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 )

Do You Want to be in a Book About Fibromyalgia?

We've been approached by author Cris Williams to help her source respondents for a new book she is currently writing which will seek to raise awareness of chronic pain conditions - fibro, IBS and so on - and get the message out there about how it affects each and every one of us.

The writer is looking for responses from anyone touched by Fibromyalgia - male and female patients, carers, partners, children and even doctors - to enable her to write from all perspectives.

If you're interested, or know of someone who might be willing to complete a short(ish) questionnaire, please email voices4chronicpain@gmail.com in the first instance.

For my part I have already received the questionnaire and it looks relatively straightforward from a patient's perspective - how it affects my day to day activities, how I feel about the illness etc etc.

I have also roped in my long suffering wife and her questionnaire from a partner's perspective is equally straightforward!

The questionnaires can be completed in your own time and total anonymity is guaranteed if you wish it. (Never one to shy away from these things I'm having my name in huge letters across anything used in the published tome!! - after all we must all play our part in raising awareness of this hideous condition!!)

So, please, step up, email the writer and get your, your partners, carers, childrens voices heard.

Email voices4chronicpain@gmail.com

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. 

Your Stories - Paul in Southampton, UK

In two weeks a milestone will have been achieved. On 2nd July it will not only be my 43rd Birthday but also the 1 year anniversary of the last day I was able to work. It is something I'm not proud of at all and to be honest I had no idea it would have affected me this much.

I started to become unwell in January 2014. It started with a headache which progressively got worse and never went away. The headache affected my vision and I had an adverse reaction to bright lights. Then I noticed my knees were painful. Again the pain increased much like the headaches.

After several attempts to get help from my GP who was dismissive I sought a 2nd opinion and saw a different GP, who after the initial examination introduced me to the world of Fibromyalgia. It was only because of her belief in me and the symptoms tests were done to exclude other health issues and eventually I saw a Rheumatologist who diagnosed ME in August 2014.

Luckily for me the GP had started treating me for ME or Fibromyalgia on the first day I saw her. Various medications were tried, tested and rejected because of adverse side effects.

While this was all going on I was still working full time. I had 3 weeks off in May as the pain was just too much. From that point on, work became a place of disharmony. My Directors and Store Manager made life very difficult, even to the point where they suggested I resign and re-apply for a part time job!!!

Before being ill my career was progressing very well and I had the full backing and support of my Directors and Store Manager in evolving my career into a Regional Training Manager. Sadly that support stopped the day I returned to work after having 3 weeks off sick.

Dealing with a massive change in life is hard enough, to have no support from your employer and in fact for them to make life even harder was really tough to handle. Life became a battle, not only to get the best help I could while dealing with a horrible illness, but also to stand up for my employment rights against a Global company who refused any help from HR and who rejected any form of communication was devastating. Despite many attempts from me to try and find common ground their only answer and direction they wanted to go in was the end of my employment with them.

It still plays on my mind from time to time and this 1st year anniversary has stirred it up again.

In November 2014 I started stuttering and losing my words, by mid January it was all I could do to string a few words together. My GP and consultant were both concerned and started talking about a stroke!!! I was horrified, I didn’t feel like I had a stroke, but what would that feel like?

In March 2015 after playing around with the medication and all the ups and downs that go along with it my GP and Consultant eventually decided to stop the Gaberpentine. I was reluctant as I had been on it since May 2014 and it was the only medication I felt provided benefit. By this time I would have been on Gaberpentine for almost a year. I started to reduce it day by day and once I was clear of it my speech returned very quickly.

I had been on a concoction of over 30 tablets a day plus a 52.5mcg per hour morphine patch and nothing was helping.

After the success of coming off the Gaberpentine and not only my speech returning, but also my concentration and memory improved. I, with the consent of my GP, reduced all my other medication and stopped most of it all together. It was so liberating. YES, the pain increased, but I was me again. I started to laugh and smile. As the effects of the pain killers left me I became more and more like my old self. Clarity was returning to my life. With the help of my GP and consultant I was only on paracetamol and a Morphine patch. I had stopped all the sleeping tablets and started to sleep when my body told me to, this was against the instructions of my GP, but I made a conscientious decision to listen to my body.

My sleep pattern is all over the place. I have a few hours sleep from 11pm onwards and then up again approximately 2am until 6 or 7am and then sleep again for a few more hours until about 10am. It works for me and I feel so much happier for it.

In late May2015 I made myself a promise that I would never return to the zombie who was moody, unresponsive almost synthetic as the tablets and medications robbed me of any sense of real human emotions and feelings. I choose increased pain and to be me, a fuller person.

I embraced parts of my life I had ignored for many years. I am a creative person, right to the core of who I am. I had ignored that part of my life while trying to conform to the corporate needs of the employers I worked for. Many times in my professional life I was told I was a square peg in a round hole. No longer would that be the case.

While I am deeply upset and a little angry I have lost my job because of this horrible illness, and yes this 1 year anniversary of my last working day is upsetting, I have to remember what this illness has done for me. Not only am I creative I am also inherently optimistic, so with that in mind I now use my creativity as a form of therapy.

Every day is a day for creativity, be it writing, sketching, drawing, painting, crafting, stitching or doodling. This illness has afforded me the opportunity to embrace a part of my life, a part of who I am and run with it. I have submerged myself into being as creative as the illness allows. It is wonderful to reconnect to something I had ignored for so long. I wonder if by ignoring something so strong within me was not part of the cause of the illness in the first place. Should I have been climbing the corporate ladder in the first place?

The journey over the last 19 months has been fraught, emotionally draining and dam right depressing, but and it is a big BUT, I have got through it and over the last couple of months started to build a new chapter of my life accepting the limitations of the M.E and Fibromyalgia while still trying to forge ahead in a far more creative, soul enhancing way.

From a very young age I was always fiercely independent. Not being able to work and subsequently losing my job was deeply upsetting as my independence had been taken away. Thankfully I have a remarkable partner who has stood by me through this and who has had to endure the very dark places I went to when on all the medications.

I am lucky they have had the strength of character to visit those places and journey with me. It is only now, now I feel my mojo is returning and with everything I create another brick is being laid in the foundation of a better future. That better future encompasses everything I possibly should have been in the past and because of that we can start to plan our future together and get back on track.

Writing this has been so cathartic. I was so angry when I started writing it, but now I feel uplifted and thankful that I now have a freedom to explore a whole new future which includes the pain and fatigue of a horrible illness, but an illness that no longer defines me. I feel I am starting to reach a place of harmony with it. Yes I still have bad days where I can hardly get out of bed, but those days are wonderful for letting my imagination explore new thoughts and ideas for projects. I hope the future brings compromise between the health issues on my ongoing creativity.

Have my fellow sufferers been suppressing something in their lives that really should be acknowledged? I believe part of my illness is due to the continual dampening down of an inner me who was always trying to express themselves. It would be interesting to know how many make that same connection. 

Why not share your fibromyalgia journey - CLICK HERE