Getting By.

I'm slowly rebuilding my strength. I've spent almost a whole year doing as little as possible - except for one thing - focusing on myself.


About this time last year I had so much going on in my life - blogs, reviews, websites - building and maintaining my own as well as developing new sites for friends and family, research, product reviews, contractual obligations, reading, maintaining the FibroMen site, trying to build the FibroMates site and their associated Facebook, Google+ and Twitter accounts - and all the while feeling worse and worse, suffering from agonising pain that not even morphine could counter and sinking further and further into depression and at the same time holding down a physically demanding job and trying to cope with a disabled wife and a disabled daughter, it all just became too much and one day I sought refuge in the form of a little too much medication - cocodamol, morphine, fluoxetine (Prozac) and alcohol. Not an overdose, merely a combination that was too much for my fragile state of mind to handle. I imploded.


The meltdown was so swift and my mood so dark that I shut out everything and everyone - including my wife and, to a lesser degree, my daughter - quite literally overnight. I became obnoxious. My marriage crumbled.


Apparently my whole persona changed. At work I maintained my old jovial, friendly and helpful state, but at home I was rude, indifferent and bullying. I was simply awful. I didn't want to be around my family and I tried my best, it would seem, to make them dislike me so that I could have a valid reason for leaving - there was a deeper issue going on which I can't/won't explain here, but those of you who know me personally are aware of what this issue was. All I will say is that many years, many decades, of pent up emotions and past grievances came bubbling to the surface. I hated myself, my life and everything/everyone in it. I painted on my smile and went to work for sixteen hours a week.


Now I'm getting by. My pain levels are at an all time high because I dare not take morphine again, but I'm getting by without it. I started going to a gym in late summer last year and, whilst this may be adding to my pain, or at least perpetuating it, I have fixed in my mind that the pain is a good sign instead of coming from the unknown like fibromyalgia, and I'm finding it beneficial to improving my strength so I can still work sixteen hours a week in a busy retail role. I look better too, so to hell with the pain!!


As for my marriage - well, I'm still at home. We still row, and my wife is keen to remind me how awful I was, but we're getting by.....

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? 

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)
  

Back Pain - Sudden Worsening

Last night I laid on my front on the rug in front of the fire watching TV, in an attempt to soothe my aching back, which has been plaguing me for many many months. I laid propped up on my elbows for about five minutes. My lower back pain did not diminish so I attempted to sit up and back into my armchair. I only just made it to the chair before the most excruciating pain hit my lower back. So intense was the pain that I could not move, in any direction, for what seemed like an eternity. It was as though my entire lower back had seized, or gone into spasm.

I have to admit that I panicked a lot. For a good hour it took all of my strength to move. I managed to stand, but walking was incredibly painful and bending was simply impossible, no matter how hard I tried I just couldn't get any movement without horrendous pain. My wife suggested a trip to A&E, but I hate going there so I struggled on through the night. It eased quite a lot when I went to bed, but it (and my usual nighttime nemesis - hip pain) woke me around 3am.

This morning the pain was still intense but I'd got some movement back and I managed to take my Daughter to school, albeit in relative discomfort. On my return home Mr Postman had delivered a package from Amazon - my digital TENS machine. It could not have come at a better time!

I quickly unpacked it and set it up to give my lower back a good session. The relief was almost instant.

I'd used a TENS machine a while back, but I wasn't anywhere near as bad with my back then, and it didn't seem to have much effect. But, after reading several reviews I decided to give it another go. It's early days, but I'm very impressed how it sorted out my spasming back.

I'll let you know how I get on over the next few days.

Happy Easter

Good Friday. Just got up and it would appear that it is going to be a good day indeed. Pain levels are around three or four - which is excellent for me and the crohn's seems to be settling down now that I'm back on the prednisolone. Don't want to tempt fate though as I have to be at work for 11.30. Have a happy Easter everyone.

I'll leave you with this cute image of the Easter Bunny...

...enough to cheer up any dull Good Friday!

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.

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?