So Sick of My Hat of Many Rocks.

Banging My Head on a Brick Wall

I've been relatively quiet of late for fear of boring readers with all that ails me, but I just feel the need to vent my spleen one last time before undergoing a transformation (hopefully.)

I have had pain, ranging from excruciating to agony to severe to livable, twenty four hours a day, three hundred and sixty five/six days, for over thirteen years. Can you imagine that? If not try to imagine the pain you might feel if you were to wear a hat with a bunch of two pound sharp rocks dangling from it on varying lengths of rope - all strategically placed to bash into various points in your back, neck, shoulders, thighs, guts, knees, ankles, feet, arms, hands, wrists, fingers and toes as you move around - some days individually, some days all together at the same time but at different intensities - some pounding into you, others niggling, others constantly embedded on a pressure point. Now imagine trying to function normally with all those rocks hitting you throughout the day, then imagine going to bed physically beaten and exhausted but being unable to sleep soundly because you're still wearing your rock hat and, no matter how you position yourself, there's a rock digging into you somewhere on your body. Just imagine that hat, and while you're imagining that hat imagine also being bombarded by an additional, bigger and sharper rock straight into your stomach and intestines causing them to cramp, become sore and irritated and giving you horrendous diarrhoea, nausea, painful trapped wind, bloating, constipation. Imagine having to live with those rocks for just a short period - say, a month. Do you think you might go a little off the rails? Become depressed, anxious? You'd kill for a cure wouldn't you? Well. that's me for the past thirteen years. I'm not saying it's that intense every day but I kid you not when I say that I've been getting pounded by at least one of those rocks every day for thirteen years - sometimes the niggling ones, sometimes the two pound sharpies!

I've tried virtually every treatment known to man, have undergone more invasive tests than any person should have to endure, have taken pills and potions, tablets and lotions, with infinite hope and ultimate despair. I have had enough.

I don't want pity. God knows there are so many more people who've lived with it longer than me and who have it even worse than me - at least I can still work, albeit part time.

The time has come for a different approach. I have signed up to do something radical in a last ditch attempt to overcome fibromyalgia, crohn's disease / IBS, insomnia, anxiety and depression. I'll be writing more about this new radical approach in the coming weeks. It is going to take a monumental personal effort - and, no doubt, it's going to be unpleasant for a while, but I have to see it through to the end or fibromyalgia will be the end of me.

Hopefully I'll soon be able to remove my hat of many rocks. Wish me luck!!

Taking the Rough with The Rough.

I had a colleague come up to me at work the other day and say "You look rough!"

I was shocked. Struck dumb by the fact that someone had noticed I looked ill. Usually people tell me how well I look! I had no response to give her except my stock response of "Oh, I'm not so bad!" Nothing could be further from the truth. On top of my daily struggle with persistent lower back and hip pain, IBS and toe pain (yes, toe pain - new one on me!!) I seem to have contracted the dreaded influenza that has been doing the rounds for the past few weeks. Everyone at work has had it, my wife actually collapsed whilst serving a customer last week because of it, my daughter got it late last week and now it's found me.

When I get struck by flu (or even just a mild cold) it magnifies all of my other symptoms. My famously disreputable bowels become even more disreputable, my chronic pain - which is welded at six or seven, somehow unwelds itself and hikes it's way up to an eight or nine, add to that a sprinking of nasal congestion tasting like one of my bowel movements, shivers, being boiling hot and then freezing cold, sweating, headache, blocked nose, runny nose, sore throat and a raucous chesty cough and you have the perfect recipe for feeling really, really ill!!.

Being acutely ill whilst at the same time battling being chronically ill is what really makes a rough life rougher - but it has its benefits. Most notable of which is actually looking ill.

Saying "Yes" But Meaning "No" - Yet Winning!!

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!

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.

Being A Fibro Dad at Christmas

Christmas is a wonderful time of year. A time for living, a time for believing, a time for trusting, not deceiving, love and laughter and joy ever after, ours for the taking,..... ahem! sorry, slipped into Cliff Richard mode there, but Christmas is definitely a great occasion best spent with family and friends. Great nights in, great nights out, fun, laughter and yes, joy ever after. (Cliff was so right!)

But what's Christmas like when you're in constant pain?

I've spent thirteen Christmasses in varying degrees of agony. Christmas 2002 was spent looking after my heavily pregnant wife - pushing her around town in a wheelchair because the baby had decided to settle on a nerve somehow. A year later and I'd been diagnosed with fibromyalgia, a condition which I didn't fully appreciate at the time. Nor did I have time to. A new baby to care for, a wife with post natal depression and anxiety to care for, a house to look after and a full time job, there was no time to think about what I was doing to myself. 

I started coming down with every condition known to mankind - flu, bronchitis, cold after cold, stomach disturbances, and pain. So much pain. My back was the worst, lower to middle, aching constantly, but I fought on and each Christmas I stood at the oven cooking the family feast. No matter how much pain I was in. I'll be doing so this year too. My wife and I promised ourselves that we'd book somewhere for this Christmas but her mother wouldn't hear of it, so  it'll be just as it always is.

Don't get me wrong, I enjoy Christmas, and I love cooking the meal, but once in a while I'd like to give my body a rest from it. Thankfully we don't have a massive family descending upon us each year - but, sometimes, it would be nice to, so that we could go to them!

Also, since 2003 we've had our little bundle of joy to entertain and excite in the run up to the big day. A a father I was suddenly expected to not only cook the Christmas dinner but also unpack and assemble the latest fad-toy - Disney Princess houses, fairy coaches, Barbie cars, kitchens, Littlest Pet Shop villages, Play Mobil schools and villages and cafe's, Moshi-Monster tree houses - all of which seem to have been packaged in high security metal twists and impregnable duct tape, with no prospect of speedy opening or the "Easy assembly" promised on the box! It's difficult enough for a fully able bodied person to fathom these things out. Manufacturers obviously conclude that because you're buying for a child, you're young enough and fit enough to unpack and build their items - they don't think of the less able bodied.  

Thankfully, this year it's fashion and make-up and Hunger Games Mockingjay stuff so there'll be no assembling (fingers firmly crossed) and Emily is at an age to understand that I'm no longer Superman. Imagine telling an excited little girl that she can't play with her new toys until Daddy has the strength to assemble them? It never happened. I pushed through the pain to complete the task, and paid for it later. But it was all worth it in the end and we have some very happy memories to look back on - my only regret is that I don't know how much better it could have been had I not been in agony for most of it.

How do you cope with Christmas? Do you push through and suffer the consequences later, or do you hide yourself away until it's all over? 

Try The N:rem Sleep System - FOR FREE.

I've written recently about the fantastic benefits of a good night's sleep - something I hadn't had for most of my life, and certainly not since I was diagnosed with fibromyalgia some thirteen years ago - and how I was offered the chance to partake in a free trial of the N:rem Comfort mattress topper. (Read my review here)

Usually there is a £10 fee to undertake a trial - but those wonderful people at N:rem Sleep Systems have given me TEN FREE TRIALS to give away to the first ten people to respond.

You will receive a selection of 5 foam comfort tablets to try on your current mattress, with a choice of set up so you receive maximum comfort and support. Simply choose the combination that is right for you and arrange the foam tablets you receive under your bottom sheet. If you’re not sure what your best set up will be, a member of the N:rem team is on the other end of the phone to offer expert set up advice and answer any questions you may have.Places are limited to just ten free trials and the trial will run on a first come first served basis.

After the trial period your toppers will be collected from you and there is absolutely no obligation to buy - but, after you've found your most comfortable night's sleep ever, I think you'll want to own a mattress or comfort topper from the N:rem range.

All you have to do is be one of the first ten people to complete the form on our website - here's the link:

FREE SLEEP TRIAL

Please be aware that this is a trial of the N:rem Comfort Topper system - the foam tablets you receive are a simplified version of the actual toppers for sale through the N:rem Site. You will not own the trial tablets and they will be collected from you when your trial is over. THE FREE TRIAL IS AVAILABLE TO UK RESIDENTS ONLY. We will only accept entries using the form on the FREE SLEEP TRIAL link above, all other entries will be deleted.

Only the first ten respondents will be allowed a free trial and there is a one per household rule. Duplicate entries will be removed. If you submit an entry and get the message "Sorry, we have allocated all of our free trials" it means that you have missed out on this occasion.

Please also be aware that, as a trial, you will not own the goods supplied to you and you MUST return them when collection is arranged. If you fail to give up the tablets you will be charged for the full cost of the five tablets - currently £20 per tablet plus packaging and delivery costs.

N:rem Sleep System - My Sleep Aid Trial Review

PLEASE NOTE: THIS IS NOT A "PAID FOR" REVIEW. The thoughts and experiences outlined in this product review are an accurate and genuine reflection of my experience using the N:rem Sleep System and have not been influenced in any way.

Like many sufferers of fibromyalgia I haven't had a really good night's sleep for many, many years. Even before I was diagnosed my fitful sleep would annoy my wife and keep her awake - which resulted in lots of odd bruises on my shins and arms! My wife described sleeping with me as "like sleeping with someone in the throes of a never ending epilectic seizure!"

It got so bad that most nights saw me banished to the spare bed where I could thrash and gurgle and snore and talk and shout and kick and moan to my hearts content. But of course I wasn't content and sleeping like that certainly took it's toll on my health and my marriage.

In the early days it was simply a matter of me being unaware of what I did in my sleep - I don't remember doing any of the things my wife told me I did -  but I do remember how incredibly tired I was, even after a full night's sleep - which for me meant about five or six hours, max. More recently it hasn't simply been the things I do in my sleep, I've had the extra burden of chronic pain keeping me from getting to sleep or waking me during the night, all of which adds up to a whole mess of exhaustion and irritability and stress - and with the stress comes the added pleasure of anxiety at bedtime - 'Will I get to sleep?' 'What if my pain wakes me again?' and so on. It's a vicious cycle.

Living with a chronic pain condition is bad enough in itself. Getting through the days is exhausting and when the nights offer no respite from the pain it's easily understandable how some fibromyalgia 'victims' become depressed to the point of almost being suicidal.

Over the years I have tried so many different sleep aid products - none of which have ever worked. From large quantities of alcohol to anti-snoring strips to specialist pillows and mattresses, I've spent a fortune trying, and failing, to get a good night's sleep.

So when I received an email via the FibroMen website from a company asking me to trial  their 'Sleep System' I was sceptical to say the least, but I've tried almost everything else on the market, so why not give their 'free trial' a go?

The very next day my trial product arrived at my door! A big black box stuffed with five single bed width foam 'toppers' of different densities and colours  (2 x super soft and 1 each of soft, medium and firm ) designed to be placed on top of my existing mattress in a configuration suited to my particular conditions - hip pain and lower back pain.
 
And so began my ten day trial of the product that claimed to provide sound, restorative, deep sleep to chronic pain sufferers like me.

Setting the bed up was really easy - even for me - simply place the colour coded, different densities of foam tablet down the length of your bed in the configuration best suited to your pain areas. The leaflet that came with the product provided three options for back pain, lower back pain and hip pain. For my first night I used the lower back pain configuration.

The first night provided me with a decent night's sleep (for me) only waking twice but with some discomfort from my hip pain - the tablet 'toppers' were configured for lower back pain so I suppose that was to be expected and quite normal for me. I did get a feel of the differing densities of foam but overall it was a good night's sleep. The next day I found myself moving around quite freely - feeling almost sprightly. The third night provided me with the most comfortable night's sleep I'd had for many years and left me really positive, but I changed the configuration of the tablets to one designed to help with hip pain for night four and it wasn't a good move - I woke several times with severe lower back pain and (surprisingly!) some pain in my hip and that left me quite despondent. For night five I switched to the configuration for general back pain and it's been that way since - for a reason:

For me the configuration for general back pain has provided me with the best sleep I've had in years!

I still have pain during the day. This sleep system is not a cure for fibromyalgia - but it doesn't claim to be. This sleep system has worked for me in two ways

1. I no longer wake during the night in absolute agony, and
2. I no longer wake during the night FULL STOP!

I can go to bed at midnight and not wake up until my alarm clock goes off six, seven, eight - even nine hours later - I've NEVER been able to do that.

I can go to bed in absolute agony and still fall asleep quite quickly - because the mattress is now so comfortable - and not wake once during the night because of my pain.

When I wake my pain is still there but I don't notice it so much as it's not as bad as it has been in the morning, and getting out of bed is no longer the arduous task it was two weeks ago. As I go through each day I feel my pain building to the point it was at before the trial but I feel so much more able to bear with it knowing that when I go to bed I'm going to get some respite from it.

The absolute beauty of this sleep system is the fact that you can configure the foam tablets in whatever way gives you most comfort and relief. I had a couple of nights where I got it wrong, but it was easily fixed the next day and I know that if the current layout stops working I can have a go at shuffling the tablets to find the right comfort level for me. Quite simply it's brilliant!

So, overall, the sleep system has worked for me and I'm so thankful that Elise from N:rem - the company behind the system - contacted me.

I do have one note of caution to those thinking of investing in the system - and it is an investment because the system doesn't come cheaply - use the free trial first. 

What works for one doesn't necessarily work for another - we all know this to be a fact with fibromyalgia! If you use the trial and find it helps you then, if you can afford to, buy the system. From my experience with the company, and from reading the reviews on their site (and other review sites) their customer service is first class and there are options to enable you to afford the full system if you're on a limited budget. Take a look at their site and decide for yourself, but I have no hesitation, based on my trial, in recommending the benefits of the N:rem Sleep System. 

Sleep Aid Trial - Where to find the latest updates

You may know that I'm in the middle of trialing a sleep aid that claims to significanlty improve the sleeping patterns of fibromyalgia patients by providing comfort, pain relief and deep restorative sleep.

I'm on night three of seven or ten nights using the product.

You can follow my progress on the FibroMen YouTube Channel or on the MyFibro Blog.

Thanks