Three days into the new year and it's 'no change' as far as fibro is concerned.
Christmas, such as it was for me - working until 10pm on Christmas eve, Boxing Day, New Years Eve and New Years Day - was over in a flash, like it never happened - the joys of working in retail during the holiday period! And, unless I change my shifts or, better still - my job, 2018, 2019 and 2020 will be the same!
Work entails lots of lifting - heavy lifting and lots of standing. I find myself on auto-pilot at work. I start my shifts at 17:30 and work until 23:15 during which time I get a fifteen minute break. I cannot sit down during my break for fear of not being able to get back up so I stand with a cup of tea, eating my sandwich and then go back to lifting and standing. Depending on how hectic the shift has been I find myself unable to get out of my car when I get home - I seize up that quickly after stopping work - the drive takes four minutes! If I'm lucky I can get out of the car and into the house, wash my hands and sit with a cup of tea before bed. Getting back out of my armchair after that cup of tea is sometimes impossible and my wife usually just covers me up and reclines the chair for me to sleep in.
I expect 2018 is going to be more of the same in the pain stakes - unless someone finds a cure!
As I approach the end of 2017 there's a lot to look back on. So many issues have caught my interest this year - Brexit, and what a mess it is being made of by the government - The 'Government', led by Theresa May who called an election in the hopes of raising her majority in parliament only to wipe it out completely, yet still she clings to power and continues to do so much damage to the social fabric of our country as well as our standing around the world. My main hope for 2018 is that Jeremy Corbyn's revitalised Labour party can sweep the tories away and begin the process of healing we so desperately need.
But, my overriding memory of 2017 will be that I found my Dad. After more than twenty years Peter Smith (only my step-father but father in every other respect) was raised from the dead - quite literally! I had heard through the grapevine that he had died in 2009 and, since I hadn't seen him since around 1996 when he was in poor health after a motorcycle accident, I pretty much accepted that I had missed the boat to rekindle our relationship. But then a chance phone call with my brother revealed the fantastic news that Peter was still alive!
I went with my brother to see him on 19th November and we chatted as if the years hadn't passed. We laughed and joked and quizzed. I told him about my daughter and showed him a photo. He even played his drum set for a short time - though he was clearly still in very bad health. He laughed when I told him I'd heard he'd died in 2009 and even confirmed the story when he recounted a visit to his local pub where his friends were surprised to see him having also heard of his demise! We parted with an exchange of mobile numbers and a promise to keep in touch. I felt ecstatic to have found him again - the only father figure I ever had.
On Friday 24th November Peter Smith died. He had been rushed into hospital on the day after our meeting with breathing difficulties. I only saw him on two more occasions - Wednesday 22nd when I woke him as he sprawled in a hospital chair with an oxygen mask attached to his head. His first words were "They've given me two weeks. I hope so. This is no fun!" I saw him again on the evening of the 23rd and introduced him to my daughter and wife - who he cuddled and thanked for coming to see him despite his obvious discomfort. As I was leaving I told him I would see him again the next day and he said "No, this is it." as if he knew or wanted this to be our last goodbye. With voice breaking I told him I loved him and he gave me the thumbs up!
Dad's best friend growing up in Middlesbrough in the 1950's became a member of the rock group Free. They had remained in touch despite their very different lives and he even wrote a beautiful eulogy for Peter's funeral, after which we played the following track. Having found and lost my Dad in the space of just five days I truly hope that he is All Right Now.
Today I had a planned occasion.
Emily and I have been waiting months in eager anticipation of the release of the new "IT" movie, and today was the day we'd planned to visit our local Cineworld to watch it.
I know, I know - never plan anything because, invariably, it will have to be cancelled because of a flare of crohn's or my fibromyalgia - but plan it we did.
The day started out fine - usual pain but nothing out of the ordinary, until about 10am.
That's when the crohn's disease decided to have a go at me. It's as if it knows I have something planned. Three trips to the 'smallest room' in the space of an hour - it was going to be a bad day!
But today was different. Today I refused to let it win. I tried to think positively. Tried to focus on anything but my guts.
Normally when my crohn's flares I become extremely anxious. I pace around the house nervously waiting for the next onslaught. But today I tried to push it to the back of my mind and, in the main, I succeeded.
I made it to the movies and can highly recommend "IT" - it has the right mix of suspenseful terror and mild humour.
Being a horror movie I was concerned that any truly shocking moments would prove too much for my flaring crohn's disease to handle - but luckily my underpants survived unscathed!
Today is (so far) a good day. It is often the case with blogs I've written in the past, to focus only on the negative sides of the illness. Days where nothing can be done because of the pain, Crohn's flare days - spent on the toilet - recovery days when the pain is manageable but rest is vital. Nothing gets done. Everything is too much trouble.
Today is a good day. Not because I'm free of pain - that would be a 'miracle' day - or because my guts aren't in turmoil - they're actually quite bad ATM. No. today is a good day because I have achieved something I've been wanting to do for a few weeks but had neither the energy nor the inclination to attend to it.
Today is a good day because I feel unusually energetic IN SPITE of my pain and gut discomfort. I tend to over do it on these days - throwing myself into decorating a room or digging the garden - and that spoils me for the next three or four days! Not so today.
Today I simply arranged to have our central heating boiler repaired.
It's a little thing. It only took a couple of quick phone calls - one to the manufacturer for the part, one to an engineer to arrange fitting - and now that thing that's been hanging over me like a lead weight for several months is about to be rectified.
That thing which has seen me (and my family) trapesing upstairs to reset the boiler three or four times each time we tried to fill the sink to wash the pots, and standing by said boiler whilst filling the bath - which would mean upwards of thirty resets to get half a bath of hot water. That thing which has meant no heating since May (thank God for the summer!)
I finally got round to sorting that thing. That's a good day.
Now on to the next thing - I have a looong list of 'things' just waiting for me to feel energetic enough to do!!!
I'm Gary. I am fifty one years of age for the next month and a half. I'm married to the beautiful Lesley and have been for the past twenty four years. Together we have one child - our gorgeous Daughter, Emily, who is fourteen.
Ours is a relatively happy, normal life. Lesley and I both work, part time, in retail. Emily is a student. We share a two bedroomed semi detached house in Middlesbrough, North Yorkshire, UK. We have three cats - two moody she-cats and a frustrated tom!
We are all disabled in some way.
Lesley suffers with M.E / Chronic Fatigue Syndrome. Emily has O.C.D (Obsessive Compulsive Disorder) around germs, and I have Fibromyalgia and Crohn's Disease.
Needless to say, our ailments command a great deal of our time and impact our lives in some spectacularly alarming ways - on a daily basis! But we both work - albeit part time. Emily has to be tutored at home.
This blog is intended to be a record of how my ailments affect and impact my life, but I can't write about my life with fibromyalgia without referencing the impact it also has on my family and their ailments. What a bunch we are! We are a family though, and family supports each other when times get difficult - as they often do - and, in the main, we are happy with our lot. We share a wicked and juvenile sense of humour, Emily and I love to watch comedy shows on TV, and we all love cosy nights in!
That's as much as I can muster for tonight. I'll write more tomorrow....
I've had fibromyalgia for most of my life - diagnosed in 2003 - developed crohn's disease in 2007. I operate a website for men affected by fibromyalgia: www.fibromen.org - pay us a visit to learn more.