It Was A Cold, Dark Midwinter Night…

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A cold, dark midwinter night

Actually, no, it wasn’t, it was a warm, clammy, near midsummer night, but you get what I mean.

As I type this, it is Sunday morning and the clock reads 02:13. I have just sat down with a cup of coffee and a chocolate caramel biscuit. I got up 10 minutes ago, having retired at 9.00 o’clock last night because I was so tired it was almost literally painful. Just a few hours earlier, FPR had commented on the fact that I had been more awake than on the previous two days. S*d’s Law has had a very busy week, this week.

I had my assessment for a Blue Disabled Parking Badge on Wednesday of this past week. I had been anxious leading up to the day of the assessment but adrenaline saw me through – probably too well. The Occupational Therapist I saw informed me that it will take about 14 days for the matrix to calculate whether or not I am entitled to a Badge.

I was a bit tired for the rest of the day, but not overly so: I suspect the adrenaline was still working its magic. However, Thursday and Friday were completely written off. In fact, on Thursday, I could barely keep my eyes open. I was so fatigued it was making me nauseous. I managed to crawl into bed at 8.30pm – and I mean ‘crawl’. The thought of having to climb the stairs almost had me in tears. Somehow I made it into bed whereupon I slept. In fact, apart from a ‘comfort’ visit, I didn’t wake until late.

Friday wasn’t quite as bad, but I wasn’t able to do much. I did manage to do a little food shopping and a few rows of knitting, but that was about it. Oh, and I stayed up late. When I say ‘late’, I mean later than the previous night!

On Saturday, I had an appointment with the chiropodist. I have reached the point where I am too stiff to be able to cut my toenails. I don’t want to ask FPR to do them for various reasons, not the least of which is his eyesight. I don’t want to say he is myopic because of the connotations of that word, but he does have very short sight. Anyway, I digress. I attended the appointment and returned home. I spent the day awake but doing little, apart from arranging my forthcoming journey to see my baby son and his partner. I didn’t feel particularly fatigued, but neither did I feel like doing much. After dinner, I knitted just three rows of a very small item that I have on my needles before becoming exhausted. I sat quietly, becoming more tired and feeling more unwell until I managed to make the decision to go to bed. [NB I have worded that sentence like that deliberately as it’s how it happened. It took an inordinate amount of mental energy to actually realise and then decide that I had to go to bed.]

S*d’s Law was also at work earlier in the week. Last Sunday evening I had planned to meet a friend at a film screening in Longsight and to give another friend a lift home afterwards. I had dovetailed my entire weekend to give me the best possible chance of not having to cancel and everything was going well… Then our next-door neighbours’ daughter decided to play with her karaoke machine: outside, about 15 feet from our living room window, from around 3.00pm to 7.00pm – when I needed to sleep! I could have cried. I hadn’t expected that I would need to sleep, although, when I realised that I did need to, I didn’t perceive it as a particular problem as I had plenty of time. However, given that the ‘performance’ had started and then continued until 7.00pm, it completely scuppered any chance I had of going out, as I needed to leave soon after 6.00. I was sorely disappointed, especially as it meant letting down two friends. I am so very lucky to have understanding friends but it doesn’t stop me feeling embarrassed and ashamed at having to let them down.

S*d’s Law and Fibromyalgia (and, of course ME/CFS, if I do have it) have a lot to answer for!

 

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Moving Along

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Beautiful reflections, seen on the journey from Honningsvag to North Cape, Norway

This week is all about moving along – life moving along and me… trying to!

Earlier in the week I went to see the Amazing Dr A. He looked surprised when he saw me hobbling in with my walking stick, understandably so. The last time I saw him, earlier this year, I was far more mobile but things have gone downhill since then. During my appointment he wrote a short letter in support of my application for a Blue Disabled Badge. I had, mistakenly, thought that the issuing authority would contact him for a report. However, when checking through the paperwork, I saw that I have to arrange for evidence from my GP. That d*mned Fibro Fog makes it so difficult to take in information. Grrr.

This evening, I decided to try walking to the postbox at the end of our road. I had a letter to post but didn’t want to have to use the car. I set off with my trusty walking stick at my new usual pace but it didn’t take long to slow down even more. I was shocked at how quickly I ended up walking so very slowly. I stopped to chat with a neighbour then continued on my way. I noticed that the camber of the pavement was making it more difficult for me to walk – I just couldn’t find my balance. I was going even more slowly and felt as though I was almost stationary on the final stretch, near the postbox. When I began the return journey it registered in my brain that I had been walking uphill. I could really feel a difference in my gait because of walking downhill. It isn’t much of a slope, but I definitely noticed the way it affected my walking.

Soon after leaving the postbox my left foot didn’t place well and I stumbled. You know when you lose your balance and you end up almost running because you can’t keep control of your feet? Well, that’s what was happening to me: I could feel myself heading for the edge of the pavement, towards the road. Yikes! It was scary. Somehow I managed to stop myself falling and to bring my left foot under control. I had to stop for a short while to gather myself. It had given me a fright. I set off again towards home. I was going extremely slowly but not tottering quite as much as on the way to the postbox. I decided to walk in the road because the camber of the pavement was causing me problems: it certainly helped, especially as my left foot was beginning to twist over. I can’t tell you how pleased and relieved I was to reach home!

Moving on, this week I have an assessment with an occupational therapist in relation to my application for a Blue Disabled Badge. I have been very anxious about the whole process: completing the online application form, fighting the fog to understand what is needed and now, also, the impending assessment appointment. The Amazing Dr A was very encouraging when I saw him but I still feel anxious. My boundaries have been shrinking because of my mobility difficulties and, without a Blue Badge, they are likely to shrink even more. It’s scary. I am pleased and grateful that FPR is coming with me to the assessment. He’ll have to wear his best “Calming Bossymamma Down” hat.

 

Gymnastics Competitions

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Taken by me at Taronga Zoo, Sydney. August 2013.

This week I splurged many of my precious spoons (Spoon Theory) on just one task: gymnastics. Specifically, jumping through hoops. More specifically, jumping through the particular hoops one has to negotiate when applying for a Blue Disabled Parking Badge (“Blue Badge“).

I first began researching eligibility for a Blue Badge several months ago. I don’t fulfil any of the criteria to automatically qualify for a Badge so I wanted time to think about and prepare my application. It’s a funny thing, part of my rôle as a Financial Assessment and Benefits Officer, was to complete countless forms of many different types. I used to joke with clients (I refuse to call people ‘Service Users’!) that on my gravestone would be inscribed the words “She could fill in forms” because I spent so much time filling in all those black boxes. You would think that applying for a Blue Badge for myself would be a doddle, wouldn’t you? Well, you’d be wrong. In common with many other people, when faced with an important form to complete regarding my own circumstances, I become really anxious and lacking in confidence. And, my goodness, did the Blue Badge application form do that for me…

I’m not sure of the reason for my anxiety being so acute. I think it may have been because I was worried that if I was refused a Badge, I wouldn’t be permitted to make another application for quite a while. The boundaries of my world have shrunk considerably over the last few months. I have lost a lot of confidence in myself and my ability to cope alone when I go out. I panic at the thought that I won’t find a parking space very close to where I need to go. Having had several falls and near misses, it feels as though I am more likely to fall than not whenever I walk outside. The whole situation is making me increasingly fearful of going out alone. I really do feel that I should have a Blue Badge.

I actually began the application process for a Badge several times, but I didn’t finish it. I would save what I had done online but then not complete it within the two week limit. I kept drafting and re-drafting my replies to two of the questions, worrying over them, asking FPR to read them and asking his opinion. It was a very stressful process. However, I finally screwed up my courage a few days ago and completed the entire form. And I even submitted it! I received an acknowledgement and an appointment for my assessment at the end of June. I printed a copy of my application, as I like to be able to see what I have written on official forms. Also, I wanted to send a copy of my application to the Amazing Dr Azeer. He and I had discussed my applying for a Blue Badge and he had said he would be happy to support my application. I felt it would be wise to send him up-to-date about my condition as I have deteriorated since my last consulation with him. I have been terribly efficient and written to the Amazing Dr Azeer, sending the copy.

Now all I have to do is wait for my assessment – and hope like mad for the decision to go in my favour. Fingers crossed!

Perm Any Two From Three

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My Grandchildren’s Favourite Team [Photograph from Burnley Football Club website]

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.

 

And Now, Here Is The Weather Forecast

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Warning sign on the outskirts of Longyearbyen, Spitsbergen, Svalbard

I was thinking, only fairly recently, that I seem to be escaping Fibro Fog. I had noticed signs of Fibro Fog soon after my diagnosis, but it hadn’t hung around long. Oh, how easy it is to deceive oneself! I was conveniently ignoring the more subtle manifestations of Fibro Fog. Actually, I don’t believe I was deliberately ignoring them: I simply wasn’t recognising them for what they were. As I look back, I reealise the signs were there, all along.

In my defence, I believe some of the problem is connected to the long-standing anxiety and depression that I have. I think there is a considerable overlap between the effects of those and the Fibro Fog: it really isn’t easy to define where one ends and the other begins. Mind you, it probably doesn’t matter, does it? Whatever you call what happens to my brain, the effects are pretty much the same.

Events this week have shown just how muzzy the workings of my brain now are. It has been a shock, both to FPR and to me. Throughout our relationship, it has tended to be me who has dealt with the admin-type stuff in the household, and it has worked well – until now… However, this week, we have both seen some of the strange mistakes I have made. Some of the mistakes are amusing, but some could (and almost did) have serious consequences. It is quite a concern. Not only that, but it is annihilating my self-esteem. I had already accepted that my ability to cope has shrivelled away, but now I have to face the fact that what is in my head is not necessarily the same as what I see, hear or say.

I feel like an idiot. It is difficult for me to trust or believe in myself so heaven only knows how FPR is going to cope with it.

Believe me, it ain’t nice.

What Does Pain Feel Like?

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I think this image is probably a pretty good place to start!

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.)

Feet

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Bossy Feet!

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.

Arms

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.

Neck

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!

 

A Quick Poke Around The Edges

Similar to my current surroundings

Similar to my current surroundings

Here I am, at four minutes past midnight, sitting in surroundings which bear more than a passing resemblance to the photo above.

It has been a challenging week, or so, in a variety of ways, including the edges of a certain medical condition which keep giving me a poke. For example, today the dizziness decided to make an appearance whilst I was transacting some business. It’s quite embarrassing, trying to cope with dizziness when there is a stranger in front of you, watching you and obviously wondering what on earth is going on. Luckily the attack passed quickly.

Then there have been the times when I’ve been explaining something that needs to be done but simply don’t have the word that I need. And, how about all those times when I’ve been discussing something with my partner, or someone else, and that dear miss, Ang Zya Tee, decides to butt in?

There have been other symptoms, as well, which have been nudging their way in at the edges of my being, rather like physical reminders of the beast sheltering in the background. Maybe the Fibromyalgia is getting wise to the ways of the adrenalin that has been rushing around my body for some time.

Admittedly, the adrenalin levels are most probably considerably lower than they were during most of August and all of September and October, but November has brought with it stresses and strains of its own, so I don’t want to count my chickens. All in all, though, I do feel much calmer than I have done of late, and that is probably why the Fibro is managing to poke me convincingly.

I am doing my best to take care of myself, particularly in relation to stress levels. I am choosing the least stressful option whenever possible as I think I’ve had enough stress to last a lifetime! We’ll have to see how well that works, won’t we?

Yesterday, Today, Tomorrow?

Hyde Park, Sydney

Hyde Park, Sydney

It’s a while since I posted anything here, isn’t it? The reason for radio silence is that, with regard to the Fibromyalgia, things have been uneventful. I have had tiredness and fatigue, but not to any extreme. I have also had some mild pain, which went as quickly as it appeared, and other bits and pieces of symptoms which are not worth mentioning. However, the tinnitus continues to intrude and, at times, can feel unbearable.

My main difficulties recently have been stress-related: anxiety and depression (A & D). Although I am aware that Fibro can cause A & D, I have suffered from both for very much longer than I have had Fibro. Yes, I know lots of people have Fibro for a very long time before it is diagnosed, but Dr. Azeer recognised mine for what it was, or is, within a few weeks of it appearing. Consequently I view A & D separately from the Fibro. Anyway, the A & D have been playing up because my stress levels have been high. I am hoping that, now I’m feeling less stressed, the A & D will ease. In the meantime, Dr. Azeer has suggested I take regular doses of my emergency medicine to help me through. Whilst I haven’t been doing so, I have been taking it more than I was before I saw him this week.

During my appointment with Dr. Azeer, we discussed how well the amitriptyline seems to be controlling my symptoms. We also discussed the well-known effects of stress on Fibro i.e. Fibro Flares. We agreed that, with everything that’s going on, I could be susceptible. However, I told him that I do not intend to spend my life worrying about what Fibro might do to me: I will deal with things as and when they arise. I refuse to use all my energy simply counting spoons.

(By the way, he had never heard of the Spoon Theory.)

Time For Musical Chairs

Luscious-looking lovely chocolates

Luscious-looking lovely chocolates

Life is the same, but it’s different. I still have a lot of very stressful “stuff” going on but it is changing shape. No, it’s not changing shape: what’s really happening is that one of the huge things is building to a crescendo. And it’s scary, really scary. As far as my health goes, it seems to be the “scary” that is causing the most problems, rather than the level of stress. Consequently, the Fibromyalgia is no longer in the driving seat. It has been relegated to the position of backseat driver, with anxiety doing the driving and depression sitting firmly in the navigator’s seat.

As far as the Fibro is concerned, my main problems are tiredness, fatigue, tinnitus and ocular migraine – but, they’re a doddle to cope with compared to everything else that’s going on. Thank goodness I have Peter around to support me: he is helping me more than he knows.

New Things Are Happening

Tree at Aphrodisias

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.