That’s Just The Way It Is

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

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

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

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

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

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

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

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

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

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

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

 

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It Was A Cold, Dark Midwinter Night…

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A cold, dark midwinter night

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

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

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

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

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

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

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

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

 

You Can Either Laugh Or Cry

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Bossymamma’s ugly feet!

The unpleasant photograph at the head of this post may give you a clue as to the subject of this week’s rant. Yes, I’m going to talk about Fibro Feet but, no, I’m not going to talk about the pain. Instead, I shall share with you the latest pleasure (?) that Fibromyalgia has shared with me.

Actually, and probably unsurprisingly, it isn’t a pleasure. Instead, it’s an absolute bl**dy nuisance! I’m really rather surprised by it and both of my sons will likely think that it is hilarious.

What is it, you ask…

Well, believe it or not, my feet have become very much more ticklish! Yes, I know, it sounds daft, doesn’t it? But it’s true!

My feet have always been ticklish – all my ##years. In fact, for most of my adult life I have been unfortunate enough to be able to tickle my own feet. You thought that wasn’t possible, didn’t you. Well, I’m here to tell you that it’s true: a person can tickle their own feet. Many times I have almost leapt off the bed whilst trying to put on tights because I’ve touched my foot in a certain way. It’s no joke, I can tell you.

And now, it’s even worse! I am really struggling to put on my shoes or slippers. As soon as my foot touches a part of the shoe or slipper, I almost jump out of my skin. As far as I can tell, I’m not doing anything different when putting on or taking off footwear but, my goodness, the reaction of my tootsies would make a liar of me. No more putting shoes on in a hurry and making a quick escape. Oh no! It’s more like one of the Ugly Sisters trying to fit into Cinderella’s glass slipper! Got time to spare? Just watch Bossymamma trying to put her shoes on!

* And in a note to my sons and grandchildren: keep away from my feet!!!

 

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.

Strange Happenings At Bossy Towers

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Morocco, 2012

Strange things have been a-happening here at Bossy Towers, this week. Life has taken an unexpected twist. Bossymamma’s toes have been tripping the light fantastic along the road less travelled. Life has been dancing to a different tune. Nothing has been quite the same as usual.

The oracle has been consulted, horoscopes read, clairvoyants sensed and tarot cards dealt, all in an attempt to understand the conundrum that has been “this week”. In fact, at one point, there was talk of an official enquiry as foul play was suspected in some quarters.

As you can tell, it was an extremely serious matter, which was reacted to in a timely and appropriate manner.

I am struggling to find a way to fully explain the events of this week which would adequately convey the implications of the circumstances in which I have found myself. However, I shall certainly try. I will give it my best shot. I only hope that my vocabulary is sufficiently broad to enable me to share every detail of the situation in which I have found myself.

Here goes…

Um…

Well, it’s…

Since last…

I’ve had a good week!

A bit of fatigue – but that’s neither here, nor there. Very little pain. Fibro feet have been (nearly) fighting fit. A little dizziness, but nothing to get in a spin about.

A pretty good week!

Whoopee!

 

‘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”.

Oxy-Acetyline

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Morocco. February 2012

Occasionally, one can learn (OK, ‘hear’ rather than actually ‘learn’!) something from even the most mindless source. That was what happened to me a couple of days ago. It was something about oxy-acetyline torches and it was quite interesting – to me, anyway. Sadly, I can’t remember exactly what it was but I do remember being amazed at the extremely high temperatures that can be reached.

“Hmm,” you say, “what on earth has that to do with Fibromyalgia?”. Allow me to enlighten you, although, may I say how surprised I am that you haven’t yet worked out the link? It seems pretty straightforward to me!

Allow me to give you a hint…

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Bossy Feet!

Have you worked it out, yet?

Do you give up?

OK, I’ll tell you.

For the past few days, my feet have been feeling as though the skin is being burnt to a frazzle by an oxy-acetyline torch, causing it to peel off in huge pieces. The pain in my feet has been very much more severe than previously. It would be easy to say that it was unbearable but, of course, I have borne it. It has certainly been unpleasant. Actually, it wouldn’t be an overstatement to say it has been downright nasty.

It was a shock to me that the pain in my feet was so bad, and so different from what I had experienced previously. I don’t know why I was so surprised but I suppose it was because I had become used to how it felt when I was suffering Fibro Feet and it hadn’t occurred to me that those sensations might change! Pretty dumb, huh?

Hmph! Shame it wasn’t ‘numb’ rather than ‘dumb’, then they wouldn’t have felt so darned sore!

 

Some Enchanted Evening

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Only one pair is mine.

When I was a child I loved the film musical “South Pacific”. Actually, I still quite like it, and, also, Calamity Jane:

“Oh, the Deadwood stage is a-coming on over the hill, deedle-e-di-di diddle-iddly di dee. Twenty three miiii-iiiiillllllessss we’ve covered today, Oh! Whip crackaway, whip crackaway, whip crackaway”.

I liked the songs in South Pacific, as well – most of them, anyway. Having said that, I really didn’t like the corny accent of the male singer of Some Enchanted Evening. Although Rossano Brazzi played the character in the film version, the actual singing was apparently done by Giorgio Tozzi! No matter. Whichever one it was put on a strange accent.

What has all this to do with Fibromyalgia, I hear you ask. Oh, can’t you see the link between the two? Cue a perfect segue… No, can’t think of a perfect one so I’ll just continue with what I was planning to talk about in this post and hope that I remember to make it clear at the end.

I’m pretty sure that every Fibro sufferer (or Fibro warrior, if you prefer) experiences their Fibro differently from everybody else. There is such a range of symptoms, causes and degrees that that must be the case, mustn’t it? I find that some of my symptoms can be triggered by specific things, others seem to appear from nowhere and, yet more, decide to form their own habit. This post is about a symptom that has carved out its own special niche – not that it only uses that niche! Oh no, it still jumps out of the woodwork when it fancies making even more of a nuisance of itself. It’s a very naughty symptom and I would smack its bottom, if I could.

Most evenings, after dinner, I sit relaxing in front of the one-eyed monster, playing with some knitting or sewing. I have noticed that this symptom is very sociable and certainly not very happy when it can’t be near me so, each evening during my relaxathon, out it pops – full of the joys of spring and ready to wreak havoc. (Did I tell you it’s very naughty? I’m sure you can see what I mean!)

So, who is this pesky individual? None other than…  The one, the only… Ladies and Gentlemen, please put your hands together to welcome, with its exclusive one-symptom show… The world famous… The symptom everyone is talking about… The master, or mistress, of your destiny… the irritating discomfort of…

Da-da-dah…

Fibro Feet! (*tumultuous cheers and applause echo around the auditorium.)

Yes, just as I am settling down for the evening, the Fibro Feet start Going For Gold. Their knives have been honed to perfection and they have smashed the technique. In fact, Fibro Feet can do their job with their eyes shut. (I have a theory that they remove their eyes and send them on a scouting mission to find another unsuspecting victim as their aim is so accurate!) The feelings I experience include: like walking shards of glass, having someone stabbing them with a narrow blade, soreness, burning and painful itchiness. I haven’t noticed any particular routine regarding the sensations, it’s just the habit of coming to visit when I am sitting in the evenings. It doesn’t happen every evening but it happens more often than not and it does make appearances during the day, rather than being only nocturnal. It’s a very versatile opponent. It’s a shame it’s so effective.

However…

Some Enchanted Evening(s), it doesn’t take centre stage.

 

Fs, Buts And Maybes

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Morocco (I think!), 2012

In the House of Commons, here in the UK, when the MPs have voted the result may well be that “the Ayes have it”. (‘Aye’ is pronounced ‘I’.) Well, unlike the House of Commons, in the house of Bossymamma it is the Fs that have it: Fibro Fog, Fibro Feet, Fumbling Fibro Fingers, Fatigue and Freezing [cold]. And I’m Fed up with it!

Let’s go through those and explain all the joys of the Fs.

Fibro Fog has been making itself felt over the past few weeks, in subtle ways rather than the full-blown muzzy headedness. I have found that simple things have been the ones that my brain hasn’t dealt with very well: for example, hearing “Monday”, repeating “Monday” but writing down “Wednesday”, or reading an instruction, apparently understanding that instruction, and then doing something completely different! One way in which the Fibro Fog has been particularly irritating is when I am knitting. Usually I can knit happily away making whatever takes my fancy. Hmph. Recently I have lost count of the number of times I have had to unpick my knitting because of silly mistakes that I would normally make only rarely. Very annoying.

Next we have the myriad delights of Fibro Feet. Oh, what would life be without Fibro Feet? For, literally, decades I have had hot feet. Admittedly, I don’t like having hot feet but that’s another matter. Now, however, I often have cold feet which, in itself, is not a problem: I simply put on a pair of socks. That’s fine until Fibro Feet decide to kick in [apologies for the unintended pun]. The internal temperature of my feet rockets, the knives start stabbing every part of my feet, the pain intensifies etc. etc. and I just don’t know what to do with my feet.

Now, Fumbling Fibro Fingers haven’t happened much up until now. The most notable occasion that they decided to play was when I was on at a hand sewing workshop – it was very inconvenient. So, Fumbling Fibro Fingers decided they were lonely and wanted to come for an extended visit. Gee, thanks, boys! Do you have any idea how frustrating it is when your fingers are following a different set of instructions from those your brain are giving them? Not only that, but they decide that not more than two fingers will work at any one time and when the next two join in, they will actually be following a third set of instructions that are in Japanese! I’ll just remind you of my love of knitting, here…

Fatigue. Need I say more?

Freezing? In September? In England? Surely not? Hmph. Surely, YES… I should say that this is possibly (or probably) nothing to do with fibromyalgia, but it’s happening now because I have been another sort of unwell and it’s adding to my fedupness.

I hope that my fedupness will soon be over and life will be more like my normal soon. I expect you are, too, so that my next post is not so grumpy.  Fumbling Fibro Fingers crossed!

 

 

This Week I Have Been Mainly…

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No. Only one pair is mine.

Wasn’t The Fast Show great? (That’s where I borrowed this title from.) My family and I all loved it. Anyway, I digress.

This week I have been mainly suffering from…

Fibro Feet.

Don’t know what Fibro Feet is or are? Allow me to enlighten you, well, at least as to what Fibro Feet means for me.

It begins with a warm feeling in my feet which increases in intensity until my feet feel as though they are burning inside. The transition can be slow or fast. Surprisingly, if you were to touch my feet (which, by the way, is a very bad idea as I am so ticklish!), they wouldn’t feel any warmer than most people’s. Odd, huh? The next stage is the barely discernible transformation of the burning sensation into a feeling that, mainly the soles of both feet, are being stabbed repeatedly by red hot knives. That can last for five minutes or five hours – there’s just no way of predicting how long it will be. It makes walking painful and unpleasant: try imagining that when each step lands it feels as though the sole of your foot is being pierced all over by red hot, rusty nails.

Fibro Feet doesn’t always make me feel as though my feet are red hot, though. At other times there is little or no feeling of increasing heat in them. What I experience is the sensation of walking on shards of glass, lots of shards of glass, which are cutting my feet to shreds. This sensation is even worse that the hot knives one because, unlike the first one I explained, this one feels just as awful when I am sitting with my feet up, as it does when I am trying to walk. I have to admit that I try to avoid walking when my feet are feeling this way as it hurts so much.

There doesn’t appear to be any way of predicting when Fibro Feet will saunter into my day, nor how long it will hang around, but there’s no mistaking when it’s here.