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.

 

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Downs and Ups

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Some Downs and Ups in Norway

You’ve doubtless heard the saying that what goes up must come down, but the opposite is also true: what goes down must come up. Well, that’s certainly the case when I fall!

Had I mentioned, previously, that falling is my latest hobby? It must be because it keeps happening, with disappointing regularity. I thought I had gotten away with it when FPR and I were in Devon at the beginning of this month, because I didn’t have a fall. I had fallen on our three previous holidays, so you can see why I half expected to take a trip on our latest trip.

It’s OK, no-one needs to worry, the long-awaited fall happened yesterday. Actually, I say no-one needs to worry but I was a little concerned because I wasn’t even walking when I went down. What happened was that my balance went and I dropped like a stone: flat on my back. It’s a funny thing, whenever I take a tumble, I don’t put my hands out to break my fall. That’s not a new thing. I remember a couple of falls which happened more than 15 years ago and, even then, I didn’t try to break my fall by putting out my hands. Hmmm. Weird.

Anyway, returning to yesterday’s gymnastics…

Luckily, FPR was with me and, even better, he didn’t immediately try to help me up. It is something that he and I have discussed: how, when someone falls, the automatic instinct of well-meaning people is to try to pick them up straight away. It is so kind of people to want to help but… please don’t rush to get someone up. For a start, when someone takes a tumble, they (I’m saying ‘they’ because I don’t want to muck about with her/him, s/he or any other description) need a few moments to gather themselves. I know that when I throw myself on the ground unexpectedly, it’s a bit of a surprise, or even a shock, and it winds me, both physically and metaphorically – and it takes a few moments to recover from that, apart from anything else. It also takes a bit of time to figure out what hurts and whether anything might be broken.

OK, so then we get to the interesting bit: getting oneself upright again.

This is not straightforward when one has a disability. One’s ability varies from day to day. Some days I can definitely manage far better than on other days. It means that I am likely to have to try different ways of getting up. Now, I have to say that FPR is very good when I am trying to right myself: he doesn’t try to get me up the way he thinks I should. Instead, he listens to what I say I need to try. I’m sure it must be very frustrating for him when I don’t try something that I have done on other occasions, but he takes it very well – for which I am grateful. Not only does he listen, but he does the things I ask, in the way I need.

Yesterday, a young woman rushed over to us and helped. She was very considerate, certainly helpful, and kind. She even offered to give me a lift home. It was lovely that she came over, also that she listened and acted on what was needed. What none of us realised was what would happen when I was almost upright: my balance went again and I narrowly avoided landing on the deck for a second time!

On our way home, I told that FPR that I shall have to ensure I have a walking stick with me when I go out. I don’t have a limp, it’s to help me keep my balance. I also said that, when I am getting up from a fall, I need him to hold my arm so that I don’t lose my balance again.

You know, the problems with my walking are disappointing and have brought all sorts of things to mind. However, I hope that I will manage to retain my sense of humour. After all, if I don’t laugh, I might end up crying – and I don’t really want to do that.

 

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.

 

This Week I Have Been Mainly…

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No. Only one pair is mine.

Wasn’t The Fast Show great? (That’s where I borrowed this title from.) My family and I all loved it. Anyway, I digress.

This week I have been mainly suffering from…

Fibro Feet.

Don’t know what Fibro Feet is or are? Allow me to enlighten you, well, at least as to what Fibro Feet means for me.

It begins with a warm feeling in my feet which increases in intensity until my feet feel as though they are burning inside. The transition can be slow or fast. Surprisingly, if you were to touch my feet (which, by the way, is a very bad idea as I am so ticklish!), they wouldn’t feel any warmer than most people’s. Odd, huh? The next stage is the barely discernible transformation of the burning sensation into a feeling that, mainly the soles of both feet, are being stabbed repeatedly by red hot knives. That can last for five minutes or five hours – there’s just no way of predicting how long it will be. It makes walking painful and unpleasant: try imagining that when each step lands it feels as though the sole of your foot is being pierced all over by red hot, rusty nails.

Fibro Feet doesn’t always make me feel as though my feet are red hot, though. At other times there is little or no feeling of increasing heat in them. What I experience is the sensation of walking on shards of glass, lots of shards of glass, which are cutting my feet to shreds. This sensation is even worse that the hot knives one because, unlike the first one I explained, this one feels just as awful when I am sitting with my feet up, as it does when I am trying to walk. I have to admit that I try to avoid walking when my feet are feeling this way as it hurts so much.

There doesn’t appear to be any way of predicting when Fibro Feet will saunter into my day, nor how long it will hang around, but there’s no mistaking when it’s here.

 

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!

 

And Now The Holiday Is Over

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I doubt if you need me to tell you that this is The Angel of the North by Anthony Gormley

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?