HELP I’VE BEEN DIAGNOSED WITH FIBROMYALGIA!

My life changed when I was diagnosed with Fibromyalgia. The sweats, the pain, the restless legs etc. etc. My social life changed, I’ve had to set alarms on my phone to remind me about medication, I have a lot more visits to the doctor and recently a chiropractor.

Those of you who know me or have read my previous blogs are either going, “oh crap not you too”, considering my partner has it or you’re just wondering what the hell I’m going on about.

Well, I suffer Fibromyalgia but I’m one of the lucky ones- I don’t have the pains and physical symptoms in my body.

What do I mean?

It’s very simple really. The day Scarlet was diagnosed with Fibro is the day OUR lives changed forever. (insert dramatic background music) I may not suffer the pain she suffers but if I could instead of her I would, but the other side effects and symptoms affect me due to the fact I’m (hopefully) being a supportive partner.

How so you may ask?

Well, let me answer the questions I have previously asked Fibro suffers. (Getting to the blog about those answers soon I hope.)

Questions:
Name: Logan
Sex: Male
Age: 37
Where do you live: Melbourne, Australia
When were you diagnosed: Mid 2012
Biggest emotional battle: Not spending lots of time with my partner and family as a family
Biggest change in your life since being diagnosed: Not doing as much as a family
Do you work? If so, what do you do and has Fibro impacted it in anyway: Carer for my partner
If you worked and had to leave due to Fibro, what did you do: Was doing office admin and left to be partner’s carer
One word that you associate with Fibro: EVIL
Briefly, please explain how your life has changed since being diagnosed: our relationship at the start (but it is, I believe, now stronger), social life, time with kids as a family and our family outings we use to do, sex life
(Now for those that answered those questions are most likely saying “but there were more”. Yes but they didn’t relate to me because they were related to pain and other physical symptoms mostly.)

Fibromyalgia doesn’t just affect those who have it but sadly it affects all those around them. Our children have suffered not having their mum being able to do things with them as easily as she used to be able to.

Some of the e-mails I received from my questions mentioned: partners leaving, partners having breakdowns, children not understanding.

Personally, my anger problem has gotten worse, my patience gets very low at times, my depression got worse. My relationship with Scarlett and my kids gets strained at times and I’m sure both Scarlett and myself, have at times, both thought we’d be better off without the other. Scarlett has a few times said she would understand if I wanted out as she didn’t think it was fair that this was the rest of my life. As I have numerous times told her, NO, NO, NO NO,NO!

We were both dealt this card. Just sadly she got the worst bit with the pain and the suffering. But I love her and I’m not going to let it come between us. Thankfully for all involved, Scarlett’s brother found something for me to do which gets me out of the house for a few hours that I strangely find therapeutic. This has certainly helped a lot with my mood.

So how do I handle all this? To be honest, I actually don’t know. There are days that I struggle, days that I’m sure I piss everyone off around me.

This is not a dig at those that do suffer Fibromyalgia, but please understand those that support you need some support back. Whilst you suffer more so, Fibro has an effect on those around you.

Honestly, if it wasn’t for the fact I love Scarlett more than life itself and my family means more to me than anything else in this world, I probably would of left months ago. Seeing my future wife go through the pain she does, breaks my heart – especially seeing as there is nothing I can do to make it all go away. It breaks my heart when DD3 gets upset because she doesn’t understand that mummy can’t do what she wants. The past 9 months have possibly been the most emotional I have suffered in my life and that includes my first marriage break up and the mental breakdown I suffered. I will survive though because I have the support of Scarlett and my family…

Peoples, I understand that you are suffering an illness that has no cure and it affects every person differently but you are not alone. This illness affects your loved ones as well and they also need emotional and physical support.

Help each other and you might find that you all cope a little bit better.

Logan Harris (fibro sufferer without the pain)

FIBROMYALGIA THE STAGE PLAY

You’re probably sitting there wondering what the hell I’m going on about with the title. Well just read on and hopefully you will understand.

On stage is, for the ease of no scene changes or the likes, a bedroom, plain and simple but for my partners sake we’ll say the bedding is bright pink. The roles are as follows:

Balance Problem – Fibromyalgia aka Scarlett
Brain Fogginess – Fibromyalgia aka Scarlett
Digestive Disorders – Fibromyalgia aka Scarlett
Fatigue – Fibromyalgia aka Scarlett
Flares – Fibromyalgia aka Scarlett
Headache/migraine – Fibromyalgia aka Scarlett
IBS – Fibromyalgia aka Scarlett
Itchy/burning Skin – Fibromyalgia aka Scarlett
Morning Stiffness – Fibromyalgia aka Scarlett
Muscle Cramping – Fibromyalgia aka Scarlett
Muscle Knots – Fibromyalgia aka Scarlett
Muscle Weakness – Fibromyalgia aka Scarlett
Pain all over – Fibromyalgia aka Scarlett
Restless Legs – Fibromyalgia aka Scarlett
Sleep Difficulties – Fibromyalgia aka Scarlett
Caring – Me
Consideration – Me
Loving – Me
Masseuse – Me
Patience – Me
Understanding – Me
CURE – Not cast as of yet

Yes, poor Scarlett, has to play many roles and sadly this is what comes with Fibro, but she does have one easy part in this play, she simply stays on the stage for the duration of the play, yes, I can hear you all saying if only that were real. Sadly, people with fibro also have to be parents, partners, employees, and so on and so on which obviously makes it harder for them but also the roles played by me (or significant other) all the more important.

My roles, mind you, involve mad dashing side stage to do quick costume changes and because of society and the fact males are always seemed to be not loving, the role of loving was cast as a woman so that costume change involves a dress, heels and padding out a bra, (no this doesn’t really happen in our house) oh and seeing as I’m bald we better throw in a wig for good measure.

So why a play you ask? Two reasons, my love of theatre and secondly because when you think about it, looking at the roles above are pretty much those that are played out in real life. The roles played by myself are just some of those needed when you love someone that suffers Fibro. I will be the first to admit that I have never ever been on the stage myself and that in this play I’m not very good at these roles. YET! The fact I love my partner more than anything in this world is reason enough that I’m going to keep working my butt off to perfect these roles into “Tony Award” winning roles.

Sadly there is a problem to this play that the writer (read Odin) didn’t think of. Due to the fact he stupidly forgot to cast the role of CURE, it’s not a very short play. In fact some people won’t even stay till the end because it’s not a simple case of two one hour acts. It goes on for a bloody lifetime. People (read friends) get impatient and bored and will walk out, partners (the roles in this version played by me) get sick of the role and leave the production. Critics (read doctors) think it’s the worst play ever and refuse to acknowledge that it is even a real play.

But I digress, the starring role, Fibromyalgia, plays its part perfectly as the villain and is hated by all, especially by the cast member playing that role. They have to endure, all the various roles as described above, fellow cast members not being very good at their role and sometimes walking out, friends and family (the audience) being totally uneducated in the aspects of plays (read the disease).

I’m not big noting myself here but, my roles aren’t easy either and sometimes those playing that role need support as well. I will assume (and this is probably a fair assumption) that those in the supporting roles (partners, family, kids) have never acted before and may find it hard. From my own experience the roles of Patience and Understanding are two of the hardest roles to play.

How does one prepare for such a role? Simple, research, research, research. Research Fibromyalgia. Sadly those playing the supporting cast will never fully understand the role of Fibromyalgia but with work on your own role you can help the person playing Fibromyalgia. It’s not called a supporting role for nothing you know, the name kind of gives it away “SUPPORTING ROLE”.

So how does the play, play out. Well one of the problems I face with this multiple role is that Caring, Understanding and Patience are really needed on stage through the entire play, kind of like a “Two Face” character from Batman, just in this case call me “Three Face”. Ugh, the visual image isn’t pretty. Oh and let’s be honest, me in heels, a dress and a wig in the role of Loving is scary and I’ll be honest I’m not very good at it. One day I’ll perfect the art of walking in heels. (not).

The other hard thing when playing these supporting roles is the script really doesn’t tell you when any of the Fibromyalgia roles are on stage which means those character changes for me have to be very quick which at the moment I really suck at but they say practice makes perfect.

Those in the supporting roles will get frustrated with the fact Fibromyalgia doesn’t care about times, surroundings, happenings and so forth it just decides to rear its ugly head. Personally, try to perfect your roles of Understanding and Patience. The rest can be worked on over time. I simply ask that if you find your supporting role hard, ask for support yourself, don’t just walk out mid production. You get to take a break from your role sometimes i.e. go off to work, sleep… but the role of Fibromyalgia is a constant role and they don’t get a break from it. Sadly when Odin wrote this play he also forgot to put in acts and an intermission, it’s just one long bloody play which I for one am willing to act out till the end of time, or until Odin decides to do a rewrite and add in the part of CURE which would be a brilliant finale so the curtain could come down on the play for ever.

Logan Harris (hopeful nominee for the best supporting actor EVER)

FIBROMYALGIA!

FIBROMYALGIA!!! Is it real?
Yes. Yes it is.
http://en.wikipedia.org/wiki/Fibromyalgia

My partner has been diagnosed with Fibro and at first she said the doctor was full of shit. Well, since then she has changed her tune as many things about it make sense to her after doing some researching into it more.

Now, I have been accused by my partner (and with good reason) of not believing she had it and thinking it was all just excuses – yada, yada, yada, blah, blah, blah. Well, in my defence, it was never a case of me thinking it wasn’t real or that she didn’t have it. It was my lack of understanding.

Do I understand it now? Hell no, and before you all yell at me and tell me I should, let me explain.

I don’t fully understand it but I’m learning.
Does Scarlett know all about it? Personally I don’t believe so.
She has joined many groups on Facebook set-up as support groups for those suffering from Fibro and she has made many friends through those groups but the thing I noticed most when she joined these groups is how much more she learned about it.

From what I do know and what I have read and heard, I honestly don’t believe anyone knows everything about it and to be honest I don’t think anyone will.

This doesn’t mean that us as partners, friends and family of those diagnosed with it should just push it aside. We should learn more about it.

How you ask? Well, it’s very simple.

Hello people, we live in the world of the internet, look on-line, ‘internet it’ (something my BIL said once instead of “Google it”), speak to your loved one who has it and get them to explain it from their point of view and how it effects them.

This is something that affects 2-4% of the population.

Ha, I hear you say that’s not much.

Well, people, there is more than 7 billion people in the world which means there is between 140 – 280 million people with Fibro. Russia, has a population of about 145 million so when you think of it like that, all I can say is not suitable for this blog.

Fibro can even cause relationship/marriages to fall apart. I can only assume this is due to the lack of understanding by the partner who doesn’t suffer Fibro. Hell, I’m sure I was even one of them but the fact is I love my partner too much to let something like this ruin us and I’m trying to understand things more.

I watch my partner suffer pain, fatigue, fogginess, weakness and differing levels of depression and anxiety daily, some days are good and you wouldn’t think there is anything wrong with her, some days though – she struggles to get out of bed. I cannot even begin to imagine the mental turmoil this places on a person. My partner being the person she is loves being a mother and spending time with all her kids and I do know that it tears her up inside when she can’t because of the pain she is in. She is not able to go out and have a social life like she used to. Dates for us can sometimes only be confirmed on the day.

People, I only ask for a few simple things of you.

If you know of someone who suffers Fibro learn about it and support them.

It can cause not just physical pain but mental pain due to the fact that the person suffering Fibro doesn’t get the support from loved ones.

Logan Harris (supportive partner of a fibro sufferer)