That’s Just The Way It Is

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Around St. Mary’s Cathedral, Sydney, July/August 2013

(Do you know, it takes me longer to find and decide upon the photograph for each post than to write the post?)

The weather has been very hot for the past couple of weeks and I am very fed up with it. Mind you, the people who are or have been closest to me would be amazed at how well I have coped with it. Believe me, hot weather and Bossymamma is not a good combination! I have always told people that my sons knew not to annoy me on a hot day because I was likely to explode at them. In fact, my Big Boy alluded to that, in a lighthearted way, when he and his family visited at the weekend. As for my Little Boy, he is probably dreading my impending visit!

I don’t know whether it is my advancing years, the Fibromyalgia, or a mixture of the two, but I seem to be coping with the heat far better than previously. I can’t begin to explain adequately how awful the heat usually makes me feel: it sucks every vestige of energy from me and makes me feel lousy. Actually, I don’t want to explain it, because of how dreadfully it affects me, so that is all I shall say about that.

To get back to the present, the heat seems to have triggered a major flare-up of the Fibro-related foot pain. It is particularly bad in my heels and often makes walking more difficult and more painful. The situation is made worse by the swelling in my feet, which I suffer in hot weather. I do take medication to reduce the swelling and I sit with my feet raised, whenever I can, but none of that helps enough. In fact, the pain has begun to manifest in my legs, in the three or four inches above my ankles. ‘Snot fair! Don’t like sore feet! Actually, the pain has been so intense, at times, that it has made me yelp. It used to be that the foot pain was at its worst soon after I retired to bed, but that is no longer the case. I think it is equally bad in or out of bed, at the moment. Sometimes it seems to be worse when I am in bed, but I don’t know if that is because there is less to distract me from it when I’m lying there. Whichever way you look at it, the foot pain is being very unpleasant at the moment.

Fatigue has also been problematic over the past couple of weeks. Obviously, it is impossible to know how much is attributable to the heat but, regardless of the cause, it has been challenging. Generally, when the fatigue is playing up, I can gauge when I have enough energy to deal with a task. However, that hasn’t been the case during this heatwave. When I have rested, I get up and start on the task I have set myself, only to find that my body can scarcely manage to move. There have been numerous times, recently, when my energy has simply evaporated. At those times, the lack of energy, the exhaustion, the fatigue, or whatever you want to call it, has been painful. I don’t mean that it causes pain but, rather, that it is the fatigue itself is painful. It has been difficult to cope with. I am used to my energy disappearing – I would say “disappearing in a puff of smoke” but there generally isn’t enough oomphf for it to manage doing that! – but the last couple of weeks have been a whole new ballgame. And, rather like the Football World Cup, I wish it wasn’t happening!

Amongst all this doom and gloom there is a metaphorical ray of sunshine: I have been granted a Blue Disabled Parking Badge! I can’t tell you how relieved I am. The whole application process caused me much anxiety. I knew that the state I am in should mean I am entitled to a Badge, but the process has been a challenge. I was so fearful of my application being rejected. My ability to go out and about has been severely limited because of the fatigue and the problems I have with walking, but I worried a lot about how well I would be able to put that across when making the application. It shouldn’t be like that and it makes me quite angry that disabled are put in that position.

When I was working, my job entailed completing all sorts of application forms for clients (I refuse to call people ‘service users’!). I had a very good success rate for Disability Living Allowance and Attendance Allowance claims as I knew how to put across the difficulties people had in a way that showed their entitlement. However, it’s a completely different matter when applying for something on one’s own behalf, as opposed to someone else’s. I suppose it’s because it is oneself who is affected by the results. When completing a form for someone else, it is very much easier to be objective than when applying for yourself. Even so, I think the ‘system’ makes things unnecessarily difficult for disabled people. During everyday life, people (whether able-bodied or disabled) look at ways that they can manage to do a particular thing but, when faced with something that requires proof of ability, or lack thereof, they have to ‘un’ think their solutions and focus on their difficulties. That is not easy. It may have taken years, with several increasingly complex ways of adapting their method to enable them to carry out that particular task. Not only is it difficult to think back and remember the difficulties you’ve had doing something, it’s also very depressing. You’re faced with the knowledge that there are lots of things you can’t do in the ‘normal’ way. Applying for any additional help is a gruelling task and one that it is not undertaken lightly.

Having clawed my way up onto my soapbox, I will now crawl down the least precarious route to tell you of one other thing that has happened since my last post.

Whilst sitting in the waiting room at the Amazing Dr. A’s surgery, prior to my appointment with him, I noticed a leaflet about something called the Staying Well Team. Upon reading said leaflet, I discovered that the team is there to help people with things to make their day-to-day lives easier or simpler. As my day-to-day life has changed so much recently, I decided I would give them a call. A lovely lady called Dawn explained that their main target age-group is the over 65s. However, in view of my difficulties, she said she would visit me to see if they could do anything to help. The visit went very well and she made several suggestions, most of which I thought were excellent. She is going to return with an Occupational Therapist with a view to my having a grab handle to help me cope with the step up to our side door, an extra bannister on the stairs and a folding seat in the shower. All of those will be wonderful as I am struggling in those three areas. She also offered me a toilet frame. hm. Not impressed. Really don’t want a toilet frame. Don’t like toilet frames. They make me think of people who are frail and about to ‘pop off’. They really are for Disabled People. And, yeuch, all those millions of corners which would fill up with nasty germy things – revolting! I am not at all houseproud, but toilet frames seem like really dirty, disgusting things. (Oh, crikey. What will I do if I reach the stage where I have to have one?) I was gratified that FPR was happy to have the equipment installed, as this house belongs to solely to him. I was also pleasantly surprised to hear that the equipment will not cost us anything.

Dawn also had questions and suggestions about social activities and said she will send me some information with my Well Being Plan. I emailed her after our meeting to ask about nail clipping services (as I don’t really want to pay £28.00 a time to a podiatrist to cut my nails!) and she has said she will include that information, too. Apparently the aim of the team is to delay the need for social care intervention. Whether that will be result  case remains to be seen but, so far, what the team provides is looking good. Watch this space!

 

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It Was A Cold, Dark Midwinter Night…

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A cold, dark midwinter night

Actually, no, it wasn’t, it was a warm, clammy, near midsummer night, but you get what I mean.

As I type this, it is Sunday morning and the clock reads 02:13. I have just sat down with a cup of coffee and a chocolate caramel biscuit. I got up 10 minutes ago, having retired at 9.00 o’clock last night because I was so tired it was almost literally painful. Just a few hours earlier, FPR had commented on the fact that I had been more awake than on the previous two days. S*d’s Law has had a very busy week, this week.

I had my assessment for a Blue Disabled Parking Badge on Wednesday of this past week. I had been anxious leading up to the day of the assessment but adrenaline saw me through – probably too well. The Occupational Therapist I saw informed me that it will take about 14 days for the matrix to calculate whether or not I am entitled to a Badge.

I was a bit tired for the rest of the day, but not overly so: I suspect the adrenaline was still working its magic. However, Thursday and Friday were completely written off. In fact, on Thursday, I could barely keep my eyes open. I was so fatigued it was making me nauseous. I managed to crawl into bed at 8.30pm – and I mean ‘crawl’. The thought of having to climb the stairs almost had me in tears. Somehow I made it into bed whereupon I slept. In fact, apart from a ‘comfort’ visit, I didn’t wake until late.

Friday wasn’t quite as bad, but I wasn’t able to do much. I did manage to do a little food shopping and a few rows of knitting, but that was about it. Oh, and I stayed up late. When I say ‘late’, I mean later than the previous night!

On Saturday, I had an appointment with the chiropodist. I have reached the point where I am too stiff to be able to cut my toenails. I don’t want to ask FPR to do them for various reasons, not the least of which is his eyesight. I don’t want to say he is myopic because of the connotations of that word, but he does have very short sight. Anyway, I digress. I attended the appointment and returned home. I spent the day awake but doing little, apart from arranging my forthcoming journey to see my baby son and his partner. I didn’t feel particularly fatigued, but neither did I feel like doing much. After dinner, I knitted just three rows of a very small item that I have on my needles before becoming exhausted. I sat quietly, becoming more tired and feeling more unwell until I managed to make the decision to go to bed. [NB I have worded that sentence like that deliberately as it’s how it happened. It took an inordinate amount of mental energy to actually realise and then decide that I had to go to bed.]

S*d’s Law was also at work earlier in the week. Last Sunday evening I had planned to meet a friend at a film screening in Longsight and to give another friend a lift home afterwards. I had dovetailed my entire weekend to give me the best possible chance of not having to cancel and everything was going well… Then our next-door neighbours’ daughter decided to play with her karaoke machine: outside, about 15 feet from our living room window, from around 3.00pm to 7.00pm – when I needed to sleep! I could have cried. I hadn’t expected that I would need to sleep, although, when I realised that I did need to, I didn’t perceive it as a particular problem as I had plenty of time. However, given that the ‘performance’ had started and then continued until 7.00pm, it completely scuppered any chance I had of going out, as I needed to leave soon after 6.00. I was sorely disappointed, especially as it meant letting down two friends. I am so very lucky to have understanding friends but it doesn’t stop me feeling embarrassed and ashamed at having to let them down.

S*d’s Law and Fibromyalgia (and, of course ME/CFS, if I do have it) have a lot to answer for!

 

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.

 

 

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!

 

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 Lesson On Flatware

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North Cape at Midnight. June 2012

*News Update*

There is a problem with the Spoon Theory.

It’s a very useful analogy for the fatigue associated with Fibromyalgia but it doesn’t always work well. Sometimes there’s not as much result for each spoon as at other times.

I find that when I have fatigue, its effect on me varies. For example, sometimes I simply feel exhausted, whereas at other times I feel diabolically awful. The second type is what I’ve been feeling recently. It comes on after expending very little effort. Things I can do on “ordinary” fatigue days are far more draining on the “worse” fatigue days. It’s difficult to use spoons wisely when they have different values on the various types of fatigue days. This week, going upstairs has taken a huge amount of effort: I’ve really had to drag myself up, hanging on to the bannister. Actually, even rising from a chair has been a major undertaking. I have had to lean heavily on both arms, pushing on something solid, to get up out of a chair. Every time I moved it felt as though I had a second skin made of lead, and it took an awful lot of dragging around. Any tasks that I needed to carry out had to be broken down into minute sections to give me any chance of achieving them. Even going to the loo needed planning! We have a toilet on the ground floor which is accessed through the kitchen and utility room. I don’t normally use it, preferring to go upstairs to the bathroom. However, this week, upstairs has not been a viable option as I just haven’t had the strength to drag myself  there. Consequently, I’ve been taking the scenic route through our ground floor rooms. Given the proximity to, and the fact that one has to walk through, the kitchen, I would often stop and make coffee for FPR and me. Not much chance of that this week! It was a miracle if I managed to put water in the kettle and switch it on, let alone carry out all the elements involved in turning water into coffee. It really is difficult to comprehend, let alone explain to another, how much effort is needed to do ordinary, everyday things like brushing one’s teeth or getting dressed, when one is afflicted by the diabolically awful version of fatigue. Consequently, the spoon theory has its difficulties. I might need one spoon on Monday to attend to my ablutions and get dressed, but on Tuesday it might take two, or even three spoons to carry out those same tasks.

 

This week, everything has used at least twice as many spoons as usual, often three times as many. Just a basic knowledge of arithmetic is all you need to see that it is virtually impossible to carry out the most basic tasks when the spoons are being used up so quickly. And, unfortunately, you can’t just go to the nearest petrol station to fill up, like you can with a car. No, you have to stop and rest – and not just for a few minutes. This past week or so, I’ve been having to rest for at least an hour, but usually considerably longer, to build up enough reserves of energy to carry out the next minor task. Something along the lines of go to the loo, spend hours recovering, need the loo, go to the loo etc. Repeat ad nauseam. Leave spoons in the kitchen on your way through.

 

I’ve Had A Little Chat…

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The Library in Tromsø, Norway

This week I had a chat with the wonderful Dr A. I told him about the new symptoms that I am having and said that I was wondering I may have Chronic Fatigue Syndrome (CFS) as well as Fibromyalgia. He agreed that, in the light of the recurrent sore throat and swollen glands, it is likely that I have both conditions as they are often found in the same patient. We discussed the possibility of my taking medication but, as Pregabalin and Gabapentin are both primarily prescribed for pain, I said I would still rather hold them in reserve, for the time being. I know that I can change my mind at any time, which is reassuring. At the moment, I can cope with the pain and discomfort that I am having so it makes sense to hold those two big boys in reserve for when the pain starts firing on all cylinders.

I’m not sure how I feel about the dual diagnosis. On the one hand, I am disappointed to have CFS but, on the other hand, it isn’t a surprise, particularly in view of how troublesome the fatigue is being. Even with all the recent developments in my condition(s), I am still very fortunate. As I said above, I am coping with the pain whereas so many Fibro warriors are often floored by it. As usual, it’s the fatigue that pulls the rug out from under me. This week has been difficult as it seems that anything and everything that I do brings on the fatigue. It’s not just that I am weary and exhausted but that I feel so unwell with it. ‘Snot fair!

 

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.

Hello? I’m Afraid I Can’t…

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Photograph taken by me. Location unknown.

Those closest to me will be familiar with the phrase that I have used for the title of this post. Unfortunately I am having to say it to more people and on more occasions that I would like. And I don’t like it! Not one bit!

I very well know that I am not the most reliable of people, I am certainly notorious for not being on time – some may even say ‘late’! However, as my journey along the route known as Fibromyalgia continues and becomes more challenging, it becomes ever more difficult to stick to arrangements that have been made. Frustratingly, cancellation is an ever more frequent event. Just last night, FPR and I were in our coats, ready to leave his mother’s house, when I had to take off mine off, lie down on the sofa and try to sleep. That most unwelcome guest, Monsieur F.A. Tigué, suddenly popped up out of nowhere. So inconsiderate! Wouldn’t you think that, seeing FPR and me with our shoes and coats on and hearing us making our farewells, that Monsieur F.A. Tigué would keep his nose out and let us get on with it? Oh, no! Hmph! In he runs, bold as brass, wielding his slow-motion. Double hmph!

As if that wasn’t sufficiently annoying, this very afternoon, that irritating old codger decided to call in at our home. Grrr. I went upstairs to get ready. (I had arranged to go to meet a new friend before leaving to meet another friend for a film showing.) I didn’t notice anything in particular as I mounted the stairs but it was hiding behind the bathroom door and jumped on me as I entered. Grrr, hmph and stink bombs. Actually, it wasn’t Monsieur F.A. Tigué but his younger brother, Exhaustion-Related Back Pain. They are not a nice family, you know. If I were you, I would steer well clear of them. Each of them has a particularly nasty mean streak.

One of the Fibro symptoms that I get is back pain in the thoracic area of my spine. Sometimes it occurs at the same time as mirror-image chest pain. At other times, the onset of the back pain is a warning that exhaustion is about to knock me for six. There is a different feel to these two types of back pain, so I can normally recognise which is coming to visit. When it’s the Exhaustion-Related Back Pain I know that within a very few minutes I will be laid low by both back pain and exhaustion. Exhaustion rather than fatigue. And so it was, this afternoon.

It was so disappointing. Apart from being disappointed for myself, it meant I had to let down the two friends plus the person who was arranging the showing of the film. It’s at times like these that I get really fed up with the Fibro. I don’t want to disappoint people. It makes me feel pathetic that I am laid low in this way, but I know that it would be dangerous for me to attempt to drive when I am exhausted or fatigued. One positive thing that does come from times like these is that I am reminded of how very lucky I am in that I have friends who care and understand when I have to cancel: friends who know that any time we make arrangements, there is a considerable risk of me having to cancel, but they are still prepared to take the chance on me.

So, to all of my family and friends I would like to say thank you for still wanting to inlude me in excusions and arrangements and for not giving me a hard time when I have to cancel. I really do appreciate it. Please, let’s keep trying because it’s good fun when I don’t have to cancel.

Mountaineering, anyone?

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Tierra del Fuego, 2014

As a child, I loved mountains. I had never actually seen one, in real life, but I loved them. My dream was to visit Switzerland, the land of mountains. In my very limited knowledge of the world and its geography, Switzerland = the Alps, ergo Switzerland was the place to go to see mountains. In fact, I so loved mountains that my mother and my grandmother each gave me a framed picture of mountains for a birthday or Christmas. I still love mountains. When I say ‘mountains’, the picture in my mind is of high, rocky places, bare of vegetation, with steep, jagged profiles with some covering of snow and/or ice – the amount of snow and ice is unimportant. I love to gaze upon mountains: they have such a powerful presence which I find oddly fascinating and calming. I can be easily  mesmerised by them, by photographs of them. Uluru, previously known as Ayers Rock, has a similar effect. I don’t have much of a ‘bucket list’ but Uluru is most definitely at the top of it!

FPR has climbed quite a few mountains around the world. He’s thrown himself off one or two, as well. He doesn’t understand that I can be fascinated by mountains but not interested in climbing them. I think my lack of desire to climb them may be because I wouldn’t be able to see the mountain while I was climbing it – well, apart from the bit around where I was standing or climbing. I would be too close. I love the majesty of the mountain. However, that is changing somewhat.

I still love mountains and now, at my greatly advanced age (well, in the eyes of my two loving sons!) I am finally taking up moutaineering. It is a particular type of climbing that I am indulging in but, actually, it isn’t through choice. With any mountain there are several choices of how to move past it: go up it, go round it, go through it or, fly over it. Hmm… Yes… Well… That’s true of mountains like Everest, Aconcagua, the Matterhorn and so on, BUT… when the mountain is a set of high, steep steps those choices don’t apply. The single option, if you want or need to access the paradise which is only accessible by those same steps, is to go up them.

That’s where the mountaineering begins.

I have noticed in the past two or three weeks that my Fibro is changing considerably. My entire body has stiffened so much and become incredibly weak. I have never been physically strong or powerful. In fact, my baby son has teased for years because my wrists and hands are so weak! However, the weakness in my body has become very much more pronounced during these past few weeks. When I mount the stairs, at home, I have to pull myself up using the bannister. It is quite a nuisance as, if I was carrying anything upstairs I would hold it in my left hand, but I now need to hold our only bannister with that hand. I am finding that I can barely manage to carry the laundry basket upstairs because of the way I hold it. I need to find a new position or technique to hold it.

Returning to the mountaineering, last week I had to ascend and descend the same set of three (or four) very deep steps several times. It was quite a challenge. I do not use any mobility aids and there was no rail to hold onto so it really was like being faced with a mountain. When I first saw them, I froze. How on earth was I going to get up them? It’s not just the amount of energy that is needed, but also the way my balance is affecting me, plus the weakness and the stiffness of my body.  The steps were not particularly user-friendly. There wasn’t much depth, from front to back, to place one’s foot: the depth was in the risers. I think they would be challenging for many people. Oh, my goodness. I really wished I had had a walking stick with me. In fact, I am thinking that it might be wise to keep a walking stick in the car – just in case. Oh dear, I am feeling decidedly old and decrepit – definitely not like a mountaineer!