There May Be Troubles Ahead,

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An eye-catching sculpture seen on one of our holidays

There may be troubles ahead,

But while there’s music and love and romance,

Let’s face the music and dance.

 

Apologies but there is nothing I can say, at the moment.

** Normal service will be resumed when I have access to decent wifi. **

 

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A Mountainous Landscape

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Artist’s Trading Card designed and made by me.

Phew! What a week I’ve had.

I apologise here and now that this post is not specifically about Fibromyalgia and my experiences of it. I am at a point where the Fibromyalgia has merged with other aspects of my health and wellbeing to such an extent that I am no longer able to distinguish between my symptoms and experience of Fibro, and those associated with other conditions. The two are inextricably linked. The Fibro feeds off my general condition and deterioration. At the moment, it’s looking increasingly unlikely that I will be able to deal with each aspect as a discrete entity. That may not be an entirely bad thing as it is probably frequently the case that one condition affects or is affected by another, so it’s simply the case that my story has moved on. For the time being, at least, I shall continue with this diary.

The title of this post describes how life has felt during this past week. There have been highs and lows, and some of those lows have been preceded by very rapid descents from the mountains into treacherous crevasses. However, I am pleased, not to say relieved, to report that the crevasses have not held me trapped in their grasp for long, thank goodness.

During the past week, I have been unable to manage going up our stairs so have had to sleep on the sofa. That development, which I had initially thought would be only temporary, has been hugely disappointing. Its effect has been to cut me off from half of my home. I have to rely on FPR to fetch and carry for me. I also have to rely on my memory to be able to precisely describe what I need, or want, and its exact location. That hasn’t been too difficult, but I am sure that situation will change as time passes. Yes, I know where my jumpers are, at the moment, but when FPR puts away clean laundry, how will I know where he has put it?  How will I peruse my books to see what I feel like reading? And, what about my craft stuff? How do I explain the things I need for a project I want to work on? And all that glosses over the fact that I am not able to have a shower. T’ain’t fun and s’not fair!

Yesterday I had a range of tests to determine whether, and how, my nerves and muscles have been affected by the deterioration in my mobility and to attempt to establish the cause. Obviously, I have to wait for a copy of the report, but the neurophysiologist was able to tell me that I have nerve damage in both my legs. The position, vis-a-vis my arms, is less clear, at the moment. He promised that he will consider my results and discuss my case with the neurological consultant to whose team my case has been allocated. The tests I had weren’t particularly uncomfortable, except for a couple of short periods, and my contrary nature quite enjoyed the parts where I had to push against his hand. There was an amusing moment a few minutes before he finished carrying out tests. He had told me that he would be finished in five minutes but, after he had completed the tests on my left arm, he said he would like to do some tests on my neck and asked me if that would be OK? I was perfectly happy for him to do the extra tests and was highly amused by the almost Dracula-like look that had crossed his face as he asked me. He was rather nonplussed when I laughingly told him!

So, the week and its events have been emotionally challenging and culminated in my having a brief burst of temper, accompanied by some choice trooper-like language. That moment soon passed and I managed to recover my equilibrium. For now, I just have to keep on waiting for my appointment with the neurologist on 12 November. Easy, huh?

 

The Best Laid Plans…

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Kristiansund, Norway. 03 August 2017

My Big Girl Pants went AWOL. I was all set to go on my little expedition, but my body had other ideas. Periodically, my left foot slips over onto the outside edge, making it very difficult and painful to walk. When it happens, I can barely drag myself along as it sends my balance mechanism into freefall. And, of course, it happened last Monday. Grrr. The people I was going to be seeing and who had offered to help me have not seen how I have deteriorated over the past few weeks. My friend, Kath, has some idea of my deterioration but it is several weeks since I last saw her so she would have seen a vast difference. In view of all of that, I decided that I could not go out on Monday evening. It is hard enough for FPR to cope with me when things are that bad, I certainly couldn’t expect anyone else to, especially when they had no idea just how much help I was going to need. In addition to that, fatigue reared its ugly head – probably because of the tremendous effort I needed to make to walk.

Those two things, the awful gait and fatigue, have pretty much made up the story of this week.

On Wednesday, I decided to give in and buy a four-wheeled walker or rollator, with a seat incorporated in it. I had been trying to hold out until I see the neurologist in November but things were getting so bad vis-a-vis walking that I changed my mind. FPR has been finding it hard to help me, which is completely understandable. I move so dreadfully slowly that he can’t help getting ahead of me. The problem is that, when he moves slightly ahead, I feel as though I am being dragged along and am terrified that I will fall. Please don’t think that I am putting any blame on him, that is not my intention, at all. It is very difficult to slow one’s walking down to the snail’s pace that is all I can manage. I have to say, all of these problems are giving me heightened insight into the problems my mother had, particularly towards the end of her life. So, anyway, I bought myself a walker, which I used just a few minutes after we got it out of the shop.

We went to Bury to buy the walker and, whilst in town, we went to another store. Two shops on one day! I can’t remember the last time I managed that.

For the rest of the week, I continued to have problems with walking which have gotten progressively worse. By Saturday, I was unable to go upstairs so I had to spend the night on the sofa. That is not ideal as, most of the time, I cannot get myself up off it. And it’s looking as though I shall have to sleep downstairs again tonight. My world is shrinking fast. And I don’t like it. At times like this, it’s difficult to keep positive about possible outcomes from my forthcoming neurology appointment. Also, the thought of all the upheaval if I have to sleep downstairs for any length of time, is just too much to contemplate, at the moment.

 

It’s Time for my Big Girl Pants

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Antarctica, 11 December 2014

Tomorrow I am planning to go out. On my own. I’m going to a place in Longsight that I have been to many times before. I shall drive my Lovely New Car and, en route, I shall collect my friend, whom I have taken on this journey before. We may well have a lighthearted language lesson in the car, which we have done before. When we arrive in Longsight I will need to get a parking permit to display in my windscreen. It is all familiar. I am used to doing all of those things. There’s nothing scary about any of those things. I’ve done them all before. Hah! It’s a piece of cake!

Except…

It isn’t.

A piece of cake, that is.

It’s time for Big Girl pants.

Why?

Because I’m going out on my own. That’s why.

I haven’t been out on my own since my walking deteriorated to the snail’s pace that it is today. I haven’t been out on my own since long before my last fall. I haven’t been out on my own since before I stopped being able to drive my Alfa Romeo.

And now, I’m going out on my own…

And it is scary, with a capital ‘S’.

Yes, I know I am picking up a friend and taking her with me, but it’s not the same as having FPR with me. He helps me, lets me take his arm, holds my walking stick while I’m getting into or out of the car, fetches a trolley at the supermarket so that I can lean on it and a million and one other things. He helps to make sure I am safe.

And tomorrow, I am going out without him.

I have planned, as best I can, to cover my needs and three people have offered to help me when I arrive at Longsight. None of those people, however, have seen me in the pathetic state that I now find myself. They have no idea how much effort it takes me to walk more than a few steps, especially if my left foot is deciding to be naughty, or just how long it takes me to put one foot in front of the other. Not only does my body not want to play, but my mind has joined in. I have totally lost confidence in my ability to walk. I desperately want to use a wheeled walker, or better still, a wheelchair, but I don’t dare give in because, if I do, I might lose what little ability I have. And if that happens, what would any doctor be able to do to get me walking again?

So, I’m going out tomorrow. On my own. With the brightest and best pair of Big Girl’s Pants you ever did see.

 

The Positive and the Negative

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Fairy Chimneys in Cappadocia

This week Dougie came to attack my feet. No, I lie, he came to cut my toenails, it’s just that sometimes it feels as though my feet are being attacked as they are ultra sensitive. I have always had very ticklish feet but now they are even more so. They say that one cannot tickle oneself, well, let me tell you, that’s nonsense! I have always been able to tickle my own feet but now, I can’t help but tickle them. Putting on a pair of shoes or slippers is a nightmare as my feet jump about all over the place whenever they come into contact with the material of the footware. So, you will understand that when Dougie cuts my toenails it tickles me a lot. [Having my toenails cut = Positive. Ticklish feet = Negative.]

Whilst Dougie was here we chatted, as you do. During our conversation he said that one of the things he likes about me is that I am always positive and upbeat. [Positive.]

Now, some people who know me well will be amazed by Dougie’s comment as I don’t think I tend to be like that. However, during my recent, rapid deterioration I actually have been fairly positive and upbeat. [Another Positive.] FPR has tended to be quite negative in his outlook [Negative] (although part of that is probably due to his endogenous depression), but I have not taken on board that negativity [Positive]. I feel that, if I do, it will drag me down to places I don’t want to go.

But…

This week has been different.

This week I have been feeling very down about how I am. At the moment, everything I do is an effort. Getting myself up out of bed and abluted (is that a word?) is an effort. Getting downstairs is an effort. Going to the toilet is an effort. Making a drink is an effort. Walking is an effort. Getting up from the sofa, bending to pick something up, turning over in bed, eating dinner, walking more than a few steps. And, as for going upstairs, that takes a nightmarish amount of effort.

And, all the effort that is needed is getting me down. I’m fed up wth struggling to get up from a dining chair. Fed up with having to rest after I have dressed because it has exhausted me. Fed up with being too exhausted to make or consume breakfast after I have descended the stairs to face the day. Fed up with not being able to carry things up or downstairs because otherwise I am likely to fall; with everything taking two, three or even four times as long to do as it did less than a year ago; struggling to stand by the worktop for long enough to be able to dish up our dinner: yes, I know I could use a perching stool but I’m fed up with being in such a state that I need to even think about having one! I am simply fed up with my lot. I know that very many people are worse off then I am, but that doesn’t make it any easier for me to tolerate my situation this week.

I think one of the main reasons that I am so fed up is that, because of the nature of my condition, I don’t know whether it is temporary or permanent. Consequently, I don’t know if it is worth getting myself a wheeled-walker or a wheelchair, as I don’t know if either or both might become redundant very soon.

Another reason I am fed up is that, for more than a year, I have been looking forward to helping at and attending a particular cultural festival which took place over this past week. However, I simply wasn’t able to get to any of the events. Either the venue was too far from parking facilities, or I was too fatigued to go. So, I have been sorely disappointed and frustrated.

I am hoping that this fed-up-ness is transitory as I don’t much like how it feels, but it has helped to get it off my chest.

Normal service will be resumed next week… I hope.

 

One Step Forward…

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Seydisfyjordur, Iceland

Ha, that sculpture looks a bit like me when I’m walking! 😁

Last weekend, FPR suggested that he and I go away for a short break. I had had my full-spine MRI carried out on the Friday and the results were not expected for 10 – 14 days. We assumed that little would happen regarding an appointment for me to see a neurologist until the results of the scan were known. So we decided that it would be good for us to grab a few days away from home. As FPR’s ORB is currently enjoying an extended sojourn in her caravan along the shores of an area of sunny Scotland that I had never visited, he suggested that we spend a few days there. I’m always ready for a trip away so I booked a hotel and off we went.

We called to see ORB en route to the hotel. It was a lovely, sunny day, if a bit windy. But, it didn’t stay a lovely day.

I had quite a struggle getting up the two steps at the door of the caravan, but eventually managed it, with help from FPR. However, when we returned to the caravan later it was a very different story. Try as I might, even with much help from FPR, I simply could not mount the steps. I might just as well have attempted to climb the north face of the Eiger! I was more than a little disappointed.

In fact, my walking had deteriorated badly during that day. I could barely even stand, let alone go up any steps. I ended up on the ground at least twice that afternoon, with all the additional problems that come with trying to stand up again. If you will excuse the pun, it was a definite low point. In fact, it set the scene for the remainder of the week. My left foot has been misbehaving badly, which has meant that attempting to go up steps was unlikely to end in success. The foot has been bothering me a lot this week. Consequently my walking has been dire. Luckily, when we arrived at our accommodation, the owner was there and kindly helped FPR to help me access the room. He offered us a disabled-friendly room, which I accepted -and I’m glad I did: it had a ramp instead of a step into the room and it also had a huge shower with a shower chair plus several grab rails in the bathroom. Yep, there’s no doubt about it, I am definitely ”disabled” at the moment.

I was hopeful that Tuesday’s mobility problems would ease overnight but, unfortunately, they didn’t. In fact, I have really struggled to walk for the past five days.

There was one piece of good news during the week: I found out that the neurology team are viewing my case as non-urgent. Although the prospect of waiting for an appointment is disappointing, it is reassuring that they don’t think my condition is life-threatening. In actual fact, I don’t have to wait anything like as long for an appointment as I feared. When we arrived home there was an appointment letter waiting for me, with a date in the first half of November.

Watch this space!

 

Say You Don’t Know

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The summer version of a dog sled in Svalbard. August 2017.

I started writing this post last weekend but forgot to complete and publish it. Here it is, in its tardy glory. This week’s post has yet to be penned (or should that be ‘keyboarded’?).

The last week has been difficult.

I have had three falls in the last week, each one sapping valuable grains of my confidence.

Little Sis asked me this evening if the turning of my left foot is what makes me fall. I can’t blame all of the falls on the rogue left foot. Some of them definitely are caused by the weird behaviour of my left foot, but others seem to have little or nothing to do with it. For example, the second fall happened when I was trying to pick something up from the floor and my legs simply gave way.

Every time I fall I want to burst into tears. So many emotions burst out when I crash land: frustration, disappointment, anger, misery, to name but a few. Generally, I don’t cry when my derriere comes into contact with terra firma. However, on Monday things were different.

FPR was going to be driving me to the dental surgery for an emergency appointment. I had just stepped down, out of our front door, when I lost my balance and went flying. Yet another landing on my coccyx! Honestly, no sooner does the pain begin to ease, than I take another tumble, complete with direct hit on the coccyx! Do you know, I think if I had osteoparosis, my coccyx would be in a thousand pieces by now! As it was, all I ended up with were grazes on my knee, elbow and elsewhere and a sore coccyx, again! I can’t tell you how frustrated I was to have fallen yet again but, even so, I don’t know why that particular fall made the tears flow. I really was very upset and my being upset caused FPR to be upset (but not in tears, I hasten to add). I suppose it was good to release some of the emotions, but it didn’t feel good.

A Day of Mixed Emotions

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My Big Sister

I could do with having my Big Sister around today.

Today has definitely been a day of mixed emotions. This morning the hand controls were finally fitted to my new car. I say “finally” because it feels as though I have been waiting for a long time. I suppose, that is partly because I had had to stop driving my beloved Alfa several weeks ago because it simply wasn’t safe for me to drive because of the lack of movement in my legs. So, when you add that period of not driving to the time since I ordered my new car, it adds up to a fair amount, especially if you are as impatient as I am.

As soon as the chap had finished the installation, I asked if he would come out in the car with me for a few minutes so that I could try out the controls. I was grateful to him for agreeing so we set off for a short induction. I was very excited. At last, I had my freedom back.

Only, I didn’t.

Yes, I could drive myself around – sort of, I have yet to master the hand controls – but once I arrive in the car, what then? My walking has gone completely to pot: and, with it, my confidence.

I had two falls yesterday. Neither caused any serious physical injury, although I could not get up without considerable assistance from FPR, but what they did injure was my confidence in my ability to walk. I am terrified that I am going to fall. It doesn’t matter whether I am indoors or out, I am moving very hesitantly.

Objectively, I know that being so hesitant means I am more likely to fall, but that doesn’t help me to feel confident in putting one foot in front of the other. I am having to really force myself to start moving when I stand up. Not only that, but I am desperately searching for somewhere to place my free hand, to support myself, even though I use a walking stick indoors. As for walking outside, I can almost feel myself shaking with fear.

I know that it is silly to feel so frightened, after all, I haven’t broken any bones in all of the falls I’ve had. However, that doesn’t stop the fear, I still shake like a leaf. With this level of anxiety, I wonder if I should seek some practical help with walking. It is so difficult to know what to do when I’m in the middle of investigations to establish what is going on with my mobility, and why.

One thing’s for sure, I am missing the support of my Big Sister, at the moment.

 

Getting Nowhere, Fast

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Sydney, August 2013

My new car has arrived! It was delivered on Monday afternoon and parked on our driveway. And, apart from two very short shopping expeditions, that’s where it has stayed. I had hoped that the hand controls would have been fitted by now but it’s not happening until, possibly, Tuesday of this coming week. I am a tad frustrated. Having been unable to drive my previous car for very nearly two months, I am keen to get behind the wheel of my new car. I am going stir crazy.

So, my new car has been going nowhere, fast.

The other thing going nowhere fast, is the search for a diagnosis of my mobility problems. Having been told that the urgent MRI scan would probably be done within a week of my hospital appointment, I have today, almost three weeks after I saw the Advanced Physiotherapy Practitioner, finally heard from the hospital with an appointment for the scan to be carried out. My appointment is for Friday of this coming week.

I am relieved to have the appointment as my walking still seems to be deteriorating. I am having to use a walking stick almost the whole time, indoors, and certainly all the time when I am outside. My walking is hesitant as my confidence has been blown to smithereens by the falls that I keep having. I fell, again, last week. This one was a beauty: falling straight back onto a concrete floor with just vinyl flooring to cushion the blow. Do you know, your head can get very sore when it comes into contact with that type of floor? There does appear to have been one benefit of falling this last time: somehow, my coccyx and sacral area of my spine are slightly less painful. The fall must have knocked something back into place – well, almost. See, it’s true about every cloud having a silver lining.

 

I’m Bossymamma and I’m A…

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Only one pair is mine.

I’m Bossymamma and I’m a “Disabled Person”.

Just this week I have realised that I am a “Disabled Person”. It has been a shock as I really hadn’t thought of myself as such. Yes, I have disabilities but, in my mind, that didn’t actually mean that I was a “Disabled Person”. I don’t know what I thought a “Disabled Person” was, but I know that I didn’t think I was one of them. But, as I say, this week that all changed and I can’t even say why it has changed. Admittedly, my walking has become even worse – it seems to worsen every day – and I had to visit the vehicle adaptation company to discuss the options for adapting my new car, oh, and I had my appointment with the Musculo-Skeletal Team this week who are making urgent referrals for a full-spine MRI and to a Neurologist, but none of those things, in isolation, made me believe I am a “Disabled Person”. Maybe it was the cumulative effect of those things? Who knows? How ever you look at it, it doesn’t change the fact that I now feel like a “Disabled Person”. And, if I didn’t feel like one before, then yesterday certainly made sure that I did!

Anne with an “E” and I went to a local town to collect something I had reserved online. As the store we went to is on the same retail park as a large supermarket, I asked Anne with an “E” if she would mind us going into the supermarket. I need to find some proper slippers, rather than the slip-on type I have worn since Tyrannosaurus Rex was a lizard, not a pop group.

My walking was very problematic while we were out – no, actually, it is being problematic all the time but I keep thinking I’m going to have ‘good’ days. Anyway, I really struggled to make it into the supermarket from the car, which was parked in the nearest Disabled bay, even though I was leaning heavily on the trolley. I told Anne with an “E” that I was going to have to use one of the motorised scooters or a wheelchair. We stopped at the Security desk just inside the door and asked where to find a scooter or a wheelchair and he very kindly went and fetched a wheelchair for us. I didn’t want Anne with an “E” to push it but she insisted. (I’ve mentioned that because I don’t want FPR to moan at me!)

As we went about looking for what I needed, we asked one of the staff to help us look. She was pleasant, helpful and respectful. We finished shopping and went to a till. The cashier was chatting in a friendly manner to the father and daughter whose shopping she was checking through the till. When our turn came, the cashier greeted Anne with an “E”, but not me. As she rang up the items (all mine) she made a few comments to Anne with an “E”. While I was fumbling with my shopping bags, she asked Anne with an “E” if she could help. (Can you see a pattern developing here?) I handed her my loyalty card and she managed to take it, even though she wasn’t looking towards it, and offered it back when she had pinged it. I had my credit card ready to pay using the Contactless option but the machine was too far away for me to reach. The cashier told Anne with an “E” that the machine didn’t always work when it was removed from its holder, and proceeded to fiddle with it. Eventually she held the machine out and I was able to reach it to pay. She even gave me the receipt without looking at me!

Those of you who know me well, will be able to imagine how my temper was by this time.

I was absolutely, bl**dy livid. I didn’t say anything to the cashier because I knew I would not be polite. Instead, I asked Anne with an “E” to take me to Customer Services. She seemed a little puzzled but agreed. When the chap at the Customer Services desk first spoke, he looked at Anne with an “E”, not me!

Whoosh!

I opened my mouth and accused him of doing what I had come to complain about i.e. ignored me. He immediately apologised in what appeared to a sincere manner. I explained what had happened at the till and apologised for the way I had snapped at him. I told him that the way the cashier had avoided speaking or even looking at me had made me feel as though she thought she was going to catch ‘disability’, as if it were contagious. He was a lovely young chap and came across well. I felt reassured that he understood why I was aggrieved and how insulted I felt. At first, he was going to write a report because the Customer Services Manager was dealing with a matter in the car park, but he changed his mind and asked if I would mind waiting while he found the manager and explained what had happened. I happily agreed. He found the manager nearby and explained what had happened and I saw the look on her face. I could see she was appalled. She walked over to me, came down so that her eyes were on a level with mine, apologised and explained that their staff training covers how disabled people should be treated and that the cashier seemed not to have understood or taken on board how she should behave. Again, I was reassured by her manner, what she said and how she said it. Now, I don’t say that lightly. I was in a store of a supermarket chain that I don’t particularly like, for many reasons, so for me to accept her and her actions is no small thing. It felt as though she, and the lad I had spoken to, cared about how upset I was by the cashier’s treatment of me – and I don’t say that lightly, either. I am well-known as being sceptical in such circumstances. The manager asked if she could do anything for me so I asked if I might have some flowers, please, but not chrysanthemums (I don’t like ’em). She brought over some lovely roses – one of my favourites. She promised to deal with the matter to ensure that the cashier understood what she should do differently. I left the store satisfied with how my complaint had been dealt with.

Being ignored by that cashier made me feel dirty. I felt diminished by her ignorance. I didn’t like those feelings – who would? – so I complained. However, I didn’t complain just for me, but for every disabled person, many of whom may not feel able, or indeed actually be able, of complaining for themselves. I will not accept that sort of treatment. It only took being in a wheelchair in a shop once for me to receive that sort of treatment. Doesn’t bode well for the future, does it?

Beware World. I will not let you be so dismissive of me or of disabled people, so, think on.