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!!

Looking To The Future.

Something turned up on my doorstep this morning. I'd been expecting it, but when it was actually delivered I began to get a little anxious.

The package has the potential to do one of two things: scare the living hell out of me, or enable me to relax for the next thirty or forty years (or however long God allows me to remain a part of this wonderful world of ours)

I'll be writing more about this delivery in the coming weeks, but for those who desperately want to know what it is here's a tantalising clue:

More to follow soon...........

Please Help us Raise Awareness of Fibromyalgia in Men.

I've been busy designing banners (no better activity for a dull Sunday afternoon!!)  - for no other reason than to use in our never ending campaign of awareness raising - please help yourself and share far and wide!! I'll be sharing across our social media channels in the coming days

Changes.

FibroBlog is to merge with MyFibroBlog - you'll notice some differences already.

I've decided that maintaining two blogs is just not physically possible for me anymore!

Watch out for a migration of posts as I clear out the MyFibroBlog and transfer all of them to the Blogger platform. The domain name may also change - but I'll let you know if and when.

UPDATE: To enable a smooth transition to a new domain name we have reverted, temporarily, from fibroblog dot co dot uk to fibromenblog.blogspot.com


Thanks

Gary

Saying "Yes" But Meaning "No" - Yet Winning!!

I am terrible at saying "No."

Ask me to work a few hours extra at work: "Oh, okay then!"
Ask me to change the beds on a bad pain day: "Right, I'm on it!"
Ask me to help you dig up a tree stump: "Where's the spade?"
Ask me to lend you some money: "Here, take my wallet!" (this is a lie - my friends will tell you I'm tighter than a fish's chuff!!)

Get the picture? Recognise this in yourself? Or are you one of those people who can say "No" without hesitation? (If you are then we need to talk!)

I recently cut my hours at work because I was scared of letting them down when I had a flare of my crohn's / IBS symptoms. It was an early morning start (05:45) with no way of calling in if I was ill, so I asked them if they could switch my hours. They said "No." Instead they said I could drop the hours completely! Not the result I wanted, but I was becoming increasingly anxious about letting them down, so I agreed to the loss of a six hour shift (and six hours pay!) rather than fight them to move the shift.

Since then the business has suffered with some key staff members taking time out with various illnesses - mainly Team Leaders / Deputy Managers, and they've asked me no less than six times in the past month or two to deputise for their missing staff.

There are PROs and CONs of me doing this.

My standard role involves lots of standing (in one spot) for up to five hours (CON), or lots of heavy lifting (CON), or a mixture of the two (SEMI-PRO) - both activities play havoc with my pain levels.

The shifts where I deputise for the managers involve lots of delegating of the heavy tasks (PRO) and lots of walking around or sitting down (PRO) - basically I can take it as easy as I need to to control my pain levels. They also involve a lot more computer work and cash management - which can be stressful given my occasional 'brain fog' (CON) and there is the added responsibility of locking up the store at the end of the night (CON) they also pay me an extra £1 an hour (WOW! - SEMI-PRO!!)

My standard role shifts are no more than five and three quarter hours long (PRO)
My deputising shifts are NINE HOURS long (CON)

In December, when the store was at it's busiest, I was asked to deputise on two consecutive nights - Saturday and Sunday nights, our two busiest days throughout the year, but even more so in the run up to Christmas, I'd need to run the shifts between 14;00 and 23:15 on both days. I said "Yes!"

Big mistake! Whilst I completed both shifts without incident I hadn't banked on the consequences of two such mammoth shifts, back to back. The Monday after I had to call in sick because my pain spiralled out of control. I was off for a week and vowed never to agree to deputise again. However, the next week they asked me to do it again and guess what I said: "YES!" I know, I know, I'm an idiot!

HOWEVER - I told them I could only do it for my normal shift hours (MASSIVE PRO) meaning I didn't have to be at work until 17:30 (instead of 14:00) I can delegate all the heavy stuff, I can walk around or sit down (depending on how my pain is) and I run the shift my way - getting out on time. I can pace myself. There is the extra stress of cashing up five tills and locking up the store, but I can manage that, just about!

That's saying "Yes" on my terms. That's saying "Yes" whilst meaning "No" yet winning all the way - those extra £1's come in handy too!

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.

Raising Awareness of Male Fibromyalgia with Imagery.

On Saturday I posted an image to the FibroMen Facebook page which seems to have struck a chord for so many people. It's something I've seen many times before in my online journey with fibromyalgia, images where people depict how they look and the same image 'bastardised' to show how they feel. I've shared these images a number of times in the past with no real, significant, interest. This one seems to have been a little more inspiring to some people.

As I write this, the original post has been seen by over 30,000 people and shared 364 times. Here is the image I posted:

It's a simple stock photo of some male model and it seems to have caused quite a stir, particularly among males with fibromyalgia. Many say it was a bad choice of image as it doesn't depict a 'real' man with fibro, many also stated that people with fibro 'don't work out' and so couldn't possibly look like the image on the left. 

Is that true? There are many layers of fibromyalgia. It affects us all in different ways, and there are some that say that the worst thing for it is inactivity. Indeed there are days when I feel like I could go back to my gym and do a few circuits - it is only the prospect of making the pain worse the next day that puts me off, but who knows, it might, over time, work to ease my pains. (I'm having trouble accepting that!)

Some of the detractors stated that an image showing a real sufferer would have worked better. 

I'm not so sure it would have had as much of an impact as an extremely healthy man being transformed into a pain-riddled wreck  - the difference is clear for all to see: "This is how I appear to the outside world - but if you could see my pain, this is what you would see!" 

I have to point out that the vast majority of males who commented on the image were positive about it - some even mused that they wished they actually looked like the image on the left (don't we all?) - but they got the message, they got the point of the post - do not judge what you cannot see, don't judge a book by it's cover, even fit and strong men are affected by fibromyalgia etc.

One thing I'm certain of is this: The image had exactly the reaction I would have wanted and, in creating a stir, it worked to increase awareness of fibromyalgia in men. It worked to get a discussion going - especially from female sufferers who, in the main, wanted it to be known that men suffer this debilitating illness too. Many stated that they thought their partners had fibro, but hadn't been diagnosed because they just put it down to "over-work" (it's a man thing!)

One should never underestimate the power of an image. Some images have the power to end wars and some have the power to start them, let's hope this image raises even more awareness of fibromyalgia in men. That is, after all, my whole reason for starting FibroMen in the first place!

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.

Do You Want to be in a Book About Fibromyalgia?

We've been approached by author Cris Williams to help her source respondents for a new book she is currently writing which will seek to raise awareness of chronic pain conditions - fibro, IBS and so on - and get the message out there about how it affects each and every one of us.

The writer is looking for responses from anyone touched by Fibromyalgia - male and female patients, carers, partners, children and even doctors - to enable her to write from all perspectives.

If you're interested, or know of someone who might be willing to complete a short(ish) questionnaire, please email voices4chronicpain@gmail.com in the first instance.

For my part I have already received the questionnaire and it looks relatively straightforward from a patient's perspective - how it affects my day to day activities, how I feel about the illness etc etc.

I have also roped in my long suffering wife and her questionnaire from a partner's perspective is equally straightforward!

The questionnaires can be completed in your own time and total anonymity is guaranteed if you wish it. (Never one to shy away from these things I'm having my name in huge letters across anything used in the published tome!! - after all we must all play our part in raising awareness of this hideous condition!!)

So, please, step up, email the writer and get your, your partners, carers, childrens voices heard.

Email voices4chronicpain@gmail.com

So Many Unanswered Questions

It's been a torrid time this past few weeks and months. My pain levels have been pretty constant - around a seven for most of the time - so I've been feeling quite depressed about life in general and mourning the life I once had really badly.

When I was a teenager I took part in a great many physical activities. Hiking, kayaking, orienteering, rock climbing, mountaineering, abseiling, swimming (to gold life-saving award standard), camping and general sports activities - I was never any good at team sports like football or athletics, but I loved the other stuff. These days I'm lucky to manage a half hour swimming session without completely exhausting myself for days after. 

I'd love to know why. What happened between then and now? Did I cause all this myself through too much inactivity - between 20 and 37 I didn't do much sport, though up until 2010 I went hiking across the moors quite regularly and was a member of my local gym - or did I cause it through overdoing it when I was a teenager??? Was I always predisposed to fibro?  is it genetic? Did some earlier illness cause it? Were the agonising leg cramps I had as a young boy the start of it, or was it the pneumonia I contracted when I was 23?

Will the pain ever stop?

Will I ever be cured?

Will the medical profession find a treatment that works without causing other symptoms or side effects?

There are so many unanswered questions with fibromyalgia.

A New Forum for Men (and everyone) Touched By Fibromyalgia.

Our parent organisation, FibroMen, has set up a new discussion board for men with (and others touched by) fibromyalgia.

Yes, we know! There are lots of fibromyalgia discussion boards and forums dotted all over the internet, and most of them are great. 

FibroMen as an organisation want to build their community and online audience and the forum is one way of attaining their goal of raising awareness. The site and forum is open to all, not only males with fibromyalgia, but everyone who is touched by the syndrome - wives, partners, families and carers alike are invited to share experiences - the highs, the lows and yes, the aches and pains of fibromyalgia.

Please join us by writing a quick introduction and posting a question or query that's been playing on your mind, or writing a quick helpful tip for living life with fibromyalgia.

The message boards are accessible on both sites (FibroMen and FibroGuys) we'd love to meet you there.

Please help FibroMen and FibroGuys make the forum a success by sharing with your social media contacts and wider audience.

Visit the forum here.

Thanks