One

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Faroe Islands, August 2016

It feels as though I have gone back in time – well, sort of.

Let me to take you back to 2014, before Fibromyalgia had appeared on my horizon. My mother had finally moved into the retirement complex that was her idea of Utopia. Leading up to the move, on the Monday evening she had graciously (hmm, my tongue was firmly in cheek for that particular statement!) granted me special dispensation to begin packing her clothing, shoes and possessions. This was a huge concession on her part as it meant she was going to have to live surrounded by boxes for, oh, three days. Sorry, do I sound bitter?

Come moving day, I organised the removal men whilst trying to finish the packing, clean the flat, deal with all those last minute things that crop up and answer the phone to her, seemingly every 10 minutes. And, it was a stinking hot day. I do not and have never coped well with hot weather. The following fortnight continued to be excessively hot, with wall-to-wall sunshine. I was getting up at 5 o’clock every morning so that I could try to clean the flat properly before the day became even hotter. During the day I would have to take my mother out so that she could buy lots of new stuff for her new home, then, come the evening, I would do more cleaning and unpacking. After two weeks of cleaning, unpacking, sorting and so on, I finished. Phew.

I went home and, within a couple of weeks, was hit by a chest infection. After several weeks of the myriad joys of a chest infection, and almost as many courses of antibiotics, I was still suffering chest pain. I also had pain in the thoracic region of my back, which I had not previously experienced with a chest infection. Not only that, but I was totally exhausted: I was sleeping for hours during the day, as well as through the night. After a month or so, the Amazing Dr. A diagnosed Fibromyalgia.

I spent most of September, October and November asleep. Not dozing in a chair, but asleep lying on the sofa. (I don’t like going to bed during the day unless I really have to.) And, now, I feel as though I am in a time warp as I seem to be sleeping an awful lot of the time. Groooaaaaannnnn. Actually, I probably haven’t been sleeping quite so much as in 2014, but the amount of sleep does seem to be increasing this week. I have been able to do less and less during the past few days.

Not very long ago, I was able to do quite a bit. Even on a bad day I would be knitting, sewing or on the internet during the time that my body needed to rest. Now, however, things have changed. I still knit, but can only do a few rows in any session. I can do a bit of hand sewing, but only for 20 or 30 minutes. But… I now spend quite a while doing nothing (apart, perhaps, from watching trashy television). It’s a sobering reality, how little I can do. I still hope that this level of fatigue is temporary, that this Fibro flare will calm down, but it’s becoming more difficult to believe it.

I am at a stage in life when I should be enjoying myself. I have few responsibilities or obligations and I don’t have to work. I should be seeing, doing and learning new and exciting things, going out with family and friends, living the life I dreamed of. I shouldn’t be falling asleep at the drop of a hat and struggling to make sense of simple things. ‘Snot fair! I don’t like it!

 

You Can Either Laugh Or Cry

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Bossymamma’s ugly feet!

The unpleasant photograph at the head of this post may give you a clue as to the subject of this week’s rant. Yes, I’m going to talk about Fibro Feet but, no, I’m not going to talk about the pain. Instead, I shall share with you the latest pleasure (?) that Fibromyalgia has shared with me.

Actually, and probably unsurprisingly, it isn’t a pleasure. Instead, it’s an absolute bl**dy nuisance! I’m really rather surprised by it and both of my sons will likely think that it is hilarious.

What is it, you ask…

Well, believe it or not, my feet have become very much more ticklish! Yes, I know, it sounds daft, doesn’t it? But it’s true!

My feet have always been ticklish – all my ##years. In fact, for most of my adult life I have been unfortunate enough to be able to tickle my own feet. You thought that wasn’t possible, didn’t you. Well, I’m here to tell you that it’s true: a person can tickle their own feet. Many times I have almost leapt off the bed whilst trying to put on tights because I’ve touched my foot in a certain way. It’s no joke, I can tell you.

And now, it’s even worse! I am really struggling to put on my shoes or slippers. As soon as my foot touches a part of the shoe or slipper, I almost jump out of my skin. As far as I can tell, I’m not doing anything different when putting on or taking off footwear but, my goodness, the reaction of my tootsies would make a liar of me. No more putting shoes on in a hurry and making a quick escape. Oh no! It’s more like one of the Ugly Sisters trying to fit into Cinderella’s glass slipper! Got time to spare? Just watch Bossymamma trying to put her shoes on!

* And in a note to my sons and grandchildren: keep away from my feet!!!

 

Getting Twitchy

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Part of an FPR masterpiece. (It is far better than this photograph shows!)

A new phenomenon has appeared on my Fibromyalgia (and ME/CFS?) journey and it has made me quite twitchy – literally, twitchy.

I have had intermittent bouts of Restless Legs Syndrome (RLS) for some time but now there’s a new kid on the block. Ladies and Gentlemen, please give a huge welcome and a massive ‘hello’ to muscle twitches, tensing of muscles and muscle spasms. I would ask them to take a bow but I don’t want to irritate them.

Involuntarily, the muscles in my body suddenly go tense for a couple of seconds or more, then most, but not all, of them relax. It’s those that don’t relax that have been causing problems. From being simply tensed, they then go into spasm. Yikes! T’ain’t nice! When they spasm the pain makes me yelp. The spasms occur in my calf muscles. When one happens my leg feels sort of paralysed. I don’t just mean that I can’t move the muscle (which, of course, I can’t), but that my lower leg goes numb. I know that sounds contradictory but, whilst I suffer pain from the muscle spasm, all feeling in the remaining part of my lower leg disappears and it just feels dead. I, or sometimes FPR, have to hold and support the calf muscle briefly, which seems to be enough to stimulate the muscle into relaxing – at least, it has up until now.

There doesn’t seem to be any particular stimulus that sets off the whole-body tensing so I don’t know what is best to do to try and avoid it happening. I find the experience rather unsettling which, I suppose, is due to its involuntary nature. Probably that is because it is me lacking the ability to control that action. It can be scary when you know that your body is doing something you have no control over. If I believed in alien beings I might be tempted to posit that my body had been invaded by one – but I don’t, so I won’t. Hmm. Must just be my body being alien, then, mustn’t it?

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!

Downs and Ups

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Some Downs and Ups in Norway

You’ve doubtless heard the saying that what goes up must come down, but the opposite is also true: what goes down must come up. Well, that’s certainly the case when I fall!

Had I mentioned, previously, that falling is my latest hobby? It must be because it keeps happening, with disappointing regularity. I thought I had gotten away with it when FPR and I were in Devon at the beginning of this month, because I didn’t have a fall. I had fallen on our three previous holidays, so you can see why I half expected to take a trip on our latest trip.

It’s OK, no-one needs to worry, the long-awaited fall happened yesterday. Actually, I say no-one needs to worry but I was a little concerned because I wasn’t even walking when I went down. What happened was that my balance went and I dropped like a stone: flat on my back. It’s a funny thing, whenever I take a tumble, I don’t put my hands out to break my fall. That’s not a new thing. I remember a couple of falls which happened more than 15 years ago and, even then, I didn’t try to break my fall by putting out my hands. Hmmm. Weird.

Anyway, returning to yesterday’s gymnastics…

Luckily, FPR was with me and, even better, he didn’t immediately try to help me up. It is something that he and I have discussed: how, when someone falls, the automatic instinct of well-meaning people is to try to pick them up straight away. It is so kind of people to want to help but… please don’t rush to get someone up. For a start, when someone takes a tumble, they (I’m saying ‘they’ because I don’t want to muck about with her/him, s/he or any other description) need a few moments to gather themselves. I know that when I throw myself on the ground unexpectedly, it’s a bit of a surprise, or even a shock, and it winds me, both physically and metaphorically – and it takes a few moments to recover from that, apart from anything else. It also takes a bit of time to figure out what hurts and whether anything might be broken.

OK, so then we get to the interesting bit: getting oneself upright again.

This is not straightforward when one has a disability. One’s ability varies from day to day. Some days I can definitely manage far better than on other days. It means that I am likely to have to try different ways of getting up. Now, I have to say that FPR is very good when I am trying to right myself: he doesn’t try to get me up the way he thinks I should. Instead, he listens to what I say I need to try. I’m sure it must be very frustrating for him when I don’t try something that I have done on other occasions, but he takes it very well – for which I am grateful. Not only does he listen, but he does the things I ask, in the way I need.

Yesterday, a young woman rushed over to us and helped. She was very considerate, certainly helpful, and kind. She even offered to give me a lift home. It was lovely that she came over, also that she listened and acted on what was needed. What none of us realised was what would happen when I was almost upright: my balance went again and I narrowly avoided landing on the deck for a second time!

On our way home, I told that FPR that I shall have to ensure I have a walking stick with me when I go out. I don’t have a limp, it’s to help me keep my balance. I also said that, when I am getting up from a fall, I need him to hold my arm so that I don’t lose my balance again.

You know, the problems with my walking are disappointing and have brought all sorts of things to mind. However, I hope that I will manage to retain my sense of humour. After all, if I don’t laugh, I might end up crying – and I don’t really want to do that.

 

Breaking Down And Building Up

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Mind the Polar Bears! Spitsbergen, August 2017

Things have changed this week.

FPR and I have been on another holiday – a five-day coach trip to Devon. Yes, it was very soon after our recent cruise but we just felt like going. Once we were there things looked slightly different.

Now, if you were to ask my baby son, he would tell you that I am a pessimist and, to a certain extent, he would be right. However, like many people with a chronic condition, when it comes to thinking about how much I can do, it’s a very different story: I am definitely grossly over-optimistic. That, of course, was what happened when FPR and I discussed taking this short break. I completely over-estimated how much I would be able to do during the holiday. I don’t see that as an altogether bad thing as it means I haven’t completely lost hope, but I realise that for FPR it is likely to be frustrating.

One thing that I have realised during the two holidays is that I really do need to have a look at how I live my life and what changes it would be wise to make. So, that is what I have started doing. Already! We arrived home on Friday evening and I started changing things this morning (Sunday). Pretty good going, huh?

During the time since I finished working, craft activities have taken up a large proportion of my time. I love to make things and I love to give the things I make to others, especially if the items could help them. Consequently I have huge amounts of crafting materials stashed in various places around our home. I have particularly large amounts of fabric and knitting yarn. I need to pass some of those materials to other people who can use them as I simply cannot do anywhere near as much crafting now as I was able to do a couple of years ago. Consequently, I am having to break down the life I was living and the activities I enjoyed doing and rebuild them into manageable pieces that I can cope with. As I mentioned above, I have begun that process today. I have sorted some of my fabric lengths and decided to donate several of them in a particular direction. Much of the stuff that I have was given to me to use for charitable purposes so, obviously, I must be mindful of that when deciding who I should give to. I think this process is going to take some time but I think it will be time well spent. At the end of it, I hope to be able to concentrate on using my energy on projects that give me a different kind of joy to that which I am used to experiencing through my crafting. In some ways, what I am working towards could be seen as quite selfish, but I feel that it is what I need to do to help me during these changing times. I need to find my new ‘normal’.

Quick Step, Anyone?

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My late mother, who was a lifelong dance-a-holic

I’m assuming that you are familiar with the “slow, slow, quick, quick, slow” of the ballroom dance called the Quick Step. Those instructions comprise one of my strongest memories of my childhood. My sister and I used to go to ballroom dancing lessons every week in a small hotel which had its own modestly-sized ballroom.

There’s not much chance of me doing the Quick Step at the moment. I’d be fine at the “slow” but the “quick” would be more of a problem. Well, I say a problem but, really, it would be missing completely. As you might guess, fatigue is being an absolute pain in the proverbial. Whilst we were on holiday I was pretty sure I would be hit by the post-adrenaline crash when we reached home. However, surprisingly, it didn’t quite happen like that. We arrived home last Saturday evening, and I was feeling just the usual weariness that comes after a long journey. On Sunday, I was a little tired, but nothing too awful. Come Monday morning, though, it was an entirely different story.

I was up and dressed at a reasonable hour (nowadays I often don’t dress until late morning). I was planning to go to meet a couple of friends, although I really didn’t feel much like it. I was very relieved to receive a text message from E saying that J was away and that if I still wanted to meet, she would get ready and see me half an hour later than originally planned. It gave me the perfect excuse to withdraw. That was important to me because I so often feel that I am letting them down when I have to cancel arrangements.

Rather than having a protracted text conversation I rang E to chat. Within a few minutes of ending the call I went to sleep… for several hours! And it feels as though I have been sleeping ever since.

I think this may have been my worst week of fatigue during my whole Fibro (and now also CFS) journey. I sleep for an hour or so after my first cup of coffee in the morning. When I waken I attend to a small task downstairs, planning to wash and dress immediately after, but the task wears me out and I collapse in a heap in the chair. Cue more sleep. I wake again and go upstairs (a huge effort, in itself) and force myself to deal with another small task in addition to washing and dressing. Fatigue rears its ugly head again so that I am feeling dreadful by the time I get downstairs. Oh, good, there’s my chair: I can collapse in another heap. Oh! I’ve fallen asleep again!

I think you get the picture.

There are things that I wanted to do this week and I haven’t managed any that needed me to be outside of the house. FPR and I went to see his mother one day but that was a mammoth struggle which took its toll the following day.

It has been difficult during the past few weeks to keep any sense of humour about things but I’m hoping that it will return soon. In the meantime, I have realised that I need to have a serious think about adapting the way I live my life to cope with the restrictions that fatigue is forcing upon me. It will have to include the craft activities that I do and may well mean some serious stash-busting will have to take place. I wonder where I can find some energy to deal with that? Ideas on a postcard, please.

 

 

A Change Is As Good…

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Transiting the Kiel Canal. 19 April 2018

FPR and I yesterday returned from a little holiday to the southern Baltic. We were on a cruise with a cruise line that we have travelled with several times. Due to my state of health, amongst other things, we had to change our plans for various parts of the trip. Initially I had been going to drive us to Essex (the ship was departing from Tilbury), parking my car at the new home of my Baby Son and his partner. However it became clear that for me to drive that distance would be very challenging so we decided to travel to Tilbury via public transport. And that’s where the problems began!

Access to the coach which was to take us to London was via a set of very steep steps. I had been finding walking increasingly difficult and labour intensive, during the days leading up to the holiday. Consequently, when I tried to board the coach, I could barely lift my foot off the ground, let alone pull myself up the steps. Eventually, with help, I managed to get up the steps but the incident shocked and disappointed me.

Over the next couple of days I struggled on. I was finding it challenging to walk aboard ship. My balance was shot to pieces, I had quite a bit of pain and I felt as though I had lost the ability to walk properly. It was all rather unnerving.

Last Sunday, FPR and I went ashore to explore the town where the ship had docked. The difficulties with walking still persisted and fatigue was being troublesome. I was resting at one end of the town square when FPR beckoned me. I set off at my snail’s pace but disaster struck. With FPR something like 80 or 100 yards ahead, I tripped and fell, bumping my head in the process. Luckily there were four passengers from our ship who witnessed my fall and rushed over to help, for which I was and am very grateful. I was not badly injured: just an interesting lump on my temple, followed by a bruise featuring some rather exotic colours!

The fall made me realise something very important which is to use a walking stick on days when walking is a problem. Certainly, after that day, if I went ashore at all, I used the walking stick that I had taken on holiday with me and it made walking, and keeping my balance, much easier. I didn’t use the stick on the ship as I seemed to be managing fairl well. However, I did use it whenever I went ashore.

You never know, I may even manage to use the stick now that I am home…

Watch this space.

 

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.