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.

 

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Breaking Down And Building Up

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Mind the Polar Bears! Spitsbergen, August 2017

Things have changed this week.

FPR and I have been on another holiday – a five-day coach trip to Devon. Yes, it was very soon after our recent cruise but we just felt like going. Once we were there things looked slightly different.

Now, if you were to ask my baby son, he would tell you that I am a pessimist and, to a certain extent, he would be right. However, like many people with a chronic condition, when it comes to thinking about how much I can do, it’s a very different story: I am definitely grossly over-optimistic. That, of course, was what happened when FPR and I discussed taking this short break. I completely over-estimated how much I would be able to do during the holiday. I don’t see that as an altogether bad thing as it means I haven’t completely lost hope, but I realise that for FPR it is likely to be frustrating.

One thing that I have realised during the two holidays is that I really do need to have a look at how I live my life and what changes it would be wise to make. So, that is what I have started doing. Already! We arrived home on Friday evening and I started changing things this morning (Sunday). Pretty good going, huh?

During the time since I finished working, craft activities have taken up a large proportion of my time. I love to make things and I love to give the things I make to others, especially if the items could help them. Consequently I have huge amounts of crafting materials stashed in various places around our home. I have particularly large amounts of fabric and knitting yarn. I need to pass some of those materials to other people who can use them as I simply cannot do anywhere near as much crafting now as I was able to do a couple of years ago. Consequently, I am having to break down the life I was living and the activities I enjoyed doing and rebuild them into manageable pieces that I can cope with. As I mentioned above, I have begun that process today. I have sorted some of my fabric lengths and decided to donate several of them in a particular direction. Much of the stuff that I have was given to me to use for charitable purposes so, obviously, I must be mindful of that when deciding who I should give to. I think this process is going to take some time but I think it will be time well spent. At the end of it, I hope to be able to concentrate on using my energy on projects that give me a different kind of joy to that which I am used to experiencing through my crafting. In some ways, what I am working towards could be seen as quite selfish, but I feel that it is what I need to do to help me during these changing times. I need to find my new ‘normal’.

Quick Step, Anyone?

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My late mother, who was a lifelong dance-a-holic

I’m assuming that you are familiar with the “slow, slow, quick, quick, slow” of the ballroom dance called the Quick Step. Those instructions comprise one of my strongest memories of my childhood. My sister and I used to go to ballroom dancing lessons every week in a small hotel which had its own modestly-sized ballroom.

There’s not much chance of me doing the Quick Step at the moment. I’d be fine at the “slow” but the “quick” would be more of a problem. Well, I say a problem but, really, it would be missing completely. As you might guess, fatigue is being an absolute pain in the proverbial. Whilst we were on holiday I was pretty sure I would be hit by the post-adrenaline crash when we reached home. However, surprisingly, it didn’t quite happen like that. We arrived home last Saturday evening, and I was feeling just the usual weariness that comes after a long journey. On Sunday, I was a little tired, but nothing too awful. Come Monday morning, though, it was an entirely different story.

I was up and dressed at a reasonable hour (nowadays I often don’t dress until late morning). I was planning to go to meet a couple of friends, although I really didn’t feel much like it. I was very relieved to receive a text message from E saying that J was away and that if I still wanted to meet, she would get ready and see me half an hour later than originally planned. It gave me the perfect excuse to withdraw. That was important to me because I so often feel that I am letting them down when I have to cancel arrangements.

Rather than having a protracted text conversation I rang E to chat. Within a few minutes of ending the call I went to sleep… for several hours! And it feels as though I have been sleeping ever since.

I think this may have been my worst week of fatigue during my whole Fibro (and now also CFS) journey. I sleep for an hour or so after my first cup of coffee in the morning. When I waken I attend to a small task downstairs, planning to wash and dress immediately after, but the task wears me out and I collapse in a heap in the chair. Cue more sleep. I wake again and go upstairs (a huge effort, in itself) and force myself to deal with another small task in addition to washing and dressing. Fatigue rears its ugly head again so that I am feeling dreadful by the time I get downstairs. Oh, good, there’s my chair: I can collapse in another heap. Oh! I’ve fallen asleep again!

I think you get the picture.

There are things that I wanted to do this week and I haven’t managed any that needed me to be outside of the house. FPR and I went to see his mother one day but that was a mammoth struggle which took its toll the following day.

It has been difficult during the past few weeks to keep any sense of humour about things but I’m hoping that it will return soon. In the meantime, I have realised that I need to have a serious think about adapting the way I live my life to cope with the restrictions that fatigue is forcing upon me. It will have to include the craft activities that I do and may well mean some serious stash-busting will have to take place. I wonder where I can find some energy to deal with that? Ideas on a postcard, please.

 

 

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.

 

Support Group, Anyone?

My lovely boy.
My lovely boy.

I think I have mentioned previously on here that I don’t read up on Fibromyalgia. When a new symptom appears, I make a quick search online to see if it is connected to Fibro. When I was first diagnosed I made the mistake of reading about it, but I very soon recognised the error of my ways. For many people, learning about their condition is an important and useful part of living with it. However, I find that I cope better if I don’t know. I’m the same when it comes to having any treatments. In fact, I am so bad that a consultant once operated on me, rather than carrying out the lesser [and more appropriate] treatment, because he knew I wouldn’t be able to cope with being awake and aware of what was going on! His was exactly the right course of action. I like to know the details after the event, not before.

Anyway, when I was diagnosed with Fibro, as well as reading about it, I joined a few support groups on Facebook. One year on, I am thinking of leaving those that I haven’t already ceased to be part of. Let me say at this point that, in general, I think support groups can be a marvellous thing but, for me, when it comes to Fibro, they are not really helping. Allow me to explain why.

You will have noticed that I don’t tend to have much pain associated with my Fibro. I have several other symptoms that cause difficulties for me, but pain is not one of them. However, pain is what most people equate with Fibro. Usually, if I tell someone I have Fibro, if they have any knowledge at all about the condition, they make the immediate assumption that I suffer a lot of pain. This seems to hold true within support groups, also. It feels to me, that many people with Fibro, will not believe that someone has Fibro if they don’t have the pain associated with it. It’s almost as though they are wishing the pain upon people! Not only that, but often, people who do have pain can come across as quite aggressive in the way that they speak. Some of the posts I have read in a couple of the Facebook groups are quite unpleasant. Now, I know that being in pain can cause anyone to be short-tempered, but it doesn’t excuse the nasty comments that I have seen in what is supposed to be a support group.

I have seen the phrase “Fibro Warrior” used to describe people living with Fibro. OK, be a warrior if you want to, but please remember that the ‘enemy’ is Fibromyalgia, not your fellow sufferers!

I know that I am not the only person who has noticed this phenomenon as within the last couple of weeks someone else mentioned it in a post that we were both responding to. Indeed, within just the past few days, I have seen a woman being verbally attacked by another member of a particular support group because she goes to work. The assumption of some people with Fibro seems to be that no-one with Fibro is able to work: they seem to forget that everyone’s experience of Fibromyalgia is different. That difference is not wrong, it’s just different.

As for the support groups, I haven’t yet made a definite decision about whether to stay or to leave. I shall probably just go with the status quo, for the time being.

How Can Something So Easy Be So Difficult?

Penguins get cold too!
Penguins get cold too!

The tiredness and fatigue are continuing but not in the same way as I have had previously. Sometimes, when I am sitting, I feel fine but, as soon as I try to do anything, I have no energy whatsoever. I have been wanting to get some laundry done for several days but I have a problem. The laundry bin is upstairs and the washing machine is downstairs. I go upstairs to sort the laundry but, by the time I reach the top of the flight of stairs, I am totally exhausted – certainly too tired to sort the laundry! This has been going on since the end of last week! It’s so silly, isn’t it? Such a simple task but it has taken me several days to work out how best to achieve it. Even then, I set the washing machine to do its longest wash so that I could have a decent rest before tackling the next part of the process… taking the clean washing out of the machine and putting it somewhere to dry.

I have to admit that I have found the laundry challenge frustrating. I’ve lost count of the number of times I attempted it, times when I thought I had much more energy than I actually did, but, at last, it is done. Thank goodness.

The fatigue has been affecting me differently for the past couple of days: I can drag myself around slightly more easily than before – it hasn’t been suddenly striking me as I walk across a room. No, it hasn’t done that, instead it feels as though I am dragging a heavy load across Antarctica in hurricane force winds. To say that my limbs feel as though they are made of lead is just too glib. It doesn’t give any idea of the sensation that I have of them dragging behind me so badly that they are being stretched out of their sockets and simultaneously sucked into quicksand. I know that sounds like a strange description but, believe me, it’s a really weird feeling.

It’s a strange so-and-so, this Fibromyalgia. It keeps changing the way it affects me. I start getting used to a particular symptom but then it decides to change the way the symptom manifests itself. It really isn’t playing fair! Would someone tell the referee, please?

The Danger Period

Market Day, Uzbekistan
Market Day,
Uzbekistan

At long last, life has calmed down somewhat, although it did get considerably worse before it got better. However, at least I have just one person in hospital now and the ‘life and death’ urgency has eased for the time being.

As you may imagine, the levels of stress have been almost unbearable and have stretched to bursting almost every seam of my being. As so often happens, now that the stress is less acute, its effects are now being well and truly felt – both mentally and physically.

In addition to Fibromyalgia, I also have long-term depression and anxiety. Whereas with Fibro I am still very much a learner when it comes to managing how to live with it, with depression and anxiety I am something of an old hand. There are periods when I go into a state of “lock down”. Sometimes that’s a good thing, sometimes not. I think that I am getting better at recognising which is which. At the moment, it is a good thing. I am mentally and physically exhausted by the recent events – and it shows. The Fibro is flaring, causing tiredness, fatigue, incessant tinnitus, dizziness, Fibro fog and bowel problems, amongst other things. Mentally I feel very fragile: I can become upset or unsettled by the slightest thing and, for much of the time, I feel unable to cope with what is happening, let alone deal with day-to-day things that need attention. Worse than that, my anxiety levels are up and I have been having panic attacks. Thank goodness for my “emergency” medicine!

When Peter and I were preparing to fly to Australia in May, Dr. Azeer, my GP, advised me to make full use of my emergency medicine during the trip. He even wrote a prescription for a 100ml bottle of it, so that I could carry some in my hand luggage without fear of it being confiscated!

I had cause to use the emergency medicine on Saturday and, since then, have been taking things very quietly and carefully to try and avoid the need to take more. I am definitely in “lock down”. The only person I speak to, outside of my family, is the friend in whose house my sister now lives, because it is she who answers the phone when I ring. I rang ‘Little Sis’ (her nickname, not actually a relative) on Wednesday of last week to let her know how things were and said that I would rather not talk for the time being. I am very lucky, we are extremely close friends and she understands my coping strategies so wouldn’t have been at all offended. I know she worries about me which is why I have said that emailing is fine. As for most other people, I am keeping my distance – it’s what I need to do, at the moment. I have to be selfish as I don’t have the capacity to cope with anything else. It’s not a good way to be, but it’s the way that’s familiar to me. If I crumble mentally, I’m worried that the Fibro will swamp me physically. And I don’t want that.

The Up-Side Of Fibromyalgia! (I’ll bet you didn’t know there was one, did you?)

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I’m writing this post at 09:50 BST or 16:50 Singapore time. I am struggling to keep up with what the time is or should be and, as for times to take medication… who knows? I am totally confused. I keep trying to figure out what day it is and, once I know that, I can start to think about what time to take my tablets.

I went to see my lovely GP, Dr. Azeer, on Tuesday. We discussed my imminent trip to Australia and agreed that we would pause the changing of dosages of the Amitriptyline for the time being. It can be resumed upon my return to the UK. Although Dr. Azeer had previously advised me not to travel to Australia during the drug changeover period, he immediately rescinded that and agreed that I must go. That’s one if the things that I really like about him: he takes into account what’s happening in his patient’s life when proposing how to deal with a condition. He agreed with me when I stated that I have the rest of my life to recover from the rigours (both emotional and physical) of this trip, and that could be a l-o-n-g time, whereas my sister doesn’t have that luxury.

For the time being, adrenalin still seems to be keeping me going. (I don’t want to imagine what I might be like when adrenalin is taken out of the mix!) however, a new symptom has appeared: I have been having pain in the back of my hands. Luckily it is intermittent and only mild, but it’s a new symptom, nonetheless.

There you go, there is an up-side to Fibromyalgia: you learn something new about it (almost) every day!

Well, I Never Expected That!

Birds Over The Bosphorus
Birds Over The Bosphorus

This post will be slightly different from my recent ones. In fact, it should be brighter and more positive. You will probably have guessed the reason for e change but, in case you haven’t, allow me to enlighten you…

I have just had several fairly good days! It’s great, isn’t it? It has done me a heap of good realising that I am still able to have days when I feel almost like the real me, rather than the Fibro me.

Although the days have been fairly good, it doesn’t mean that I haven’t been having symptoms. Actually, I’ve had quite a few of those pesky things including back pain, loss of sensation in my fingers (when I was hand sewing during a class that a friend and I attended), sore fingers, Fibro fog, pain around my left hip and in my left upper arm, generally aching in much of my body, freezing cold hands and feet, tiredness and fatigue. Oh! And a raging thirst due to the Amitriptyline. However, it has been easily manageable most of the time. I think that as time goes on and more symptoms appear, I am learning to cope with having Fibro because my knowledge and experience of Fibro are growing. Well, you know that they say: “Knowledge is power”. Also, most of the symptoms I am getting, apart from the tiredness and the fatigue, are tolerable as they are not severe and I am very grateful for that.

I think that learning to live with Fibro is hugely important and I am trying to do that. I can recognise when I am going to be assaulted by tiredness and exhaustion by the way in which I start yawning: there is a specific way in which I yawn at those times. Only this morning I was able to recognise the signs and scurry off home before the tiredness hit. Also, when I am becoming over-tired, I begin to suffer pain in the thoracic region of my spine, so I know to take appropriate action.

It is taking me a while to learn to live with Fibro but at least I am heading in the right direction. Mind you, I could do with a crystal ball to tell me when would be the best time, Fibro-wise, to visit my sister in Adelaide. The trip will be challenging for all sorts of reasons and there won’t be anyone around to help me, particularly if I have a Fibro flare while I’m there. Hmmm. Scary stuff!

Fancy A Tipple?

I have just learned about another symptom of Fibromyalgia: thirst.

I had been noticing that I kept feeling thirsty and was drinking more. Mind you, the realisation took a while to register. For some time I have been waking at around 4:00 some mornings and have gotten up because I wanted a drink of some sort before trying to get back to sleep. A sip of water from a glass at the side of the bed just wasn’t going to hack it. I would go downstairs and make myself a cup of coffee then thoroughly enjoy drinking it. Usually I would sleep again after having that drink.

Actually, just typing the last paragraph has just made me realise the significance of the late-night coffee that I have been drinking regularly before retiring to bed. Surprisingly, the coffee doesn’t keep me awake!

In addition to these extra cups of coffee, I have also been drinking more cold drinks during the day. In fact, I have noticed that sometimes during a meal I can drink two or three glasses of water.

I hadn’t realised the significance of the increased amount that I have been drinking until one day last week when I received the latest newsletter from . There was a link to a by Plymouth University which is investigating whether there is a biological cause of Fibromyalgia. One of the questions in the survey asked about being thirsty: that was when my increased (non-alcoholic!) drinking made sense.

Isn’t it strange how we happen upon information? Even though I am not actively seeking information about Fibro, it seems determined to find me!