Moving Home, Downsizing & Getting Back On Top of Things!

For far too long I have struggled to maintain a semblance of balance between my home, work and online lives. I know now that juggling several websites and blogs is not only time consuming but also, with my conditions, ruining my 'me' time and having an impact on my health and family life. This is possibly one of the causes of my grand mal depression last year - and why, ever since, I have avoided my blogs and sites (to a certain extent) only posting when I felt I absolutely must.

What I think I'm saying is that I've become over-stretched by trying to maintain too many things in too many places, blogs on weebly, blogs on blogger, sites on Fibro and trying to build a social site for fibro / chronic pain sufferers. I've confused myself as well as my readers.

However, I have always liked blogging so I don't want to abandon it altogether, though I definitely need to trim off some of the branches that are no longer a pleasure. So, with immediate effect I am transferring this blog to a new site, where I will endeavour to combine every element of my online activities - A blog, (singular) with links to each of the two main fibromyalgia sites (fibromen.org and FibroMates.com) The blog and site will be hosted through Wordpress (sorry Blogger) The site will also encompass elements of my other activities and hobbies - namely web site development and domains, hosting, email sales with my micro business (GEEMAC and GEEMAC Web)

I will endeavour to reconnect with those friends I have made through this blog over time - so this isn't goodbye, merely adieu until we meet again at the new site:

My Fibro Life

I look forward to seeing you there. Thanks to those who have followed this blog and my many struggles over the past five years.

Gary

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.

Being A Fibro Dad at Christmas

Christmas is a wonderful time of year. A time for living, a time for believing, a time for trusting, not deceiving, love and laughter and joy ever after, ours for the taking,..... ahem! sorry, slipped into Cliff Richard mode there, but Christmas is definitely a great occasion best spent with family and friends. Great nights in, great nights out, fun, laughter and yes, joy ever after. (Cliff was so right!)

But what's Christmas like when you're in constant pain?

I've spent thirteen Christmasses in varying degrees of agony. Christmas 2002 was spent looking after my heavily pregnant wife - pushing her around town in a wheelchair because the baby had decided to settle on a nerve somehow. A year later and I'd been diagnosed with fibromyalgia, a condition which I didn't fully appreciate at the time. Nor did I have time to. A new baby to care for, a wife with post natal depression and anxiety to care for, a house to look after and a full time job, there was no time to think about what I was doing to myself. 

I started coming down with every condition known to mankind - flu, bronchitis, cold after cold, stomach disturbances, and pain. So much pain. My back was the worst, lower to middle, aching constantly, but I fought on and each Christmas I stood at the oven cooking the family feast. No matter how much pain I was in. I'll be doing so this year too. My wife and I promised ourselves that we'd book somewhere for this Christmas but her mother wouldn't hear of it, so  it'll be just as it always is.

Don't get me wrong, I enjoy Christmas, and I love cooking the meal, but once in a while I'd like to give my body a rest from it. Thankfully we don't have a massive family descending upon us each year - but, sometimes, it would be nice to, so that we could go to them!

Also, since 2003 we've had our little bundle of joy to entertain and excite in the run up to the big day. A a father I was suddenly expected to not only cook the Christmas dinner but also unpack and assemble the latest fad-toy - Disney Princess houses, fairy coaches, Barbie cars, kitchens, Littlest Pet Shop villages, Play Mobil schools and villages and cafe's, Moshi-Monster tree houses - all of which seem to have been packaged in high security metal twists and impregnable duct tape, with no prospect of speedy opening or the "Easy assembly" promised on the box! It's difficult enough for a fully able bodied person to fathom these things out. Manufacturers obviously conclude that because you're buying for a child, you're young enough and fit enough to unpack and build their items - they don't think of the less able bodied.  

Thankfully, this year it's fashion and make-up and Hunger Games Mockingjay stuff so there'll be no assembling (fingers firmly crossed) and Emily is at an age to understand that I'm no longer Superman. Imagine telling an excited little girl that she can't play with her new toys until Daddy has the strength to assemble them? It never happened. I pushed through the pain to complete the task, and paid for it later. But it was all worth it in the end and we have some very happy memories to look back on - my only regret is that I don't know how much better it could have been had I not been in agony for most of it.

How do you cope with Christmas? Do you push through and suffer the consequences later, or do you hide yourself away until it's all over? 

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.

Are You A 'Loner' or A 'Sharer'?

When you live with any chronic condition there are highs and lows. For me the highs are when my pain is at a manageable level and I can get on with the things I want to do, whether it's mending something in the house, doing a bit of art, blogging or just trawling the internet for a couple of hours. 

These activities provide me with a bit of 'me' time, when I can escape the rigours of family life with only mild pain and life is good. Another 'high' for me is spending time with my wife and daughter - trips to the park or the local museum for my daughter and me, and days out as a family (usually involving shopping - which I abhor, but put up with for the sake of family unity!) as well as cosy nights in front of the TV. These are the things I enjoy during the 'highs'.

But doing these activities during the 'lows', when my pain is riding high,  I find depressing. It's because I'm unable to enjoy them as I normally would. I get that. Because I can't sit still to draw or watch TV, I can't walk (far) without severe pain and I can't focus on anything but the pain. It's depressing for me because I feel I'm letting my family down. It is during the 'lows' that I find myself wishing for solitude.

I'm not really nice to be around when I'm in agony. I do try, really try, not to let it affect my family, but I fail, really fail, at hiding the fact I'm in a 'low'. I don't think my family would, or should, want to be around me - so I pray to be alone. However, I rarely am alone and this makes me depressed - especially if I wake in a 'low' on a day we had planned to do something and we have to cancel - because of me, it's my fault, I'm depriving them of their fun, if it wasn't for me they'd be able to get on with it - that sort of depressed, that sort of feeling of 'if I was alone I wouldn't be letting anybody down.' 

So I've reached the conclusion that, essentially, and because I'm in unmanageable pain for probably 75% of the time, I am a 'Loner.' I hate 'sharing' the 75% of my life.

My wife is the opposite. My wife hates to be alone when she's suffering with her ME. She loves to share her pain and fatigue symptoms with us and explain how she's feeling at every given opportunity. I find that odd and, at times, profoundly irritating and yet it is also endearing and intriguing. Being polar opposites I find makes me want to be more like her. I could never go in to as much detail about my level of pain with her as she does about hers to me but, sometimes, I wish I could unburden myself like that. Case in point: I hold back on everything I'm feeling when talking to my GP - and because of my reticence to share the finer details, he is confused about how best to treat me and I no sooner sit down in front of him than I'm walking out of the door. My wife's appointments last a minimum of fifteen minutes. My wife definitely likes to 'Share' it all!!

So, what about you? Are you a 'Loner' or a 'Sharer'?

(This post was originally shared at MyFibroBlog)
  

Counting My Spoons - The Interview

This week I am honoured to have been the subject of an interview by Julie Ryan who operates the Counting My Spoons web site. 

The site has been running a series of interviews (Fibro Warriors) detailing the lives of those affected by Fibromyalgia, and I am one of a number of men who've shared their 'fibro-journey'.

You can read the full interview by clicking HERE

Many thanks to Julie for giving me the opportunity to share my story.

TENS Machine - Update

The 'Knight in Shining Plastic' I described recently (Back Pain - Sudden Worsening) - the one that arrived just as my back pain became unbearable after it seized up - has been working brilliantly. I've tried just about every mode, and program within each mode, and found the one(s) which help the most.

The unit works by stimulating nerves and muscles via a small electrical impulse. When on the sensation feels like mild 'pins and needles', a tingling or prickling feeling and, if turned up high enough it sometimes makes the muscles twitch. 

So far I've used it two or three times a day on my lower to mid back and, I have to say, it's an amazing piece of kit. I attach the electrodes to the points of my pain (in my case anywhere on my back will do) switch on and away I go. The relief is more or less instant as my pain gives way to the mild tingling and pulsing of the machine - I can increase the intensity of the stimulation with a press of a button depending on how bad my back is, and I tend to gradually reduce this over the course of an hour until I switch off the unit. Then comes the second of only two downsides to the machine - the pain returns within a few minutes of switching it off. (The first 'downside' is the icy coldness of the self adhesive electrode pads that you have to stick on your lower back!!)

But I can live with that. 

A couple, or even three hours a day with no pain is such an improvement on twelve years of 24 hour a day pain. The unit is portable so I can take it with me on trips out to finally 'enjoy' (?) a full shopping trip with my family, as opposed to grumbling and moaning to them after ten minutes of pushing the trolley! (Though I reserve the right to grumble and moan about shopping even if pain free!!)

I've also tried the unit on my hip pain with equally positive results - when on full blast I can walk upright, with no limping. I even managed to do a little 'Dad dance' around my living room with my Daughter. For the first time in years I felt like a normal father.

I know that it's early days, but based on the results so far my investment of fifty quid has been well worth it!  

Unresolved emotional trauma - Mother.

I've learned recently that fibromyalgia, CFS / ME and other auto-immune 'syndromes' can be triggered as a result of emotional trauma and came across this post from a previous blog of mine. Written in May 2008 'celebrating' the 64th birthday of my mother who I hadn't seen for five years (It's now passed the twelve year mark) it shows one brief chapter in my Life with My Mother, which had always been a strained relationship to say the least. Reading the post again this morning it raised a lot of unresolved emotional traumas - I want to scream at her for being a really bad mother, I want to thank her for raising me to the point that she did (I was nine when I moved into my grandmother's) I want to beat some sense into her, I want to show her what she's been missing out on by excluding us all from her life - three grandchildren, two sons, two daughters in law - all those Christmasses, birthdays, Mother's Days when we could have been a family..... anyway, read on, you'll see it's written in blue italic pent-up anger font:

If I had a picture of my Mother (I do now - scroll down!) on this computer I'd post it here today. Today is her 64th birthday after all, so you'd expect some kind of recognition or even a bit of a celebration of her life so far. It's what normal families do, isn't it?

The fact that I haven't seen her since the summer of 2003, or spoken to her since March 2005, should be alien to most families. Not to mine.

Prior to the birth of my daughter in 2003, and for reasons best known to herself and her third husband, Mother had decided to exclude me (and my brother) from her life for nine years. It was not until six months after Emily was born that I plucked up the courage to write to her to advise her that she was a third-time grandmother. Her response was that of a normal Mother - we visited her (once she'd told us where she was living) and for a few hours one day in 2003 we were a normal family. She was overwhelmed with Emily and seemed genuinely delighted that we should put the past behind us and move forward. I was wary. With good reason.

A few days after the visit I called her and she was cool again. I asked what was wrong but she didn't want to say (or couldn't, or wouldn't) and a few days later an email arrived from her husband Richard, who advised me that I should stay away or he would call the police. His reasons? Apparently I had not called Mother to thank her for the birthday card she'd sent me and he'd assumed that the reason I hadn't called her was because she'd not included any money with the card, and that I was a scrounger, a layabout, a liar and a cheat. He is quite mad and has driven my Mother, who was never quite the full shilling, to his mad ways. Alienating her from the entire family on her behalf, but I suspect secretly with her full approval.

In March 2005 I got a call from her, out of the blue, to advise me that she had been diagnosed with osteoporosis and that I should let Steven (my Brother) know "as it's hereditary." Why she couldn't call him herself I'll never know. At some point in the conversation I mentioned my Nana (her Mother - who had sadly died the previous month), her response? "I don't want to talk about that woman!" I said "You do realise that she died last month - Richard did tell you, didn't he?" The phone fell silent for a brief moment and she repeated that she didn't want to talk about 'that woman!'. Clearly Richard had not passed on the news of her Mother's death. This explains the reason for her failure to attend the funeral.

I haven't spoken to her since. She married Richard in 1983 and quite quickly began to alienate herself from the rest of the family. Steven was first in 1986 when she 'boycotted' his wedding because of some minor disagreement over seating plans. Even the birth of her first grandchild in 1990 couldn't heal the rift - though Steven tried, and again with his second child in 1992 - to no avail. She boycotted my wedding in 1993 because I'd invited my brother. All in all, between 1983 and the present day, I have seen my Mother less than ten times.

The family had never been really close due to my Mother's ways, but after Richard came along it divided, sub-divided and sub-divided further to the point of no return.

For Mother, today will have no flowers, cards, presents, chocolates, tacky ornaments with "To the Best Mum In The World!" lovingly etched upon their surface, no visiting offspring, no dropping by sister, no high-pitched telephone calls from shy little grandchildren.

Today will be a day for Mother, with the eager support of her doting husband, to reflect on how badly she has been treated by her family, when really she should be looking closer to home, and within her own heart.

I'm sad for what could have been.

I'm not just sad anymore - I'm angry, but by being angry inside and not expressing it to the focus of my anger I'm left with this unresolved issue and all this stress, and we all know what that can do to the system. I thought writing it down might help. It hasn't.

Left to Right: My Gran, me(aged 8), my mother, my brother. At her 2nd wedding in 1975

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!

Quality Family Time - What Does It Mean To You?

Modern life decrees that we should all run around like frightened ferrets to maintain a lifestyle none of us can afford. We add stress to our lives to ensure that we are earning enough to pay for the house, the car, the annual holiday(s) the latest hi-tech gadgets, and we do this intentionally. Nothing is ever enough.

I'm done with it all - I did the stressed out thing years ago and look where it got me, fibromyalgia, crohn's disease. My family live very frugally these days - we have to having given up, or had taken away through austerity, the high powered, high earning roles we once had, we're now both cashiers in convenience stores. But even our frugal lifestyle dictates that we must work at least 37 hours per week between us to make ends meet and that means that six out of seven days in a week one, or both of us are at work. We only get Thursdays when we can be a complete family together.

But we get by. We earn enough to pay the mortgage and rates and utilities and, because we rarely go out for meals or social occasions, we treat ourselves to a decent package of entertainment through Virgin Media.

We don't buy a new car every three years like we once did. Our car is now twelve years old and probably in need of some TLC - but only when, and if, we can afford it. We don't have the latest in high tech gadgetry - we have a ten year old laptop, pay as you go mobile accounts with second hand handsets and a Samsung Galaxy Tablet (one out of three ain't bad!) which we had to get for Emily to use for her education. We don't take annual holidays overseas for two reasons 1: We can't afford it and 2: We really don't want to. Many of you might find the latter a little strange but we really don't want to - we have all we need on our doorstep, so much history within a hundred mile radius of us that we have yet to explore, so many visitor attractions, beaches, lakes and natural beauty within walking distance, why would we want to fly half way round the world when we can do it all at home?

It's also good that we are all singing from the same song sheet too - it would be hell on Earth if one of us had some kind of wanderlust and the other wanted to be a hermit - we ALL love the way we live - work as little as often, earn what we need to live in that time and the rest of the time be together as much as we can and enjoy "Quality Family Time" in front of the TV or playing a game or doing some sort of craft,  with a cosy fire, a nice cup of tea and warm slippers!!

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.

Saturday - Dad n Daughter time

Emily with Pepper (Our cat of 17 years who sadly died in February)

On Saturdays my wife Lesley heads out to work at 9.30am which means Emily and myself are left to do our own thing - this usually involves lounging aound the house, a trip to the local shops or a trip to the park. We'll both admit that lounging around the house is our favourite Saturday pastime
- and I have to consider how I'm feeling in terms of health conditions before we make any firm plans to venture outside!

Emily

On the odd occasion when we do go out it's usually up to Stewart Park in Middlesbrough - home of the Captain Cook Birthplace Museum and our favourite cafe, Henry's, where we indulge ourselves with their delicious bacon butties and coffee and sweets!

It's our favourite place in Middlesbrough.

Saturdays have become Dad n Emily days! Restful together time when we can craft, draw, watch TV or nip out for a bite to eat - and chill.

Dad in silly hat!

We love Saturdays!

I'm thankful that, in Middlesbrough, we have everything we need on our doorstep - the park is half a mile from our house and if we drive for five more miles south we have access to the beautiful North Yorkshire Moors National Park - I tend to moan a bit about our town but it really couldn't be positioned better for amenities.

How do you cope with the pain?

Yesterday was a good day. I made my 05.45am start at work and managed to complete all of the heavy lifting and carrying involved in my role. I finished work at 11.45am and drove home.

In the time it took for me to finish work and drive the one and a half miles home it seemed that every fibre in my body had dried out. I could barely find the energy to open the car door! The pain in my lower back had intensified to a hot burning poker and not one but both elbows screamed in agony when I tried to bend them.

My daughter Emily had a dentist appointment at 2pm so I had to ready myself for that. I made myself a sandwich and took some cocodamol, which didn't touch it, somehow got changed out of my uniform and dressed for the rest of the day, by which time we were due to leave.

Emily chatted happily in the car, though I could tell she was nervous about her appointment - she tends to chatter a lot when she's nervous - anyway, her talking took my mind off the pain for me a little, though every gear changed pulled at the base of my spine and increased the pain in my left elbow.

The dentists appointment went well - though Emily has overcrowding issues and needs to have some milk teeth removed at her next visit - and we drove straight home. I decided not to make Emily do her afternoon lesson (we homeschool) because she'd done well at the dentists (and probably because I was in too much pain!) So we spent the rest of the afternoon watching TV and chatting about this and that, and laughing a lot - we do a lot of laughing, Emily and me!

Lesley (my wife) came home at 5.30 and it was time for me to cook our evening meal (which, being from Yorkshire, we correctly call 'tea') I rustled up my speciality - fish fingers, mashed potato and peas which always goes down well in our house and then I washed the pots - "dream husband" is what my wife calls me!!

And in all of it the pain never left my body. It never subsided or abated, it stayed a steady 8 out of 10. Every movement hurt, talking hurt, eating hurt, swallowing hurt. In the evening we'd chatted about Pepper our cat who sadly died on Wednesday morning, and we'd got upset a little thinking about how frail she'd become from the bouncy young cat we first met in 1997 - even crying had hurt.

The whole day, since finishing work, had been one long tortuous torrent of moderate agony. So how did I function? How did I manage to do the things I did when I was in so much pain? What part of me allowed me to get on with the tasks that had to be done?

The simple answer is "I don't know." I hear it so much - the words "You just have to get on with it" I've heard myself uttering those words, but I have no idea how. I simply can't describe what it is that makes me move and function when all I really want to do is curl up and wait for the pain to stop. Perhaps it's knowing that the pain will never stop. Perhaps it's because I've grown used to it.

Can you describe your coping mechanism?