A Step In The Right Direction

IMG_2524

A Star Wars photo of the ‘Blinking Eye’ in Newcastle. (It was taken on May 4th, 2017)

I went to see The Amazing Dr. A on Monday of last week. I had actually seen him, briefly, the previous week as I was walking along the corridor to the Blood Nurse at the Surgery. That brief interlude had been useful because, when I entered his room on Monday and after the usual pleasantries had been exchanged, he commented on my difficulties walking. (They are very obvious, and even more so on a ‘stiff’ day.) I told him about my hobby of falling and said that I didn’t think I had osteoparosis because I should surely have broken a few bones by now. He seemed to agree with that. He also commented on how quickly my walking deteriorated and I agreed. That led us to talk about my general deterioration over the past few months and its effect on both me and FPR.

FPR and I had had a heart-to-heart the previous night about how and I am at the moment, how quickly things have changed and what might happen in the future. We both agreed that it is scary. And I mean really scary. Becoming a carer for me is a huge, and largely unexpected, commitment for FPR. We had both assumed, due to his own problems, that I would be caring for him, but the tables have turned. This is big stuff. We haven’t signed on the dotted line for the “in sickness and in health” stuff so the prospect of needing FPR as a carer is precarious – for him and for me. There is an expectation that I will be cared for by him, because that’s what couples do, but it still feels precarious. I know that marriage isn’t always permanent, but getting married shows the husband and the wife that they each intend to be committed permanently to the other. This doesn’t mean that I think FPR and I should marry, it’s more a way of explaining my feelings. Don’t imagine that FPR is reluctant to care for me, that is definitely not the case. However, understandably, the prospect is as daunting for him as it is for me. It feels shaky for me, in a similar way to having sold my house and then be living in his house. I suppose some of it is to do with not being in control, which is ridiculous when one considers that one is not in control of what medical conditions one has.

Anyway, enough of that. Let’s get back to The Amazing Dr. A.

I mentioned to TADA (The Amazing Dr. A) that I was worried I might have had a stroke, because of something said by FPR’s neurologist when we saw him recently. However, TADA said that he doesn’t think the deterioration is due to a stroke. He also said my symptoms were a-typical. He had a good look over me, checking various things and said he would refer me to the Musculo-Skeletal Team for their input. He was hopeful that they would be able to put in place some intervention to help me. It sounds to me like a promising step in the right direction.

 

 

Advertisements

A Big Change

IMG_0633

I saw this and it amused me that a coach was smoking!

A couple of days before my mother’s funeral I decided to buy a new car. The car I owned at the time seemed to be jinxed: I lost count of the number of tyres that I had to buy or have repaired. I think I must have had to pay out for new tyres or for puncture repairs at least twice every year since I bought it. The final straw came after I caught the tyre on a sharp object in a car park on the Friday before the funeral. FPR said he would change the wheel the next morning. However, when he tried, the security bolt would not undo. We called out the car breakdown company but the mechanic couldn’t budge it. In the end, the mechanic had to take the car to the local dealership for the bolt to be drilled out on the Monday morning. Given that the funeral was on the Monday and I was due to drive my car to the crematorium, you will understand that I was rather stressed. So, I decided on that Saturday, that I would change my car.

I waited until the New Year and, whilst staying with Little Sis, began looking at cars. I was going to buy something very small but was sidetracked by a sporty beast that I saw and sat in. My Little Boy, once he knew I was looking for a new car, began sending me photos of possible models. The new car didn’t have to meet any particular criteria so it was simply a case of deciding which car took my fancy. That was easy. As soon as I saw the photo of an Alfa Romeo Giulietta, I was hooked. I have quite a bit of fiery Italian blood in my veins and the Alfa suited it down to the ground!

Although I spent more than I might usually have done, I loved and still do love my car. I love the way it drives. I love the gadgets. I love the throb of the engine. I love the styling and all those little extras. Even the pedals in my car have the Alfa Romeo logo. The whole package is stylish and roguish and I love it.

What has all of that to do with Fibromyalgia, you’re probably thinking. Well, the answer is “Too much”.

My body, but in particular my legs, ankles and feet, has stiffened up considerably. My range of movement is somewhat restricted and I am finding it difficult to lift my legs. This causes a problem in my beloved Alfa because those beautiful pedals are too high off for the floor for me to be able to drive comfortably.

At first, I thought I was going to have to change my lovely car. I tried to be sensible about it and not feel like crying when I thought about losing my Alfa. I tried not to think about the amount of money it was going to cost me, both in the drop in value of my Alfa and the cost of a new car. I tried not to mind that my body is letting me down in a big way. But I did, and do, mind. ‘Snot fair! To use those ubiquitous phrases, I am gutted, I’m devastated. Except that, now, I’m not. It looks as though the pedal plates can be lengthened so that they reach down nearer the floor. That means I would be able to use them… and keep my Alfa! I can’t tell you how much I hope that the job is feasible. I have checked with my insurance company that they are happy for the adaptation to be carried out – and they are. All I have to do now is go to the engineering company that makes and installs adaptations in vehicles, so that they can measure up and then manufacture the new plates. It does mean that I shan’t be able to see my lovely, flashy Alfa logo pedal plates any longer, but that’s a small price to pay.

I’m still fed up with the stiffness in my legas, ankles and feet, though.

 

Which Is Steeper?

DSCF3720_zps48d6da43

View in Norway

I wonder which is steeper: a mountain or a learning curve? This week it has definitely felt as though the learning curve was the winner. Phew!

FPR and I toddled off on another short coach holiday, this time to the Ayrshire coast. We had a great start: the taxi arrived on time (the firm we used is now under new management but had let us down under the old regime) and we had plenty of time to buy some food at the Bus Station before our coach was due to arrive. We had a pleasant driver and the journey to the hotel went well. On arrival, we agreed that FPR would retrieve the cases and I would collect our room key. Good plan… until I fell over! Once again it was simply a case of losing my balance. Honestly, anyone would think I was an old soak the way and I totter and stumble!

When I landed several people proffered help. Two gentlemen, in particular, were very kind and helped me to return to a vertical position. Someone else offered me her arm to keep me steady as I walked towards the ramp, which I gratefully accepted. FPR didn’t realise that I had fallen. Whilst all the drama was going on, he walked into the hotel and was to be seen scanning the crowd to find me. This isn’t lack of interest on FPR’s part, it’s simply a sort of tunnel vision. I am used to it and know that I need to shout to attract his attention. Unfortunately, when I fall, I don’t make enough noise.

Once we had found each other in the lobby and had our room key, we went to find the room. We were pleasantly surprised to see that it was on the ground floor, close to Reception. “Oh, good” we thought. Hah! When it was time for dinner we headed off to Reception to ask where we needed to go. Oh, my goodness. They gave us directions for the ‘easiest’ route:

  • Through the door
  • Along the corridor
  • Out of the Fire Exit
  • Down the metal staircase
  • Across the car park
  • Down the steep path
  • Then into the Restaurant.

Although the staircase was new and in excellent condition, with non-slip treads, I found the prospect of going down rather daunting. My instinctive reaction to shiny metal is that it is slippery so I had tensed up, making it even more difficult to move smoothly. Having said that, I descended without incident. Crossing the car park was no problem. However, the path that I had to negotiate was too steep to walk down comfortably so I was feeling ill at ease. I had to really concentrate to prevent myself from losing balance and falling.

After eating I forewent the pleasures of the steep footpath, metal staircase et al and chose, instead to try the delights of the hotel lift. This entailed walking across a tiled area at the entrance/exit of the Restaurant, with no handrail, parading outside, along the entire length of the Restaurant, going up four concrete steps, with handrail, crossing to another Fire Exit, mounting two tiled steps, again no handrail, through the door, up four carpeted stairs, with handrails, and into the lift. On exiting the lift we had to walk along three corridors, each about 20 yards long, before we reached Reception. I felt nervous crossing the tiled area at the entrance to the Restaurant because of the risk of slipping. The concrete steps, having a handrail, were considerably easier to negotiate, not so the two tiled steps. I simply could not get up those two steps unaided. I was using a walking stick but that alone was not enough. Without a handrail, I needed someone to hold onto. I was very pleased that FPR was with me. As for the three corridors, they were another matter altogether: walking along them felt like running three consecutive marathons – and took almost as long. By the third evening I had realised that it was easier if I used the wall as an additional aid to steady myself. I don’t like putting my hands on the wall because of the dirty marks that appear but needs must. I’m afraid my need to avoid falling is more important to me than someone having to wash a wall. Selfish, but true.

The following morning I accessed the Restaurant by the third available route. It entailed quite a walk before reaching a long staircase to go down. By the time I reached the staircase I needed a rest. I didn’t want to attempt so many steps until my legs had had a rest. My descent was slow but otherwise easy. In fact, this was the easiest route for me to get to the Restaurant although, of course, it wasn’t much use for returning after I had eaten!

On our third day we went to Glasgow where we had just over two hours to amuse ourselves. I think this was the worst part of the holiday, for me. Having to do so much walking, getting on and off the coach and so on, by this time I was exhausted. (Also, the soles of my feet were hurting because of the strange way I now walk.) Consequently, when the coach dropped us just down from George Square, I was totally incapable of walking to the other side of the Square. I thought about getting a taxi to the Kelvingrove Art Gallery but FPR said he wouldn’t do that because of the need to be back on time. I therefore spent the two hours or so sitting in Costa Coffee, reading a newspaper. I can tell you, I was thoroughly miserable. I was sorely disappointed not to be able to see anything of Glasgow. I had looked for one of those round-city tour buses but not seen one – although Mr Murphy kindly supplied TWO of them when I left Costa to go back to the coach! Grrr. Him and his bl**dy Law!

Following my miserable experience in Costa, I have decided that, in future, I will make an effort to get a taxi to a museum or other place of interest so that I don’t have to just sit around. I need to remember to search for telephone numbers for taxi firms beforehand, so that I can ring for a return cab. FPR can accompany me, if he wishes, but otherwise I shall go alone. I would rather remain at the hotel than have to sit like I did in Glasgow – at least I can relax at the hotel.

 

I’m Thinking Of Getting Married Again

musica-para-boda

(According to Google this image is copyright-free.)

I am thinking that it would be wise to get married again. I’m not thinking about the presents, the flowing dress, or the fragrant flowers. I’m not thinking of that special commitment to another person. No, I’m thinking of the honeymoon. You are probably wondering where I might choose to go and how long I might want to be away but you would be wrong.

So, why am I talking about getting married and having a honeymoon in this post? Well, it’s simple… As far as the Fibromyalgia is concerned, the honeymoon period is definitely over. Having escaped with very little pain since I was first diagnosed in Autumn 2014, the Fibro has gone into overdrive lately. I am having all sorts of symptoms: some new, others making their presence felt more severely than previously.

I have mentioned on this blog how fortunate I have been that I was having very little pain. In fact, some people challenged my claim to have Fibro because of the general absence of pain. What they neglected to take into account were the myriad other symptoms that I had the dubious pleasure of entertaining. I don’t think I ever took the absence of pain for granted. Rather, I celebrated it and tried to make the most of my luck in that regard. Now, however, things are different, very different. Pain has been an unwelcome visitor recently and I’m not happy about it. The silly thing is that I recently started taking Mirtazapine to help with the symptoms of Fibro because I had read good things about it. Hmph. I am not amused. I could easily begin to think that the Fibro deliberately chose to throw pain into the mix, just to spite me, but that would be silly, wouldn’t it? Hmm, well it certainly seems that Mr. Murphy has decided to play those naughty little tricks of his with his Law.

At the moment, the pain is bearable but I don’t know whether that is because I am taking Mirtazapine, or whether it simply isn’t as bad as it could be. It’s a bit of a conundrum, isn’t it? I will need to speak to the Amazing Dr A in a week or two to discuss how I am getting on with the Mirtazapine as, if I continue to take it, I would like to come off the antidepressant (Citalopram) that I have been taking for some time. The whole point, for me, was to use Mirtazapine to do two jobs, viz to counteract my long term depression and to help in the fight against the Fibro. To my mind, there is little point in taking Mirtazapine if I also have to continue with the Citalopram, unless, of course, the Mirtazapine is working miracles with the pain. I shall have to see how things progress over the next week or so, shan’t I?

 

It’s All Go, Around Here!

image

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!

 

 

That’s Just The Way It Is

IMG_00080

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!

 

It Was A Cold, Dark Midwinter Night…

IMG_2170

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!

 

Moving Along

DSCF3528_zps86c1a05f

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.

 

Old Wives’ Tales

image

Sydney Opera House from The Rocks

We’ve probably all heard an old wives’ tale or two, haven’t we? Do you remember, as a child, pulling a face only for your mother to say “you should be careful or the wind will change and your face will stay like that”? I must admit, I have never seen anyone whose face did actually stay like it!

I remember, many years ago, hearing or reading that each of us is most awake and active at the time of day when we were born. I can’t remember whether it was from a printed article, a TV or radio broadcast, or whether someone said it to me. I have no idea whether the idea has been looked at scientifically but I tend to think of it as a bit of an old wives tale. Anyway, that little gem found its own nook or cranny in my brain and slept there for years, just occasionally waking up and giving my mind a little nudge, before dozing off again.

This week, my pet snippet decided to poke its tiny head out. Just a quick “hello”, you understand.

I was born in the middle of the night, 3.10am actually, and there have been plenty of periods when I have been quite a night owl. The first such period I remember was when I was at primary school: for several weeks I would wake somewhere around 2.30 or 3.00am. I was wide awake and would go downstairs. I would get myself something to drink, and possibly a snack, then settle down comfortably in an armchair and read the daily paper. I remember my mother coming downstairs the first time this occurred, and asking me what I was doing. I simply said that I had woken up and was wide awake so had decided to sit downstairs and read the paper. As I wrote that it sounded rather precocious but it wasn’t meant to be: I was just answering her question. Well, she accepted that answer and went back to bed. And, just like that, the whole family accepted that I got up for a couple of hours during the night. As I said above, it went on for several weeks.

At various times in my life, I have gone through these periods of early morning activity. It may be more accurate to say that they happen in the middle of the night. As a teenager, one of my jobs at home was to do the ironing. My favourite time to do it was immediately after I had been out on a Saturday night. I would return home at something like midnight or 1.00am, entering through one of the bars in the pub we lived in. I would say ‘hi’ to everyone who was at that night’s lock-in, then go through to the living quarters and do the ironing. I would have the radio blasting out (we were well away from any houses) whilst ironing clothes, with the back door wide open. As I look back, I realise how unwise it was to have the back door, not just unlocked, but flung open. Ah, the folly of youth! Oh well, I wasn’t confronted by burglars, nor did I suffer anything worse than a few moths coming in because of the light. Obviously Fate didn’t feel very tempted by my actions!

Since retiring from work early, I have often noticed that I don’t feel like going to sleep at a ‘normal’ time. However, I don’t necessarily heed that inner voice but do go to bed at a reasonable time. Not this week, though. I began the week with a few days of moderate fatigue. After a couple of days I realised that, as the day turned to evening, the fatigue would begin to lift slowly. This meant that by late evening I was feeling I had some energy that could be used. I have been known to do vacuuming when I feel like this late at night – not this week, though. I am in the middle of a huge sorting and decluttering job so expended the energy on that task. (When I say ‘energy’ it is a relative term. Don’t imagine I am leaping about because you would be sorely disappointed at the reality!)

It is not easy to figure out how much of this week’s fatigue and energy peaks and troughs are due to Fibro. At a guess, I would say that they are part-Fibro and part-Old Wive’s Tale.

 

 

Back To Square One

fullsizeoutput_10c5

Faroe Islands, August 2016

It feels as though I have gone back in time – well, sort of.

Let me to take you back to 2014, before Fibromyalgia had appeared on my horizon. My mother had finally moved into the retirement complex that was her idea of Utopia. Leading up to the move, on the Monday evening she had graciously (hmm, my tongue was firmly in cheek for that particular statement!) granted me special dispensation to begin packing her clothing, shoes and possessions. This was a huge concession on her part as it meant she was going to have to live surrounded by boxes for, oh, three days. Sorry, do I sound bitter?

Come moving day, I organised the removal men whilst trying to finish the packing, clean the flat, deal with all those last minute things that crop up and answer the phone to her, seemingly every 10 minutes. And, it was a stinking hot day. I do not and have never coped well with hot weather. The following fortnight continued to be excessively hot, with wall-to-wall sunshine. I was getting up at 5 o’clock every morning so that I could try to clean the flat properly before the day became even hotter. During the day I would have to take my mother out so that she could buy lots of new stuff for her new home, then, come the evening, I would do more cleaning and unpacking. After two weeks of cleaning, unpacking, sorting and so on, I finished. Phew.

I went home and, within a couple of weeks, was hit by a chest infection. After several weeks of the myriad joys of a chest infection, and almost as many courses of antibiotics, I was still suffering chest pain. I also had pain in the thoracic region of my back, which I had not previously experienced with a chest infection. Not only that, but I was totally exhausted: I was sleeping for hours during the day, as well as through the night. After a month or so, the Amazing Dr. A diagnosed Fibromyalgia.

I spent most of September, October and November asleep. Not dozing in a chair, but asleep lying on the sofa. (I don’t like going to bed during the day unless I really have to.) And, now, I feel as though I am in a time warp as I seem to be sleeping an awful lot of the time. Groooaaaaannnnn. Actually, I probably haven’t been sleeping quite so much as in 2014, but the amount of sleep does seem to be increasing this week. I have been able to do less and less during the past few days.

Not very long ago, I was able to do quite a bit. Even on a bad day I would be knitting, sewing or on the internet during the time that my body needed to rest. Now, however, things have changed. I still knit, but can only do a few rows in any session. I can do a bit of hand sewing, but only for 20 or 30 minutes. But… I now spend quite a while doing nothing (apart, perhaps, from watching trashy television). It’s a sobering reality, how little I can do. I still hope that this level of fatigue is temporary, that this Fibro flare will calm down, but it’s becoming more difficult to believe it.

I am at a stage in life when I should be enjoying myself. I have few responsibilities or obligations and I don’t have to work. I should be seeing, doing and learning new and exciting things, going out with family and friends, living the life I dreamed of. I shouldn’t be falling asleep at the drop of a hat and struggling to make sense of simple things. ‘Snot fair! I don’t like it!