Sunday, 25 January 2015

My painful body...

Okay, let's be very clear about this, the illness I suffer with is called Fibromyalgia.

It is a very real condition, and not one that is 'in our heads', as many have wanted to believe, it belongs to a group conditions called "invisible illnesses", as it is not something you can see in a person.  It is very a personal illness and a solitary one at that.

But just to break it down,  'Fibro', relates to the fibrous tissue and muscles surrounding your joints and bones; and 'myalgia', relates to pain.  So therefore Fibromyalgia,  means pain in the fibrous tissues throughout the body.  But the condition itself is far more, far reaching, than just pain itself, and sufferers differ in symptoms, and severity.

This is chronic pain I'm talking about, not just minor pain that we all can cope with, but severe, on-going debilitating chronic pain, the kind that pain medication sometimes can't touch.

I tend to describe chronic pain, as severe pain that continues even after normal recovery or healing time has taken place, e.g. if you break a bone in your leg, of course it's painful, but as time goes by the pain subsides, bones mend, muscles heal and eventually; you are back to being fit and able to walk again, without issue.  However, with chronic pain that initial pain doesn't go completely, and continuously sends signals to your brain, saying it "still hurts"; and then blocks the signal from your brain saying "no it doesn't", even if you are fully recovered.  In my case, there was no obvious reason why I started to suffer with this condition.

It is not necessarily caused by injury, but I have heard it said; that like cancer, we all have it in us, and something triggers off a reaction, that stimulates it into action.  It could be an accident, trauma or a stressful situation, but whatever it is, once you have it, you have to live with it.  Because just like cancer, there is no cure for this illness, all you can hope for, is the best doctor in the world, and strong pain killers to help dull the pain.  If you're one of the lucky ones, meds really might help you to lead a 'normal' life; but if you're not, your chronic pain might just be eased a little, or as I say, the "ouch factor" has been removed.  I am pleased to say, that I have a fantastic doctor, who has listened and responded to my ever growing needs.  With hindsight, just like my depression, I have come to understand that this is something that I've had for a long time.  I remember when I first started to have painful hands and knees when I was thirteen, something I have written about in another post; and in my twenties having real problems with my neck.  None these problems went away, I simply got used to them and used avoidance tactics to get by, i.e. avoid anything that might hurt.

It still seems to be a little known illness, perhaps because the name doesn't just slip off your tongue, but the more I tell people, the more I hear back, that they know someone else.  Even the medical profession itself, is still struggling to understand it, and it takes people like me, to help educate them.  They can see things from a treatment point of view, but they need to see it through the eyes of a person 'living' with the impact and the limitations. But thousands of people suffer with this illness, and it is often, after all else has been exhausted that they diagnose it.  In fact it can take years of agony, before that diagnosis is reached and anything medicinally beneficial is gained.

With me, it was July 2008, when I awoke with the most crippling pain in my neck and shoulders, the area that is most affected by Fibro, and this pain would not go away.  I couldn't turn my head, lift my arms, had constant migraines and the muscles in my neck felt like there was a bolt through it, they were so tight.  It took three and  half years before, I actually got a diagnosis, treatment and medication, and as my consultant had said, if only someone had looked at all the different things I was suffering with collectively, it might have been diagnosed much sooner.   Please note that diagnosis is based on a 19 point pain test, for want of a better phrase, but there are 19 points around the body, that when lightly pressed cause pain.  At my examination, and diagnosis I was 'scored' 17 out of 19, bearing in mind that I had been previously told it was Osteo-arthritis.  I came away a state of shock, Fibromyalgia, WTF?

All I know. is I had never known pain like this before in my life, but it's something I've had to get used to.  What I also know, is that my tolerance for pain, is far greater than the average 'Joe', and in return any pain I feel from simple knocks and scrapes is 10 times worse, and also takes 10 times longer to get over it.  Those of you you who read my entry about my car accident on Nov 5 2014, please be assured that I am still suffering the physical repercussions.  This is also the reason I get so angry with myself when I trip or fall over, and yes I know I shouldn't blame myself.

I suffer with this illness from top to toe, quite literally.  I am not one of the lucky ones.  My pain is only dampened down with pain meds, but without them I am a complete heap.  I am on the highest dose of restricted pain meds I can have, and use morphine when I need it, yet I still suffer from intense pain, numbness, tingles and pins & needles 24/7; and this is all over my body, in my head, my face, my hands all the way down to my feet,  To add to this, I also suffer with Allodynia, (a touch sensitivity syndrome) in some areas, which means that the slightest touch is excruciatingly painful for the me. I have hotspots where I am affected, and I have to pre-empt a handshake or a hug, and end up doubled over if someone friendly punches me on the arms.  Like I say, the pain varies so much, and can change from hour to hour, lasting for a short while, to becoming a long term or permanent thing.  The source can start in one place, then end up somewhere completely different, but the thing is, is it's always there. Somewhere.

I read up on the illness, joined forums and groups and learnt about the devil I am living with, and  gauged where on the scale I felt I might be with my peers.   Some managed pretty well, still able to work, some were feeling virtually bed-ridden, because they were so limited in their movements.  I pitched myself at about 8 or 9 on the scale, only because I still maintain mobility and I can at least leave my home if I need to, in fact, I make a point of doing so.  One unhappy memory I have of that time, is the week of my 47th birthday, when I I took receipt of two walking sticks.  The pure shock, then realisation of how necessary they had become, no one heard or saw my my tears, or asked how it felt. It took for them to see me using them, for it to register that I actually might be in a bad way.  It was also at this time, that I was registered as disabled, and applied for my "Blue Badge", and my goodness what a true blessing that is!

I have my foresight to be thankful for, because in spite of any pain that I was feeling, I still swam and walked as much as I could, and I did my yoga and stretching routine at home on a regular basis.  Somehow I think I knew, I had to make my body strong if I was going to continue standing up!  It hurt me of course and still does, but I looked at it, as being good pain, because it was building me up and making me stronger.  There are many periods when I simply can't do any of these things, and have to stay indoors, bound to my snug.  You have yet to see, what a strong woman I really am, but all I can say is that today, I am still standing and able to walk, unaided because of it.

I am being determined and defiant about using my sticks, and only do so, if I really have to.

You don't appreciate day to day to life, and all the comings and goings, when you are feeling okay; but once you become disabled in anyway, and have to rely something or someone to psychically support you, you begin to notice that no one sees you.  The amount of times, when I have been pushed, bumped into, had my sticks kicked by someone walking past, (all these events almost send me flying), was enough to make me realise, I was better off limping along without them.  Not only that, but while they helped my legs, they put more pressure on my hands, arms and shoulders, so it was a no win situation.  I felt so incredibly vulnerable when out in public, but I think, I always put on a very brave face every time I need to go out shopping or socialising.

My life, has been reduced to these four walls, and probably a ten mile radius out side of them.

I wrote earlier about how far reaching this illness is, because it is not just about pain even though it plays the biggest part.  Stress is a huge factor, it directly impacts on pain itself, and anyone dealing with this kind of illness, is bound to be stressed, not just from the symptoms, but external stresses from outside.  This could be the necessity to continue working, or carry out day to day tasks that people take for granted, such as ironing, using a vacuum, being able to drive, the first two being  things I can no longer do.  This illness deprives you of your life, slowly, slowly, bit by bit.  You only realise when you have been robbed of something, when you go to do it, then realise you can't anymore.  Simple things like getting dressed, putting on a pair of knickers or tights is comical because of the amount of times when I nearly fall over.  So I had to give up on wearing them, the tights that is.  Doing up buttons or zips at the back, are an impossibility, so I have had to change to easy slip over or on styles of clothing.  Even wearing a bra is challenging, as it feels like wearing a tight compression bandage over my chest, and after a while I feel like I can't breathe.  Thank goodness for my stretching, as it has kept my chest area pointing in the right direction!  Things like this, people don't see, so they have no concept of the mountains you've already climbed, just by getting dressed!

For the last 30 years, I've had great difficulty writing using a pen, as my hands seize up from really sharp pains.  Balance and dexterity has long left the building, I can hold a yoga position, but trip over my own feet when walking!  Along with that went the ability to concentrate, think straight and perceive normally.  We all suffer from 'Fibro Brain Fog', as we in the know affectionately call it, when our minds become so completely confused,  or anxious that we can't even speak properly, or we're clumsy, bump into or drop things.  As well as pain, there is the  muscle fatigue, spasms, twitches, shakes, and something I've said, and heard said so many times is, "my body can't relax", it is always on edge.  My muscles are taut all the time, and there is nothing I can do about it, I am as solid as a brick, and it scares me at times.  For women, it can also affect the reproductive system, I ended having to have a hysterectomy, even though I have no children. All my bodily clocks seem out of sync, I sweat when I freezing cold, and feel frozen when I am hot, whatever the weather I have a constant chill that goes from my neck to my lower back, straight down the spine.

On top of that, is the overwhelming sense of fatigue and tiredness.  Fibromyalgia robs you of the ability to fall into a deep sleep, (restorative sleep), so we don't fall into a deep dream state, where your body heals itself.  Our 'sleep' is continually disturbed, as we fully wake up numerous times throughout it, to the point it feels like you've not slept at all.  Hence the reason we always feel so tired, and lacking energy to do things, and even when we do, it doesn't take much to wear us out, even if it's the simplest of things.  And any kind of activity usually brings pain, and then more pain, so like many others, I have developed techniques to help me get by, but bottom line is there is always a physical price to pay.  What I have to decide is, if the pain is worth it or not!  Simple as that.

In spite of my yoga and stretching, my illness, just as I expected has not improved, it has got worse.  But the benefit I have gained is that I can still stand, walk, albeit not far and have more flexibility than I ever used to.  But there is not a day goes by, when I am free of it.

I took on the phrase, "Accepting Acceptance" , after a stint at a pain clinic a few years back.  All the other members in my group, had reasons for their pain due to accidents etc, I was the only one without this background.  At the time I still hadn't been diagnosed, but stayed the course and twelve weeks later, I felt cheated.  What I had come to understand, was that "I had learnt to 'accept' having to 'accept; my condition", and that is how it was, and still is.  It was an incredibly difficult thing to to do, when not knowing what was actually wrong, but there it is.

There is still so much more I could say about this illness, fibromyalgia; but I hope I have given you some good insight, if you haven't heard of it before now.  I also hope it has given insight to anyone who, is with a sufferer, and who needs to hear this from someone elses' mouth, because they don't believe or understand it themselves.  This is confirmation, that there is another one of us out here.  Believe me when I say this, but only a few months ago, my then husband said "there's nothing wrong with you, you're just pretending".  He said this, even though he was there at the diagnosis, and other relevant appointments in my care plan, even attending tribunals to confirm my disabilities etc.  So I will not apologise for saying this.

Trying to express this to people around me, was almost impossible, as they still seemed adamant that there had to be a cure, that it was partly in my head etc; only because it was beyond their realms of understanding the illness, the way I did at firsthand.   I even wrote a very long letter, and you guys know how I love to write, and gave copies to my family and friends, explaining what my illness was, how I am affected, and how things easily stress me.  It didn't really help, even now when I say "I am having a 'morphine' day", they're like, "you're taking morphine, why, what for?".  It was an incredibly hurtful thing to say, when they should have known better.  It seems they just couldn't come to terms with it, or worse still they knew someone else with something similar, and hey they were okay!  But my attitude: we are all different, and if I have come to accept things for what they are, then so should they, because if only causes me more agony, if they don't.

I am pleased and proud to say, that I don't believe I am one of life's complainers, I have never asked "Why me?" or bemoaned my predicament.  I try so hard to not let this illness define me.  I refuse to let it take control, and as long as I have the strength and the inclination it won't.

While I have been writing this, which is for some 10 hours or so, I have been thinking about you, my readers, wondering what kind of images you had conjured up about me, being the writer.  You know, how you visualise me from reading through my words.  Maybe, this particular entry casts a different light on all the other posts I have made; because even though it is a significant part of my life, it is not the only thing.  Sx :)

PS, thanks for reading this, I know it's been a bit of an epic post, sorry about that!  But if you know anyone that suffers from this illness or perhaps show symptoms of what I have described, then please do pass this on.  They might not know where to start, have questions about how they feel or think that they are on there own, whatever the case, I am a mindful of information and advice and if I can't help, I will at least point them in the right direction.  I am not offering an agony aunt service, but if I can help I will do my best.  Sx