So Sick of My Hat of Many Rocks.

Banging My Head on a Brick Wall

I've been relatively quiet of late for fear of boring readers with all that ails me, but I just feel the need to vent my spleen one last time before undergoing a transformation (hopefully.)

I have had pain, ranging from excruciating to agony to severe to livable, twenty four hours a day, three hundred and sixty five/six days, for over thirteen years. Can you imagine that? If not try to imagine the pain you might feel if you were to wear a hat with a bunch of two pound sharp rocks dangling from it on varying lengths of rope - all strategically placed to bash into various points in your back, neck, shoulders, thighs, guts, knees, ankles, feet, arms, hands, wrists, fingers and toes as you move around - some days individually, some days all together at the same time but at different intensities - some pounding into you, others niggling, others constantly embedded on a pressure point. Now imagine trying to function normally with all those rocks hitting you throughout the day, then imagine going to bed physically beaten and exhausted but being unable to sleep soundly because you're still wearing your rock hat and, no matter how you position yourself, there's a rock digging into you somewhere on your body. Just imagine that hat, and while you're imagining that hat imagine also being bombarded by an additional, bigger and sharper rock straight into your stomach and intestines causing them to cramp, become sore and irritated and giving you horrendous diarrhoea, nausea, painful trapped wind, bloating, constipation. Imagine having to live with those rocks for just a short period - say, a month. Do you think you might go a little off the rails? Become depressed, anxious? You'd kill for a cure wouldn't you? Well. that's me for the past thirteen years. I'm not saying it's that intense every day but I kid you not when I say that I've been getting pounded by at least one of those rocks every day for thirteen years - sometimes the niggling ones, sometimes the two pound sharpies!

I've tried virtually every treatment known to man, have undergone more invasive tests than any person should have to endure, have taken pills and potions, tablets and lotions, with infinite hope and ultimate despair. I have had enough.

I don't want pity. God knows there are so many more people who've lived with it longer than me and who have it even worse than me - at least I can still work, albeit part time.

The time has come for a different approach. I have signed up to do something radical in a last ditch attempt to overcome fibromyalgia, crohn's disease / IBS, insomnia, anxiety and depression. I'll be writing more about this new radical approach in the coming weeks. It is going to take a monumental personal effort - and, no doubt, it's going to be unpleasant for a while, but I have to see it through to the end or fibromyalgia will be the end of me.

Hopefully I'll soon be able to remove my hat of many rocks. Wish me luck!!

Being Overwhelmed

Overwhelmed is a word I used to associate with joy - "I'm overwhelmed to meet you!", "Your beauty overwhelms me!" I've never thought of it in the context of being overwhelmed by an illness. But that's how I've been feeling for a while now.

My illness is overwhelming me. I feel like it's beginning to become me, to define who I am, and I don't like it one bit.

I'm determined to not let fibromyalgia become me. Like some creeping algae slowly enveloping me in its insidious green slime. So far it's taken over so many aspects of my life - work, social, family. 

There's so much of the life I once knew that is now stagnated by fibromyalgia. I'm no longer able to plan anything with any certainty, family outings have to be decided on the day and can end abruptly half way through an activity, work has been reduced to just 16 hours a week - and still I have to call in sick some days, and my social life ended about four years ago.

Accepting you have an illness and accepting the limitations that illness places upon you is one thing, but allowing the illness to define who you are is an entirely different kettle of fish, and it's something I don't want on my epitaph - "Here Lies That Guy with Fibro."

I suppose I'm going to have to get myself a new mindset to accomplish this feat. I definitely need a shot of positivity to begin with, so I'm throwing this out there to ask:

"How do you keep yourself from being overwhelmed by your illness?"

"How do you stop yourself from becoming your illness?

 Answers on a postcard to.... or you can just post a comment!

All suggestions will be considered seriously.

   

How Do I Develop A Coping Strategy?

When my pain reaches a level where I feel like I might die from it - or sometimes wish I would die just to stop it - I find it very difficult to think positively about my condition. Anyone in constant pain for thirteen years must surely, eventually, come to terms with it and learn to live with it. Not necessarily 'cope' with it, but live with it.

I haven't. I want to alter the way I am. I want to reverse it, go back to the days when I wasn't in agony when someone touched me, the days when I could sit and watch TV comfortably, lift heavy gear at work, climb mountains, kayak in the lake district, because I miss those times so much. And that makes the pain worse.

So, how can I live my life going forward when I so badly mourn the loss of my pain-free life?

I don't have a strategy for this.

I need a strategy to help me move on. To make a new life with the added element of "this is gonna hurt, but you're gonna do it anyway and to the best of your limited ability." I already do this, to a certain extent, with my job.

At work I lift stuff I shouldn't. I know full well it's going to hurt later (as well as during the task in hand) but I plod on - cases of eight 2litre bottles of Coke, 10kg bags of flour, 10kg bags of kitty litter, 24 pack beer crates. It hurts, but I do it when I can because to not do it would be to admit defeat and give up working. There are times when my body just will not allow it of course, and my employers know this so they tolerate the days when this happens, but in the main I do as I'm asked. Despite what will follow and in spite of my condition. I do it to maintain some semblance of the life I once had.

Am I wrong to push myself like this? I don't know. I do know that there are men like me all over the world. Men who toil and push themselves, trying to break through the pain barrier in order to avoid admitting defeat. There are, I'm sure, some men out there who go through all of this agony without ever knowing that they have fibromyalgia because they think that is what a man should do, it's 'normal' for a man to do a hard day's work and come home exhausted and in pain. They shrug it off as 'just an age thing' and put off going to the doctors - I know I did, for a long time. When I eventually went to the doctor - he could find nothing wrong. No strains, sprains, pulls, tears, arthritis, rheumatics, cancers. NOTHING. So it's got to be just me getting old, right?

At thirty six?????

Eventually, when you've been through all of the examinations, pokings and proddings by 'specialists' and they have found nothing wrong to be causing you so much agony, they stick you in the fibro category, and they leave you there to rot.

"You have to learn to live with it." they say, to which your reply should be "Okay doc, I'll do just that. Where's the training room?"

There isn't one of course. There is however this wonderful resource called "The Internet" and that's where you should begin developing your strategy for learning to live with fibromyalgia. Read blogs by people with fibro. Join facebook, google+ and other social media to engage with others in chronic pain. The internet is the only resource for helping you to come to terms with, and live with, your condition.

You're not going to get that from your doctor.

Meeting The Ghost of My Former Self.

I used to be quite a fit and healthy young man. From the age of sixteen I was forced into activities I wouldn't ordinarily have undertaken. Up to sixteen I avoided any physical activity because I thought I couldn't do them with any flare or skill like my schoolmates could. I was crap at everything - running - always came last, swimming - always came last, football - always last to be picked, cricket - ditto, hockey - ditto. Sport + Gary McArthur = Disaster.

At sixteen I joined the police cadets and everything changed. I knew it would and I wanted it to. Suddenly I was challenging my attitude to physical activities as something to be shunned by forcing myself (or being forced) to undertake them on a daily basis. Granted I still wasn't any good at them, but I tried to break my mindset towards them. The police force got me hiking, abseiling, camping, canoeing, mountain climbing, cross-country running, orienteering, weight training and partaking in almost every other sport known to man in much the same way as the army trains a team of dropouts into soldiers. The police force instilled discipline and order and gave me a massive sense of achievement. In amongst all of the legal definitions and laws and regulations the police force also gave me good health which lasted me well into my thirties. Conversely, it also taught me how to drink like a fish! (but never lose my self control) and that's another story for another time.

From sixteen until my mid-thirties I considered myself to be a fit and healthy individual - not obsessive, but I remained lean and strong and enjoyed outdoor activites like hiking. I'd bump into former school mates who'd let themselves go by piling on the pounds and I felt quietly smug that I hadn't descended into obesity. I was no longer embarrassed by my slender build as I had been at school.

Then.

Then I suddenly died. It wasn't gradual or slowly degenerative. It was overnight. I woke one day with backache. It was 2003. Between then and now I haven't had a single day without pain. Obviously, there have been good and bad, as well as bad and really bad, days, but every day I have had some level of pain in my back. Sometime after the backache began I started to get pain all over my body - arms. legs, head, neck, feet, fingers, toes, hips, knees, and sometime after those symptoms started I began to get the internal ones, IBS, Crohn's, you know the drill. Fibro affects us all in pretty much the same way and a whole myriad of different strokes for different folks.

The point is this, on that day in 2003 when I awoke with backache, my former self had died in its sleep. Over the course of the next thirteen years, as each symptom struck, I gradually became the ghost of the Gary McArthur I used to be.

The physically fit Gary McArthur became the disabled Gary McArthur, and over the course of 2015 the Gary McArthur who was always positive and happy go lucky and forward thinking and strong, became the depressed Gary McArthur, the negative and whining and hopeless Gary McArthur, and it was at this point in my life that I finally met, or recognised, the ghost of my former self - that skinny and spotty little sixteen year old boy, who'd been scared of all physical activities who, through sheer determination, had turned it all around, who'd laughed in the face of his fears and grown to love them (without ever being any good at any of them) was dead. He died when I gave up being 'well'. He died when I gave up fighting. He died when I lost hope during the course of 2015 and became depressed. He died despite reading hundreds of blog posts by other fibromyalgia 'survivors', all with a positive message that laughed in the face of their illness. He died when I stopped laughing in the face of mine.

But, fear not, for that skinny little sixteen year old's spirit is still inside me and he will live again.

I've set myself a goal for 2016: To find the spirit and the grit and the determination and the hope I had as a sixteen year old boy, and laugh once more in the face of my illnesses. To challenge myself in the way I did when I joined a career path I knew I wasn't suited to, simply to face my fear of all things physical.

Fibromyalgia and Depression

Having an invisible illness seems to lead to other invisible illnesses.

I have fibromyalgia. I also have IBS / Crohn's Disease. As my fibromyalgia was diagnosed first I assume that the anxiety and stress that placed on me, both at home and in my work, led to the turmoil in my guts. And it's been that way ever since.

Almost thirteen years have passed since I was first diagnosed with fibromyalgia and, in that time, I cannot remember a day when I didn't have symptoms from it. Of course it ranged from mild to moderate, moderate to severe, but always there. After four years of constant pain I eventually began to experience symptoms of IBS which, I assumed, were related to the lower back pain and I instantly thought I had cancer. After many weeks of putting it off I eventually went to see my GP and after a few more tests I was diagnosed as having Crohn's Disease an incurable inflammatory bowel disease. Oddly all tests since initial diagnosis have shown no inflammation so my gastroenterologist has 'downgraded' my condition to Irritable Bowel Syndrome - but it affects me no less because of this downgrading!

So, having lived with chronic pain for almost thirteen years and bowel disturbances for the past eight and a half years, I thought I'd had my quota of 'invisible' illnesses but it appears that I was wrong. For the Gods have decided to test me, yet again, to see how I cope with another layer of invisibility.

This new invisible illness came out of nowhere - as did the other two - but rather than hit me with symptoms all of a sudden - fine one minute, stricken the next - this cloak of invisibility crept up on me over a period of about two weeks. I'm talking about depression.

Obviously, when you live with chronic pain 24/7 for 365 days a year you're going to have times when you feel a little down and fed up with yourself. I've experienced times like that before but I've always snapped out of it fairly quickly and resumed as "normal" a life as I could under the circumstances.

But this depression has gone much deeper than my previous bouts of 'fed-uppedness' (if that's a word?) This depression has really knocked me for six. This depression has been the most invisible of all of my invisible illnesses - with fibro and IBS my family and work colleagues can see me physically wincing with pain or running off to the loo or holding my guts - sometimes they can hear my symptoms too, so as far as invisibility goes they're somewhat apparent to the outside world.

Depression is a whole new ball of wax. Externally there is nothing to see. I laugh at funny TV shows, I act the fool and joke around at home and make pleasantries with my customers and colleagues at work. My face and body show no outward signs of being ill.

In my head I want to explode. I want to shout at people who annoy me - the ignorant customers who don't say please and thank you when I have to fawn over them like they were royalty, the stupid ones who change their mind halfway through a transaction or wander off to get something else leaving me with a growing queue. I want to curl up into a little ball and hide away instead of facing these people. At home I join in because I have an obligation to do so, not always because I want to. I'm short tempered with the ones I love most and I hate myself even more because of it - and so it builds up and up and up until, one day, I know it surely must explode. Yet all the time I fight it so that, externally, my face looks 'real' and 'normal' just as I've tried to hide my chronic pain and gut turbulence for so many years. I try to be a valued member of society but I value myself less and less each day - I feel unworthy of praise, of love, of life itself. Things I love to do are being abandoned - art, drawing, photography, cooking for my family all feel like the most arduous of chores now whereas, six weeks ago, they were my life.

Depression is the most heinous of invisible diseases because there isn't a scrap of evidence of its existence. It's all in my head. I should snap out of it. I should think positively. It could be worse. I could be paraplegic - all the things we're told never to say to someone with depression I've told them to myself over and over again - and it's right they are definitely the wrong things to say to someone with depression because I can't snap out of it, or think positively and it couldn't be worse (surely) and I'm sure most paraplegics feel the joy of life sometimes and I know it's all in my head because it's a mental illness, to do with the brain, which is found, in most people, in the head!

I have not, as yet sought treatment for this depression, prefering to try and fight it myself - but I think I'm losing the battle. My reasons for not seeking treatment are that my GP thinks I'm a malingerer already and I'm worried about the side effects any medication might have on my already feeble guts. I know in my heart what I need to do - I've told many people in my position in the past to get treatment as soon as possible so I'm going to have to bite the bullet........ before I take a bullet.

Sick & Tired Of Pills & Potions

It seems that every drug prescribed to me by my GP has little or no effect on my pain. So far this year I have had Gabapentin, Pregabalin, Cocodamol, Naproxen and the latest one Nefopam, none of which make any dent in my pain and all of which have given me more grief than benefit.

My fibromyalgia affects my lower to middle back, elbows, hips and knees, and pain from this is exacerbated by my crohn's disease / IBS symptoms. In a last ditch attempt at finding a treatment that works, before referring me to a pain management specialist, my GP decided to try me on Nefopam 30mg x 2 three times a day. I started them last Wednesday, it is now Sunday. On Friday I had to rearrange a work shift which was due to start at 05:45am to 11:30am as I had experienced extreme abdominal spasms and diarrhoea throughout Thursday. The spasms hadn't diminished by the time I started work, so my six hour shift was spent in total anxiety of another attack. When they came, thankfully, they were bearable. 

Firday night I slept fitfully and was wide awake at 03:25 I got up to visit the toilet at 05:30 and found that I couldn't urinate. I stood for a few minutes, absolutely bursting to go and when it eventually came it was like the pressure valve had been reduced to a slow. burning, trickle. It's still the same today, plus I have a headache - something I rarely get, but when I do I don't do them by halves! It's a stonker! Last night I got only two hours sleep.

So, they have been the side effects of Nefopam, but what about the benefits I hear you scream. Well, there haven't been any benefits except to say that my abdominal cramps have diminished to a mild burning every so often, but I'm putting that down to Buscopan rather than Nefopam.

My GP said that a referral to a pain management specialist was an admission by him that he could do no more for me and that pain management would provide only 'palliative care' ( I thought that term referred to terminal patients only, but perhaps that's what he meant!? ) I felt like saying he'd done nothing for me anyway, but thought better of it.

And so I find myself back to square one on this snakes and ladders game of Fibromyalgia. I'm taking no more of the Nefopam as they've made me feel awful. I'll make do with cocodamol and my TENS Unit until my pain management appointment comes through .

Is it an ache? Is it a pain? YES, It's Fibro-Man!!

I used to feel, as a man with fibromyalgia, wholly embarrassed at my situation. I tried for years to conceal the intense agony I was suffering every day. I'd try to carry on with daily life in as much a normal way as I could. Doing the gardening, decorating, cleaning windows, laying carpets, building flat-pack furniture - all the usual stuff a normal healthy married man in his mid to late thirties could, and should be able to, do with ease. Except it wasn't easy. Nothing was easy, cutting the grass left me in agony. If I mentioned it to my family they'd respond with "Oh, for heaven's sake Gary, you've only cut a little lawn!" I'd suffer in silence, embarrassed at the fact that it really shouldn't have left me feeling so much pain. Feeling less of a man each time I mentioned having pain anywhere, everywhere in my body. If I had to disassemble the vacuum cleaner to unclog it, or fix the belt, unscrewing the screws left my arms feeling bruised for days afterwards - like I'd done a thousand push-ups. That's not normal for anyone, let alone an otherwise fit man.

Although I was initially given a 'preliminary diagnosis' of fibromyalgia in 2003 (when I was 37) it wasn't until last year that it was confirmed as fibro - having spent the preceding eleven years visiting the doctor more times than I visited my workplace, and having ruled out every other ailment known to man. Along the way I became stressed, and the stress made things worse. I developed severe pains in my gut, kept throwing up and running to the loo, they diagnosed Crohn's disease in 2008. By hiding things I'd taken the stress internally and made my situation ten times worse. Now, I not only had to cope with the pain of fibro but also the new, life changing disease called Crohn's! Both incurable, only manageable - and barely manageable at that.

So, knowing what I now know, why did I hide my illness for so long. It's not the fact that it wasn't fully diagnosed or that I thought it might be 'all in my head.' It was embarrassment. Pure and simple. I was a man with responsibilities. I had a stressful job, my clients relied on me, my family relied on me. How could I be everything everyone expected me to be when I was in so much pain, or when I couldn't drag myself away from the bog?

Is it an ache? Is it a pain? Yes, it's FIBRO-MAN!

I now know that I'm not alone. There are millions of people in the same, or worse, condition as me. Most are women it's true, but that wasn't the cause of my embarrassment. It was purely and simply the fact that I couldn't be the 'man' I (and only me) expected me to be. Strong, dependable, do anything for anyone kind of man. 

But I'm not. I accept that now. I'm "Fibro-Man", with a loving and understanding wife and family, who stood by me through it all and will continue to do so - providing I don't try to be something I'm not and end up killing myself.

I'm "Fibro-Man" and proud! Now fetch me my walking stick!

I can stand the pain - it's the gut turbulence that affects me most!

Of all the many symptoms of fibromyalgia I find the upset bowels and digestion problems the most debilitating.

I have pain constantly and, over the years, I've learned to live with or manage it in my own way, but the crohn's disease I find the most frustrating and soul destroying symptom of my auto-immune system failings.

The fact that it can turn itself on and off in the blink of an eye - so I go from normal, healthy, quiet gut at 9am to full blown diarrhoea and painful flatulence at 9.45am then back again by 6pm, or not, depending on how long it wants me to suffer.

There's no predicting it. There's no eating or avoiding certain foods (in my experience) There's no rhyme or reason to it. It just starts, last a few hours or a few days, then stops and comes back a few days later or a few weeks later or, if I'm exceptionally unlucky, a few hours later! It can take the form of painful bloating and acid reflux, or painful bloating, acid reflux, nausea, diarrhoea, stomach and arse cramping, excessive wind, ultra-urgent diarrhoea or constipation, or a combination of all of these!

It's the unpredictability of crohn's that upsets me the most. I can predict when and how my pain is going to affect me - because it's there all the time and I "just get on with it." 

But the crohn's is 'quite literally' a pain in the arse in its unpredictability. Of all my conditions it's the one that makes me the most anxious, the one that gets me wound up to the point of raving maniac and the one that controls how my life is lived because at the slightest hint of a flare I batten down the hatches and all other activities stop and, as a result, it's the one that affects my family the most too.

Crohn's Flare or Medication Switch?

I mentioned a while back in this blog that I was on Pregabalin (300mg twice daily) - well, I started to get an unwanted side-effect: extreme dizziness, which was making working and even standing up unpleasant and/or uncomfortable so three days ago my doctor switched me onto Gabapentin (100mg three times daily) and as soon as I started taking them I started to get the symptoms of a flare up of my Crohn's Disease. Horrendous stomach cramps, diarrhoea and nausea, and last night I thought I was going to have to go to the hospital because of them. 

I'd managed to get through the day in relative discomfort and in the evening had (just about) managed to get through my shift at work - though I was clearly under-par, I got home at 11.30pm and went to bed but couldn't sleep because of the pains inside. At 3am I was on the toilet trying desperately not to pass out. The pain in my gut was unlike anything I'd had before. I was considering calling an ambulance when it dawned on me - could it be the new tablets?

I don't usually read info leaflets in tablets and in any case there hadn't been one with these new ones, but the pains were so bad I had to know if there was a link so I searched "side effects of Gabapentin" This is what I found:


Common: More than 1 in 100 people who take Gabapentin

• abnormal gait
• abnormal laboratory test results
• abrasion
• accidental injury more likely
• acne
• back pain
• blood and bone marrow problems
• breathing difficulties
• bronchitis in children
• changes in appetite
• confusion
• constipation
• convulsions in children
• coordination problems
• cough
• depression
• diarrhoea
• difficulty sleeping
• double vision
• dry mouth or throat
• eye or eyesight problems
• feeling anxious
• feeling nervous
• feelings of hostility
• flatulence
• flu or flu-like symptoms
• fractures
• general feeling of being unwell
• headaches
• hyperactivity or aggressive behaviour in children
• impotence
• indigestion
• infection of the ear in children
• inflammation of the gums
• itching
• joint pain
• memory problems
• mood changes
• muscle twitching
• muscle pain or tenderness
• nausea
• oedema of the extremities
• pain
• pharyngitis
• raised blood pressure
• reflex problems
• respiratory tract infection in children
• rhinitis
• sensation changes such as paraesthesia and hypaesthesia
• skin rash or rashes
• speech problems
• stomach pain
• swelling of the face
• tooth problems
• tremors
• unexplained or unexpected bruising
• unusual thoughts
• vasodilatation
• vertigo
• vomiting
• weakness
• weight gain

(I've highlighted every side effect I experienced during the last 48 hours)

The stomach pains, flatulence and diarrhoea still haven't subsided and I've vowed to myself to never take another Gabapentin. So it looks like another consultation with the quack when I can drag myself away from the toilet! Looks like I'm going to have to manage with just cocodamol for the time being.