Moving Along

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Beautiful reflections, seen on the journey from Honningsvag to North Cape, Norway

This week is all about moving along – life moving along and me… trying to!

Earlier in the week I went to see the Amazing Dr A. He looked surprised when he saw me hobbling in with my walking stick, understandably so. The last time I saw him, earlier this year, I was far more mobile but things have gone downhill since then. During my appointment he wrote a short letter in support of my application for a Blue Disabled Badge. I had, mistakenly, thought that the issuing authority would contact him for a report. However, when checking through the paperwork, I saw that I have to arrange for evidence from my GP. That d*mned Fibro Fog makes it so difficult to take in information. Grrr.

This evening, I decided to try walking to the postbox at the end of our road. I had a letter to post but didn’t want to have to use the car. I set off with my trusty walking stick at my new usual pace but it didn’t take long to slow down even more. I was shocked at how quickly I ended up walking so very slowly. I stopped to chat with a neighbour then continued on my way. I noticed that the camber of the pavement was making it more difficult for me to walk – I just couldn’t find my balance. I was going even more slowly and felt as though I was almost stationary on the final stretch, near the postbox. When I began the return journey it registered in my brain that I had been walking uphill. I could really feel a difference in my gait because of walking downhill. It isn’t much of a slope, but I definitely noticed the way it affected my walking.

Soon after leaving the postbox my left foot didn’t place well and I stumbled. You know when you lose your balance and you end up almost running because you can’t keep control of your feet? Well, that’s what was happening to me: I could feel myself heading for the edge of the pavement, towards the road. Yikes! It was scary. Somehow I managed to stop myself falling and to bring my left foot under control. I had to stop for a short while to gather myself. It had given me a fright. I set off again towards home. I was going extremely slowly but not tottering quite as much as on the way to the postbox. I decided to walk in the road because the camber of the pavement was causing me problems: it certainly helped, especially as my left foot was beginning to twist over. I can’t tell you how pleased and relieved I was to reach home!

Moving on, this week I have an assessment with an occupational therapist in relation to my application for a Blue Disabled Badge. I have been very anxious about the whole process: completing the online application form, fighting the fog to understand what is needed and now, also, the impending assessment appointment. The Amazing Dr A was very encouraging when I saw him but I still feel anxious. My boundaries have been shrinking because of my mobility difficulties and, without a Blue Badge, they are likely to shrink even more. It’s scary. I am pleased and grateful that FPR is coming with me to the assessment. He’ll have to wear his best “Calming Bossymamma Down” hat.

 

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Back To Square One

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Faroe Islands, August 2016

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

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

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

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

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

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

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

 

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.

 

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!

 

A New Realisation

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An eye-catching sculpture seen on one of our holidays

Today there was almost an enforced continuation of the dearth of writing on this blog. My frustration levels are quite high this morning. I have done quite a bit of IT and internet jobs for others over the past fortnight or so but this morning could have done with someone to sort out my own IT problems. Instead, I have cheated: rather than struggling to sort out the tantrum that our MacBook is in the middle of having, I decided not to log in as myself but, rather, to pretend I am a guest. Grooooaaaaaannnnn.

The need for this capitulation is irritating but I simply cannot face any more frustration at the moment. I have had several weary days during the last couple of weeks or so which have been frustrating but have also brought with them a new realisation. When I’m having a bad Fibro Day due to fatigue and lethargy, it affects my physical abilities. I don’t mean the direct physical effect of the fatigue making it exhausting to move but, rather, that I can also feel a difference in my abilities from a physical perspective. As you may have guessed by now, I am finding it difficult to describe what I mean. I think I shall explaining from a different direction.

The bad days I’ve been having have not exactly been Fibro Fatigue Days. They have been more generalised than that. I have felt achey, lacklustre, a bit foggy, weary, sort of “unpolished’, as though all of me needs spring cleaning. That description also includes how my body has felt. I have felt very stiff and my mobility has been poor. Even when I have felt brighter, it has been an illusion. My ability to walk any distance has been severely restricted. I went out with Little Sis earlier in the week and could barely put one foot in front of the other. It was as though each of my limbs and my body were being held back by some physical restriction. It wasn’t fatigue in my usual sense. It was more that I felt the Fibro was making me unwell and so stopping me moving.

I hope that explanation is clearer and easier to understand because I just cannot think of another way to describe it, apart from being frustrating. Sometimes I would be sitting and feeling fairly OK but, as soon as I moved, I looked and felt severely impaired. It was as though I had aged 20 years in 20 seconds.

Hey! Where did all those birthdays go? Where are my 20 years of presents?

What do you mean by “Just because you feel older, it doesn’t mean you are older”? Hmph!

OK, well, what about all the birthday cakes? *smiles hopefully

Hey Ho, Skip To My Lou

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Patagonia, 2014

This has been a funny week, Fibro-wise, culminating in two, very definite, Fibro Days. They have been the sort of days when everything feels Fibro-y. “Out of sorts” types of days. Ache-y, tired-y, Fibro Foggy, weary, fatigue-y, grumble-y sorts of days. The type of days when lots of different Fibro symptoms make an appearance. In fact, if I was keeping a register, yesterday and today there would be ticks in almost every box.

One box that has most definitely been ticked for both days is the one that relates to “Skip to the loo”. I have most certainly done a lot of skipping in that direction! When I have these Fibro Days, skipping to the loo decides to make its presence known. And what a darned nuisance it is! Why does it have to happen on the days when I really don’t feel like jumping up and down? I really don’t feel like wearing holes in the carpet between the living room and the Little Girls’ Room! I would far rather stay collapsed in an elegant heap. It takes a huge amount of energy to rearrange myself into a supposed relaxed pose once I have completed the fifteenth “skip” of the day. It would, I’m sure, be far easier had I attended a Swiss Finishing School. However, my educational career fell far short of those dizzy heights – so far short that I haven’t even been to Switzerland. Hmm. Note to self: “Go to Switzerland on a lovely holiday”.  I just hope I won’t have to skip up a mountain to the loo!

 

‘Twas The Night Before Christmas…

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The Italian Chapel on Mainland in the Orkney Islands

FPR and I have spent a lovely few hours with family this afternoon. They had their Christmas celebration yesterday so on Christmas Eve it was Boxing Day! A bit of a mixed-up time, eh? Not only that, but I have had a generous early Christmas present.

My friend, Fibro, decided to give me a present consisting of multiple symptoms that I don’t usually have a problem with. I must say, at this point, that none of the individual symptoms has been unbearably awful. However, the arrival of lots of them at once has been a bit anti-social. It has felt overwhelming, at times. I have been feeling pain in places that don’t usually give me any trouble and it has also been making itself at home in the places where it is a familiar face. It has been particularly bad in the thoracic region of my back and up across my neck, shoulders and arms. Fatigue has been playing up for a while but, the last few days it has ramped up the action or, should I say, the lack of action. An example of this is that I have only been able to work a few short rows of knitting, before having to rest – particularly irritating as I am trying to complete a Christmas gift!

Sleep has been less restorative than usual. Up until now, sleeping has revived me, but that doesn’t seem to be working, at the moment.

The Fibro Feet have been working hard causing discomfort, as have the Fibro Fingers. Add to that particular mix, the Restless Legs and you have a lively dance to watch.

With the symptoms I have mentioned, and others, has come a general feeling of unwellness. Bossymamma has not been a happy bunny!

As Anne with an ‘e’ says: “Fibromyalgia: the gift that keeps on giving”.

Things That Go Bump In The Night

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My lovely boy.

During the long, dark nights of Winter, many people like to share scary stories and so, on this dark winter’s morning I thought I would continue that tradition, albeit my timing is somewhat out. It’s a bit of an odd thing for me to do as I don’t enjoy being frightened. I have only ever watched one horror film: it was more than 45 years ago and it still gives me the creeps when it comes into my mind!

The start of my scary story is something of a cliché…

It was a cold, dark winter’s night and a gale was howling. There was no moon. Everywhere was black as coal: too dark to see anything. A bat skimmed by, leaving a whisper of its flight. A single, almost silent tap was heard, like a fingernail lightly touching glass. Suddenly that tiny sound exploded into a cacophonous clatter. The noise was deafening. It completely engulfed the cry of the rushing wind. Nothing existed but the sound which completedly overwhelmed the senses. There was an absolute knowledge of a cataclysmic happening. Life-changing. Earth shattering. Everything was obliterated by the intensity of the crushing and crashing. (*pauses dramatically)

It was the sound of Fibro Fog indelicately shoving all of Bossymamma’s marbles towards the brain’s Emergency Exit!

Ladies and gentlemen, Bossymamma’s marbles have left the building.

Fibro Fog rules in Bossymamma’s world.

You don’t think that’s very scary? Hmm. Try it. Try reading something, acting on it, making a telephone call about it and, during the call, realising that what you read was not what was written down. Try writing down some important information, only to find that you have changed just about every pertinent detail. Try having an apparently serious conversation with someone you have never met before and, halfway through a sentence, your brain turns to mush and, not only have you forgotten what you were going to say, but the entire discussion no longer makes any sense to you. Or, how about sorting your medication into dosette boxes, only to discover that you have made a confusing hash of it and have no idea what you’ve done or how to correct it? Believe me, it really does feel as though my marbles are AWOL.

But,

It’s not always like that. Sometimes my mind is as clear, as organised and as logical as it ever has been. Sometimes I can function like Me, Well, I suppose that should read “like the Me that I used to be”. However, I don’t want it to be the Me that I was, I want it to be the Me that I still am. It feels as though I am disappearing: being swallowed by Fibromyalgia and irrevocably changed by it. I’m not ready for me to vanish. Bits of me have been disappearing for years. Stress, anxiety and depression have taken their toll, eroding me. I used to be someone who coped, organised, did things, got others to do things, but that has been slipping away, to be replaced by a very different person – possibly one who is easier for others to be near, but not easier to actually be. Mind you, I haven’t completely given up.

Yesterday an article showed up in my Facebook Newsfeed. It discussed reasons why people with Fibromyalgia don’t like talking on the telephone. One sentence, in particular, stood out for me:

‘Personally, I really dislike speaking to strangers on the phone because I don’t want to appear stupid. At least if it’s someone I know well, I can say, “Sorry, I just had a fibro moment. Can you repeat that?” ‘

I have made a few telephone calls over the past couple of days during which Fibro Fog has made itself felt. However, unlike the author of that article, I am unconcerned about the possibility of appearing stupid. You see, I know that I’m not stupid and that is more important to me than the opnion of someone on the other end of a telephone. The way that I deal with Fibro Fog interfering in a conversation, either in person or on the telephone, is to tell the other person that I have a medical condition that sometimes turns my brain to mush and asking them to repeat what they have said, or explain it another way so that I can take it in. What I am telling them, in effect, is that I expect them to take some responsibility for ensuring that they are helping me to understand. I don’t think that’s unreasonable. How often have you heard someone say about computing, for example, that they ask their son/daughter/grandchild to show them? Then they go on to say that said son/daughter/grandchild just touches a few buttons and does it without explaining, so they don’t learn. It’s the same thing, isn’t it? What’s the point of me asking and then pretending that I have understood, when I haven’t? I’m not ready to sit quietly in the corner like a good little disabled person.

 

 

 

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!