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...........

Telling Tales - A Cry For Help!

I've been writing about my fibromyalgia journey for a few years now and I'm pretty sure that most of my readers are fully up to speed with how my fibro affects me on a day to day basis. I write about it to help in my personal crusade to raise awareness of the fact that men get fibro too - I'm also pretty sure that that fact is now well known in the chronic illness community and it is getting out to the wider community too - even some doctors believe it!!

At the moment I am in the middle of a major flare - which is why you haven't seen me posting very much in recent days on social media etc. I'm sorry about that as I do like to promote FibroMen as often as I can. The truth is I am depressed and my depression is making me extremely tired, so when I'm not at work I have to rest. I'm sure you understand and can empathise with that.

So, I'm throwing open the doors to allow others to 'fill-in' for me whilst I'm resting.

I operate another site called "My-Fibro-My-Algia" - and, as you can imagine from the title, it's about fibromyalgia and other chronic pain conditions - not just in men, but in everyone! The aim of the site is to get people talking about their condition - sharing their journey of hope over adversity with chronic pain conditions. The ultimate goal of the site is raising awareness but it is hoped that visitors will learn more about their own conditions through positive stories by real sufferers. They don't all have to be positive of course - your story might be one similar to mine, where you're currently in a bad place. We don't want to pull any punches. Living with a chronic pain condition is difficult at best and downright unbearable when things get really bad. We want our readers to understand this - especially the newly diagnosed who might be struggling to come to terms with their diagnosis - there are going to be good days and bad days, as with everything in life, but our message will be "You are not alone."

The site is in need of some content - and that is where you come in. Please take the pressure off me for a while and help me by writing a short piece about your "Journey So Far" with your condition. You can write about getting a diagnosis, what your life was like before and after diagnosis, treatments that failed, treatments that worked, alternative therapies, exercising, voodoo, devil worship, witches covens, witch doctors - literally anything that you have been through on your journey with your chronic pain condition.

By sharing your story you'll be doing three things:

• HELPING TO RAISE AWARENESS

• INSPIRING HOPE IN THOSE NEWLY DIAGNOSED OR STRUGGLING TO COME TO TERMS WITH A DIAGNOSIS

• HELPING ME TO GET OVER THIS FLARE AND DEPRESSION BY RESTING 

(I can manage the cutting and pasting to share your stories though!!)

So, if you're interested, and have the time, I'd appreciate any help I can get to get more content on the site.

You can share your story HERE.

Thank you. I'm off back to bed - when I wake I hope to have an inbox full of your stories!!

(Shared with Chronic Friday Linkup and Chronic Illness Bloggers )

Depression & Fibromyalgia - An Admission.

I know, I know, we've been here before!

I wrote way back in October / November of last year about how I was battling some really dark clouds in my life. I put it down to turning fifty and being in constant pain and I was determined to overcome it without the need for medication.

Just after Christmas I thought I'd beaten it. Things began to look brighter. I was still in chronic pain and  I had, in the time since I last wrote about being depressed, been prescribed Oramorph to take alongside my Cocodamol - despite my being unwilling to go down the drug guinea pig route again. But, up until last week, everything seemed fine. I'd beaten my depression.

Then, a week or so ago, I woke up feeling really miserable one day. Nothing specific that I could put my finger on as the cause, I just felt glum. I thought I might be getting another cold and brushed it aside, but I was very snappy with the family and really easily irritated.

On Tuesday my poor, long-suffering wife, made some innocuous remark about something (I can't even remember what it was) and I blew my stack. Said some awful things and really lost control. The worst of it was that I lost control in front of our thirteen year old daughter. 

Now, even when I'm in the wrong and I know I was in the wrong on this occasion, I'm a stickler for not backing down and I used the old "well if you hadn't said / done such and such, I would never have said what I said" chestnut - which only served to amplify my wife's anger towards me and the row went on for several days. In fact, it was still going on this morning - six days later.

I had a pre-booked appointment to see my GP to review my medication at 10am today and when I walked into his consulting room everything (apart from the row) was fine. I sat down and he asked how I'd been and I just burst into tears and let it all pour out. I felt such an idiot. Normally when people ask how I've been I say "Fine" or "Not so bad" - it's a standard for fibro sufferers the world over. Today I let the standard fall. My wall, usually so impenetrable, collapsed to dust and the flood barriers opened.

Clearly my depression had not been beaten. I'd just bottled it all up, put the cork in the bottle over Christmas and New Year only for it to explode today in a spectacular, embarrassing and totally non-British way!

I walked out of the room fifteen minutes later with a prescription for Duloxetine in one hand and a wet tissue in the other, dabbing tears away from my bloodshot eyes as I walked into the waiting room, where my wife sat waiting with a smile on her face. We wrapped our arms around each other and hugged. I blubbed a pitiful, guilt-laden "Sorry" into her shoulder. 

She'd known all along that this day would come.

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.

Your Stories - Paul in Southampton, UK

In two weeks a milestone will have been achieved. On 2nd July it will not only be my 43rd Birthday but also the 1 year anniversary of the last day I was able to work. It is something I'm not proud of at all and to be honest I had no idea it would have affected me this much.

I started to become unwell in January 2014. It started with a headache which progressively got worse and never went away. The headache affected my vision and I had an adverse reaction to bright lights. Then I noticed my knees were painful. Again the pain increased much like the headaches.

After several attempts to get help from my GP who was dismissive I sought a 2nd opinion and saw a different GP, who after the initial examination introduced me to the world of Fibromyalgia. It was only because of her belief in me and the symptoms tests were done to exclude other health issues and eventually I saw a Rheumatologist who diagnosed ME in August 2014.

Luckily for me the GP had started treating me for ME or Fibromyalgia on the first day I saw her. Various medications were tried, tested and rejected because of adverse side effects.

While this was all going on I was still working full time. I had 3 weeks off in May as the pain was just too much. From that point on, work became a place of disharmony. My Directors and Store Manager made life very difficult, even to the point where they suggested I resign and re-apply for a part time job!!!

Before being ill my career was progressing very well and I had the full backing and support of my Directors and Store Manager in evolving my career into a Regional Training Manager. Sadly that support stopped the day I returned to work after having 3 weeks off sick.

Dealing with a massive change in life is hard enough, to have no support from your employer and in fact for them to make life even harder was really tough to handle. Life became a battle, not only to get the best help I could while dealing with a horrible illness, but also to stand up for my employment rights against a Global company who refused any help from HR and who rejected any form of communication was devastating. Despite many attempts from me to try and find common ground their only answer and direction they wanted to go in was the end of my employment with them.

It still plays on my mind from time to time and this 1st year anniversary has stirred it up again.

In November 2014 I started stuttering and losing my words, by mid January it was all I could do to string a few words together. My GP and consultant were both concerned and started talking about a stroke!!! I was horrified, I didn’t feel like I had a stroke, but what would that feel like?

In March 2015 after playing around with the medication and all the ups and downs that go along with it my GP and Consultant eventually decided to stop the Gaberpentine. I was reluctant as I had been on it since May 2014 and it was the only medication I felt provided benefit. By this time I would have been on Gaberpentine for almost a year. I started to reduce it day by day and once I was clear of it my speech returned very quickly.

I had been on a concoction of over 30 tablets a day plus a 52.5mcg per hour morphine patch and nothing was helping.

After the success of coming off the Gaberpentine and not only my speech returning, but also my concentration and memory improved. I, with the consent of my GP, reduced all my other medication and stopped most of it all together. It was so liberating. YES, the pain increased, but I was me again. I started to laugh and smile. As the effects of the pain killers left me I became more and more like my old self. Clarity was returning to my life. With the help of my GP and consultant I was only on paracetamol and a Morphine patch. I had stopped all the sleeping tablets and started to sleep when my body told me to, this was against the instructions of my GP, but I made a conscientious decision to listen to my body.

My sleep pattern is all over the place. I have a few hours sleep from 11pm onwards and then up again approximately 2am until 6 or 7am and then sleep again for a few more hours until about 10am. It works for me and I feel so much happier for it.

In late May2015 I made myself a promise that I would never return to the zombie who was moody, unresponsive almost synthetic as the tablets and medications robbed me of any sense of real human emotions and feelings. I choose increased pain and to be me, a fuller person.

I embraced parts of my life I had ignored for many years. I am a creative person, right to the core of who I am. I had ignored that part of my life while trying to conform to the corporate needs of the employers I worked for. Many times in my professional life I was told I was a square peg in a round hole. No longer would that be the case.

While I am deeply upset and a little angry I have lost my job because of this horrible illness, and yes this 1 year anniversary of my last working day is upsetting, I have to remember what this illness has done for me. Not only am I creative I am also inherently optimistic, so with that in mind I now use my creativity as a form of therapy.

Every day is a day for creativity, be it writing, sketching, drawing, painting, crafting, stitching or doodling. This illness has afforded me the opportunity to embrace a part of my life, a part of who I am and run with it. I have submerged myself into being as creative as the illness allows. It is wonderful to reconnect to something I had ignored for so long. I wonder if by ignoring something so strong within me was not part of the cause of the illness in the first place. Should I have been climbing the corporate ladder in the first place?

The journey over the last 19 months has been fraught, emotionally draining and dam right depressing, but and it is a big BUT, I have got through it and over the last couple of months started to build a new chapter of my life accepting the limitations of the M.E and Fibromyalgia while still trying to forge ahead in a far more creative, soul enhancing way.

From a very young age I was always fiercely independent. Not being able to work and subsequently losing my job was deeply upsetting as my independence had been taken away. Thankfully I have a remarkable partner who has stood by me through this and who has had to endure the very dark places I went to when on all the medications.

I am lucky they have had the strength of character to visit those places and journey with me. It is only now, now I feel my mojo is returning and with everything I create another brick is being laid in the foundation of a better future. That better future encompasses everything I possibly should have been in the past and because of that we can start to plan our future together and get back on track.

Writing this has been so cathartic. I was so angry when I started writing it, but now I feel uplifted and thankful that I now have a freedom to explore a whole new future which includes the pain and fatigue of a horrible illness, but an illness that no longer defines me. I feel I am starting to reach a place of harmony with it. Yes I still have bad days where I can hardly get out of bed, but those days are wonderful for letting my imagination explore new thoughts and ideas for projects. I hope the future brings compromise between the health issues on my ongoing creativity.

Have my fellow sufferers been suppressing something in their lives that really should be acknowledged? I believe part of my illness is due to the continual dampening down of an inner me who was always trying to express themselves. It would be interesting to know how many make that same connection. 

Why not share your fibromyalgia journey - CLICK HERE 

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!

As Coincidences Go - This Has To Be The Strangest..

Way back in 1989, whilst I was working as a quality auditor in a plastics injection moulding factory, I began to develop horrendous pain in my left foot whenever I walked. It only happened when I was at work and wearing the heavy workwear safety shoes I'd been supplied with, but over time it got worse and I visited the doctor as over the counter pain relief hadn't worked.

The doctor didn't have a clue so he referred me to a specialist who diagnosed Morton's Neuroma - a benign growth over a nerve ending between the third and fourth toes. Ultrasound and steroid injections didn't work - so I ended up having an operation to remove the nerve and growth. Some months later the pain returned - this time in my right foot. Another Morton's Neuroma - another operation and all was fine until 2001/2, when I started showing the symptoms of fibromyalgia and was eventually diagnosed in 2003.

This morning I found this article - Is Morton's Neuroma Linked to Fibromyalgia?   

Again - it's more common in women than in men - they blame high heels - though that was definitely not the cause for me! It was the work boots, honest!

Looks like I've been fibromyalgic for a lot longer than I thought!!

Do you REALLY have Fibromyalgia?

Do you pass the fibro test?

I have the pain in all four quadrants, insomnia, fatigue and fog but I'd fail the eleven out of eighteen tender points bit!

Best start looking for a new diagnosis.....