And Still The Stress Continues

Weird, isn't it?
Weird, isn’t it?**

My mother is still in hospital, although she is treating it like a pinball machine! You know what I mean? You zap the ball and it bounces from one place to another and you never know where it’s going to end up? Yep, that’s the one, except in her version you are trundled from a side room to the main part of the ward, then off to another ward. Oh! Back again! Into the main section? Nope, into a side room. You get the picture, I’m sure. Add to this the new problems that arise, then disappear, only to be replaced by newer things that are even more worrying.

So, yes, the stress continues. Only now, my ability to cope with that stress is beginning to fail. And we know what that means, don’t we, children? Yes! Fibromyalgia kicks in, alongside anxiety attacks. The standby medicine is close at hand, although I have only had to resort to it once. However, tiredness and fatigue are both beginning to be regular features of my days, together with the heightened tinnitus.

I am trying to lessen the pressure that I tend to put upon myself. I finished my craft project for this week’s swap in plenty of time and I am just picking up and working on whatever other crafty thing takes my fancy. By doing that, I am getting maximum enjoyment of my crafting activities with minimum stress. However, there are some things that have to be done at particular times and I have a few of those waiting in the wings. I am hoping that the spots of Fibre Fog that I’ve had don’t increase and make dealing with practical things, a hard slog.

All things considered, I am getting off lightly where the Fibro is concerned and, as ever, I am very grateful for that. For the time being, as long as I can sleep when I need to, and feel fairly refreshed afterwards, it doesn’t add to my difficulty in coping with the stress of the moment. Long may that continue.

** If you are wondering about the photo, it is of a strange looking building in Singapore which I struggled to photograph in any way that shows its strange appearance. It was covered in 3-D triangular pieces of metal which looked something like the protective spines of an animal. See, I can’t even describe it very well!

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More About Stress And Fibromyalgia

Winny and Luna: my "granddogs"!
Winny and Luna: my “granddogs”!

Well, it has been quite a stressful week. It has also been a physically tiring week.

All things considered, the Fibromyalgia has behaved pretty well this week. Admittedly fatigue clobbered me as I was walking from the hospital car park to the ward where my mother was an in-patient, and its effects were still present the following morning, but things could have been so much worse.

The main symptoms I have had this week are tiredness and tinnitus. The tinnitus continues to intrude more than usual, making it feel particularly unpleasant. As for the tiredness, it hasn’t been as debilitating as I have known it to be at other times, and for that I am thankful. I have also had Fibro Fog at times this week. It hasn’t been mind-numbingly severe, but there have been quite a few occasions when I haven’t been able to take in what someone has said to me. Usually, being told a second time has been enough for me to absorb what was being said, thank goodness. I need to be near the top of my game, at the moment, if possible. There are decisions to be made concerning my mother and I am the one who is being asked to make them.

With so many things going on, I know that I need to take jolly good care of myself in order to have a fighting chance of coping with the mental and physical challenges. To this end, for the time being my emphasis will be on what I need to do to help me cope. I am working on a craft project for a swap that is taking place during the coming week. It could feel like a lot of pressure, but it doesn’t. I have made excellent progress and am sure that it will be finished in time for me to meet the deadline. It helps that I am enjoying making it, so it’s a bit of a stress-buster. There are also a couple of family events in my diary for this week. I have decided, as firmly as I realistically can, that I shall fulfil those. Anything else in my diary may well be ignored unless or until I have enough mental or physical energy to cope with them.

With so much going on, my low dose of Amitriptyline seems to be working extremely well. There have been a couple of times during the past week when I have considered using my standby medication, although I haven’t actually done so. If life and Fibromyalgia continue along these lines, I think I should be able to cope.

Watch this space!

We Could Be Approaching Open Season

Fascinating building in Singapore
Fascinating building in Singapore

Things have changed a bit since my last post. The Fibromyalgia is not peeping around a corner, it has come out into the open. The fatigue I was experiencing at the time of my last post, has continued and worsened. It has begun to intrude into daily life by stopping me going to my regular activities. I have been resting quite a bit and, for the last few days, I have slept during the day: sometimes just once, sometimes more.

The fatigue can be very frustrating. I sit in an armchair, after having just slept and rested, then decide to do a small chore and I’m back to being exhausted again. Feeling so fatigued isn’t the same as feeling tired. Fatigue makes me feel quite unwell and desperate to lie down and sleep. If a space has to be cleared for me to be able to lie on the sofa, it can make me feel worse as my brain and body cease working in harmony. My brain can’t seem to work out what has to be done. That leads to frustration because I am so desperate to lie down and sleep but can’t figure out how to arrange things so that I can rest.

Another symptom that has been happening is Fibro Fog. This is made worse because I don’t always realise that it is happening. I start to do a chore that involves me having to use my brain and I make a real mess of it. It seems as though my brain is telling me to do the complete opposite of what I actually should do. I don’t always realise that it has been happening and end up being surprised by the mistakes that I have made.

Although the fatigue has worsened and the Fibro Fog is being a nuisance, my Fibro life is not too bad at the moment… thank goodness!

Peeping Round The Corner

Singaporean architecture
Singaporean architecture

The fact that I haven’t posted for a while is no bad thing. The gap is due to me going out and about and doing things… and definitely not counting spoons!

Oh my! It has been a great feeling, so liberating.

The last few days haven’t been quite so wonderful. I hurt my back last week and have been struggling to cope with the pain and restricted movement. I have also had bouts of tiredness: not the all-encompassing exhaustion that I was having a while ago, thank goodness, but more the sort of tiredness that just needs sleep to sort it out. It has been a bit awkward, but certainly not overwhelming. Although the last couple of days have been worse than last week, I am hopeful that the Amitriptyline will continue to keep the symptoms of my Fibromyalgia at bay. The Amitriptyline will have its hands full, one way or another, but I have decided that my cup is half full this week, rather than half empty: Optimism Rules!

And There It Was… Gone.

Palmyra, Syria
Palmyra, Syria

During the last few days I have been feeling a little tired. It has taken me a while to get going in the morning as I have struggled to wake up properly. I have also dozed off in the armchair several times. It hasn’t been particularly bad, though. It’s been almost as though Fibromyalgia was knocking at the door and saying “Don’t forget me. I’m still here.” Despite that, I have pretty much been able to carry on with my everyday life, apart from yesterday: I overslept and had only been awake for a few minutes when Elizabeth arrived. She already knew that there was a possibility that I wouldn’t be able to go out to play, so she wasn’t particularly surprised. She was collecting the box I made on a course with her recently, to be included in a forthcoming exhibition, so at least her journey wasn’t wasted.

As the day wore on, I had more energy although it wasn’t up to recent levels. I was feeling quite lacklustre. This morning it, again, took a while for me to start firing on all cylinders. I had a few tasks that I had planned for today so I spent a few minutes deciding what order to do them in. Everything went well until lunchtime. I had been doing some sewing and felt that I needed to stop and have a cup of coffee, and a short rest.

That short rest took longer than I had anticipated – falling asleep in the chair can have that effect! When I awoke I had to struggle to stay awake and it took a mammoth effort to get out of the chair. It didn’t help that I was beginning to get symptoms of a migraine. I took my migraine medication and battled to sort the newly-washed laundry and hang it to dry. As it was, I only managed to deal with the large items, the small stuff is sitting in the laundry basket glaring at me as I type this. How is it that inanimate objects can make a person feel guilty?

My energy has simply disappeared. My arms and legs feel swollen and heavy, like lead. It feels as though my neck can barely hold up my head. The effort needed to expand my chest when I breathe is just too much to contemplate, so my breathing is shallow, which probably doesn’t help my energy levels. I had almost forgotten how this lack of energy felt but I’m being well and truly reminded of it now.

Somehow, I don’t think the lawn will get mown this afternoon.

Hmm… I wonder

Electric tree in Singapore
Electric tree in Singapore

It’s been a quiet week, here in Bossymamma’s Fibroland. We like those: quiet weeks. We are perfectly happy to have a quiet week, every week.

As far as the Fibromyalgia is concerned, there really hasn’t been much happening. All that I have noticed is that I have been feeling a little tired. In fact, I have dozed in the chair several times this week. That is unusual as, for a couple of months or so, I haven’t been falling asleep during the day. However, I am not overly concerned: it is just a little tiredness, after all. I haven’t felt the bone-aching exhaustion or fatigue for a while now.

With the re-emergence of the tiredness, I have wondered if the Fibro is getting ready for another onslaught. Although I have wondered about it, I have not worried about it. At the moment, I am able to pretty much live my life they way that I could BF i.e. before Fibro, and I am making the most of it.

Well, I Never Expected That!

Birds Over The Bosphorus
Birds Over The Bosphorus

This post will be slightly different from my recent ones. In fact, it should be brighter and more positive. You will probably have guessed the reason for e change but, in case you haven’t, allow me to enlighten you…

I have just had several fairly good days! It’s great, isn’t it? It has done me a heap of good realising that I am still able to have days when I feel almost like the real me, rather than the Fibro me.

Although the days have been fairly good, it doesn’t mean that I haven’t been having symptoms. Actually, I’ve had quite a few of those pesky things including back pain, loss of sensation in my fingers (when I was hand sewing during a class that a friend and I attended), sore fingers, Fibro fog, pain around my left hip and in my left upper arm, generally aching in much of my body, freezing cold hands and feet, tiredness and fatigue. Oh! And a raging thirst due to the Amitriptyline. However, it has been easily manageable most of the time. I think that as time goes on and more symptoms appear, I am learning to cope with having Fibro because my knowledge and experience of Fibro are growing. Well, you know that they say: “Knowledge is power”. Also, most of the symptoms I am getting, apart from the tiredness and the fatigue, are tolerable as they are not severe and I am very grateful for that.

I think that learning to live with Fibro is hugely important and I am trying to do that. I can recognise when I am going to be assaulted by tiredness and exhaustion by the way in which I start yawning: there is a specific way in which I yawn at those times. Only this morning I was able to recognise the signs and scurry off home before the tiredness hit. Also, when I am becoming over-tired, I begin to suffer pain in the thoracic region of my spine, so I know to take appropriate action.

It is taking me a while to learn to live with Fibro but at least I am heading in the right direction. Mind you, I could do with a crystal ball to tell me when would be the best time, Fibro-wise, to visit my sister in Adelaide. The trip will be challenging for all sorts of reasons and there won’t be anyone around to help me, particularly if I have a Fibro flare while I’m there. Hmmm. Scary stuff!

And The Beat Goes On

View from Aphrodisias
View from Aphrodisias

I’m not sure whether this period of prolonged fatigue that I am in is due to a Fibro Flare or the change in my medication.

It is now two and half weeks since I began to feel so completely drained of energy. The chest infection that I believe was the main cause has completely cleared and gone away but the fatigue has remained. In fact, it seems to be slightly worse than it was last week, although that may just be my memory of how I was last week.

Little Sis has been here since Friday morning but we have hardly been able to do anything because I have been feeling so ennervated. The most I have been able to manage is to get myself washed and dressed and, after resting for a while, dragging myself out to the car to be driven somewhere to have lunch. Luckily, Little Sis was aware that this was likely to be the case before she embarked on the long haul up the M5 and M6 from Somerset. Actually, I think that she has been enjoying being able to sit here and read without me constantly interrupting her!

As well as the almost constant weariness, I have also noticed that I am suffering dizzy spells more frequently. I’m sure that the dizziness is due to the Fibro rather than migraine, as it has been markedly different. The dizziness appears to be in my eyes rather than elsewhere in my head: more of a disturbance of my vision than my balance. Although, having said that, often it has seemed to affect my balance as well. I am not explaining it well but, in my defence, it is a strange phenomenon to describe in words.

Another effect of the tiredness has been a lack of appetite. We usually eat our main meal in the evenings but, during this flare-up, I have found that by the time the evening comes I don’t want to eat. I think I am too weary to manage the effort required to eat, plus the mere thought of a main meal engenders feelings of nausea. This has meant that I have tended to eat a poor, unbalanced diet. The best I can manage is a little fruit, or a piece of cheese plus assorted snack foods. I suspect that the poor diet and tiredness are, together, creating a vicious circle which needs to be broken – the only trouble is that I don’t have the mental or physical energy to do it.

When you add to all that the other symptoms that I am having life becomes very tedious. My hands and feet are frozen one minute then burning hot the next, pain is coming to my chest and all three areas of my spine, I’m having pain in my upper arms and my knees and I am quite short-tempered. Put simply, I’m not much fun to be around at the moment!

Well, I Didn’t Know That!

April Sunrise
April Sunrise

You find me, today, still languishing in the confines of a Fibro Flare. My memory isn’t very reliable at the moment, but I think this is the first flare that I have suffered since the onset of the condition in August/September last year. As you may imagine, there is an awful lot that I didn’t know about Fibro Flares, and I don’t wish to contemplate how much more I have still to discover. So, what didn’t I know?

I didn’t know that I could be so fatigued that even thinking would take more effort than it was possible to muster. It takes a huge amount of effort to formulate thoughts or ideas, and, as for actually putting them into words…

I didn’t know that I could be so fatigued that I would feel desperate for Peter or A.N. Other to know instinctively what I wanted to say so as to avoid the need for me to run the equivalent of a marathon by trying to put it into words.

I didn’t know that making my mouth and vocal chords work in harmony to convey my meaning could require so much effort that I would be able to actually feel the energy pouring out of me and leaving a metaphorical mess on the floor.

I didn’t know that I would struggle to say a straightforward sentence because my mind couldn’t keep up with ordinary, everyday things happening around me.

I didn’t know that taking something from the back of a shelf in the fridge would leave me on my knees, unable to close the door of the fridge, because I couldn’t move my arm because I was so utterly exhausted.

I didn’t know that, when I did manage to speak, it would rarely be louder than a hoarse whisper. Neither did I know that just three or four words could rob me of breath for more than a minute.

I didn’t realise how much effort is needed to even listen to another person. If someone says more than a few words, or speaks at the wrong speed, I have no hope of keeping up with them and, because my brain is so ‘foggy’ I can’t even guess what they were talking about.

I didn’t realise that being so worn out would make me so crotchety. It is easy to become sorely frustrated when the person I am speaking to hasn’t anticipated exactly what I wanted to say. Don’t these people understand that they are supposed to know what I am too exhausted to be able to even think? No, they don’t understand – why should they?

I didn’t know that I could be burning hot and sweating profusely, whilst my fingers and toes were frozen to the core. Nor did I know that the situation could change so quickly so that my body was desperately cold and my fingers and toes swollen and sore because they had heated up too quickly.

I didn’t know how desperate I would feel because of my complete lack of energy. I used to think that I knew a bit about being tired. Hah! In the words of a character from one of my all-time favourite TV programmes (Hogan’s Heroes): “I know noth-ing!”

Hello! Can You Hear Me?

Turkish sea view

 

You may have guessed that yesterday was not a “good day” for me. Actually it turned out to be a hugely better day than either Saturday or Sunday, but it still wasn’t good. I did manage to stay awake for much of the day but I wasn’t up to doing much. The sum total of my achievements for yesterday was:

  1. Writing my Fibro Diary post
  2. Knitting three rows of a child’s hat in the morning
  3. Knitting four rows of said child’s hat in the evening (I shouldn’t have knitted the fourth, it was a row “too far”).

During the day I spent some time watching trashy TV programmes and some time online. It was during one of the online periods that I read a post on Facebook, ostensibly written by Fibromyalgia. It was on the Fibromyalgia UKĀ Facebook page: https://www.facebook.com/pages/Fibromyalgia-UK/127650910695587?fref=nf

It was quite a lengthy piece and I don’t intend to reproduce the entire thing here. However, I did request, and was granted, permission to use some of it. So, here goes:

Hi….My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun?
I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!

I hear you’re going to see a doctor … You will be put on pain pills, sleeping pills, energy pills, … given a TENs unit, get massaged… you cry to the doctor how debilitating life is every day.

Your family, friends… will all listen to you… hearing about how I make you feel, and that I’m a debilitating disease…while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

Hmmm.

I have edited the piece removing sections to make it more relevant to my situation. Please remember, though, that Fibro is different for each sufferer. Remember also that it’s not just the person with Fibro who suffers, but also those closest to her or him.

I hope that reading both this and yesterday’s posts will help you to understand a bit more about how it feels to have Fibromyalgia. And I sincerely hope that you are never affected by it.