Downs and Ups

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Some Downs and Ups in Norway

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

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

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

Anyway, returning to yesterday’s gymnastics…

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

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

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

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

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

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

 

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Breaking Down And Building Up

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Mind the Polar Bears! Spitsbergen, August 2017

Things have changed this week.

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

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

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

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

Quick Step, Anyone?

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

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

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

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

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

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

I think you get the picture.

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

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

 

 

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.

 

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.

I Must Go Shopping!

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Lettie is feeling a little chilly

Hello there. This will have to be a quick post as I am in a hurry to go shopping. I think John Lewis would be a good place to go but I may need to call in at a supermarket, too.

What do I need to buy so urgently, you ask. Well, our cutlery is looking a little the worse for wear so it would be as well to refresh that drawer. I think I shall buy a set with more place settings as we seem to use them all in no time at all. The situation is particularly bad with the spoons. It seems as though even first thing in the morning there are few usable spoons around. Not only that, but everything seems to need more spoons than usual. Just sitting in the chair, thinking about standing up, often feels as though it is using several of that day’s spoons. I think this is probably the worst patch of fatigue I have had since I was first diagnosed with Fibromyalgia. It would be easy to think “it’s not fair” but it doesn’t help. If anything, it makes things slightly worse. Mentally, I cope better if I keep away from the “Why me?” thoughts. I don’t know whether that would be the same for others but I suspect it may well be.

So, what about the supermarket? I need to dash (!) in there for some window cleaner. Everything is looking foggy so I think the windows must need cleaning. [Yes, I know, it’s corny but I just felt like being silly – on purpose, for a change!]

Actually, at the moment the Fibro Fog doesn’t seem particularly funny. Things have moved on from thinking one thing and saying another. This morning I was sorting out my medication and filling my weekly pill boxes. Things seemed to be going fairly well until I had filled the final box. I noticed that there was a half-full blister pack sticking out of a box. I had deliberately placed the pack that way after using it for the penultimate box as I knew I would be emptying it for the final box. However, once I had filled that box, I noticed that that pack was still half-full! I had put a different (and wrong) type of tablet in each day’s compartment of that box. I had no idea which type of medication I had wrongly used, although, luckily, I recognised which pill it was in each section and was able to remove it. It was a scary moment. Have I reached a point where I cannot be trusted to deal with my own medication? I really don’t want that to be the case… Really, really, really.

That mistake has given me a fright. However, I am not going to panic. I am going to allow myself to calm down and to mull things over. I need to recognise the best way to deal with this. I hope I manage to do so.

 

I Can’t Think Of A Title!

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

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

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

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

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

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

 

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

Transitioning

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Sydney, July 2013

FPR is very interested in words and is engendering a similar interest in my grandsons. He and I have discussions about new words and the way the language is changing, not necessarily for the better, in our respective opinions. I mention that because of the word I have used as the title of this post: Transitioning. I used the word deliberately because of one of the ways in which the word is used. When I talk about “transitioning”, I am not talking about transgender issues but, rather, about the transition I am undergoing at the moment because of the Fibromyalgia.

My Fibro symptoms have altered recently: some have become more pronounced, others have been making their debuts on my personal Fibro stage. These developments in the symptoms create a huge learning curve (sorry, FPR!) around how to live my life. I must admit to feeling fed up with some of the restrictions that my health is trying to force upon me. I don’t mind having to carry out tasks in small chunks – I am used to that and have found it to be a useful coping mechanism – but I really don’t like being penalised for having the temerity to go out for a few hours’ enjoyment and entertainment. That is just not on!

Over the past few weeks, I have had to pull out from several planned trips with friends because of the effects of fatigue. I am unbelievably lucky that my friends understand and tolerate these cancellations. I don’t like having to cancel but I am trying to be sensible and take care of myself. Actually, going out is one of the few areas of my life in which I am an optimist. I always assume that I shall be fine to go when the plans are made and, if fatigue is making itself felt in the period immediately prior to the trip, I believe that it will (miraculously) lift so that I’ll be OK to go. Of course, too often the fatigue doesn’t lift so then I put on my sensible head and don’t go. When I do go, I know that later in the day will most likely be payback time but that’s OK, I don’t think I complain much about that. However, the fatigue is altering. I sincerely hope that this change is a Fibro flare, rather than anything longer-lasting. After my last few excursions I have found that the after-effects have been lasting longer than a few hours. It now seems to be taking a good two days for them to wear off. Hmph. This is not acceptable. For goodness’ sake, Fibro, sort yourself out and stop knocking me out like this. Bossymamma is not happy. In fact, I am so not happy that I am likely to stamp my feet in annoyance (and FPR knows what I am like when I reach that stage, having witnessed it in Singapore!).

For the time being, I shall try not to overdo things and hope that friends are still happy to arrange trips out in the hope that, occasionally, they come to fruition, but I really do hope that  the fatigue slips back into our old routine.

As my friend, Anne, says, “Fibromyalgia: the gift that keeps on giving”.

 

Nice And Easy Does It

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Singapore, May 2015

For the past two or three weeks (actually, it’s probably longer than that), I have been living quietly. By ‘quietly’ I mean that I haven’t been rushing about: instead I have been doing things when I feel like doing them, resting when I feel like resting, getting up and going to bed when I feel like it – you know the sort of thing. Some of the time it has been through choice, the rest of the time it hasn’t. I have been trying to give my body a chance to recharge its batteries. That may sound odd coming from someone who has problems with fatigue caused by Fibromyalgia, but it has felt as though I needed to have a bit of ‘slow’ time.

It has been an odd state of affairs, this slow time. For a start, I dislike being disabled by the fatigue. It is dreadfully frustrating not to be able to do things that I have been looking forward to, but, after a while, it just felt right to slow things down a bit. I had recently returned, after a long break, to a group that meets on Thursday evenings and I was thoroughly enjoying it. However, I was finding that for probably half of the time, I was too weary to be able to attend. Instead of railing against fate, I decided that my default position would be that I was unable to go to the meetings. That way, if I felt bright enough to go, it would be a big, fat bonus, rather than suffering the disappointment of missing it when the fatigue was playing up. I must say, making that particular decision has made it easier to cope with not being able to attend. At this point, I was going to say that perhaps I should adopt this strategy for everything, but I think that would be a bad thing. It would be a terribly pessimistic standpoint so I don’t think it would work. For the moment, it’s enough to use it just for the Thursday evening group.

I am finding that I am having to keep adjusting the way I live with the Fibro. I suppose much of that is because the Fibro has changed and has been affecting me differently over the last several months. For the time being, I don’t mind the ebb and flow – which is a good thing – but it remains to be seenhow long that remains true. For now, I shall continue on my slow journey, with occasional bursts of speed – not only in my lovely car!

The Pleasure And The Pain

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Sunset at Stepping Hill Hospital, 29 August 2017

Regular readers of this blog will know that I am very fortunate as pain is not a large part of my fibromyalgia. I hope new readers will accept that fibro isn’t always all about pain.

FPR’s mother has recently been sampling the delights of the NHS, as delivered by Stepping Hill Hospital, which is to the south of Stockport in Cheshire. We live on the northern fringes of Greater Manchester which means there are quite a few miles, and an awful lot of traffic between there and here! Even though I love driving my car and find it less tiring to drive than my previous one, sitting in traffic is no joy.

On Tuesday of this week, FPR and I set off with Lettie, m-i-l’s best-ever black labrador, on a hospital visit. Having made an early start, we had decided, for various reasons, that we would return home before the rush hour. There were a couple of tasks that I was hoping to complete for m-i-l that day which was why we set off when we did. Yes, well, the best laid plans and all that. I think it fair to say that our day did not go as planned – it felt rather like swimming in custard with an anchor tied to the ankles.

Due to a particular problem that cropped up, and a poor decision made by me, we ended up getting home much later than anticipated – but at least I had the pleasure of having completed everything I had hoped to! Oh my goodness, though, have I suffered for it!

On Wednesday, I had a quiet day. I knew I needed to be careful having had such a full-on day on Tuesday and I was feeling a bit tired. No, that’s not quite it. I felt a bit ‘squashy’. By that I mean that my brain was foggy, and my body felt like the physical equivalent of that, resulting in an overall feeling of squashy-ness. I gently plodded through the day, doing a bit of knitting, a bit of reading, spending a bit of time on my iPad – nothing too strenuous – and feeling very pleased with myself. Oops, that last bit was a mistake.

On Thursday I felt diabolical. I was so fatigued, I couldn’t even reach the dizzy heights of squashy-ness. I took things very easy. I did less knitting, no reading and less time on my iPad, but, even so, I felt worse as the day wore on. By the time 4.00pm came I knew I needed to go to bed. I usually avoid sleeping in bed during the day as I tend to recover my energy better after resting (with or without sleeping) in my recliner chair. However, sometimes that just isn’t enough, and that’s what was happening on Thursday: I wasn’t only feeling completely exhausted, I was feeling decidedly ill and nauseous – and it was getting worse with every step I took. Going up the stairs was quite interesting as I had to stop after every couple of steps.

I fell asleep almost as soon as my head hit the pillow. Zonk!

I awoke at around 6.00pm for three or four minutes and then zonked out again until about 7.00pm. I felt very much better than I had before I went to bed, but I still didn’t feel great. However, I did improve as the evening wore on until, by the time I was thinking of going to bed, I was wide awake and raring to go. I stayed up a bit longer, doing things that should prepare one for sleep, then retired to bed. I lay in bed, wide awake, for a couple of hours then gave up trying to sleep and got up again. I eventually fell asleep in my chair for an hour and a half or so and that was it until Friday night. Consequently, I wasn’t full of beans on Friday either. Unbelievably, the fatigue and exhaustion were still hanging over me yesterday!

I had the pleasure of doing everything I had planned to on Tuesday, but, my goodness, I have paid for it with the psychological pain of fatigue and exhaustion that I have suffered since.