It Was A Cold, Dark Midwinter Night…

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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!

 

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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.

 

 

Taking Care Of Oneself, Bossy-Style

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Last time I posted on here I mentioned that I was coming off the Amitriptyline and not replacing it with any other medication for the Fibromyalgia. Having gradually reduced the Amitriptyline, I took my final dose just over a week ago. So far, things are going well. OK, I know it’s only been a week but it’s still worth recording how the Fibro has been behaving.

I have been having some of what I call the “side” or “small” symptoms, but, by and large, they are easily manageable. The nausea hasn’t cleared up completely which makes me wonder if it had a different root cause, all along. Alternatively, the cause may have changed during the time I was coming off the Amitriptyline: time will tell. I have had some dizziness, including one very unpleasant bout, but it hasn’t caused any real problems in my day-to-day life. The tinnitus is not as instrusive as it was whilst I was on the Amitriptyline. My internal thermometer is playing silly wotsits, but it’s not a problem – in fact, it’s quite novel to have cold feet! As for the tiredness, it has increased slightly but is not a big issue. I have been keeping strange hours lately as I’ve had to make lots of telephone calls to Australia in the middle of the night! Generally, if I’ve been on the phone a lot during the night, I have a bit of a lie-in in the morning, which seems to be keeping the worst of the tiredness at bay.

What I have noticed, lately, is that I am not doing much. Usually, whenever I sit in my armchair, I do some knitting, crocheting or sewing. However, over the past two or three weeks or so, I have spent an unusual amount of time just sitting doing nothing, or surfing the net. I seem to be happy to live life more slowly, at the moment – and that’s perfectly fine. After several months of extreme stress, now that half of that stress has lifted, it feels ‘safe’ to allow myself to slow down. In fact, I have slowed down to such an extent that I am actually relaxing! I can definitely feel a very welcome difference in the way that I am. Not only that, but I have even been told how well I look, by several people!

Perhaps my ‘baby’ boy was right about the Fibro disappearing, now that the cause has gone?!?

You Might Say It’s Been Quiet But…

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April Sunrise

There doesn’t seem to have been much happening here lately, does there? Well, actually, that’s completely wrong as a huge amount has been happening. So much, in fact, that Fibromyalgia hasn’t really had much of a look in. That doesn’t mean that it hasn’t been making itself felt – it has – but, rather, that I haven’t really had much of a chance to think about it, except when it decides to bare its teeth. Even then, I have tended to just sort of acknowledge that it is still around and then dismiss it to the back of my mind.

The symptoms I have been having are the ones that I tend to think of as the “side” symptoms, or “small” symptoms. By that I mean that they are inconvenient, uncomfortable and unpleasant, but they don’t exactly stop me from doing things. However, again, I think that adrenalin has had an enormous part to play in this. Some of the stresses of the past three months increased considerably recently which meant that I had to focus on certain things.

Luckily the dizziness and nausea didn’t prevent me from doing everything that needed to be done. They were certainly a nuisance and felt rather nasty – particularly the nausea – but, in order to get everything done, I would do some things, rest, do some more, rest again and so on. It was handy that the nausea tended to hit me during the evenings or nights, so it didn’t interfere too much with what I was doing. Phew!

Last week, the adrenalin wasn’t coursing around my body quite so vigorously. Consequently I felt drained. It wasn’t fatigue in the way that I have had it previously with the Fibro. Rather, it was an empty, lacklustre sort of feeling. I didn’t try to fight it as I knew that I needed to take care of myself. I have been running “on empty” for quite some time so was in dire need of some “down time”, so I simply took things easy last week.

Because of the reappearance of the nausea, I decided to reduce my dose of Amitriptyline last week. By the middle of last week I felt brighter so I increased the dose back to its previous level… Bad move. The nausea returned almost as soon as I took that higher dose! Accordingky, I have made an appointment to see my GP to discuss where we go from here. I really don’t want to continue taking the Amitriptyline: as well as causing nausea, it also puts me off eating savoury foods. In addition, I think it may be to blame for the increase in intensity of my tinnitus, which has been well and truly making itself felt. I don’t remember ever having suffered tinnitus at these levels previously.

Anyway, I am due to see Dr. Azeer early (too early!) on Wednesday morning so that we may discuss my medication. Keep your eyes peeled for an update from me, after that appointment.

Since Last We Met….

A gift from a lovely lady

A gift from a lovely lady

Much has happened since my last post: some rather amusing, some most definitely not. A considerable amount of activity was centred in or around hospital and/or medical staff.

On Wednesday of last week the goal posts were moved. It marked a huge sea-change affecting some of the stress that I have been under for the past two months or so.

Thursday brought forth an unbelievably good blood pressure reading, despite what life was bombarding me with. And then things got worse…

Throughout all the trauma, the Fibromyalgia has been kept at bay by the adrenalin surging through my veins. However, I am very aware that when life calms down I am likely to go into an enormous Fibro Flare, but there is little I can do to prevent it. For the time being, I am trying not to overdo things, but it’s not easy. I have a huge amount to do, much of which has a deadline, but I am trying to remember to rest in between tasks. It is very easy to slip into the mindset of “It’s easier to do it myself” but I am trying not to do that – seldom successfully. I am using various strategies to make things easier. For example, I am working on one thing at a time and then, when that task is complete, I move on to the next task. Working like that seems to reduce the amount of stress I feel.

I am also making copious notes. My brain is a little “Fibro-foggy” so making notes is helping me to keep track of what I am doing, what I have done and what I need to do. This particular aspect is not always as useful as it could be as various people are not hearing what I am telling them, resulting in them acting inappropriately and, consequently, creating more work.

The next thing I am doing is keeping things organised. There is a logic to what I am doing, although others may not think so! Things have been placed where they are for specific reasons so woe betide anyone who moves something that I have put in a particular place!

Space and time are looking as though they will be problematic but I think, if I continue plodding along, that I should be able to keep things under control.

As for the Fibro, I have been having more dizzy spells than I usually do and my sleep pattern is currently very disturbed. Oh yes, and the stabbing pains in my feet are dancing attendance, as is the anxiety!

All things considered, it’s a wonder that I haven’t ended up an absolute wreck, even without the Fibro. I am definitely thankful for small mercies. Long may they continue!

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.

At The Beep The Time Will Be…

Istanbul at night

Istanbul at night

Well, it’s 9.00 pm here in Adelaide and 11.30 am in the UK. I am very thankful that my body clock has settled down and acclimatised to the time here. I was feeling totally disoriented in Singapore. It may have been because of the 16 hour layover, but I am inclined to think that my body’s difficulties were, to a large extent, due to the Fibromyalgia. In any event, I am now coping with the local time.

I slept long and well last night: from around 10.30 pm to about 8.45 am. However, I awoke with crippling back pain which was made worse by any movement. After breakfast my eyes began closing as they do when Fibro sleep is calling. I went back to bed and slept for a good couple of hours.

I cannot be sure whether or not the back pain was Fibro-related, so the only symptom I can really blame on Fibro is this morning’s sleepiness. I hope I am right and that this, pretty much, Fibro-free period is a remission, rather than being caused by Adrenalin. No doubt I will find out soon.

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!

…and, breathe

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I think I have mentioned on here before that I think adrenalin may affect how Fibromyalgia acts. I have certainly noticed that I am not affected as much by Fibro when the adrenalin in coursing through my body. That seems to have been the case since Friday, when I last posted on here.

On Friday and yesterday I had a lot of arrangements to make and plans to think about. It’s all to do with some emotionally charged ‘stuff’ that’s going on at the moment. I have been pacing myself: doing a certain amount and then relaxing. There were some things that I had started before the ‘stuff’ cropped up and which I wanted to complete. It wasn’t vital or even particularly necessary that they be finished, but I wanted to finish them. I am really pleased that I did manage to finish most of them. The one thing that I didn’t complete by the end of yesterday has been worked on today and looks as though it will probably be finished within the next day or so. I am so pleased with myself, that I have managed to achieve so much in the midst of the ‘stuff’. As for Fibro, well, it has hardly made an appearance!

Given that my days have been pretty full – using my brain for some things and my hands for others – one could reasonably expect that Fibro would rear its ugly head, except that it hasn’t, really.

The only symptoms that I have had since the start of Friday have been a little pain in my upper right arm on two or three occasions, and Fibro Fingers this morning. Other than that, I have been fine. In fact, this past week has been pretty good. Still, I can’t help feeling that it’s adrenalin that has been responsible for the lack of symptoms since the ‘stuff’ reared its ugly head. Of course, it may be the Amitriptyline working wonders and I rather hope it is as, otherwise, I might be in for a nasty bump when the Fibro kicks in!