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.

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.

Your Stories - Fibro From a Partner's Perspective (Guest Post)

Fibromyalgia. It's a very difficult illness to deal with. I can say that in all honesty as I know the pain of fibromyalgia and all of the misery and suffering it, and its associated conditions, can bring. 

There are so many blogs about fibro, mine included, that are written by, and therefore from the perspective of, fibro sufferers. But what is it like to be a partner or carer of a fibromyalgia patient?

It's refreshing to find a blog that shares the story from a partner / carer's point of view. This is Tim Clevinger's story:

FIBROMYALGIA - It Affects Men Too - AS SEEN BY A HUSBAND / CARER -
 
"In February of 2006, we had our first child, Gabriel. My wife had to have an emergency induction, and he was born four weeks early. I knew this procedure would have a physical effect on her, but what came next, I knew would have longer lasting repercussions. We became pregnant with our second child six short months after Gabriel’s birth. 

The stress of having two young children within fifteen months was difficult to bear at times. We were brand new parents to one child, and before we could even grasp parenting, we had a second child. 

At first I thought stress and sleep deprivation was causing her pain. I always assumed that time would heal, and she would return to be the active, stress-free person I grew to know and love. This was not the case. She was getting worse with no clear cause. 

Needless to say, it was an emotional time for us. She would have regular doctor’s appointments and they all told us the same thing, “Time will heal. Take medication.” This wasn’t an appropriate solution. She only had the option to take some over-the-counter medicine and rest which only subdued the pain, not relieve it.

Before long, we had our third and fourth children. I think the last pregnancy is what triggered her in a downward spiral. It wasn’t only just the pain that was taking its toll; it was also mood swings and depression. So many days I would come home from work to find her crying upstairs in our bedroom because of the pain. All I could do was hold her and reassure her. 

I couldn’t empathize with her pain. She resented me for that. What could I do? I felt helpless. I hated it. The person I love most in this world was being attacked and there was nothing I could do about it. 

The strongest person I’ve ever known is crying to me for help. Many nights I would cry while she slept; praying to a God I’m not sure exists in the hopes that someone or something will hear me. She does not know this until now.

I tried, and still try to help around the house more, and help out where I can. I like to think that my efforts make a difference, but her constant painful cringes and crying tell me otherwise.

In December 2012 she found a doctor that solidified the notion that this in fact was a condition. Finally!!! Now we have a plan, and we have a means of controlling it. Unfortunately there is no cure for chronic pain and fibromyalgia. I wish I could take the pain from her.

I know she’s strong enough to fight for her well-being. She can now take part in physical therapy, and she is always finding natural remedies and ways to manage her pain. 

The person she is today is a complete 180 from the person she was a year ago. Her mood swings are non-existent, and her depression is manageable. I know that if she can fight through this, then I can fight with her. I will never truly understand her pain. Helping her, and supporting her is the best that I can do. I can only hope that others that suffer with this physical affliction can find their strength. Every day my wife impresses me, and every day I admire and love her that much more for her strength."

So, you see, fibromyalgia affects everyone and sometimes it's very difficult for us patients to fully understand what our partners are going through, especially when all we can focus on is our own pain.

This "Your Stories" feature is reproduced with kind permission from an orginal post by Brandi Clevinger on her blog Being Fibro Mom  and was also shared as part of FibroFiday at Fibro Blogger Directory
If you care for a fibromyalgia sufferer you can share your perspective too - just click here.