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.
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.
Waves aren’t only found on the beach, are they? If you’re like me, your hair has waves, but waves can also be abstract (thank you, FPR for giving me the word I was seeking), like a wave of sound. However, the waves I am talking about cannot be heard by anyone and only one person can feel them when they develop. They are waves of things like fatigue, nausea or hunger.
Just a few days ago, I was thinking about and enjoying the relative hiatus in my fatigue – tempting providence, some might say. I’m not sure if “tempting providence” would be the right description: I prefer to describe it as appreciating the good times. Anyway, within a few hours the good times had rolled.
It began on Saturday morning with me feeling quiet. I know that might seem like a strange word to describe how one is, but, really, it is the best word I can come up with to describe my whole demeanor. When I’m quiet, I don’t feel ill, but neither do I feel well; I don’t feel like doing anything but neither do I want to be doing nothing – it has to be a very low-key activity; I don’t feel like talking, or listening, but I don’t want silence – just some low background sound from something like the TV or radio. This “quiet” feeling lasted several hours then the waves began.
The first wave swept across me when I had popped upstairs for some reason. It was an “I don’t feel right” kind of wave. By the time I had gone back downstairs, the next wave was hitting: fatigue, followed quickly by a wave of hunger. As I hope you can tell, the waves were coming thick and fast. Hunger was followed by fatigue, which was being chased by nausea which, in turn, had hunger hard on its heels, but fatigue wasn’t letting hunger get away with that and quickly overtook it. It was a peculiar sensation having so many feelings sweeping over me. I really needed to sleep.
Nowadays, when fatigue hits, I have a sleep in my recliner chair. I don’t like going to bed during the day as I tend to sleep too deeply. Usually, sleeping in the chair in sufficient to refresh me. (I realise how lucky I am that my sleeping does tend to restore me.) However, when I tried to settle in my chair, I realised that it wasn’t where I needed to be. My body wanted to be lying down so, for the first time for many months, I lay on the sofa, but as soon as I lay down another wave of hunger hit, quickly followed by nausea. I knew that I needed to eat something, despite the sporadic waves of nausea. I grabbed a breakfast bar and managed to eat it before the nausea reappeared. As soon as I finished eating, I lay down again, falling asleep within a short time.
When I awoke, I felt much better and got through the rest of Saturday with no problem. Sunday was fairly good. On Monday morning, I had my regular post-breakfast nap but it lasted longer, and was deeper, than usual. I was awake in time to go to my regular Monday morning activity and was pretty much OK for the rest of the day – “OK” meaning I was able to do a little, then rest, then do some more and rest some more. I was more tired than usual in the evening and retired to bed earlier than I normally would. I slept well and got up around my usual time and had a cup of tea before my post-breakfast nap (P-BN). The only thing was that my P-BN was just the start: no sooner had I woken from it than I fell asleep. That sleep went on for longer than I would have liked as, by the time I came to, it was too late for me to go to Tuesday morning’s activity. That was disappointing as fatigue and other reasons have prevented me from attending several of those meetings.
I am due to go out this evening and am desperately hoping that, by taking things easy today, I shall be sufficiently hale and hearty to be able to go tonight. Fingers crossed!
It’s very easy to become anxious about one’s sleep patterns. How often do we hear someone talking about how they “can’t sleep”? Actually, how often do we, ourselves, say those words? I know I used to talk about lack of sleep (maybe that should say “complain about”) quite often.
You might think that sleep, or the lack thereof, would be high on my list of grumbles, but, actually, it isn’t. Lack of restorative sleep is a well-known symptom of Fibromyalgia. Luckily, I don’t seem to have that particular problem: when I sleep I am refreshed by it, even if I sleep for only a few hours overnight.
In the past, stress has greatly affected my sleeping, but not always in the way you might think. There have been just a few occasions where a sudden stressful event has caused me to become overwhelmingly tired and to sleep deeply for many hours. I think it was my brain’s way of escaping whatever awful thing was happening. It was always strange as the events were of a kind that one might imagine would make sleep impossible. As I say, that happened rarely, more usually I would struggle to sleep. (My late husband would sometimes deliberately bore me to sleep, if I was having a rough time of things, by talking about a subject that interested him but had the opposite effect on me. Most times it worked like a dream!)
Over the past four or five years, I have realised that worrying about the amount of sleep I have is pointless. I believe that if one begins to actually worry about sleep, the whole problem grows exponentially. When I am going through a period of disturbed sleep, I simply accept it. It is a benefit of Fibromyalgia [yes, really, there is a benefit!] that I can sit in an armchair, with my legs up, and fall asleep. In fact, it’s not particularly unusual for me to fall asleep more easily in the chair than in bed! So, if I am lying in bed awake, I am quite likely to get up and go downstairs. I might have a cup of coffee, do some knitting or sewing or, perhaps, watch TV. Sometimes I will fall asleep in the chair, or on the sofa, and at other times I’ll go back to bed. The one thing I won’t do is worry about it.
Obviously, my situation means that I am able to leave the sleep to sort itself out without it causing me too many problems. I no longer go to work and I have no dependants, so my time is my own. I am very lucky to be in that position, unlike so many other Fibro Warriors who have partners, children and homes to organise. However, please don’t think that I take my good fortune for granted. I have had some truly awful times in my life and long ago reached the point where I learned to enjoy and appreciate every good time that came along.
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?
In my last post I mentioned the theory that perhaps my Fibromyalgia would be gone with, what some perceived, as the cause gone. My younger son, the eternal optimist, had been the first person to actually say the words, but he was only saying what several important people in my life were thinking. I freely admit that I was one of those people, which is surprising given that I tend to be a pessimist! However, life has taught me that you have to recognise and appreciate the good times in order to help you through the bad.
For several months, the Fibro hardly made an appearance and I certainly recognised my good fortune. That was the main reason for the hiatus on here – there just wasn’t anything to write about! Other areas of my life were not so good, which was another reason that I didn’t post. Recently, life has found a new pattern which, disappointingly, includes a resurgence of the Fibro.
Since around Christmas 2016, I have been noticing bits of pain appearing in some parts of my body – a bit unpleasant but easily tolerable. Slowly the pain increased in intensity, but remained tolerable. I discussed these changes with my GP, Dr. Azeer, earlier this year and we agreed that it was better for me to continue without any medication for the time being. After all, that decision can be changed if circumstances alter, which they have done this week. Ladies and Gentlemen, Elvis may have left the building but Fibro pain has, most definitely, entered it!
Things began to change after a recent particularly busy period. Initially I thought it was simply a flare-up because I had overdone things: I was feeling more pain in a couple of spots and was having more frequent bouts of dizziness and of fatigue. The pain was steadily increasing and, although still tolerable, it was becoming more persistent. In addition, my sleep pattern had deteriorated. I was having to take frequent rests whenever I undertook any tasks: frustrating but OK. However, last week something new happened…
I had almost finished some sewing that I was doing and I was feeling tired, but in a way I didn’t remember having felt before. I decided not to stop as I had so nearly completed the task. With hindsight, I cannot decide whether that was the right or wrong thing to do. Once I had done what I wanted, I went to rest in my recliner chair and, oh, did I need to rest! I was assailed by more pain than I had experienced previously. Not only that, but the pain hurt more than it had before and I felt very unwell because of the combined effects of pain and fatigue. I am finding it impossible to adequately describe how I was feeling as it was far removed from my experiences with Fibro thus far.
As the evening wore on, I felt less unwell but was still in a lot of pain. It made being in bed, and sleeping, very difficult. I couldn’t find a reasonable position to lie in. My left arm and shoulder are heavily affected by pain and it was even worse that night, hence my difficulties in deciding how to lie. The severe pain continued well into the following afternoon, easing slightly as night-time approached. My partner and I were out for the day and, when I drove home in the early evening, I found it unusually painful to drive his car. That is a slightly concerning element but it does reinforce how pleased I am with the car I bought last year, as I find it easier to handle and less tiring to drive.
The days since that episode have become steadily better and, in fact, I have just had two, yes two, pretty good days on the trot. I think those closest to me are pleased as I tend to make noises when I am in pain. I try not to groan, but I am often unsuccessful…
** Apologies to all Orcadians. My partner has just told me that the Italian Chapel is not on Mainland but on another of the Orkneys. Apparently we crossed water en route from Kirkwall! My excuse for not noticing is that I wasn’t really with it. It was just two or three hours after I had been told of my sister’s death.
The major stresses in my life recently are continuing. The levels of stress vary but are consistently high and the impact on my health and wellbeing becomes more apparent.
My mood has lowered during these last three weeks and I am having to monitor myself carefully to ensure that I don’t slide down into the dark pit. The situation vis-a-vis anxiety is slightly different, as there have been fluctuations in the level. Generally speaking, I have been suffering more anxiety lately and have had to resort to taking some of my emergency medication on occasion. I really do keep that medicine as a last resort so, having had to take some, is disappointing. Disappointing but not surprising.
As for the Fibromyalgia, I am still of the opinion that I am very lucky. Considering how difficult life has been for some time, I am amazed that my symptoms have not been worse than they have. I am definitely getting more tired, more often and the fatigue is also more apparent. In case you are wondering about why I use the two words “tiredness” and “fatigue” I will explain. I use “tiredness” to describe the times when I feel sleepy and when I feel the sort of tired anyone might feel after physical exertion. “Fatigue”, on the other hand, describes when my energy suddenly disappears and I feel as though I am trying to walk through a wall.
I have previously mentioned that the tinnitus has increased to a level that makes it more difficult to ignore. I am mainly hearing a level tone in my ears, albeit rather loud, but at least it is only a single tone and the ticking and other noises appear to have abated.
One symptom that has decided to make an appearance is pain. It has been generalised pain, all over my body, and low level. I feel stiff and it seems as though I ache everywhere. Not only that, but at times when I am moving around, the best I can manage is an undignified shuffle. However, I am very thankful that the pain has been mild and I have not needed to resort to painkillers – plenty of time for those in the future.
It’s a few days since I last posted on here. Having had such a terrific day on Tuesday, the week went downhill. All the days from Wednesday to Saturday passed in a sort of haze of pottering and sleeping. I was sleeping at least once during the day but, more often it was at least twice.
Friday was the worst day as my head was all over the place. I was struggling to focus on anything enough to be able to deal with it effectively. It was embarrassing at one point as I was in the middle of a telephone conversation and my mind just turned to mush. Obviously I needed to end the call so I simply said that I was struggling to concentrate and would ring back. The chap on the other end of the phone was lovely and very polite but I wonder what was going through his mind? 🙂
It must have been strange for the chap on the phone but generally I find that it is easier for me to be honest about my difficulties. It may turn out not always to be the case but that is how it is at the moment.
Today, Sunday, appears to be a better day – at least where fatigue is concerned. However, my mind is rather hazy: and, as for decision making, just forget it! There is no chance of me making a decision, as my elder son discovered when we were trying to make some arrangements.
Sometimes, I’m glad I am me, and not the person who has to deal with me!
After spending most of the day asleep, I had hoped that I would arise bright and breezy from the ashes of my somnolent Thursday. Alas, it was not to be: neither on Friday nor on Saturday.
For the past two days I have felt tired, though not particularly sleepy. I seem to have been trapped in a sort of mushy haze. I just haven’t been “with it”. I have had very little physical or mental energy. Whenever I have been seated I have found my eyes closing: not so much needing to fall asleep, more a case of not being bothered with or by anything. It has been a peculiar state to inhabit.
I did fall asleep this afternoon but I still didn’t feel refreshed afterwards. However, I think this is the first period that I have had like this. I sincerely hope it doesn’t happen often, ‘cos it ain’t much fun! Oh, I forgot for a moment, that’s frequently the case with Fibromyalgia, the fun part (is there one?) is not much in evidence.
Writing a blog post. Easy enough to do. Doesn’t take long. No, it doesn’t. Usually. Only this morning turned out not to be “usually”.
For the past few days I have been a bit tired. Now, I say “a bit” because it hasn’t been the bone-aching tiredness and it hasn’t been the “walking into a wall” exhaustion. I have simply felt tired and occasionally had a doze. Definitely nothing major.
Well, this morning saw the return of a phenomenon that occurred during the first few weeks after Fibro had made its unremarkable appearance. I was typing a post for my blog – it was only a short post, ending up at 261 words – when I suddenly realised I had been asleep. My iPad had switched off so I had slept for at least a couple of minutes.
Upon coming to, I immediately put down my iPad, walked over to the sofa and lay down. I fell asleep in less than a minute, I think, but woke just a few minutes later when Peter entered the room. After exchanging a few words with him I immediately entered the Land of Nod where I remained happily for two hours! Upon waking, I couldn’t remember what I had been doing on my iPad. It was only when I picked it up some time later that I saw the half-written post. So, instead of taking me a few minutes, the blog post took several hours! That’s what Fibro can do for you.
As I remarked to Peter, I don’t know about procrastination being the thief of time, I think Fibromyalgia is the thief of time.