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’.

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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.

 

Which Way Shall I Go?

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My Big Sister

I am wondering which way to go, today. I’m spoilt for choice as I could go this way, or that. I am stuck between Scylla and Charibdis Charybdis (spelling mistake courtesy of FPR!). Caught between a rock and a hard place and trying to choose between the Devil and the deep blue sea. I’m weighing up all my options before I come down on one side or the other as, at the moment, I am sitting on the fence.

I need to make a decision.

Had you guessed that?

The decision concerns this blogpost but I shall continue as I am, for the moment.

When I go to bed I really like snuggling under the duvet. I especially like the winter because snuggling feels so cosy and warm, even though my nose is probably still cold. However, there is one problem with diving in bed and drawing the covers right up and around me: Fibro Feet.

Between about five to fifteen minutes after I settle in bed, my Fibro Feet switch on to maximum, which means that the covers have to be kept well away from my little tootsies. They are burning hot inside and it feels as though the skin is being scraped off with a rasp. In fact, that scraping feels so realistic that a picture of it happening comes into my mind. That, in itself, is unpleasant because, as those closest to me know, I am very squeamish. I really dislike blood and gore and the image that comes into my brain contains both of those.

Another sensation that begins is that of my feet being pinched by a strong metal clamp. It doesn’t feel as though they are being squashed, it has a very definite feel of being pinched. I wonder why it is that all the sensations and feelings connected with having Fibromyalgia and/or Chronic Fatigue Syndrome are all so unpleasant? The two conditions really should be told that it’s rather unkind to inflict all of that onto people who are having to cope with life encumbered by long-term illness.

The Fibro Feet don’t just attack when I am in bed, although they do consistently appear then. Their campaign against my poor plates of meat reignites at all sorts of times and in various places, but there doesn’t seem to be a regular pattern – except when I go to bed. It’s OK if I fall asleep immediately (feel free to snort with laughter at this point, if you wish), if not, they attack and they attack fast – and they ain’t takin’ any prisoners.

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.

It’s A Little Bit Me…

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Handmade Mosaic Tile Borders. Morocco, 2012

Time for a touch of nostalgia, everyone. Today’s title is borrowed from this song by The Monkees. They were huge when I was young and impressionable. I used to enjoy hearing their songs and always thought Mike Nesmith was quite dishy. Oh gosh, that makes me feel old! Anyway, as I say, I borrowed part of the song title for this post.

It has been very quiet here, at Bossy Towers. Like much of the UK this week, we have had snow and low temperatures which have encouraged us to stay wrapped up warm and snug indoors – as if we needed any encouragement! The situation has suited me well during the past few days as energy levels have been low. Anything that I have managed to do has been for less than half an hour and, often only a few minutes. It’s been “do a little of this” then “a little of that”. In fact, for much of the time, I haven’t really been doing much at all. Life has certainly changed from when FPR would see me knitting, or sewing, and comment that I always seem to be doing something, always busy. I am hoping those days will return because, at the moment, I can’t even knit for more than a few rows before my oomph is oomphed out. Oh well, at least I can still knit… unless it’s something for me! That’s when the Fibro Fog kicks in, Big Style, but we’ll overlook that for the moment.

Just thought I would mention that Tinnitus is being a real pain at the moment. For the first time that I can remember, the tinnitus in my right ear actually interfered with my ability to hear. Usually I hear everything above the ever-present noise, but once or twice in the last couple of days, I have had real trouble working out if there was any external sound. Pah! Just get lost, tinnitus: I really am not interested in what you are trying to do.

It’s only a very short post, this week. My feet are getting cold and I have just spotted two microjoules of energy which I am going to grab and make full use of!