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!
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
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!
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”.
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.
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.
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 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!
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!
FPR’s mother is still in hospital, with all that it entails. She rings me, asking if I will do something for her, then gives instructions in her own particular way. Often the tasks are clearly unnecessary and unlikely to yield any positive result, which makes it difficult to be enthusiastic in the carrying out of them. The trouble is that these tasks take a heavy toll. They drain what little energy I have – and, believe me, it is very little.
You know what it’s like when someone is in hospital: there are telephone calls, more telephone calls and even more telephone calls; chasing round trying to find things the patient has asked for; walking and caring for the patient’s dog; miles and miles of extra driving, much of it on unfamiliar routes; meals at peculiar times because of visiting hours and travelling time to and from the hospital; trying to fit in ordinary day-to-day appointments, and so on. Then there’s the cost…
The cost I am talking about isn’t financial, it’s physical. I am feeling constantly drained and, because I am so exhausted, that is interfering with my sleep pattern. For the past couple of weeks I have been lucky to manage four or five hours at night, and, on several occasions, it has been much less than that. It is taking a heavy toll. The more tired I become, the more problems I encounter with my sleeping, the more pain I have, the foggier my brain is and the more unwell I feel.
I was thinking, only fairly recently, that I seem to be escaping Fibro Fog. I had noticed signs of Fibro Fog soon after my diagnosis, but it hadn’t hung around long. Oh, how easy it is to deceive oneself! I was conveniently ignoring the more subtle manifestations of Fibro Fog. Actually, I don’t believe I was deliberately ignoring them: I simply wasn’t recognising them for what they were. As I look back, I reealise the signs were there, all along.
In my defence, I believe some of the problem is connected to the long-standing anxiety and depression that I have. I think there is a considerable overlap between the effects of those and the Fibro Fog: it really isn’t easy to define where one ends and the other begins. Mind you, it probably doesn’t matter, does it? Whatever you call what happens to my brain, the effects are pretty much the same.
Events this week have shown just how muzzy the workings of my brain now are. It has been a shock, both to FPR and to me. Throughout our relationship, it has tended to be me who has dealt with the admin-type stuff in the household, and it has worked well – until now… However, this week, we have both seen some of the strange mistakes I have made. Some of the mistakes are amusing, but some could (and almost did) have serious consequences. It is quite a concern. Not only that, but it is annihilating my self-esteem. I had already accepted that my ability to cope has shrivelled away, but now I have to face the fact that what is in my head is not necessarily the same as what I see, hear or say.
I feel like an idiot. It is difficult for me to trust or believe in myself so heaven only knows how FPR is going to cope with it.