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!
Here in the UK the National Health Service has a vaccination programme each winter to protect certain vulnerable people from flu. I can’t remember which groups are included – and I’m too lazy to check it, at the moment – but I know that I am one of the people invited to have the flu jab because I have a chronic chest condition. It usually takes me a while to get around to having the jab, but I do always make sure that I take advantage of its availability. I think it is sensible to have vaccinations when they are available. In fact, in 2015 I heard that there was a Shingles vaccine available.
Now, my body is extremely reactive to stress. Over the years, stress has caused me to suffer prolonged periods with no voice – the problem was so bad that I began learning sign language so that I could communicate with my family without having to write everything down. (Have you ever tried losing your temper when you have to express that anger down on paper? T’ain’t easy, I can tell you!) Stress has also caused me to suffer excruciatingly crippling headaches – not migraine but most definitely as bad as migraine – and also to develop Irritable Bowel Syndrome, amongst other things. Oh, yes… and Fibromyalgia.
Anyway, back to the Shingles Vaccine. When I learnt about it I was under a huge and prolonged period of stress. I knew, as did my favourite GP, that I was likely to be susceptible to anything and everything when the stress dissipated, so I asked him if I might be given the Shingles vaccine. He agreed that it would be a good idea but, unfortunately there was no way that it could administered within the NHS as I was outside the qualifying criteria. I decided to pay privately for the vaccine and, even though it cost more than £100, I remain certain that it was a sensible thing for me to do.
As you can see, I am a believer in the use of vaccines and so, this winter, I had the flu vaccine, as usual.
During the past three weeks I have been in the company of some people who have been suffering from the nasty cough/cold/flu lurgy that has been touring the UK. Usually, I would steer well clear of those nasty germies, but it wasn’t quite as easy as usual. Consequently, I have been half-expecting to be struck down with a severe case of Fibro Flu. Cue this week.
On Tuesday I began to feel unwell: very unwell. I had severe pain in the thoracic region of my back and also in my chest, both of which are pretty reliable signs of a chest infection working itself up into a frenzy. I was boiling hot. Then I was freezing cold. Fatigue and tiredness were off the scale. I felt decidedly l-o-u-s-y. My favourite GP likes me to keep antibiotics at home so that I can start taking them as soon as a chest infection starts because, once the infection takes hold, it is an absolute whatsit to get rid of. However, this time, I didn’t start taking the antibiotics. Although I seemed to have almost all of the symptoms, I wasn’t completely convinced that I actually had an infection. I already had an appointment booked with my favourite GP for Wednesday afternoon and decided that I would wait until I saw him and ask him to take a listen to my chest. Wednesday came and in I trotted to see my favourite GP. He checked me out and said that my chest was completely clear. It wasn’t a chest infection! Hmmm. Peculiar…
It turns out that my symptoms were all courtesy of “the gift that keeps on giving” (to quote my friend, Anne). My Fibromyalgia has decided to make me feel so lousy that it feels like flu. Isn’t that fun? You’re right. It’s not.
Fave GP and I discussed Fibro, symptoms and medication and agreed on the same conclusion i.e. there is little point in me taking any of the recognised medications for Fibro as they are all aimed at the pain, which is the least of my problems. Fave GP asked me which symptoms I have and I went blank. I just couldn’t think! Whilst I was trying to reply, I had to pause for a while, after which I told him that dizziness (which had been the reason for the pause) is one of my symptoms. I told him that I have a wide variety of symptoms but little pain, compared to other suffers, for which I am very grateful. Please be sure, fellow Fibro sufferers, that I am truly thankful that the pain I have appears slight in comparison to what seems to be the case for very many people who have Fibromyalgia.
In view of the discussion of symptoms with Fave GP, I have decided to try and add a page to this blog where I can note any symptoms that I have. So, watch this space – or should I say, watch the space next to this space?
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!
Do you believe in ghosts? I don’t know whether I do, or not. I’ve never seen a ghost but that doesn’t mean they don’t exist, it simply means that none have appeared to me. I do believe that some people have abilities that we don’t exactly understand, although there are lots of charlatans who take advantage of people.
I can hear all the question marks knocking about in your head as you read this, wondering what on earth I am rabbiting on about. Allow me to enlighten you.
I have noticed what I think is a slightly weird phenomena. (OK, OK, FPR, I know that’s wrong, I typed it deliberately just to wind you up!) No, what I noticed was a weird phenomenon.
I seem to have developed an internal Early Warning System which lets me know when Fatigue is rushing in my direction. When I have been doing something for a while – it could be for any length of time from five minutes upwards – a knowledge comes upon me that I should stop. I don’t feel tired or fatigued. In fact, I often feel that I want to continue what I am doing. However, there is a voice in my head that tells me I should stop. I then find that within, literally, a minute or two, Fatigue has arrived for a visit. It really is most peculiar as the knowing can come at any time – it doesn’t appear after a certain period of time. As I said above, it can be five minutes after I start, or it could be 45 minutes but, regardless of how long it takes to happen, the Fatigue follows hot on its heels.
You may think that it is a self-fulfilling prophecy: that I think I might get tired and so I do get tired. However, it doesn’t seem to be. It matters not whether I continue what I am doing or take a break, Madame La Fatigué arrives with her suitcase looking set to outstay her welcome – just like the archetypal mother-in-law.
Generally, when this spooky starts, I will stop what I am doing. I have found that when Madame L F arrives in this manner, she packs a real punch. She sure does like to make her presence felt! These are the times when my every muscle screams to be allowed to fall in a heap wherever I am standing. The times when I don’t have the energy to knit, or surf the net; when I’m too exhausted to cope with even the most mindless programme on television; the times when I simply sit and do nothing. The strange thing is that this utter exhaustion isn’t any indication of how long I will feel unwell: I may feel much brighter after 10 or 15 minutes, or I might feel lousy for three or four hours. There is just no knowing.
I love chocolate. It definitely has the ‘feel good’ factor. For me, chocolate is the ultimate temptation and, as Lord Darlington said in Oscar Wilde’s Lady Windermere’s Fan, “I can resist everything except temptation”.
There are occasions when I do a little tempting of my own. My last post was a perfect example of that.
You may remember that I talked about having had a good week. (Actually, when I was thinking about it a while after publishing that post, I realised that it hadn’t been as good as I had said, but that doesn’t matter.) Silly me. Silly, silly me. You’d think that at my greatly advanced age (according to my sons!) I would have learned not to tempt fate, wouldn’t you? Ha! Not me. I just jumped right in there: streamers streaming, flashing lights flashing, sirens sirening and me yelling “Here I am! Look at me! Look at me! Aim right here, Fate!”.
And it did.
The day after I wrote and published that post I had an abysmal day. I could barely move because of fatigue. Indeed, even thinking about moving wore me out. I struggled all day, trying to find the energy to pack my suitcase as FPR and I were going off on our jollies on Monday morning.
Yes, I know. Anyone sensible, particularly if that anyone has a condition which is generous with the fatigue symptom, would pack their case a couple of days in advance to avoid the risk of being hammered by a lack of energy. Yeah, well, I don’t claim to be sensible. Sensible is boring. And, anyway, if I pack too far in advance, I am likely to forget half of what I want to take – and packing at any time prior to the afternoon before departure, is way too early. I am famous, or maybe infamous, for packing at the last minute. I have been known to leave my packing until the day of departure! I remember, the day before my first trip to Australia, being absolutely amazed that people thought I would have been organising my packing for three weeks beforehand!
Sorry, I got a bit distracted there.
I managed to do my packing and other bits and pieces late on the Sunday evening, prior to our 7.45am departure the following day. I’m sure you can imagine how relieved I was to find that the awful fatigue had lifted when I awoke on Monday morning!
It really isn’t a good idea to tempt Fate, you know.
Do you remember the old Football Pools? That desperately important form that had to have crosses marked in an array of tiny boxes, to indicate which matches you thought were going to end in a draw. There was a phrase connected with “the pools” which was along the lines of “Perm any two from three”. I didn’t understand what it meant except that I think it was connected with how many draws one had to predict out of the number of crosses entered.
What has all that to do with Fibro? Well, in my last post I talked about back pain and about which of three things might have been the cause, and now, I think I have it sussed. I have whittled the options down, getting rid of two of them so I quite liked the idea of using that, apparently, redundant phrase.
I am pretty sure that the back pain is attributable to my fall on Christmas Day. Admittedly, the actual pain is different now from how it had been, but no chest infection has developed and I am still fatigued. In fact, it has been a toss-up this week as to whether the fatigue or the back pain have been more of a nuisance. On balance, I think it would have to be fatigue as, when I have had to have a rest due to fatigue, I haven’t done anything for quite some time whilst sitting. Usually, I would do some knitting, sewing or crochet, or surf the net whilst resting, but I have been too exhausted even to do any of those things. When I have had to have a break solely due to back pain, I have usually been able to do something to amuse myself, whilst resting.
Fatigue is definitely having an impact on how I live my life, at the moment. No, let me be honest, it has been having quite an effect for several months. I find that I really cannot be certain that I will be able to fulfil commitments that necessitate a journey away from home. That uncertainty creates in me a degree of anxiety and lack of confidence. I know that family and friends are aware that I have this problem and I think they understand that sometimes I have to cancel at the last minute, but it can’t be much fun for them. I also know that they worry about me, which upsets me. I don’t want to be a worry or burden. I want to be the partner/mother/Nana/friend that they enjoy spending time with, not the one they are worried about. This message is for them:
I am OK. Fibromyalgia is a pain in the bottom. While I do need you to make allowances for the restrictions it sometimes imposes on me, I am OK. I feel rotten for a while, then I start to feel less rotten, or perhaps even quite good, then I get back to feeling [my] normal. Generally I am coping with it. I am finding ways of living with it and altering how I do things. The main thing I am trying to do is live each day as it comes.
For a variety of reasons, FPR and I went on a quick coach holiday to Edinburgh over the Christmas period. I love Edinburgh but struggled to find a photograph which reflects that, to use for this post. Then I realised that when I think of Edinburgh feelings, rather than images, come to mind. That must be why it has taken me far longer to choose a photograph for this post, than to write the actual post itself!
Anyway, back to the point of this blog post.
Regular readers will know that I have been encountering more difficulties with the Fibro lately than I usually do. New symptoms have cropped up, with tiredness and fatigue being particularly troublesome. I had taken the build-up to Christmas gently to make best use of my spoons, but it had still made itself felt. Luckily, those around me are aware of and accommodate the restrictions of my Fibromyalgia.
We were staying in a hotel but had been invited to spend time with FPR’s brother and his family. We had also had an invitation to visit friends, so that was Christmas Eve and Boxing Day spoken for. We spent a quiet day at the hotel on Christmas Day. Well, I say quiet… but, more of that later.
The plan was that, on Christmas Eve, the entire family group would go to North Berwick for some cobweb-blowing therapy, but my cobwebs would be allowed to remain intact. In other words, they would walk and be battered by the wind, but I would stay in a cafe, snug and cosy, knitting up my own personal storm. However, as the weather was being a trifle unco-operative, North Berwick was knocked off the agenda. We adjourned, instead, to the House of the Long Men (so named by me as all the males were over six feet long!). The change of plan was a surprising bonus for me. Remaining at the House of the Long Men meant that I was able to properly relax. I enjoy having coffee in a cafe but it is definitely a less-refreshing form of relaxation than being with people, and in a place, one is at ease with. The pleasant result of the day was that I felt better than I had for a while. My Fibro symptoms eased right off. Bliss.
As I mentioned earlier, we were remaining in the hotel on Christmas Day, which was absolutely fine with us. Our fellow travellers were generally a pleasant bunch, our coach driver was cheerful and ready to chat with anyone and the hotel staff were pleasant, polite and helpful.
There was a couple on the holiday we had been talking with, both of whom had obvious disabilities. At mealtimes, the husband would to fetch his wife’s food first, then return to the buffet to pick up his own. In my interfering way, at the Christmas dinner I said to him that I would like to give him a Christmas treat by fetching one of the meals, so that they could eat at the same time. I was very pleased when he accepted. (What I hadn’t told either he or his wife was that I was going to be providing the entertainment.) He told me that they were going to have soup so I fetched two bowls of soup and a couple of rolls. When I was a couple of steps away from their table, my performance began.
I caught my foot on the wife’s wheeled-walker and went flying through the air, soup and rolls in hand. I made a technically superb piroutte before landing elegantly in a crumpled heap on the floor – and I didn’t even drop the soup! Actually, I must have dropped it at some stage as the bowls crashed dramatically, emptying their contents on the floor. I have to say that I was very pleased that I didn’t get any of the soup on me!
I will say, at this point, that contrary to what many people thought, I was not in the least embarrassed. I was disappointed for the couple that I hadn’t managed to carry out what I had promised. I was also upset that the husband tried to take the blame for my fall. It was nobody’s fault but my own. I had been the one to suggest that he park the walking frame in that spot and I was the one who tried to walk through it, instead of round it.
OK, back to the gory details of the performance. Help appeared from all directions, in an instant. I was not really hurt – just a bit of muscular pain and some preparatory work for a couple of bruises. I think you could say I was very lucky! I certainly felt lucky FPR jokingly said that’s what I get for doing a good turn and that I’d better not do any more but I hope it won’t stop me.
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”.
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.