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.

   

Are You A 'Loner' or A 'Sharer'?

When you live with any chronic condition there are highs and lows. For me the highs are when my pain is at a manageable level and I can get on with the things I want to do, whether it's mending something in the house, doing a bit of art, blogging or just trawling the internet for a couple of hours. 

These activities provide me with a bit of 'me' time, when I can escape the rigours of family life with only mild pain and life is good. Another 'high' for me is spending time with my wife and daughter - trips to the park or the local museum for my daughter and me, and days out as a family (usually involving shopping - which I abhor, but put up with for the sake of family unity!) as well as cosy nights in front of the TV. These are the things I enjoy during the 'highs'.

But doing these activities during the 'lows', when my pain is riding high,  I find depressing. It's because I'm unable to enjoy them as I normally would. I get that. Because I can't sit still to draw or watch TV, I can't walk (far) without severe pain and I can't focus on anything but the pain. It's depressing for me because I feel I'm letting my family down. It is during the 'lows' that I find myself wishing for solitude.

I'm not really nice to be around when I'm in agony. I do try, really try, not to let it affect my family, but I fail, really fail, at hiding the fact I'm in a 'low'. I don't think my family would, or should, want to be around me - so I pray to be alone. However, I rarely am alone and this makes me depressed - especially if I wake in a 'low' on a day we had planned to do something and we have to cancel - because of me, it's my fault, I'm depriving them of their fun, if it wasn't for me they'd be able to get on with it - that sort of depressed, that sort of feeling of 'if I was alone I wouldn't be letting anybody down.' 

So I've reached the conclusion that, essentially, and because I'm in unmanageable pain for probably 75% of the time, I am a 'Loner.' I hate 'sharing' the 75% of my life.

My wife is the opposite. My wife hates to be alone when she's suffering with her ME. She loves to share her pain and fatigue symptoms with us and explain how she's feeling at every given opportunity. I find that odd and, at times, profoundly irritating and yet it is also endearing and intriguing. Being polar opposites I find makes me want to be more like her. I could never go in to as much detail about my level of pain with her as she does about hers to me but, sometimes, I wish I could unburden myself like that. Case in point: I hold back on everything I'm feeling when talking to my GP - and because of my reticence to share the finer details, he is confused about how best to treat me and I no sooner sit down in front of him than I'm walking out of the door. My wife's appointments last a minimum of fifteen minutes. My wife definitely likes to 'Share' it all!!

So, what about you? Are you a 'Loner' or a 'Sharer'?

(This post was originally shared at MyFibroBlog)
  

Pills and Potions Not Working - Help Required.

I'm currently taking 600mg of Lyrica (Pregabalin) per day as well as 8 cocodamol 30/500mg tablets.

My hip and lower back pain is getting worse.

Obviously the pills aint working, but I'm sick of pestering my doctor, and I can't use the TENS machine 24/7.

Having a really bad time! Will I ever find a medication that actually works without giving me horrendous side-effects??

What works for you?