It’s All Go, Around Here!

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A cooling image of the Dandelion fountain in the King’s Cross area of Sydney.

There seems to be a lot happening at the moment. Actually, one way and another, July has been quite hectic – well, in a Fibromyalgia sort of way. There have been several days each week with things booked in either for me or for FPR, which is unusual. For now, though, a breather is in progress with a visit to my Little Boy and his partner.

Venturing out of home can sometimes feel quite daunting, which is the case at the moment. I had a fall in the street, earlier this week, which shook my confidence. Two lovely young chaps came to my rescue – they reached me just before FPR. I think they must have rescued others as they asked me if I needed a minute before getting up and seemed to know how to help me to my feet. With the experience so recent, the journey ‘dahn saaf’ loomed large including, as it did, a taxi, a bus, a train, a plane and a car.

The taxi was straightforward. The driver was on time and, when we arrived at the station, parked just outside the door. The Rail Replacement Bus wasn’t quite so simple: I couldn’t get up the steps, even with help. I was thankful that the driver moved the bus so that I could stand on the kerb. That extra height made all the difference. It was kind of him to reposition the bus, but doesn’t he know that buses are designed so that passengers can mount from the pavement? Grrrr.

I had booked assistance for Manchester Piccadilly Station. (I had also booked it for Bolton Station but we disabled people mustn’t expect too much, you know.) No-one appeared when the Rail Replacement Bus arrived at Piccadilly but a member of staff offered me her arm to steady me as I alighted. Things improved after that as two security staff came with a motorised buggy to give assistance. They were pleasant and chatty and didn’t make me feel like a nuisance when I needed to go so slowly. Having sat on the train, the Train Manager came along and said she would help when we arrived at the airport. That was just as well as the assistance was booked for a later train! It was not a problem as the Train Manager went to alert staff of the earlier arrival. The railway staff wheeled me to the station entry concourse where two chaps from the airport arrived to assist with the transfer to Terminal 3. These were two more lovely men who were happy to chat. An added bonus was that on that beautiful, bright, but not too hot, early morning they took a route outside the terminal buildings. I can’t tell you how welcome it was to be outside on such a morning!

We went straight to Security, and through to the Passenger Assistance waiting area. I needed something to drink so joined the short queue at the coffee stand next to the waiting area. No sooner had I returned to my seat than another chap arrived to push me to the departure gate. As the gate was deserted when we arrived, I decided to lie down and rest for a while as I was feeling tired. I’m glad I did as it refreshed me.

We were called to the aircraft before other passengers. A platform lift had been requested but a chap came over and asked me if I thought I would be able to climb up the steps, as the platform was too big for the job. As it was a small turbo-prop there were only a handful of steps so I said I would try. He was pleasant and reassuring and said that he and another would be there to help me. I was very pleased that I was able to manage the steps along.

The cabin crew were most welcoming and attentive: I definitely felt well looked after! Another lady was being given assistance and received a similar level of service to that shown to me. We were asked if we would mind waiting until all the other passengers had alighted at our destination before we disembarked and we were happy to do so. Again, everyone was pleasant and helpful.

As for being collected by my Little Boy in his car… Unbelievably, Southend Airport allow just FIVE¬†minutes’ free parking for collecting or dropping off passengers! And the car park is quite a step from the terminal building. That might be long enough for able-bodied passengers, but for anyone else, it is woefully inadequate. I feel a ‘Disgusted of Tunbridge Wells’ letter coming on.

And, tomorrow, it all happens in reverse! Wish me luck!

 

 

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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.

 

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.

 

The Other Choice

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Morocco. February 2012

Last time I said about having a choice to make and went on to write about Fibro Feet. Well, today I am writing about the other option that was in my mind at that time: Tinnitus.

I have had Tinnitus since my early 20s. I clearly remember the first time I recognised that I could have different sounds in each ear, at the same time. It was in the village of Smarden, in Kent, just as I was about to get out of the car. (Just a useless piece of information for you.)

Tinnitus has a been a feature of day-to-day living for most of my adult life. Occasionally it would be severe but then it would settle down again: annoying and sometimes rather too intrusive, but not actually causing any problems. However, since the onset of the Fibromyalgia, the tinnitus has worsened considerably. I’m not saying that the worsening is solely due to the Fibro as some of my medication mentions that Tinnitus can be a side effect, but I certainly believe that Fibro has contributed to the worsening of the condition. I am finding that, more and more, Tinnitus is interfering with my actual ability to hear and distinguish sounds. For quite a long time I have sometimes had to struggle to tell whether a noise is in the environment or just inside my head, but now I find that there are occasions when the noise in my head is so loud and intrusive that it obscures environmental sounds to some extent. The obscuration can range from very slight to almost complete. I don’t think it is affecting my ability to hear speech as that seems to be pretty good but, if FPR asks me is I can hear a certain sound, I can struggle to hear it. It’s not nice! And I don’t like it!

I know that many people with Tinnitus suffer far more than I. I am grateful that mine is not considerably worse and I feel deeply for the suffering that those people constantly live with. My complaint is not so much that I have Tinnitus, it’s that the effects of it are another thing about Fibro that eats away at my self esteem. Bits of me are being stolen by Fibro and other conditions that I have: my brain no longer works as efficiently as I have been used to, my ability to cope with stress is practically non-existent, my body doesn’t function as well and, now, my hearing is being impinged upon. It feels like I am losing being me, that I am being taken over by another being (Fibro). I don’t know but perhaps I am afraid that I will be so completely subsumed by Fibro that I won’t be me, I’ll just be Fibro living in my body.

I think that, probably, most people take their bodies and brains for granted. I certainly did. However, when that edifice starts to crumble, it can be a struggle to find who one is in the rubble. I am still searching.

 

Cooking On Gas

Sydney Opera House from The Rocks

Sydney Opera House from The Rocks

There has been little time to post on here and, actually, very little to talk about vis-a-vis the Fibromyalgia.

The adrenalin has been doing a great job of knocking the stuffing out of any Fibro symptoms. Up until last night, I had been absolutely fine. There was something of a hiccup yesterday, though. We had taken my sister to do a few errands then she wanted to go to Semaphore which is on the coast, to the west of Adelaide city centre. When we returned after dropping my sister off, I became extremely unwell. It probably wasn’t due to the Fibro but, rather, to something I ate or drank.

I have to admit that I am dreading our farewell on Tuesday. Apart from the emotional consequences of the parting, I am worried that there is likely to be a huge drop in my adrenalin levels leading to a surge of Fibro symptoms. Having been so fatigued when we returned from our holiday in Turkey, although, admittedly, I also had a chest infection, makes me feel a bit frightened of how I shall cope with our return journey to the UK. I need to keep thinking of pleasant things to take my mind from pondering what might happen.

By the way, are you wondering why there is a photograph of Sydney Opera House at the head of a post about my time in Adelaide? Well, it’s because Peter and I flew to Sydney for the day on Wednesday, to see more of my family. During the afternoon, one of my cousins took us around Sydney on a mini sightseeing tour during which I took the photo.

Hmm… Things Have Been Changing Slightly

Yesterday, being Wednesday, was the day that I had to increase my dosage of Gabapentin. I am working my way up to taking three capsules three times a day. Oh gosh, that’s a lot of those large lumps to swallow! I am having trouble remembering to take the afternoon dose and when I forget it throws everything else into disarray because of other medication that I am on. Hmph.

Anyway, yesterday I had to increase the morning dose of Gabapentin to two capsules. Having already increased the evening and afternoon doses to that level, I didn’t anticipate any problems. However, soon after taking my morning medication, I became suddenly very tired, which is not unusual. What is unusual is that I also felt extremely nauseous. I didn’t really feel as though I was going to vomit, although I was only a hair’s breadth away from feeling like it but, my goodness, I felt ill. I had to collapse into bed… immediately. The trouble was that I had telephoned a friend just a few minutes before to say I would be arriving shortly so I had to ring her to say that plan had been aborted. Luckily, Peter was around and brought my phone to me so that I only needed to press a couple of buttons otherwise I don’t think I would have managed to ring.

I collapsed into the bed and fell asleep immediately. I slept for two and a half hours or more. When I awoke I was so pleased that the feeling of nausea and the exhaustion had passed. That is another way in which I am lucky with my Fibromyalgia at the moment: when I sleep, when I waken I do refreshed. Many sufferers¬†don’t feel refreshed when they have slept. That is not nice. As I say, I am lucky.

Another change that has taken place is that I am starting to feel hints of pain in some of the well-known tender points in my body. Again, I am lucky as what I am feeling is just a touch of sensation rather than actual pain. It’s more a case of Fibro saying “Don’t worry, I haven’t forgotten you”, followed by an evil laugh.

What I have just written probably sounds like the words of a madwoman but allow me to explain. The Fibromyalgia feels to me like an entity, almost a person, with its own identity, its own character: so to me it makes perfect sense that it would talk. If that makes me ‘not right in the head’ then so be it – that explanation works for me. It helps me to deal with the reality of living with Fibromyalgia and the possible things it could do to me, and with me, in the future. So what, if it’s weird? I don’t actually care! It doesn’t matter and isn’t up to others to judge me: I’m the one having to cope with my Fibromyalgia.

Sorry. I was becoming a little belligerent there.

The changes in pain, or ‘sensation’, probably don’t seem like much to anyone else and, I suppose, in themselves they are not much, but it’s what they may presage that is so frightening. I don’t like pain. I don’t like being in pain. I’m a pathetic weed when it comes to pain. How will I cope if Little Miss Fibro decides to throw the Pain Book at me?

I’m stopping now as I don’t want to think about it any more.