Telling Tales - A Cry For Help!

I've been writing about my fibromyalgia journey for a few years now and I'm pretty sure that most of my readers are fully up to speed with how my fibro affects me on a day to day basis. I write about it to help in my personal crusade to raise awareness of the fact that men get fibro too - I'm also pretty sure that that fact is now well known in the chronic illness community and it is getting out to the wider community too - even some doctors believe it!!

At the moment I am in the middle of a major flare - which is why you haven't seen me posting very much in recent days on social media etc. I'm sorry about that as I do like to promote FibroMen as often as I can. The truth is I am depressed and my depression is making me extremely tired, so when I'm not at work I have to rest. I'm sure you understand and can empathise with that.

So, I'm throwing open the doors to allow others to 'fill-in' for me whilst I'm resting.

I operate another site called "My-Fibro-My-Algia" - and, as you can imagine from the title, it's about fibromyalgia and other chronic pain conditions - not just in men, but in everyone! The aim of the site is to get people talking about their condition - sharing their journey of hope over adversity with chronic pain conditions. The ultimate goal of the site is raising awareness but it is hoped that visitors will learn more about their own conditions through positive stories by real sufferers. They don't all have to be positive of course - your story might be one similar to mine, where you're currently in a bad place. We don't want to pull any punches. Living with a chronic pain condition is difficult at best and downright unbearable when things get really bad. We want our readers to understand this - especially the newly diagnosed who might be struggling to come to terms with their diagnosis - there are going to be good days and bad days, as with everything in life, but our message will be "You are not alone."

The site is in need of some content - and that is where you come in. Please take the pressure off me for a while and help me by writing a short piece about your "Journey So Far" with your condition. You can write about getting a diagnosis, what your life was like before and after diagnosis, treatments that failed, treatments that worked, alternative therapies, exercising, voodoo, devil worship, witches covens, witch doctors - literally anything that you have been through on your journey with your chronic pain condition.

By sharing your story you'll be doing three things:

• HELPING TO RAISE AWARENESS

• INSPIRING HOPE IN THOSE NEWLY DIAGNOSED OR STRUGGLING TO COME TO TERMS WITH A DIAGNOSIS

• HELPING ME TO GET OVER THIS FLARE AND DEPRESSION BY RESTING 

(I can manage the cutting and pasting to share your stories though!!)

So, if you're interested, and have the time, I'd appreciate any help I can get to get more content on the site.

You can share your story HERE.

Thank you. I'm off back to bed - when I wake I hope to have an inbox full of your stories!!

(Shared with Chronic Friday Linkup and Chronic Illness Bloggers )

Being Overwhelmed

Overwhelmed is a word I used to associate with joy - "I'm overwhelmed to meet you!", "Your beauty overwhelms me!" I've never thought of it in the context of being overwhelmed by an illness. But that's how I've been feeling for a while now.

My illness is overwhelming me. I feel like it's beginning to become me, to define who I am, and I don't like it one bit.

I'm determined to not let fibromyalgia become me. Like some creeping algae slowly enveloping me in its insidious green slime. So far it's taken over so many aspects of my life - work, social, family. 

There's so much of the life I once knew that is now stagnated by fibromyalgia. I'm no longer able to plan anything with any certainty, family outings have to be decided on the day and can end abruptly half way through an activity, work has been reduced to just 16 hours a week - and still I have to call in sick some days, and my social life ended about four years ago.

Accepting you have an illness and accepting the limitations that illness places upon you is one thing, but allowing the illness to define who you are is an entirely different kettle of fish, and it's something I don't want on my epitaph - "Here Lies That Guy with Fibro."

I suppose I'm going to have to get myself a new mindset to accomplish this feat. I definitely need a shot of positivity to begin with, so I'm throwing this out there to ask:

"How do you keep yourself from being overwhelmed by your illness?"

"How do you stop yourself from becoming your illness?

 Answers on a postcard to.... or you can just post a comment!

All suggestions will be considered seriously.

   

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!

Fibromyalgia and Depression

Having an invisible illness seems to lead to other invisible illnesses.

I have fibromyalgia. I also have IBS / Crohn's Disease. As my fibromyalgia was diagnosed first I assume that the anxiety and stress that placed on me, both at home and in my work, led to the turmoil in my guts. And it's been that way ever since.

Almost thirteen years have passed since I was first diagnosed with fibromyalgia and, in that time, I cannot remember a day when I didn't have symptoms from it. Of course it ranged from mild to moderate, moderate to severe, but always there. After four years of constant pain I eventually began to experience symptoms of IBS which, I assumed, were related to the lower back pain and I instantly thought I had cancer. After many weeks of putting it off I eventually went to see my GP and after a few more tests I was diagnosed as having Crohn's Disease an incurable inflammatory bowel disease. Oddly all tests since initial diagnosis have shown no inflammation so my gastroenterologist has 'downgraded' my condition to Irritable Bowel Syndrome - but it affects me no less because of this downgrading!

So, having lived with chronic pain for almost thirteen years and bowel disturbances for the past eight and a half years, I thought I'd had my quota of 'invisible' illnesses but it appears that I was wrong. For the Gods have decided to test me, yet again, to see how I cope with another layer of invisibility.

This new invisible illness came out of nowhere - as did the other two - but rather than hit me with symptoms all of a sudden - fine one minute, stricken the next - this cloak of invisibility crept up on me over a period of about two weeks. I'm talking about depression.

Obviously, when you live with chronic pain 24/7 for 365 days a year you're going to have times when you feel a little down and fed up with yourself. I've experienced times like that before but I've always snapped out of it fairly quickly and resumed as "normal" a life as I could under the circumstances.

But this depression has gone much deeper than my previous bouts of 'fed-uppedness' (if that's a word?) This depression has really knocked me for six. This depression has been the most invisible of all of my invisible illnesses - with fibro and IBS my family and work colleagues can see me physically wincing with pain or running off to the loo or holding my guts - sometimes they can hear my symptoms too, so as far as invisibility goes they're somewhat apparent to the outside world.

Depression is a whole new ball of wax. Externally there is nothing to see. I laugh at funny TV shows, I act the fool and joke around at home and make pleasantries with my customers and colleagues at work. My face and body show no outward signs of being ill.

In my head I want to explode. I want to shout at people who annoy me - the ignorant customers who don't say please and thank you when I have to fawn over them like they were royalty, the stupid ones who change their mind halfway through a transaction or wander off to get something else leaving me with a growing queue. I want to curl up into a little ball and hide away instead of facing these people. At home I join in because I have an obligation to do so, not always because I want to. I'm short tempered with the ones I love most and I hate myself even more because of it - and so it builds up and up and up until, one day, I know it surely must explode. Yet all the time I fight it so that, externally, my face looks 'real' and 'normal' just as I've tried to hide my chronic pain and gut turbulence for so many years. I try to be a valued member of society but I value myself less and less each day - I feel unworthy of praise, of love, of life itself. Things I love to do are being abandoned - art, drawing, photography, cooking for my family all feel like the most arduous of chores now whereas, six weeks ago, they were my life.

Depression is the most heinous of invisible diseases because there isn't a scrap of evidence of its existence. It's all in my head. I should snap out of it. I should think positively. It could be worse. I could be paraplegic - all the things we're told never to say to someone with depression I've told them to myself over and over again - and it's right they are definitely the wrong things to say to someone with depression because I can't snap out of it, or think positively and it couldn't be worse (surely) and I'm sure most paraplegics feel the joy of life sometimes and I know it's all in my head because it's a mental illness, to do with the brain, which is found, in most people, in the head!

I have not, as yet sought treatment for this depression, prefering to try and fight it myself - but I think I'm losing the battle. My reasons for not seeking treatment are that my GP thinks I'm a malingerer already and I'm worried about the side effects any medication might have on my already feeble guts. I know in my heart what I need to do - I've told many people in my position in the past to get treatment as soon as possible so I'm going to have to bite the bullet........ before I take a bullet.