Things have been a bit confusing over the past few days.
The Amazing Dr. Azeer’s diagnosis of my Fibromyalgia came hot on the heels of a chest infection I had been suffering. I have an underlying chest condition which means that chest infections have to be managed carefully. At the time, I attributed the pain in my chest and thoracic region of my spine to the infection. It is not at all unusual for me to need 2 or 3 courses of antibiotics to completely clear things up, so you can see why I made that assumption. However, the Amazing Dr. Azeer (ADA) soon realised that it was Fibromyalgia that was actually causing the pain.
Luckily, I have been in a prolonged period where I have managed to avoid catching many chest infections. Hooray! However, over the past few days, it has been feeling as though I have a good one brewing – just in time for Christmas! But… now, I’m not so sure. The pain that I have had over the past 24 hours has felt more like the Fibro pain in the chest and back. I tend to get that pain when I am very tired (as opposed to simply fatigued). I would define it as coming when the tiredness is due to my having been busy, rather than feeling fatigued without apparent cause. The pain I had felt in the day or so prior was accompanied by the sort of unwellness that I recognise. Consequently, I am confused. Is it an infection taking a leisurely stroll in my direction, ready to knock me for six at Christmas, or is it merely due to tiredness?
I am hedging my bets and trying very hard not to overdo things. I do a bit of a task, then rest. The proportion of resting to working is very skewed because I don’t have to do much to become tired, but that’s OK. Even with all of the necessary rest, I am on target to complete the task in hand, so I regard that as a ‘win’. Oh! We Fibro Warriors are easily pleased, aren’t we?
Sometimes, someone or something somewhere (depending upon your beliefs) smiles upon you, making things go well. Sometimes, those same someones or somethings are in a pesky mood and decide to take it out on you and make life a giant-sized pain in the bottom.
Last weekend, the someones/somethings were in a good mood because they decided to go along with my plans to have a day out with my family. Everything that I did or did not do in the few days leading up to Sunday, was designed to help me manage to actually take part in the activity. I can scarcely believe it, but it actually worked! Like a dream! Woohoo! I even managed to get a little shopping done on my way home!
(Can you tell that this doesn’t happen as often as it did pre-Fibro?)
However, since that expedition, the someones/somethings have decided to use me as their personal punch ball. Their displeasure culminated in me grinding to a sickening grinding halt halfway through a little task I was doing for FPR. I must have been in a bad way because he commented on it when I thought I was still managing quite well. It didn’t take long for me to be not managing at all. Anyway, it was a price worth paying for having managed to go out on Sunday. So, it is still a…
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!
Regular readers of this blog will know that I am very fortunate as pain is not a large part of my fibromyalgia. I hope new readers will accept that fibro isn’t always all about pain.
FPR’s mother has recently been sampling the delights of the NHS, as delivered by Stepping Hill Hospital, which is to the south of Stockport in Cheshire. We live on the northern fringes of Greater Manchester which means there are quite a few miles, and an awful lot of traffic between there and here! Even though I love driving my car and find it less tiring to drive than my previous one, sitting in traffic is no joy.
On Tuesday of this week, FPR and I set off with Lettie, m-i-l’s best-ever black labrador, on a hospital visit. Having made an early start, we had decided, for various reasons, that we would return home before the rush hour. There were a couple of tasks that I was hoping to complete for m-i-l that day which was why we set off when we did. Yes, well, the best laid plans and all that. I think it fair to say that our day did not go as planned – it felt rather like swimming in custard with an anchor tied to the ankles.
Due to a particular problem that cropped up, and a poor decision made by me, we ended up getting home much later than anticipated – but at least I had the pleasure of having completed everything I had hoped to! Oh my goodness, though, have I suffered for it!
On Wednesday, I had a quiet day. I knew I needed to be careful having had such a full-on day on Tuesday and I was feeling a bit tired. No, that’s not quite it. I felt a bit ‘squashy’. By that I mean that my brain was foggy, and my body felt like the physical equivalent of that, resulting in an overall feeling of squashy-ness. I gently plodded through the day, doing a bit of knitting, a bit of reading, spending a bit of time on my iPad – nothing too strenuous – and feeling very pleased with myself. Oops, that last bit was a mistake.
On Thursday I felt diabolical. I was so fatigued, I couldn’t even reach the dizzy heights of squashy-ness. I took things very easy. I did less knitting, no reading and less time on my iPad, but, even so, I felt worse as the day wore on. By the time 4.00pm came I knew I needed to go to bed. I usually avoid sleeping in bed during the day as I tend to recover my energy better after resting (with or without sleeping) in my recliner chair. However, sometimes that just isn’t enough, and that’s what was happening on Thursday: I wasn’t only feeling completely exhausted, I was feeling decidedly ill and nauseous – and it was getting worse with every step I took. Going up the stairs was quite interesting as I had to stop after every couple of steps.
I fell asleep almost as soon as my head hit the pillow. Zonk!
I awoke at around 6.00pm for three or four minutes and then zonked out again until about 7.00pm. I felt very much better than I had before I went to bed, but I still didn’t feel great. However, I did improve as the evening wore on until, by the time I was thinking of going to bed, I was wide awake and raring to go. I stayed up a bit longer, doing things that should prepare one for sleep, then retired to bed. I lay in bed, wide awake, for a couple of hours then gave up trying to sleep and got up again. I eventually fell asleep in my chair for an hour and a half or so and that was it until Friday night. Consequently, I wasn’t full of beans on Friday either. Unbelievably, the fatigue and exhaustion were still hanging over me yesterday!
I had the pleasure of doing everything I had planned to on Tuesday, but, my goodness, I have paid for it with the psychological pain of fatigue and exhaustion that I have suffered since.
May I begin by saying that I am not making any religious statement by showing this photograph – I photographed it, and am showing it here, because I think the colours are beautiful.
Back to Fibromyalgia…
Yesterday started sluggishly and didn’t ever manage to speed up. I was paying the price for having lived something like a *normal* day on Sunday. The Fibro was obviously thinking about punishing me for actually feeling pleased at what I had achieved over the weekend. Well, it was terrible of me to imagine I’d had something like a good day, wasn’t it? No, actually, it wasn’t terrible. Despite what the Fibro might think, I am allowed to have positive thoughts and good or goodish days. When it tries to tell me otherwise I will stand with a mutinous expression on my face, my fingers fixed firmly in my ears, loudly chanting “Nah nah, nah-nah nah” at it.
However, I may not be quite so bold the next day. Hmmm.
Cue, Monday and the sluggish start. I wasn’t too bad, but I certainly wasn’t lively. I managed to go out in the morning but by the time I returned home, just before lunch, I needed to rest and, preferably, to sleep. That wasn’t to be. We had visitors due at 1:30 pm so I simply rested in an armchair for a while. Then I received a message that they were likely to be late, but by then it was too late to sleep. “Oh, well,” thought I, “I can sleep after they leave”. No, that wasn’t going to happen as they were later leaving than I had anticipated. That wasn’t a problem in itself as they are pleasant people and it was good to see them. It was simply that, by the time I had sorted through some of the items they had brought, it was almost time for dinner so there was no time for a nap.
I slept fairly well overnight. (I am thankful that currently, my sleeping at night, although short, does refresh me reasonably well.) This morning I awoke earlier than necessary so lay in bed awhile before getting up to face the day.
My first task of the day before I even went downstairs. I wanted to continue some easy sorting and tidying that I had started yesterday. I had been tackling it in fits and starts and thought I would do a little before my first coffee of the day. It didn’t take long for my energy to wane and, unfortunately, that was how it stayed for most of the day. I had been due to have the morning out with some friends today but had to cancel as I knew I had to sleep and was unlikely to wake up in time to get ready and go. In fact, I awoke at the time I should have been arriving at Elizabeth’s house and couldn’t find enuogh energy to get up from the chair for quite some time after that.
That sluggishness and fatigue has lasted all day, although I have managed three or four small, sedentary tasks over the course of the whole day. I have deliberately tried not to overdo things today as I have things to do tomorrow so, would you mind letting the Fibro know that it would be better if it didn’t come to see me on Wednesday, please?
Today, I have managed to achieve a fair amount, with just a short rest from time to time. In Fibro terms, I think I would be justified in claiming that I have done an honest day’s work today. Yes, I have done considerably less than someone without a chronic condition would be likely to do, but I am happy with my achievements for the day – except when I look in the room where I was working and spy the chaos that reigns. That is due to the sudden enforced end to my work. Everything just had to be left. However, although it looks as though it is an absolute tip, it is actually very near the point of being beautifully tidy, so it won’t take long to complete the task I was engaged in.
It is a wonderful feeling, knowing how much I have done today – even if I am suffering the thoracic pain of fatigue. Oh well, can’t have everything, can we?