This week I’m interviewing Gary McArther – yes there are FibroGuys! In fact, he’s started his own website/ blog dedicated to the guys with Fibro. Gary is from Middlesbrough, North Yorkshire, England. UK.
Tell us a little about yourself:
I am 49 years old, married to my long-suffering wife Lesley, who also has M.E and in 2003 we were blessed with our beautiful Daughter, Emily. We both work part time for a major retailer and, because we home school Emily, we have to juggle our working and home lives to fit around this. It can be a daunting process!
Working and teaching as we do means that we only get one day per week where we can all be together as a family and on these days we tend to enjoy visiting local attractions and shopping (I hate the shopping!!) Obviously our conditions do get in the way sometimes and we are lucky that Emily fully understands that we can’t do some of the things she wants us to do. She is an exceptional child as far as helping us as best she can – which is why I stated that we were ‘blessed’ – we truly were.
When were you diagnosed? How old were you at the time?
I had a provisional diagnosis of Fibromyalgia in 2003, a few months after Emily had been born, so I’d have been 37 at the time. It wasn’t until 2013 that doctors confirmed the diagnosis after many, many years of tests, hospital visits and going through the commonly held belief by doctors that Fibro does not exist in men. I really had to fight to get to the bottom of what was going on in my body. I changed doctors four times, saw consultants in gastroenterology, rheumatism, arthritis, pain management and finally found a consultant who dealt with chronic fatigue syndrome who immediately confirmed fibromyalgia.
What lead up to your diagnosis?
I started to get severe, crippling pain in my lower and mid back. It went on for a few months, and I put it down to having a new baby and lifting her carry seat in and out of the car and building nursery furniture etc. Being a smoker at the time I also immediately thought lung cancer and became incredibly depressed. Thankfully it wasn’t cancer but it also wasn’t anything the doctors could identify. The back pain intensified and spread to my arms, shoulders and elbows. The doctor treated me for tennis elbow and gave me ibuprofen cream for my back. He also branded me as a hypochondriac – to my face!! I knew I wasn’t and switched doctors!
What was your life like at the time?
I had quite a stressful job at the time, but it was productive stress that left a sense of achievement and was rewarded well, and obviously with a new child life was happy and comfortable. Lesley had taken a career break from her role at a major high street bank to care for Emily. We’d never been in a better position financially. Life was very good.
How did your family initially handle your illness?
Lesley really supported me through all of the tests and doctor visits and hospital appointments, but even she became exasperated when they could find nothing wrong. I do remember her using the “it must be in your head” phrase a number of times between 2003 and 2007 when I became quite sick with IBS symptoms. This was later ‘upgraded’ to Crohn’s Disease – again after many months of uncertainty and tests during which time Lesley fully supported me. I believe that it was a culmination of all of the stress I put her through during my fight for a diagnosis that she herself began to experience fatigue symptoms and was quickly diagnosed with CFS/ME.
What do you feel is the most challenging aspect of Fibro?
Not being able to do the things I once did with ease – decorating being a recent example. I’d taken time work to decorate the lounge and have a few days out with the family. It’s a fairly large lounge and before my diagnosis I’d have had it finished in three days. I’m back at work tomorrow night, after ELEVEN DAYS and it still isn’t finished – PLUS we only got one day out.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I developed symptoms of IBS in 2006 and when the pills didn’t seem to work they sent me for the very invasive ‘camera’ and that’s when they discovered Crohn’s Disease. For me the gastro symptoms just pile more agony on me. I live with the pain of Fibro and the fear of Crohn’s symptoms which can kick in at any time without warning. That makes me anxious when I’m out and about and at work.
What (if anything) have you found/ done that has improved your symptoms?
I’m still in the guinea-pig mode as far as medication goes – try this, try that, take these with this medication – it’s been twelve years of disbelief, tests, scans, ultrasound and now the only thing they (the medical profession) can offer is tablets. The one single thing I still do to help me is swimming – I love to float and flex my body in water – it’s so therapeutic and when I’m in water the pain diminishes for a while.
How open are you with friends & family about your illness & symptoms?
My friends and work colleagues are aware of my condition but don’t really understand it. They might ask “How are you today?” and I’ll answer, as most of us do, with a lie, “I’m okay.” or “Not so bad thanks.” when what I really should say is “I’m in absolute agony, as usual!” or “I really shouldn’t be at work today, I didn’t sleep at all last night, and my brain feels like it’s turned in to cotton wool.” I’m really doing myself a great disservice by lying at work because after I say “I’m okay.” they’ll ask me to replenish the heaviest items, on the highest shelves in the store!
My wife and daughter are brilliant, but they do tend to forget sometimes and ask me to do stuff a ‘normal’ man should be able to do with ease, and, if it’s at all within the bounds of possibility, I’ll try – and usually suffer in silence for it later.
Do you blog about your illness? If so, what inspired you to do so?
I do have a blog and web site that I set up purely and simply to raise awareness among other men with the condition – I searched high and low for a support group in my area and just kept hitting a brick wall so I decided to do it myself, but it seems to have developed into something more far-reaching with men across the world sharing their stories and, hopefully, inspiring other men to “come out of the Fibro closet” and declare their pain.
The site and blog is called FibroGuys
What is the best advice you’ve received about Fibromyalgia?
A recent blog from a fellow sufferer hailed the benefits of ‘pacing’ in Fibromyalgia. It’s something I never do. I have a task to do and I just get on with it without thinking how it will impact me later. As a result I tend to suffer royally the day after. So I’m now trying to set myself attainable goals and timescales to achieve them – pacing myself according to my condition and resting during completion of the task – even if I haven’t finished, whereas before I’d push on to complete it.
What was the worst advice that you followed?
My doctor advised me to do fifty sit-ups per day to strengthen my core and, in turn, my back muscles. He hadn’t taken into account the effects of sit-ups on the intestines of Crohn’s disease patients! (I switched doctors shortly after!)
What is your favorite way to cope with your life as a #spoonie?
Being at home with my family and doing as much ‘family stuff’ as we can – even if it’s just settling down to watch the TV, my family keep me going.
What is it that inspires you to keep going, despite your illness?
I think I just answered that one (family) but I’m also incredibly impressed with the amount of people (spoonies) out there who are willing to offer support to others, despite their own troubles. Their messages of support to total strangers are quite inspiring. I hope to emulate that with FibroGuys, in some small way.
What is one thing you’ve learned about yourself since your diagnosis?
I’m not as patient as I thought I was. I don’t know if it’s down to the medication I’m taking, but I get incredibly frustrated with myself if I can’t manage something I should be able to do easily. Brain fog is the most frustrating thing, especially in my work, where I forget what I’m saying half way through a sentence when I’m talking to a customer!
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Learn all you can about the condition and then accept that it’s real. Try your hardest to overcome whatever difficulties it might present you with, but accept when you’re defeated and move on. Share your experience with other sufferers and be open and honest with everyone you interact with.
Now that you’ve gotten to know Gary’s story be sure to check out his blog. You can also find him on Facebook – Google+ – Twitter – or email him at gary@fibroguys.com
Did you enjoy this interview? If so, please be sure to contact Gary and let him know or leave a comment here. If you’d like to share your own story please contact me.
Terry says
Thank u for allowing me to belong to your blog. I try and read as much as I can to be better informed.
Julie says
Thank you for being a part of it and for taking the time to comment.