Saying "Yes" But Meaning "No" - Yet Winning!!

I am terrible at saying "No."

Ask me to work a few hours extra at work: "Oh, okay then!"
Ask me to change the beds on a bad pain day: "Right, I'm on it!"
Ask me to help you dig up a tree stump: "Where's the spade?"
Ask me to lend you some money: "Here, take my wallet!" (this is a lie - my friends will tell you I'm tighter than a fish's chuff!!)

Get the picture? Recognise this in yourself? Or are you one of those people who can say "No" without hesitation? (If you are then we need to talk!)

I recently cut my hours at work because I was scared of letting them down when I had a flare of my crohn's / IBS symptoms. It was an early morning start (05:45) with no way of calling in if I was ill, so I asked them if they could switch my hours. They said "No." Instead they said I could drop the hours completely! Not the result I wanted, but I was becoming increasingly anxious about letting them down, so I agreed to the loss of a six hour shift (and six hours pay!) rather than fight them to move the shift.

Since then the business has suffered with some key staff members taking time out with various illnesses - mainly Team Leaders / Deputy Managers, and they've asked me no less than six times in the past month or two to deputise for their missing staff.

There are PROs and CONs of me doing this.

My standard role involves lots of standing (in one spot) for up to five hours (CON), or lots of heavy lifting (CON), or a mixture of the two (SEMI-PRO) - both activities play havoc with my pain levels.

The shifts where I deputise for the managers involve lots of delegating of the heavy tasks (PRO) and lots of walking around or sitting down (PRO) - basically I can take it as easy as I need to to control my pain levels. They also involve a lot more computer work and cash management - which can be stressful given my occasional 'brain fog' (CON) and there is the added responsibility of locking up the store at the end of the night (CON) they also pay me an extra £1 an hour (WOW! - SEMI-PRO!!)

My standard role shifts are no more than five and three quarter hours long (PRO)
My deputising shifts are NINE HOURS long (CON)

In December, when the store was at it's busiest, I was asked to deputise on two consecutive nights - Saturday and Sunday nights, our two busiest days throughout the year, but even more so in the run up to Christmas, I'd need to run the shifts between 14;00 and 23:15 on both days. I said "Yes!"

Big mistake! Whilst I completed both shifts without incident I hadn't banked on the consequences of two such mammoth shifts, back to back. The Monday after I had to call in sick because my pain spiralled out of control. I was off for a week and vowed never to agree to deputise again. However, the next week they asked me to do it again and guess what I said: "YES!" I know, I know, I'm an idiot!

HOWEVER - I told them I could only do it for my normal shift hours (MASSIVE PRO) meaning I didn't have to be at work until 17:30 (instead of 14:00) I can delegate all the heavy stuff, I can walk around or sit down (depending on how my pain is) and I run the shift my way - getting out on time. I can pace myself. There is the extra stress of cashing up five tills and locking up the store, but I can manage that, just about!

That's saying "Yes" on my terms. That's saying "Yes" whilst meaning "No" yet winning all the way - those extra £1's come in handy too!

How Do I Develop A Coping Strategy?

When my pain reaches a level where I feel like I might die from it - or sometimes wish I would die just to stop it - I find it very difficult to think positively about my condition. Anyone in constant pain for thirteen years must surely, eventually, come to terms with it and learn to live with it. Not necessarily 'cope' with it, but live with it.

I haven't. I want to alter the way I am. I want to reverse it, go back to the days when I wasn't in agony when someone touched me, the days when I could sit and watch TV comfortably, lift heavy gear at work, climb mountains, kayak in the lake district, because I miss those times so much. And that makes the pain worse.

So, how can I live my life going forward when I so badly mourn the loss of my pain-free life?

I don't have a strategy for this.

I need a strategy to help me move on. To make a new life with the added element of "this is gonna hurt, but you're gonna do it anyway and to the best of your limited ability." I already do this, to a certain extent, with my job.

At work I lift stuff I shouldn't. I know full well it's going to hurt later (as well as during the task in hand) but I plod on - cases of eight 2litre bottles of Coke, 10kg bags of flour, 10kg bags of kitty litter, 24 pack beer crates. It hurts, but I do it when I can because to not do it would be to admit defeat and give up working. There are times when my body just will not allow it of course, and my employers know this so they tolerate the days when this happens, but in the main I do as I'm asked. Despite what will follow and in spite of my condition. I do it to maintain some semblance of the life I once had.

Am I wrong to push myself like this? I don't know. I do know that there are men like me all over the world. Men who toil and push themselves, trying to break through the pain barrier in order to avoid admitting defeat. There are, I'm sure, some men out there who go through all of this agony without ever knowing that they have fibromyalgia because they think that is what a man should do, it's 'normal' for a man to do a hard day's work and come home exhausted and in pain. They shrug it off as 'just an age thing' and put off going to the doctors - I know I did, for a long time. When I eventually went to the doctor - he could find nothing wrong. No strains, sprains, pulls, tears, arthritis, rheumatics, cancers. NOTHING. So it's got to be just me getting old, right?

At thirty six?????

Eventually, when you've been through all of the examinations, pokings and proddings by 'specialists' and they have found nothing wrong to be causing you so much agony, they stick you in the fibro category, and they leave you there to rot.

"You have to learn to live with it." they say, to which your reply should be "Okay doc, I'll do just that. Where's the training room?"

There isn't one of course. There is however this wonderful resource called "The Internet" and that's where you should begin developing your strategy for learning to live with fibromyalgia. Read blogs by people with fibro. Join facebook, google+ and other social media to engage with others in chronic pain. The internet is the only resource for helping you to come to terms with, and live with, your condition.

You're not going to get that from your doctor.

Raising Awareness of Male Fibromyalgia with Imagery.

On Saturday I posted an image to the FibroMen Facebook page which seems to have struck a chord for so many people. It's something I've seen many times before in my online journey with fibromyalgia, images where people depict how they look and the same image 'bastardised' to show how they feel. I've shared these images a number of times in the past with no real, significant, interest. This one seems to have been a little more inspiring to some people.

As I write this, the original post has been seen by over 30,000 people and shared 364 times. Here is the image I posted:

It's a simple stock photo of some male model and it seems to have caused quite a stir, particularly among males with fibromyalgia. Many say it was a bad choice of image as it doesn't depict a 'real' man with fibro, many also stated that people with fibro 'don't work out' and so couldn't possibly look like the image on the left. 

Is that true? There are many layers of fibromyalgia. It affects us all in different ways, and there are some that say that the worst thing for it is inactivity. Indeed there are days when I feel like I could go back to my gym and do a few circuits - it is only the prospect of making the pain worse the next day that puts me off, but who knows, it might, over time, work to ease my pains. (I'm having trouble accepting that!)

Some of the detractors stated that an image showing a real sufferer would have worked better. 

I'm not so sure it would have had as much of an impact as an extremely healthy man being transformed into a pain-riddled wreck  - the difference is clear for all to see: "This is how I appear to the outside world - but if you could see my pain, this is what you would see!" 

I have to point out that the vast majority of males who commented on the image were positive about it - some even mused that they wished they actually looked like the image on the left (don't we all?) - but they got the message, they got the point of the post - do not judge what you cannot see, don't judge a book by it's cover, even fit and strong men are affected by fibromyalgia etc.

One thing I'm certain of is this: The image had exactly the reaction I would have wanted and, in creating a stir, it worked to increase awareness of fibromyalgia in men. It worked to get a discussion going - especially from female sufferers who, in the main, wanted it to be known that men suffer this debilitating illness too. Many stated that they thought their partners had fibro, but hadn't been diagnosed because they just put it down to "over-work" (it's a man thing!)

One should never underestimate the power of an image. Some images have the power to end wars and some have the power to start them, let's hope this image raises even more awareness of fibromyalgia in men. That is, after all, my whole reason for starting FibroMen in the first place!

Resolute for 2016.

On this, the penultimate day of the year, I took a good look at the posts in this blog and one word kept resonating in my head:

Misery.

And another:

Doom.

And another:

Depression.

FibroBlog is depressingly miserable and doom-laden.

So, in keeping with the tradition upheld at this time of year, I resolve to cheer up FibroBlog and make it the blog it was supposed to be - stories of success against adversity, news of research into treatments, medical breakthroughs and positivity!

It was quite obvious that the writer (me) was suffering from some sort of negativity implant.

You can get an update on how I'm feeling over at my personal blog My Fibro Blog, but from January FibroBlog will be about positivity and hope.

And to kick things off in a positive way here's a lovely picture of 2015 being crushed to death by 2016.  Happy New Year to all followers and visitors.

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.