That’s Just The Way It Is

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Around St. Mary’s Cathedral, Sydney, July/August 2013

(Do you know, it takes me longer to find and decide upon the photograph for each post than to write the post?)

The weather has been very hot for the past couple of weeks and I am very fed up with it. Mind you, the people who are or have been closest to me would be amazed at how well I have coped with it. Believe me, hot weather and Bossymamma is not a good combination! I have always told people that my sons knew not to annoy me on a hot day because I was likely to explode at them. In fact, my Big Boy alluded to that, in a lighthearted way, when he and his family visited at the weekend. As for my Little Boy, he is probably dreading my impending visit!

I don’t know whether it is my advancing years, the Fibromyalgia, or a mixture of the two, but I seem to be coping with the heat far better than previously. I can’t begin to explain adequately how awful the heat usually makes me feel: it sucks every vestige of energy from me and makes me feel lousy. Actually, I don’t want to explain it, because of how dreadfully it affects me, so that is all I shall say about that.

To get back to the present, the heat seems to have triggered a major flare-up of the Fibro-related foot pain. It is particularly bad in my heels and often makes walking more difficult and more painful. The situation is made worse by the swelling in my feet, which I suffer in hot weather. I do take medication to reduce the swelling and I sit with my feet raised, whenever I can, but none of that helps enough. In fact, the pain has begun to manifest in my legs, in the three or four inches above my ankles. ‘Snot fair! Don’t like sore feet! Actually, the pain has been so intense, at times, that it has made me yelp. It used to be that the foot pain was at its worst soon after I retired to bed, but that is no longer the case. I think it is equally bad in or out of bed, at the moment. Sometimes it seems to be worse when I am in bed, but I don’t know if that is because there is less to distract me from it when I’m lying there. Whichever way you look at it, the foot pain is being very unpleasant at the moment.

Fatigue has also been problematic over the past couple of weeks. Obviously, it is impossible to know how much is attributable to the heat but, regardless of the cause, it has been challenging. Generally, when the fatigue is playing up, I can gauge when I have enough energy to deal with a task. However, that hasn’t been the case during this heatwave. When I have rested, I get up and start on the task I have set myself, only to find that my body can scarcely manage to move. There have been numerous times, recently, when my energy has simply evaporated. At those times, the lack of energy, the exhaustion, the fatigue, or whatever you want to call it, has been painful. I don’t mean that it causes pain but, rather, that it is the fatigue itself is painful. It has been difficult to cope with. I am used to my energy disappearing – I would say “disappearing in a puff of smoke” but there generally isn’t enough oomphf for it to manage doing that! – but the last couple of weeks have been a whole new ballgame. And, rather like the Football World Cup, I wish it wasn’t happening!

Amongst all this doom and gloom there is a metaphorical ray of sunshine: I have been granted a Blue Disabled Parking Badge! I can’t tell you how relieved I am. The whole application process caused me much anxiety. I knew that the state I am in should mean I am entitled to a Badge, but the process has been a challenge. I was so fearful of my application being rejected. My ability to go out and about has been severely limited because of the fatigue and the problems I have with walking, but I worried a lot about how well I would be able to put that across when making the application. It shouldn’t be like that and it makes me quite angry that disabled are put in that position.

When I was working, my job entailed completing all sorts of application forms for clients (I refuse to call people ‘service users’!). I had a very good success rate for Disability Living Allowance and Attendance Allowance claims as I knew how to put across the difficulties people had in a way that showed their entitlement. However, it’s a completely different matter when applying for something on one’s own behalf, as opposed to someone else’s. I suppose it’s because it is oneself who is affected by the results. When completing a form for someone else, it is very much easier to be objective than when applying for yourself. Even so, I think the ‘system’ makes things unnecessarily difficult for disabled people. During everyday life, people (whether able-bodied or disabled) look at ways that they can manage to do a particular thing but, when faced with something that requires proof of ability, or lack thereof, they have to ‘un’ think their solutions and focus on their difficulties. That is not easy. It may have taken years, with several increasingly complex ways of adapting their method to enable them to carry out that particular task. Not only is it difficult to think back and remember the difficulties you’ve had doing something, it’s also very depressing. You’re faced with the knowledge that there are lots of things you can’t do in the ‘normal’ way. Applying for any additional help is a gruelling task and one that it is not undertaken lightly.

Having clawed my way up onto my soapbox, I will now crawl down the least precarious route to tell you of one other thing that has happened since my last post.

Whilst sitting in the waiting room at the Amazing Dr. A’s surgery, prior to my appointment with him, I noticed a leaflet about something called the Staying Well Team. Upon reading said leaflet, I discovered that the team is there to help people with things to make their day-to-day lives easier or simpler. As my day-to-day life has changed so much recently, I decided I would give them a call. A lovely lady called Dawn explained that their main target age-group is the over 65s. However, in view of my difficulties, she said she would visit me to see if they could do anything to help. The visit went very well and she made several suggestions, most of which I thought were excellent. She is going to return with an Occupational Therapist with a view to my having a grab handle to help me cope with the step up to our side door, an extra bannister on the stairs and a folding seat in the shower. All of those will be wonderful as I am struggling in those three areas. She also offered me a toilet frame. hm. Not impressed. Really don’t want a toilet frame. Don’t like toilet frames. They make me think of people who are frail and about to ‘pop off’. They really are for Disabled People. And, yeuch, all those millions of corners which would fill up with nasty germy things – revolting! I am not at all houseproud, but toilet frames seem like really dirty, disgusting things. (Oh, crikey. What will I do if I reach the stage where I have to have one?) I was gratified that FPR was happy to have the equipment installed, as this house belongs to solely to him. I was also pleasantly surprised to hear that the equipment will not cost us anything.

Dawn also had questions and suggestions about social activities and said she will send me some information with my Well Being Plan. I emailed her after our meeting to ask about nail clipping services (as I don’t really want to pay £28.00 a time to a podiatrist to cut my nails!) and she has said she will include that information, too. Apparently the aim of the team is to delay the need for social care intervention. Whether that will be result  case remains to be seen but, so far, what the team provides is looking good. Watch this space!

 

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Getting Twitchy

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Part of an FPR masterpiece. (It is far better than this photograph shows!)

A new phenomenon has appeared on my Fibromyalgia (and ME/CFS?) journey and it has made me quite twitchy – literally, twitchy.

I have had intermittent bouts of Restless Legs Syndrome (RLS) for some time but now there’s a new kid on the block. Ladies and Gentlemen, please give a huge welcome and a massive ‘hello’ to muscle twitches, tensing of muscles and muscle spasms. I would ask them to take a bow but I don’t want to irritate them.

Involuntarily, the muscles in my body suddenly go tense for a couple of seconds or more, then most, but not all, of them relax. It’s those that don’t relax that have been causing problems. From being simply tensed, they then go into spasm. Yikes! T’ain’t nice! When they spasm the pain makes me yelp. The spasms occur in my calf muscles. When one happens my leg feels sort of paralysed. I don’t just mean that I can’t move the muscle (which, of course, I can’t), but that my lower leg goes numb. I know that sounds contradictory but, whilst I suffer pain from the muscle spasm, all feeling in the remaining part of my lower leg disappears and it just feels dead. I, or sometimes FPR, have to hold and support the calf muscle briefly, which seems to be enough to stimulate the muscle into relaxing – at least, it has up until now.

There doesn’t seem to be any particular stimulus that sets off the whole-body tensing so I don’t know what is best to do to try and avoid it happening. I find the experience rather unsettling which, I suppose, is due to its involuntary nature. Probably that is because it is me lacking the ability to control that action. It can be scary when you know that your body is doing something you have no control over. If I believed in alien beings I might be tempted to posit that my body had been invaded by one – but I don’t, so I won’t. Hmm. Must just be my body being alien, then, mustn’t it?

A Change Is As Good…

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Transiting the Kiel Canal. 19 April 2018

FPR and I yesterday returned from a little holiday to the southern Baltic. We were on a cruise with a cruise line that we have travelled with several times. Due to my state of health, amongst other things, we had to change our plans for various parts of the trip. Initially I had been going to drive us to Essex (the ship was departing from Tilbury), parking my car at the new home of my Baby Son and his partner. However it became clear that for me to drive that distance would be very challenging so we decided to travel to Tilbury via public transport. And that’s where the problems began!

Access to the coach which was to take us to London was via a set of very steep steps. I had been finding walking increasingly difficult and labour intensive, during the days leading up to the holiday. Consequently, when I tried to board the coach, I could barely lift my foot off the ground, let alone pull myself up the steps. Eventually, with help, I managed to get up the steps but the incident shocked and disappointed me.

Over the next couple of days I struggled on. I was finding it challenging to walk aboard ship. My balance was shot to pieces, I had quite a bit of pain and I felt as though I had lost the ability to walk properly. It was all rather unnerving.

Last Sunday, FPR and I went ashore to explore the town where the ship had docked. The difficulties with walking still persisted and fatigue was being troublesome. I was resting at one end of the town square when FPR beckoned me. I set off at my snail’s pace but disaster struck. With FPR something like 80 or 100 yards ahead, I tripped and fell, bumping my head in the process. Luckily there were four passengers from our ship who witnessed my fall and rushed over to help, for which I was and am very grateful. I was not badly injured: just an interesting lump on my temple, followed by a bruise featuring some rather exotic colours!

The fall made me realise something very important which is to use a walking stick on days when walking is a problem. Certainly, after that day, if I went ashore at all, I used the walking stick that I had taken on holiday with me and it made walking, and keeping my balance, much easier. I didn’t use the stick on the ship as I seemed to be managing fairl well. However, I did use it whenever I went ashore.

You never know, I may even manage to use the stick now that I am home…

Watch this space.

 

Which Way Shall I Go?

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My Big Sister

I am wondering which way to go, today. I’m spoilt for choice as I could go this way, or that. I am stuck between Scylla and Charibdis Charybdis (spelling mistake courtesy of FPR!). Caught between a rock and a hard place and trying to choose between the Devil and the deep blue sea. I’m weighing up all my options before I come down on one side or the other as, at the moment, I am sitting on the fence.

I need to make a decision.

Had you guessed that?

The decision concerns this blogpost but I shall continue as I am, for the moment.

When I go to bed I really like snuggling under the duvet. I especially like the winter because snuggling feels so cosy and warm, even though my nose is probably still cold. However, there is one problem with diving in bed and drawing the covers right up and around me: Fibro Feet.

Between about five to fifteen minutes after I settle in bed, my Fibro Feet switch on to maximum, which means that the covers have to be kept well away from my little tootsies. They are burning hot inside and it feels as though the skin is being scraped off with a rasp. In fact, that scraping feels so realistic that a picture of it happening comes into my mind. That, in itself, is unpleasant because, as those closest to me know, I am very squeamish. I really dislike blood and gore and the image that comes into my brain contains both of those.

Another sensation that begins is that of my feet being pinched by a strong metal clamp. It doesn’t feel as though they are being squashed, it has a very definite feel of being pinched. I wonder why it is that all the sensations and feelings connected with having Fibromyalgia and/or Chronic Fatigue Syndrome are all so unpleasant? The two conditions really should be told that it’s rather unkind to inflict all of that onto people who are having to cope with life encumbered by long-term illness.

The Fibro Feet don’t just attack when I am in bed, although they do consistently appear then. Their campaign against my poor plates of meat reignites at all sorts of times and in various places, but there doesn’t seem to be a regular pattern – except when I go to bed. It’s OK if I fall asleep immediately (feel free to snort with laughter at this point, if you wish), if not, they attack and they attack fast – and they ain’t takin’ any prisoners.

I’ve Had A Little Chat…

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The Library in Tromsø, Norway

This week I had a chat with the wonderful Dr A. I told him about the new symptoms that I am having and said that I was wondering I may have Chronic Fatigue Syndrome (CFS) as well as Fibromyalgia. He agreed that, in the light of the recurrent sore throat and swollen glands, it is likely that I have both conditions as they are often found in the same patient. We discussed the possibility of my taking medication but, as Pregabalin and Gabapentin are both primarily prescribed for pain, I said I would still rather hold them in reserve, for the time being. I know that I can change my mind at any time, which is reassuring. At the moment, I can cope with the pain and discomfort that I am having so it makes sense to hold those two big boys in reserve for when the pain starts firing on all cylinders.

I’m not sure how I feel about the dual diagnosis. On the one hand, I am disappointed to have CFS but, on the other hand, it isn’t a surprise, particularly in view of how troublesome the fatigue is being. Even with all the recent developments in my condition(s), I am still very fortunate. As I said above, I am coping with the pain whereas so many Fibro warriors are often floored by it. As usual, it’s the fatigue that pulls the rug out from under me. This week has been difficult as it seems that anything and everything that I do brings on the fatigue. It’s not just that I am weary and exhausted but that I feel so unwell with it. ‘Snot fair!

 

A Very Special Gift

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Bondi Beach (I think!). Summer 2013

Here in the UK the National Health Service has a vaccination programme each winter to protect certain vulnerable people from flu. I can’t remember which groups are included – and I’m too lazy to check it, at the moment – but I know that I am one of the people invited to have the flu jab because I have a chronic chest condition. It usually takes me a while to get around to having the jab, but I do always make sure that I take advantage of its availability. I think it is sensible to have vaccinations when they are available. In fact, in 2015 I heard that there was a Shingles vaccine available.

Now, my body is extremely reactive to stress. Over the years, stress has caused me to suffer prolonged periods with no voice – the problem was so bad that I began learning sign language so that I could communicate with my family without having to write everything down. (Have you ever tried losing your temper when you have to express that anger down on paper? T’ain’t easy, I can tell you!) Stress has also caused me to suffer excruciatingly crippling headaches – not migraine but most definitely as bad as migraine – and also to develop Irritable Bowel Syndrome, amongst other things. Oh, yes… and Fibromyalgia.

Anyway, back to the Shingles Vaccine. When I learnt about it I was under a huge and prolonged period of stress. I knew, as did my favourite GP, that I was likely to be susceptible to anything and everything when the stress dissipated, so I asked him if I might be given the Shingles vaccine. He agreed that it would be a good idea but, unfortunately there was no way that it could administered within the NHS as I was outside the qualifying criteria. I decided to pay privately for the vaccine and, even though it cost more than £100, I remain certain that it was a sensible thing for me to do.

As you can see, I am a believer in the use of vaccines and so, this winter, I had the flu vaccine, as usual.

During the past three weeks I have been in the company of some people who have been suffering from the nasty cough/cold/flu lurgy that has been touring the UK. Usually, I would steer well clear of those nasty germies, but it wasn’t quite as easy as usual. Consequently, I have been half-expecting to be struck down with a severe case of Fibro Flu. Cue this week.

On Tuesday I began to feel unwell: very unwell. I had severe pain in the thoracic region of my back and also in my chest, both of which are pretty reliable signs of a chest infection working itself up into a frenzy. I was boiling hot. Then I was freezing cold. Fatigue and tiredness were off the scale. I felt decidedly l-o-u-s-y. My favourite GP likes me to keep antibiotics at home so that I can start taking them as soon as a chest infection starts because, once the infection takes hold, it is an absolute whatsit to get rid of. However, this time, I didn’t start taking the antibiotics. Although I seemed to have almost all of the symptoms, I wasn’t completely convinced that I actually had an infection. I already had an appointment booked with my favourite GP for Wednesday afternoon and decided that I would wait until I saw him and ask him to take a listen to my chest. Wednesday came and in I trotted to see my favourite GP. He checked me out and said that my chest was completely clear. It wasn’t a chest infection! Hmmm. Peculiar…

It turns out that my symptoms were all courtesy of “the gift that keeps on giving” (to quote my friend, Anne). My Fibromyalgia has decided  to make me feel so lousy that it feels like flu. Isn’t that fun? You’re right. It’s not.

Fave GP and I discussed Fibro, symptoms and medication and agreed on the same conclusion i.e. there is little point in me taking any of the recognised medications for Fibro as they are all aimed at the pain, which is the least of my problems. Fave GP asked me which symptoms I have and I went blank. I just couldn’t think! Whilst I was trying to reply, I had to pause for a while, after which I told him that dizziness (which had been the reason for the pause) is one of my symptoms. I told him that I have a wide variety of symptoms but little pain, compared to other suffers, for which I am very grateful. Please be sure, fellow Fibro sufferers, that I am truly thankful that the pain I have appears slight in comparison to what seems to be the case for very many people who have Fibromyalgia.

In view of the discussion of symptoms with Fave GP, I have decided to try and add a page to this blog where I can note any symptoms that I have. So, watch this space – or should I say, watch the space next to this space?

 

One Good Turn…

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Edinburgh

For a variety of reasons, FPR and I went on a quick coach holiday to Edinburgh over the Christmas period. I love Edinburgh but struggled to find a photograph which reflects that, to use for this post. Then I realised that when I think of Edinburgh feelings, rather than images, come to mind. That must be why it has taken me far longer to choose a photograph for this post, than to write the actual post itself!

Anyway, back to the point of this blog post.

Regular readers will know that I have been encountering more difficulties with the Fibro lately than I usually do. New symptoms have cropped up, with tiredness and fatigue being particularly troublesome. I had taken the build-up to Christmas gently to make best use of my spoons, but it had still made itself felt. Luckily, those around me are aware of and accommodate the restrictions of my Fibromyalgia.

We were staying in a hotel but had been invited to spend time with FPR’s brother and his family. We had also had an invitation to visit friends, so that was Christmas Eve and Boxing Day spoken for. We spent a quiet day at the hotel on Christmas Day. Well, I say quiet… but, more of that later.

The plan was that, on Christmas Eve, the entire family group would go to North Berwick for some cobweb-blowing therapy, but my cobwebs would be allowed to remain intact. In other words, they would walk and be battered by the wind, but I would stay in a cafe, snug and cosy, knitting up my own personal storm. However, as the weather was being a trifle unco-operative, North Berwick was knocked off the agenda. We adjourned, instead, to the House of the Long Men (so named by me as all the males were over six feet long!). The change of plan was a surprising bonus for me. Remaining at the House of the Long Men meant that I was able to properly relax. I enjoy having coffee in a cafe but it is definitely a less-refreshing form of relaxation than being with people, and in a place, one is at ease with. The pleasant result of the day was that I felt better than I had for a while. My Fibro symptoms eased right off. Bliss.

As I mentioned earlier, we were remaining in the hotel on Christmas Day, which was absolutely fine with us. Our fellow travellers were generally a pleasant bunch, our coach driver was cheerful and ready to chat with anyone and the hotel staff were pleasant, polite and helpful.

There was a couple on the holiday we had been talking with, both of whom had obvious disabilities. At mealtimes, the husband would to fetch his wife’s food first, then return to the buffet to pick up his own. In my interfering way, at the Christmas dinner I said to him that I would like to give him a Christmas treat by fetching one of the meals, so that they could eat at the same time. I was very pleased when he accepted. (What I hadn’t told either he or his wife was that I was going to be providing the entertainment.) He told me that they were going to have soup so I fetched two bowls of soup and a couple of rolls. When I was a couple of steps away from their table, my performance began.

I caught my foot on the wife’s wheeled-walker and went flying through the air, soup and rolls in hand. I made a technically superb piroutte before landing elegantly in a crumpled heap on the floor – and I didn’t even drop the soup! Actually, I must have dropped it at some stage as the bowls crashed dramatically, emptying their contents on the floor. I have to say that I was very pleased that I didn’t get any of the soup on me!

I will say, at this point, that contrary to what many people thought, I was not in the least embarrassed. I was disappointed for the couple that I hadn’t managed to carry out what I had promised. I was also upset that the husband tried to take the blame for my fall. It was nobody’s fault but my own. I had been the one to suggest that he park the walking frame in that spot and I was the one who tried to walk through it, instead of round it.

OK, back to the gory details of the performance. Help appeared from all directions, in an instant. I was not really hurt – just a bit of muscular pain and some preparatory work for a couple of bruises. I think you could say I was very lucky! I certainly felt lucky FPR jokingly said that’s what I get for doing a good turn and that I’d better not do any more but I hope it won’t stop me.

(This is where I found the photograph at the head of this article. It was one of the results that came up as being free to use, when I searched on Google. https://www.ed.ac.uk/literatures-languages-cultures/dashkova

‘Twas The Night Before Christmas…

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The Italian Chapel on Mainland in the Orkney Islands

FPR and I have spent a lovely few hours with family this afternoon. They had their Christmas celebration yesterday so on Christmas Eve it was Boxing Day! A bit of a mixed-up time, eh? Not only that, but I have had a generous early Christmas present.

My friend, Fibro, decided to give me a present consisting of multiple symptoms that I don’t usually have a problem with. I must say, at this point, that none of the individual symptoms has been unbearably awful. However, the arrival of lots of them at once has been a bit anti-social. It has felt overwhelming, at times. I have been feeling pain in places that don’t usually give me any trouble and it has also been making itself at home in the places where it is a familiar face. It has been particularly bad in the thoracic region of my back and up across my neck, shoulders and arms. Fatigue has been playing up for a while but, the last few days it has ramped up the action or, should I say, the lack of action. An example of this is that I have only been able to work a few short rows of knitting, before having to rest – particularly irritating as I am trying to complete a Christmas gift!

Sleep has been less restorative than usual. Up until now, sleeping has revived me, but that doesn’t seem to be working, at the moment.

The Fibro Feet have been working hard causing discomfort, as have the Fibro Fingers. Add to that particular mix, the Restless Legs and you have a lively dance to watch.

With the symptoms I have mentioned, and others, has come a general feeling of unwellness. Bossymamma has not been a happy bunny!

As Anne with an ‘e’ says: “Fibromyalgia: the gift that keeps on giving”.

The Vice Squad Have Got Me!

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Jamaa al-Fna, Marrakech, Morocco. January 2012

It had to happen some day. I knew the Vice Squad would eventually catch up with me. I’m not sure that I deserve it, though. I really hope it will be gentle with me.

No, I don’t mean THAT Vice Squad! Whatever do you take me for? No, don’t answer that! The Vice Squad I am talking about is the one that attacks my upper arms and uses a metal prod on each arm, which feels as though it is about three inches (7.5 cms) in diameter, to do so. It squeezes those two circular discs together, towards each other, in its vice-like grip. Even though no-one can see them, and you could argue that they don’t exist, I can tell you exactly what they look like. How weird is that?

The discs are about 1/2″ (1.25 cm) to 3/4″ (2 cm) deep and the rims are painted a burgundy red, with a hint of blood red in the colour. The red paint is glossy but not brilliantly shiny. The face of the disc looks similar to a potter’s wheel, with a narrow concentric circular groove cut in every inch (2.5 cm) or so. That surface is unpainted metal, smooth, but not shiny. I don’t know if other people picture the instrument of torture they are suffering, but the image of those discs immediately comes into my mind when the vice starts to grip. My mind’s eye is a very busy little bee! Funnily enough, I was reading an article online yesterday about someone who is the very opposite of me when it comes to having a virtual image – she has Aphantasia. In other words, she isn’t able to picture things in her head. I found the piece fascinating – well worth reading, which is why I have included a link to it.

 

Oxy-Acetyline

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Morocco. February 2012

Occasionally, one can learn (OK, ‘hear’ rather than actually ‘learn’!) something from even the most mindless source. That was what happened to me a couple of days ago. It was something about oxy-acetyline torches and it was quite interesting – to me, anyway. Sadly, I can’t remember exactly what it was but I do remember being amazed at the extremely high temperatures that can be reached.

“Hmm,” you say, “what on earth has that to do with Fibromyalgia?”. Allow me to enlighten you, although, may I say how surprised I am that you haven’t yet worked out the link? It seems pretty straightforward to me!

Allow me to give you a hint…

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Bossy Feet!

Have you worked it out, yet?

Do you give up?

OK, I’ll tell you.

For the past few days, my feet have been feeling as though the skin is being burnt to a frazzle by an oxy-acetyline torch, causing it to peel off in huge pieces. The pain in my feet has been very much more severe than previously. It would be easy to say that it was unbearable but, of course, I have borne it. It has certainly been unpleasant. Actually, it wouldn’t be an overstatement to say it has been downright nasty.

It was a shock to me that the pain in my feet was so bad, and so different from what I had experienced previously. I don’t know why I was so surprised but I suppose it was because I had become used to how it felt when I was suffering Fibro Feet and it hadn’t occurred to me that those sensations might change! Pretty dumb, huh?

Hmph! Shame it wasn’t ‘numb’ rather than ‘dumb’, then they wouldn’t have felt so darned sore!