Yesterday I clicked on a link about Fibromyalgia that I saw on Facebook. A friend, who has had Fibro far longer than I, had shared this LINK to another Fibro-related blog. I rarely look at things about Fibro online, or elsewhere, unless there is something specific I want to research. However, something drew me to find out more.
When I clicked through to the blog and read the post, a light bulb went on inside my head! I could identify with what was being said. I don’t think I had ever really registered when something like this happens inside my head, but now someone else was talking about it… and it all made sense. Admittedly, and very fortunately, I don’t experience anything as bad as The Girl With Five Lads, but I certainly go through some of it. There are definitely times when it feels as though there is too much happening. Too much information. Too many directions I’m being pulled in. Too much to cope with.
“We all have times like those” you might say. “My life is really stressful.” “I’m always multi-tasking.” But, it’s not the same. It’s not trying to do cook the dinner, make a phone call, empty the bin and go to the loo, all at the same time. It’s trying to make sense of something that should be really straightforward, something which always has been simple before, but being unable to because you are being bombarded by huge amounts of information in different formats, at different volumes and speeds, in several different languages, all at the same time. The brain just wants to explode and then hide itself in a corner, so it decides to send you into a massive panic and tries desperately hard to make you crumple into tears. If you’re really lucky you’ll eventually be able to work out how to say “Stop”. And, if you’re luckier still, someone will be around who can help you to escape the attack of information, and give you a breathing space, a chance to calm down and recover.
Do you know the worst part about it? It’s feeling so pathetic because you “ought” to be able to filter all those ordinary things that have been attacking your senses and understand what’s going on – but you just can’t.
I am pleased to say that this week hasn’t been too bad. Yes, there’s been fatigue, but it has simply been a nuisance rather than dragging me way down. Also, pain has been minimal. I should add, at this point, that I began taking the turmeric capsules last weekend. Consequently, I cannot be sure whether it is the Fibro that has been better this week, or whether the turmeric is a wonder product that began annihilating it as soon as I popped the first capsule in my mouth! I think it more likely to be coincidence.
What I have learned this week is that the Fibro is very reactive to environment and stress, even in the very short term.
Peter and I were busy working on a particular task, one day this week. Unfortunately, due to circumstances beyond the control of either of us, things were not going as well as we had hoped – you know the sort of thing: one step forward, two steps back. I began to feel frustrated which led to feelings of agitation, then on to tiredness, verging on exhaustion, plus a general feeling of not being well. I said I was having a break and went to sit down. After 10 or 15 minutes, all of those feelings I had been experiencing were calming down and I felt able to face the task again. It had been an odd sensation, one which I wasn’t aware of having felt previously. Understandably, Peter had misread the signs I was apparently giving off. He thought that I was feeling too unwell to continue and was, I think, quite concerned for my wellbeing.
I think that what had happened was that I had been stressed and overwhelmed by the situation, which had led to me suffering several Fibro symptoms, albeit for a very short time. Once I had taken myself out of the situation and had some “time out”, I quickly recovered my equilibrium.
The experience was a valuable lesson about how stress can bring on a sort of ‘mini’ Fibro attack and, also, how taking “time out” for just a short while can alleviate those symptoms.
Well, given the title of this post, you won’t be surprised to hear that the Fibro has been up and down this week. Monday was mainly up then Tuesday was down. Move on to Wednesday and the Fibro was behaving itself pretty well.
Peter and I spent most of Wednesday at his mother’s home, after having delivered a car-load of charity donations en route. RB (Peter’s nickname for his mother) has asked me to help her with sorting and disposing of some of the things in her home. Her health has been fragile recently and it has given her plenty of time to fret over all sorts of things – something that I and, probably, many people with a chronic condition can identify with! Although I have far less energy than before the Fibro, decluttering is one of my favourite hobbies – especially when it is someone else’s clutter! The advantage of helping RB is that, in her current state of health, she needs to be careful not to overdo things, which means that I also get to rest.
RB was so concerned about things that she had convinced herself the room we were planning to sort was in a terrible state. In fact, it was far better than I had anticipated. Most of the chaos was superficial, meaning that very little energy was needed to make a huge difference. I was glad about that because, although I felt considerably better than I had the previous day, I could feel the fatigue waiting to pounce. However, I took things carefully and managed to last the day.
Cue, Thursday and abysmal energy levels. I spent most of the day in my armchair, doing easy tasks. Whenever I moved from the chair, the pain in the thoracic area of my back (my particular alarm bell for impending extreme fatigue) came on almost immediately. Moving around also made me feel unwell, due to the lack of energy.
My goodness, those rubber balls have been busy bouncing up and down this week, haven’t they?
Friday came and, with it, an increase in my ability to do things. I was still fatigued and struggled to do things but I did manage to do a full grocery shop in the morning, which was just as well as the cupboards were bare.
In the afternoon, I was due to see my GP, Dr. Azeer. I have to give him bonus points for not letting his welcoming smile slip when I told him I had a list. It was a successful visit during which we discussed the use of turmeric to ease pain. I wanted to check that taking turmeric capsules would not interfere with any of my medication and he confirmed that to be the case. I told him I had tried cannabis oil and it had not helped but that I thought it worth trying turmeric, especially having heard good things about it from several sources. I began taking the turmeric on Friday evening so, watch this space for news of if or how it affects my pain levels.
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?
My grandchildren make my heart sing. Simple as that.
However, there is one thing they should bear in mind about having a Nana who has Fibro…
When I want to blow on their tummy, they should just give in and let it happen. If I have to struggle to pin them down to do the dastardly deed, it exhausts me and I suffer quite a bit of discomfort after they have gone home.
While I was lying in bed awake this morning, the subject of pain came into my mind – not really surprising as I had been in the process of turning over, which is a painful process. I started thinking about the pain that I feel, the different places it manifests itself and how varied it is in character and ‘feel’.
I thought I would insert an image here to show the trigger points associated with Fibro: enter problem number 1. Everyone with Fibro experiences it differently and, although there are several known trigger points, not everyone has them. None of the images I found showed all of the places where I experience pain. (I’m not saying that the images don’t exist, just that I couldn’t find what I was looking for.)
These are my feet. Fat. Puffy. Ugly. Feet.
In the very early days of my diagnosis I didn’t have any particular fibro-related problems with my feet. I had had hot, swollen feet for many years so, for a while, it was difficult to tell the difference between my pre- and post- diagnosis discomfort. However, that is no longer the case.
Some time ago, I began to feel pains in both feet which I could only explain to people felt as though I was walking on shards of glass, even if I was sitting down – a feeling that was definitely different to anything I had felt pre-diagnosis. Gradually that sensation changed to more of a stabbing pain – feeling as though someone was continually piercing me with a knife in both feet. Sometimes the pain in my feet is so bad that it makes walking nigh on impossible: the pressure involved in actually placing the sole of my foot on a hard surface becomes pretty hard to bear. I try to have my feet elevated when I sit, to ease the discomfort, but when it is particularly bad, it really only eases when I am lying in bed, relaxed.
Oh, this is a fun one! Where do I start? Well… The pain comes in several different ways in various areas of, in particular, my left arm. Sometimes the pain begins in the tips of the fingers of my left hand, goes all the way up through the left arm to my shoulder, all around the thoracic region of my trunk, across my neck, through my right shoulder and all the way down to the tips of the fingers of my right hand. Luckily, that doesn’t happen too often. More usually, the pain is concentrated in my left arm and shoulder, appearing also in my right arm and shoulder if I am feeling particularly tired.
Most of the time, I have pain in my upper left arm and shoulder which feels similar to a pulled muscle. When it becomes more severe, I have difficulty lifting, or even moving, my left arm. When the pain appears in the lower left arm, it has the feel of pain that emanates from a muscle, but seems to be in the wrong place. Those pains are unpleasant, but the worst is when I feel pain on the outside of both upper arms which feels as though I am being squeezed and squashed between two thick metal discs on long rods. I think the reason why this sensation is so horrid is because it feels as though I am being restrained and it leads to me feeling slightly claustrophobic. It also feels weird.
My upper left arm is also sometimes painful when I shower. Occasionally, feeling water splashing on my skin causes pain but, more usually, it seems to be a reaction to the sensation of the shower puff rubbing across the skin. Much as I like using a shower puff, I have invested in a couple of soft baby sponges, which appear to be alleviating the problem.
I touched on this in the previous section. As well as the pain that creeps across from my left arm, pain also develops independently in my neck. It creates a tired feeling in my neck which, in turn, makes my head seem so heavy that it’s as though my neck is unlikely to be able to bear its weight. I think this leads to fatigue taking hold, although it may be that the fatigue is what causes the phenomenon.
Back and Chest
I’ve put these together because, often, pain appears in both simultaneously. This happens, particularly, when I am reaching the point of overdoing things. The location of the pain in the chest is directly opposite where it is in the thoracic region of my spine. The pain doesn’t spread across the area, it remains stationary. In the chest, it manifests as a tightness, similar to the tension that one can feel in an anxiety attack. In my back, the pain is very like that which I feel when I have a chest infection. In fact, this was the first Fibro pain that I experienced and was the initial symptom that led my GP to make the Fibro diagnosis.
As you can see, the pain pops up all over the place, and in several guises. The pain is debilitating to a greater or lesser degree. Sometimes, it appears all over my body, making everything hard to do: sitting, standing, walking, bending. At other times, it is more manageable. However it feels, I try to carry on with my life, to a greater or lesser degree, adapting how I do things. I’m not ready to give in to the pain completely, even if I do groan when it hurts!
After all the activity of the holiday, it was good to be home. I definitely felt the need to relax in that way which, for me, only really seems possible at home. It’s a similar feeling to the one that comes when I am feeling a lot of fibro pain and fatigue and can finally collapse into bed.
I was hopeful that, on Saturday morning, Little Sis and I would be able to trot into Manchester to a shop that we were each keen to go to. Alas, when Saturday dawned – far too early – it was obvious that Manchester was not going to be graced with our presence. I was feeling something like fatigue, although not exactly, but also an unusual flatness of mood – not depression, not apathy. I don’t know what it was or how to describe it. However, it held me in its grasp all day – not only was I unable to go out due to fatigue, I didn’t even want to think about going out, let alone actually go out. It was no fun for Little Sis, which saddens me somewhat, but I am so very lucky because, even so, I know it’s OK.
Little Sis went home early on Sunday, as planned, and I had another quiet day. I was no longer in the grip of Saturday’s strange mood, but I was still lacking much vim and vigour. Various pains came and went, then came back and went again. All in all, it was a pretty unremarkable day.
Along comes Monday, and with it more changes. This time things were more “normal”. When I say “normal”, what I really mean is “fibro normal”, in other words, intermittent fatigue, accompanied by sporadic aches and pains. I’m beginning to wonder whether holidays are worth all the bother.
Little Sis and I have returned from our holiday. Yesterday, the last of our trip, was rather full. It included a lunch stop in the beautiful spa town of Harrogate in Yorkshire. It was somewhat unexpected as our driver had led us to believe that he would be stopping in Ripon!
Now, I really like Harrogate. It has a character all its own, which is enhanced by the lovely architecture. If you’ve never been to Harrogate, there’s something you need to know… It’s hilly, very hilly and, if you go by coach, you will likely be dropped off in Montpelier – and any “escape” from Montpelier necessitates going uphill, in just about every direction!
Little Sis and I set off up the hill we needed to ascend to reach our destination. It felt like a lot to ask of my body after the pains, fatigue and exertions of the week, but I managed to get to the place we were aiming for by taking it steady. As the week wore on, I had noticed my walking getting progressively slower. It is dispiriting to always be a few steps behind one’s companion, but I tried not to dwell on that. Instead, I concentrated on the mantra that “slow and steady wins the race” and it seemed to work. By concentrating on walking one step at a time, my mind was too busy to think of what was causing me to move slowly. Slow and steady is good in another way, as it allows me to be careful about where and how I place my left arm, whilst walking. During times of arm pain, I find that walking exacerbates it. I think it is due to the arm needing support to prevent the combination of its weight and the vibrations caused by walking. I wonder if other FibroWarriors find that?
Little Sis and I are still on our holiday. Yesterday we sampled the delights of Hartlepool on a half-day excursion.
We had spent quite some time thinking, discussing and planning what we would do and had finally decided to visit the Art Gallery. As we alighted the coach, we were directly opposite the square where the gallery is situated so had only to walk about 100 yards to go inside. When we left we headed for the shopping centre which was directly opposite the square, right by where the driver had dropped us off.
We found a coffee shop where we stopped for a while, then we wandered around some of the shopping centre, calling in at just three or four shops. By the time we had done that, I was becoming very fatigued and the telltale back pain was starting. In view of that, we found a bench and sat down to wait out the last hour before the coach was due to pick us up.
During the short drive back to the hotel I rested. There was an optional excusoin in the afternoon which Little Sis and I had talked about going on. However, I realised that I was too lacking in energy, so Little Sis decided to go without me.
We ate the lunch we had brought back with us and Little Sis departed. After spending some time online, I lay down to rest. I fell asleep soon after, waking when Little Sis returned. I didn’t stay awake for long, though. Two and a quarter hours later, I was wakened by the telephone!
Even though I had slept for much of the afternoon, I also slept well overnight. I think going out each day this week has drained me to the extent that I haven’t been able to fully recharge my batteries. I think the cumulative effect of the past several days has hit me. I don’t know whether it has happened because of the bad patch I have had, or whether I have, perhaps, reached a stage where a holiday like this is simply too much to cope with in a short space of time. I think I shall reserve judgment until I have tried another coach holiday. Maybe that will give me a better idea…