I see so many fellow fibro-warriors on Facebook and Twitter extolling the virtues of 'meet-ups' - where they meet other sufferers, local to them, to exchange information and just have a natter!
Social interaction is of vital importance when you're struggling with this awful condition. Even if you're not alone at home it does you good to get away from those who see you on a daily basis and mix with others who know what you're going through - not necessarily to moan or complain - although that can happen - but just to talk to someone in a similar position about life.
I see these Facebook groups - I'm even a member of a few of them - and how the members are meeting up for a social event on a regular basis, and I get a pang of jealousy.
I've long been considering setting up such a group for my area - Tees Valley/North Yorkshire (specifically: Middlesbrough, Stockton, Darlington, Hartlepool and Redcar) but I haven't got a clue how to go about it. I suppose the best way is to ask those other group members who already operate social gatherings, about the best way to start - however, some of the groups are 'sort of' local to me (Newcastle, Sunderland) which is too far for me to travel but not for others whom I know attend despite having to travel the thirty or so miles. I don't want to be seen to be 'stepping on toes' or stealing from other groups! And, whilst there is no law against it and nothing to stop members from other groups attending both meet ups, I still feel like I'm doing something wrong!
I think I'll probably start by setting one up in my home town - Middlesbrough - and see how it goes. I know that there are many fibro sufferers here. So I'm going to send out a flyer to as many local GP's surgeries as I can to see what response I get.
If you're reading this and live in Middlesbrough - just post a comment, get in touch on 07847248321 or email me at email@example.com
If you've been involved in setting up a similar support / social group - I'd like to hear how you set about doing so.
Our 'brother' site FibroMen is conducting a survey on pain treatment and management and they'd love to hear your views:
What works for you, what doesn't work and what made you worse?
I've had years and years of different medications and treatments, a lot of them absolutely useless, a lot of them with side effects far worse than the pain they're meant to treat. Have you had a similar journey?
To go to the survey follow this link FibroMen Pain Survey - and then come back and comment here.
I was diagnosed with Crohn's Disease in 2007. It was (apparently) a very small patch of my lower bowel which was affected but it was sufficient for my gastroenterologist to make a positive diagnosis. However, all subsequent endoscopy investigations have revealed no further inflammation.
My GP considers my recurrent bowel 'problems' to be associated more with I.B.S (Irritable Bowel Syndrome) than with Crohn's and even went so far as to suggest I have 'Severe and chronic IBS' - there are tests to determine levels of inflammation within the body and mine usually come back as low, so what else could it be if not IBS? Irritable isn't inflammation and Crohn's is caused through the latter.
I take Buscopan for my IBS. It has little effect on the symptoms. What is effective is Loperamide - used to 'thicken things up' (Sorry if that's too much information!) But I worry that using Loperamide (sometimes branded as Immodium) regularly will somehow mean that my intestines will give up trying to 'thicken things up' naturally - training them to expect the drug to do what they're supposed to - so I try to limit my intake.
Needless to say, I have horrendous problems getting my guts to produce anything resembling a 'normal' bowel motion. I have read umpteen articles indicating IBS as a 'symptom' of fibromyalgia - so, does that mean that we all get IBS?
I know the symptoms of fibro can be many and vary from individual to individual but I'd like to get a feel for how many of my fellow 'FibroWarriors' have IBS?
I'm conducting a little poll - just a couple of questions.
I appreciate you taking the time to complete the survey.
You can also leave a comment below - if you feel up to it - about how your IBS affects your daily living and how you deal with it alongside your fibromyalgia.
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.
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.