I am terrible at saying "No."
Ask me to work a few hours extra at work: "Oh, okay then!"
Ask me to change the beds on a bad pain day: "Right, I'm on it!"
Ask me to help you dig up a tree stump: "Where's the spade?"
Ask
me to lend you some money: "Here, take my wallet!" (this is a lie - my
friends will tell you I'm tighter than a fish's chuff!!)
Get the
picture? Recognise this in yourself? Or are you one of those people who
can say "No" without hesitation? (If you are then we need to talk!)
I
recently cut my hours at work because I was scared of letting them down
when I had a flare of my crohn's / IBS symptoms. It was an early
morning start (05:45) with no way of calling in if I was ill, so I asked
them if they could switch my hours. They said "No." Instead they said I
could drop the hours completely! Not the result I wanted, but I was
becoming increasingly anxious about letting them down, so I agreed to
the loss of a six hour shift (and six hours pay!) rather than fight them
to move the shift.
Since then the business has suffered with
some key staff members taking time out with various illnesses - mainly
Team Leaders / Deputy Managers, and they've asked me no less than six
times in the past month or two to deputise for their missing staff.
There are PROs and CONs of me doing this.
My
standard role involves lots of standing (in one spot) for up to five
hours (CON), or lots of heavy lifting (CON), or a mixture of the two
(SEMI-PRO) - both activities play havoc with my pain levels.
The
shifts where I deputise for the managers involve lots of delegating of
the heavy tasks (PRO) and lots of walking around or sitting down (PRO) -
basically I can take it as easy as I need to to control my pain levels.
They also involve a lot more computer work and cash management - which
can be stressful given my occasional 'brain fog' (CON) and there is the
added responsibility of locking up the store at the end of the night
(CON) they also pay me an extra £1 an hour (WOW! - SEMI-PRO!!)
My standard role shifts are no more than five and three quarter hours long (PRO)
My deputising shifts are NINE HOURS long (CON)
In
December, when the store was at it's busiest, I was asked to deputise
on two consecutive nights - Saturday and Sunday nights, our two busiest
days throughout the year, but even more so in the run up to Christmas,
I'd need to run the shifts between 14;00 and 23:15 on both days. I said
"Yes!"
Big mistake! Whilst I completed both shifts without
incident I hadn't banked on the consequences of two such mammoth shifts,
back to back. The Monday after I had to call in sick because my pain
spiralled out of control. I was off for a week and vowed never to agree
to deputise again. However, the next week they asked me to do it again
and guess what I said: "YES!" I know, I know, I'm an idiot!
HOWEVER
- I told them I could only do it for my normal shift hours (MASSIVE
PRO) meaning I didn't have to be at work until 17:30 (instead of 14:00) I
can delegate all the heavy stuff, I can walk around or sit down
(depending on how my pain is) and I run the shift my way - getting out
on time. I can pace myself. There is the extra stress of cashing up five
tills and locking up the store, but I can manage that, just about!
That's
saying "Yes" on my terms. That's saying "Yes" whilst meaning "No" yet
winning all the way - those extra £1's come in handy too!
Thursday 28 January 2016
Saturday 16 January 2016
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.
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.
Sunday 3 January 2016
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!
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!
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