Continued. Continuous. Continuing.

Singapore City, May 2015

Singapore City, May 2015

I can’t be sure whether how I am feeling is due to Fibromyalgia or simply reacting to events.

Life continues to be very stressful. It feels as though it is never-ending. I am so, so tired and everything is an effort.

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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.)

Time For Musical Chairs

Luscious-looking lovely chocolates

Luscious-looking lovely chocolates

Life is the same, but it’s different. I still have a lot of very stressful “stuff” going on but it is changing shape. No, it’s not changing shape: what’s really happening is that one of the huge things is building to a crescendo. And it’s scary, really scary. As far as my health goes, it seems to be the “scary” that is causing the most problems, rather than the level of stress. Consequently, the Fibromyalgia is no longer in the driving seat. It has been relegated to the position of backseat driver, with anxiety doing the driving and depression sitting firmly in the navigator’s seat.

As far as the Fibro is concerned, my main problems are tiredness, fatigue, tinnitus and ocular migraine – but, they’re a doddle to cope with compared to everything else that’s going on. Thank goodness I have Peter around to support me: he is helping me more than he knows.

New Things Are Happening

Tree at Aphrodisias

The major stresses in my life recently are continuing. The levels of stress vary but are consistently high and the impact on my health and wellbeing becomes more apparent.

My mood has lowered during these last three weeks and I am having to monitor myself carefully to ensure that I don’t slide down into the dark pit. The situation vis-a-vis anxiety is slightly different, as there have been fluctuations in the level. Generally speaking, I have been suffering more anxiety lately and have had to resort to taking some of my emergency medication on occasion. I really do keep that medicine as a last resort so, having had to take some, is disappointing. Disappointing but not surprising.

As for the Fibromyalgia, I am still of the opinion that I am very lucky. Considering how difficult life has been for some time, I am amazed that my symptoms have not been worse than they have. I am definitely getting more tired, more often and the fatigue is also more apparent. In case you are wondering about why I use the two words “tiredness” and “fatigue” I will explain. I use “tiredness” to describe the times when I feel sleepy and when I feel the sort of tired anyone might feel after physical exertion. “Fatigue”, on the other hand, describes when my energy suddenly disappears and I feel as though I am trying to walk through a wall.

I have previously mentioned that the tinnitus has increased to a level that makes it more difficult to ignore. I am mainly hearing a level tone in my ears, albeit rather loud, but at least it is only a single tone and the ticking and other noises appear to have abated.

One symptom that has decided to make an appearance is pain. It has been generalised pain, all over my body, and low level. I feel stiff and it seems as though I ache everywhere. Not only that, but at times when I am moving around, the best I can manage is an undignified shuffle. However, I am very thankful that the pain has been mild and I have not needed to resort to painkillers – plenty of time for those in the future.

 

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.

Shall I Go Up… Or Down?

Dandelion fountain in the King's Cross area of Sydney

Dandelion fountain in the King’s Cross area of Sydney

In my last post I talked about the medication transition process, including how long the whole thing was taking. Since then, a new twist has appeared in that particular road. Would you believe that my Amitriptyline dose has increased? I know. Pretty unbelievable.

Even before my last post, I had noticed that my mood was dipping. Having suffered several major depressive episodes, I was lucky enough to be able to recognise what was happening. By that, I do not mean that if someone has been depressed before they are able to tell when it is happening to them again, but, rather, that I saw what was happening and somehow my mind managed to realise the risks involved – usually it doesn’t realise and so off I go down that slippery slope.

As I say, I recognised the risk. I had also noticed that various Fibromyalgia symptoms were beginning to crop up, albeit mildly. I tried to arrange a telephone consultation with Dr. Azeer but it wasn’t possible. I had wanted to discuss my thoughts that the low mood and the appearance of the Fibro symptoms were linked to the decrease in my Amitriptyline dose. As I couldn’t speak to Dr. Azeer and the weekend would occur before I managed to speak to him, I did something I wouldn’t normally do: I increased the Amitriptyline. My dose had dropped to 10mg the previous day but I decided that it would be a good idea to put it back up to 20mg. My reasoning was that it would be a while before I could be put onto another drug and for it to start being effective, so I might have more success with what I was already on. ***

I saw Dr. Azeer on Monday of this week to discuss how things were going and to tell him that I had upped the amount of Amitriptyline I was taking. We talked about the pros and cons of continuing with the Amitriptyline and of going back to taking Citalopram for the depression. For the time being, I shall continue on Amitriptyline, albeit on a lower than ideal dose, and we will review the situation in four or five weeks.

*** I do not advocate changing the dose of any medication one has been prescribed: always seek professional medical advice.

And The Beat Goes On

Windows and a Tree

Windows and a Tree

The period from my last post until now has been very similar to the days that post described. I have definitely been below par: whenever I felt that I had energy, it would soon melt away as soon as I began to do anything. The pool of fatigue that was left would be eased by my sleeping for a while, but wouldn’t disappear over the horizon.

One problem with having the fatigue hanging around on the horizon, never really disappearing, is that it makes me fearful of overdoing things. I daren’t walk to the postbox in case I suddenly walk into that wall of complete exhaustion. If I go to Tottington on Thursday evening, will I be able to drive home safely, or will I be completely overcome by tiredness? I knew that I had these feelings but I hadn’t realised how much they were affecting me until I was discussing them with my GP, Dr. Azeer, on Friday morning. Once I began to talk, all sorts of things came to the surface that I hadn’t really thought about. In truth, I think I have been afraid of thinking about them. I didn’t want to be swamped by negative feelings about Fibro: after all, if that happened I might not be able to find my way back to the surface…

It was quite a revelation to me, hearing myself vocalising those thoughts and feelings. It wasn’t surprising that my mood was low when I left.

Dr. Azeer and I also discussed how I had been since beginning to take Gabapentin and, more particularly, since I had been on the maximum dose. I told him that I had been completing an online diary relating to the Fibro which I had found useful as it helped me to keep track of my symptoms. (The online diary is one of the elements of http://www.patientslikeme.com .) I told him that I was still experiencing frequent bouts of fatigue and that I had only had three “Very Good” days since November. He explained two possible regimens and, together, we decided to phase out the Gabapentin with a view to my changing to Amitriptyline. This will also require me to cease taking Citalopram as it cannot be taken in conjunction with Amitriptyline. What we are hoping is that taking Amitriptyline will effectively treat the fatigue caused by the Fibro, as well as my long-standing depression – a tall order but worth a try! I have detailed instructions for how and when to reduce the dosages, when to stop and when to start, what dose to take of the new drug, when to increase it and how much to increase it by! I made sure to write it all down so that I don’t forget nor become confused about all of it.

My goodness, there’s a lot involved in this Fibro lark, isn’t there?

What A Challenging Day.

Yesterday was a very difficult day. It was challenging both emotionally and physically. I don’t intend to share the emotional challenges as the actual detail of them is not for public consumption. They did, however, impact greatly on my day. My mood was extremely low for the duration of the daylight hours: lower than it has been for a long time. In fact, it was worryingly low.

I have long-term depression and anxiety and, because of this, I try to be aware of possible problematic changes in my mood. My state of mind is easily affected by external factors, as well as internal, and the situation can become worryingly acute in a short space of time. Luckily I have some leeway with my medication to help me through glitches.

Having only developed Fibromyalgia very recently, I am not yet familiar with how it reacts to changes in my mood. However, the signs were not good yesterday. All day my movements were sluggish and I was very quiet. I was trying to sort out what I need for our forthcoming trip but I was failing woefully. Usually I pack at the last minute – either the night before departure or, if we are leaving after lunch, I will pack on the day of departure itself. However, I had felt the need to be more organised for this trip – partly because of the nature of the holiday and, probably more realistically, because of Little Miss Fibro. But it just wasn’t happening. I kept trying to work through a category of item and pull together the relevant items, ready to be packed, but my heart just wasn’t in it. I kept sort of slowing to a stop and going off for a coffee, or a rest. I knew that I should really get stuck in, but I simply couldn’t. It just wasn’t happening. (Am I beginning to sound like a low-budget movie? It’s feeling like that to me.)

I had little, or no, motivation, I was lacklustre and my eyes looked continuously exhausted all day – you know that sort of drugged-up to the eyeballs, not-interested-in, not-connected-to anything look? That was how my eyes looked. It was a struggle to even start on sorting and packing, let alone finishing it. However, at long last I managed to complete Part I, the sorting. I went downstairs for, what seemed like, my 27th rest of the day – with coffee. As I began making the coffee the exhaustion approached. I tried to rush to finish the tiny tasks I was fitting it, but I could feel exhaustion taking over my body, inch by inch, seeping into every nook and cranny. I managed to do those tiny tasks and to actually put the boiling water into the mugs without scalding myself… then I collapsed into the chair. I didn’t even have enough energy to crumple!

Oh, boy! What an attack! I was virtually paralysed in the chair. I couldn’t lift my arms or hands, not even a finger, without a huge amount of mental and physical effort. My mind couldn’t think. All I could do was breathe. I felt as though my body was being squeezed by the exhaustion, preventing me from moving a muscle. When I spoke to Peter he could barely hear me as my voice was just a whisper – it was such an effort to make my vocal chords work. It almost feels frightening when I have have that “almost paralysed” stupor, but not quite, as I am confident that it will pass. Having said that, though, this episode and its after-effects, lasted much longer than previous episodes. It took several hours to shake it off, about four and a half or five.

Once all of the symptoms of that episode had passed I felt much brighter in mood, livelier and more able than I had done all day.

The experiences of yesterday have brought home to me how much I have to learn about living with Little Miss Fibro. I know that I was having to push myself yesterday and I saw the possible consequences of that. Another steep learning curve under my belt!

My First Day Following Diagnosis

Yesterday my GP confirmed the diagnosis of Fibromyalgia.

I was so disappointed. He had mentioned Fibro before as a possibility, but we had also talked about post-viral malaise and I had tried so hard to be optimistic. That in itself is unusual as I am normally a pessimist, as my younger son would tell you.

Being told I have Fibro has resurrected feelings of failure in me. I know that there is no need or reason for me to consider myself a failure, but I do. I don’t have to explain or justify those feelings but I will try to explain.

I have long-term anxiety and depression. That fact, in itself, causes me to feel like a hackneyed old cliche: middle-aged woman suffering with her nerves. However, it also makes me feel that I have failed my sons and my grandchildren. I know that there are times when my sons become more concerned about me and that makes me feel worse, as though I am a drain on them. Little Sis worries about me which increases the pressure I feel under. I know it’s lovely that people care, but it can also be rather onerous. Luckily, Little Sis understands that when something knocks me down I don’t usually want to talk for a while. That was definitely how I felt yesterday. I didn’t want to talk to anybody. Oh, I rang my mother to tell her about the diagnosis but, apart from my partner, I didn’t speak to anyone else about it. What I did do was put it as my status on Facebook. Usually I would pour scorn on someone who shares information of that sort on their status, but I wanted, or maybe needed, other people to know – I just didn’t want to talk to them. Being the awful mother that I am, I left it for my sons to find out by reading my status. Both of them knew it was a possibility and both had been showing signs of heightened concern, so obviously they needed to know, but I simply couldn’t muster what I needed to talk to them. Sorry, boys. I love you both dearly and I hate being the cause of any worry for you, but I needed to be selfish last night.I

I received lots of lovely supportive messages on Facebook which gave me a lovely warm feeling inside but I still felt really miserable.

When my GP first mentioned Fibromyalgia I did the usual thing of looking it up on the internet – but I soon gave that up! I knew that if I continued reading about it I was likely to talk myself into many of the symptoms. In any event, I know several people who have Fibro, and I knew I could ask them if I had any questions. However, now that I have received an actual diagnosis I need to find out more.

I have been reading about it this morning and have recognised some of the symptoms. Oh dear! It’s making it more difficult to believe that it’s not really fibro. I decided that it would probably help me if I wrote a diary about my Fibro Life and it might also help those closest to me to understand how things are for me.