Onward And Upward.

A very special gateway...
A very special gateway…

Things have been a bit odd over the past two or three weeks. The Fibromyalgia has been “different”. I was prepared, or as prepared as one can be, for a full-on Fibro Flare, but I wasn’t prepared for “different”. I was taken by surprise.

What do I mean by “different”? Well, the bits and pieces of symptoms that I have had, have behaved differently from how they usually are. For example, today I have been having pain in my legs, but it has felt different. Also, I have had stabbing pains in my hands, as well as my feet – I’ve not experienced those pains in my hands before. The dizziness has also been different from previous occasions. Unfortunately the nausea has been awful. I have a sneaking suspicion that it is due to the Amytriptyline so I have reduced my dose by 10mg – but don’t tell Dr. Azeer because I haven’t told him yet. 🤔 I certainly haven’t had a flare-up during these last three weeks and for that I am extremely grateful. There has been so much to do: telephone calls made and received; appointments with all and sundry, in various locations; information to find; decisions to make; places to go; packing to do; clearing; avoiding nosey gossips. (As for nosey neighbours, here’s a handy tip: ** it’s amazing how useful the phrase “Well, you know…” can be – it answers the enquiry without actually revealing anything!)

At the moment life is less stressful than it has been. In fact, yesterday someone commented that I look really well – and, when I looked in the mirror, I saw that it was right! I DO look well. I look much better than I have for a long time. I’m hoping that things continue like this for a while, so that I have time to really enjoy it. We’ll have to see how that goes, won’t we?

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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!

Look After Yourself

That about sums it up!
That about sums it up!

I received a tweet today from @NLOFibromyalgia asking me how I deal with stress and Fibromyalgia.

When I first read the tweet I thought it was an easy question to answer. However, whilst sitting here thinking of what to write in this post, I have realised the question is anything but easy to respond to: what symptoms of Fibro will people assume I have? How much stress will they imagine I have in my life at the moment? I learned an important lesson about stress during the Los Angeles Olympics in 1984. My younger son, still a babe in arms at the time, was seriously ill in hospital. I was chatting with two of the other mothers and the inevitable question was asked: “why is your child in hospital?”. The first mother said that her daughter was having the plaster cast removed following an earlier operation on her ‘clicky’ hips. I told them about my son then the third in our little group told us that her daughter “B” had cancer of the spine. The first mother said how awful it was for “B”‘s mother and that our problems were nothing compared to hers, whereupon “B”‘s mother replied that they were our children and their problems were big to us. She also said that it didn’t matter what she was going through, our problems were big to us. Her daughter, “B” died the following day.

I always try to remember that lesson, although I often fail. However, what I think it shows is that it’s difficult to measure stress levels and convey them in such a way that others can relate to them. The best I can do is to say that I have been suffering particularly high levels of stress in my life for more than two months now. At various times during that two-month period, my Fibromyalgia has made itself felt mainly in relation to my energy levels but also by tossing some new symptoms into the mix. However, I am very fortunate as, so far, I have not experienced the high levels of pain that other people have to endure. That’s not to say that the Fibro doesn’t make itself felt, it does. As well as the fatigue, I’ve had nausea, dizzines. intrusive tinnitus, poor concentration and niggles of pain in various places. However, I am convinced that the Fibro has been pretty much kept at bay by adrenalin: I haven’t been plagued with major problems, thank goodness. I must add, though, that I am lucky to be blessed with amazing support from those around me: my partner, my sons, my best friend and the members of the craft groups I attend. In addition, my GP and I have an excellent patient/doctor relationship. He understands how my mind and body react to stress and takes it into account when suggesting any treatment.

So, returning to that tweet, how do I cope with stress and Fibro? With the love and support of those around me, a great GP, gallons of adrenalin and and a bit of luck. Long may it continue, but I rather think that, when these stresses have eased, I will be hit by a major Fibro flare. Oh, well! I’ll just have to deal with it when it arrives, won’t I?

A Very Strange Sensation

Looking forward to my "special place"
Looking forward to my “special place”

There was something odd about Sunday, but I couldn’t quite put my finger on it. A strange sensation that I knew should be familiar, although I couldn’t quite figure out what it was. By Monday morning, however, I had realised what was different… I wasn’t feeling completely stressed out. In fact, I think I would almost go so far as to say that I was really rather r-e-l-a-x-e-d. Yes, really! It’s no wonder I didn’t immediately recognise it as it’s been a while since I have felt that way.

And, it didn’t just happen on Sunday: it continued in to Monday, and even Tuesday. It felt absolutely, bl**dy amazing! Not only that, but there was precious little evidence of the Fibromyalgia to be found on those days.

Ooh, I really enjoyed that light-headed feeling! Which was just as well, as I was back down with a bump yesterday: feeling myself winding up, familiar twinges of Fibro-related pain and tiredness leaping upon me, making me feel decidedly unwell and that awful dizziness compounding matters. Luckily, the tiredness and feeling unwell lifted after I had gone to bed in the afternoon and rested for a couple of hours. I usually don’t like to return to bed during the day but, yesterday, bed felt like the only place that would help.

Today has been different again. Today I have been literally faced by one of the two enormously stressful situations that are going on in my life at the moment. You could be forgiven for thinking that I had turned into a politician today as, clearly, there have been questions that have had to be asked and difficult decisions to be made. I am on the horns of a dilemma. I try to be a truthful and honest person, but sharing the truth with two of the most important people in my life will cause each of them pain and anguish. On the other hand, if I lie to them, instead… well, I’m lying to them, aren’t I? And I’m being dishonest, at a time when they deserve the respect my being honest would afford them.

It would be fair to say that I am currently in an unenviable position. Not only that, but so are the other most important people in my life: they can see what is happening but are powerless to help.

I cannot express how thankful I am that the Fibro is allowing me to function. I really don’t know what I would do if the inevitable flare-up were to appear in the midst of all this.

Yesterday, Today, Tomorrow?

Hyde Park, Sydney
Hyde Park, Sydney

It’s a while since I posted anything here, isn’t it? The reason for radio silence is that, with regard to the Fibromyalgia, things have been uneventful. I have had tiredness and fatigue, but not to any extreme. I have also had some mild pain, which went as quickly as it appeared, and other bits and pieces of symptoms which are not worth mentioning. However, the tinnitus continues to intrude and, at times, can feel unbearable.

My main difficulties recently have been stress-related: anxiety and depression (A & D). Although I am aware that Fibro can cause A & D, I have suffered from both for very much longer than I have had Fibro. Yes, I know lots of people have Fibro for a very long time before it is diagnosed, but Dr. Azeer recognised mine for what it was, or is, within a few weeks of it appearing. Consequently I view A & D separately from the Fibro. Anyway, the A & D have been playing up because my stress levels have been high. I am hoping that, now I’m feeling less stressed, the A & D will ease. In the meantime, Dr. Azeer has suggested I take regular doses of my emergency medicine to help me through. Whilst I haven’t been doing so, I have been taking it more than I was before I saw him this week.

During my appointment with Dr. Azeer, we discussed how well the amitriptyline seems to be controlling my symptoms. We also discussed the well-known effects of stress on Fibro i.e. Fibro Flares. We agreed that, with everything that’s going on, I could be susceptible. However, I told him that I do not intend to spend my life worrying about what Fibro might do to me: I will deal with things as and when they arise. I refuse to use all my energy simply counting spoons.

(By the way, he had never heard of the Spoon Theory.)

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 Telephones Are Red Hot!

image

It’s official: my Fibromyalgia is having a full-blown flare. Hardly surprising really, especially considering my belief (and, I believe, that of my GP) that the reason my body succumbed to Fibro in the first place was because of stress. And, boy, do I have plenty of that at the moment!

The saga of my mother’s stay in hospital continues. Not only that, but it becomes more complicated, seemingly by the hour. Wednesday was a particularly fraught day, made more so by the amount of travelling Peter and I had to do in order to attend a special event for his family. The day was very long and excruciatingly exhausting and I am still trying to recover from it. I’m sure I hardly need to tell you that Wednesday was the straw that broke the camel’s back. The Fibro flare hit with a vengeance. How dare I try to live a reasonable life with so much going on? Don’t I know I have Fibromyalgia? Well, yes, actually. I do know. There are times when one needs to not collapse in a heap, and this is one of those times. Unfortunately, though, no-one has managed to convince the Fibro of that.

These last two days the tiredness and fatigue have been extreme. At one point yesterday, I was so worn out I hardly had the energy to breathe. Have you any idea how much energy it actually takes to breathe in and then out again? Well, let me tell you, it takes a humungously huge amount! The effort required was leaving me feeling that breathing was counterproductive. In other words, I seemed to be using more energy actually breathing than I was gaining by taking in the oxygen from each breath. That sensation can feel quite scary.

I think yesterday the fatigue felt worse than at any other time since the Fibro invaded my body. I was totally wiped out. For most of the day I couldn’t do anything: I couldn’t concentrate on television or the computer, if I attempted to do any sewing I just felt heavy-limbed and enervated after just a few stitches. I was just a blob.

Today has been very slightly better but everything has still needed far more effort than I could realistically muster. Obviously I have still had to make lots of telephone calls to hospitals and the like, but it has been very difficult to stay on even keel during the calls.

I need the Fibro flare to subside but, for that to happen, there needs to be a significant reduction in my stress levels. Unfortunately, that is unlikely to happen any time soon.

Stress And Fibromyalgia

Singapore, May 2015
Singapore, May 2015

I think most people who have Fibromyalgia would agree that it reacts badly to stress. My GP and I are both pretty certain what the catalyst was for my Fibro – and it was a prolonged and very stressful situation.

I don’t cope well with stress. In years gone by I could cope with it pretty well but now, as I tell people, I have run out of ‘cope’. If I encounter a stressful situation, my stress levels shoot right up, way off the scale. My reaction is disproportionate to the amount of stress that is happening and, of course, now I have the additional element of Fibromyalgia and all that goes with it. Mixing stress and Fibro is best avoided, if possible. Certainly, for me, stress can trigger a Fibro Flare, which, I think, is what has happened to me in the last few days.

I have been in the midst of lots of nasty stress-inducing events over the past couple of weeks and I think it is now taking its toll. My Fibro, which has been very well behaved for about three months, has kicked into overdrive. My tinnitus has worsened considerably and, at times, interferes with my ability to hear clearly and to distinguish between sounds that are solely inside my head and external ones. It’s very disconcerting when one is listening to music, only to have another, entirely different tune playing in one’s ears simultaneously. At times I can become quite distressed by the effects of the tinnitus.

Tiredness and fatigue have been a feature of this week. However, they are both manifesting differently from previously. That may be due to the effect of the Amitriptyline, although, of course, that may have nothing to do with it. Up until this last week, the tiredness and fatigue have been pretty straightforward: I’m tired so I fall asleep, I’m fatigued so I rest. It hasn’t been quite like that recently. The tiredness hasn’t made me sleep and the fatigue seems to be as much brain exhaustion as physical exhaustion. Usually, when the fatigue hits me, I will pick up my iPad rather than doing nothing, or I will watch something mindless on TV, whereas this last few days, I don’t even do that! All I can manage is to sit and just ‘be’. My ‘oomph’ has been missing. Actually, I am finding it hard to find an effective way to explain this changed phenomenon.

Worst of all, though, is the onset of stiffness, together with an aching sort of pain in lots of different areas of my body. My limbs and, indeed, my entire body, feel leaden. The aching is similar to the muscle ache that can be experienced during and after a bout of flu. The stiffness is there whenever I move: I look like a decrepit old fogey, shuffling along. Not the best look I’ve ever had!

Despite the stiffness and pain, I am pushing myself to do things. I don’t want to simply sit and vegetate, although that would be really easy at the moment. Only the other day Peter mentioned that I don’t seem to sit and do nothing very often. When I am seated, I can usually be found knitting or sewing, or some such and I intend to continue doing so.

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!

Spring Is In The Air

Sumptuous Silks
Sumptuous Silks

Well, when I say that Spring is in the air, what I really mean is that there has been something of a spring in my step. The spring began on Monday evening when the Fibro flare vanished… just like that.

Oh, wow! What an amazing feeling it was. One minute I was being dragged along by the Fibro, and the next I was feeling really good. I wasn’t tired. I wasn’t lethargic. My head was clear. I hadn’t realised how fuzzy my head had been until it cleared. Rather like when the windows have been cleaned – you had no idea how dirty they were until they’d been cleaned. And it wasn’t just me who noticed the difference. Little Sis and Peter both saw the change in me. My speech was clearer, my whole demeanor had altered.

The improvement has been almost constant since Monday evening. There have been two or three blips but they were nowhere near as bad as the flare had been. The first blip was, I believe, brought on by stress. It took a couple of hours to ease off, by which time I was feeling more relaxed. The second hiccough came last night when I went to bed. As with the first, I was feeling very nauseous, but I don’t think that the second one had anything to do with stress. The third blip happened this morning and took the form of sleepiness. Again, it lasted just a couple of hours or so.

I’m not sure whether the nausea is related to the Amitriptyline as my dose has reached 70mg. On checking the list of side effects for Amitriptyline, it appears that I may have several, although it may just be coincidental. It is obviously something that I need to keep my eye on and discuss with my GP. Oh, well. I don’t want to think about that for the time being: I would rather simply enjoy this fairly good period.