It's Been A While.....

There's something quite upsetting, yet enlightening, about leaving a blog for so long.

When you finally pluck up the courage to go back and have a look at how you were (in my case way back in February 2017) you sometimes see the reason for the lack of blogging.

Today, as I was at a loose end for the first time in months, I thought "I know! I'll catch up with the Fibro Blog!" When I logged in to the account and re-read the last post from February, I saw some hope. Hope that I might be able to persuade my readers that I had finally turned a corner, that my pain levels were now manageable, I wasn't depressed, my life was back on track...

But it isn't.

And this has, somehow, led me to the conclusion that it never will be. My life now is my life tomorrow, and the day after, and the week after that. My life is going to stay the same from now until I die.

What strikes me is this: My life will stay the same, but my attitude to it will fluctuate.

I'll have good days and bad days. I'll have days with lots of pain and days with limited pain.

I'll never have a day when I don't have pain, in one form or another - be it emotional or physical.

What I will have is days where I can handle the emotional and physical pain and days where I can't.

I just have to recognise the good days and the bad days and live my life accordingly - without getting depressed about how things are because I know that, although today might be a bad day, tomorrow could be fantastic!

Getting By.

I'm slowly rebuilding my strength. I've spent almost a whole year doing as little as possible - except for one thing - focusing on myself.


About this time last year I had so much going on in my life - blogs, reviews, websites - building and maintaining my own as well as developing new sites for friends and family, research, product reviews, contractual obligations, reading, maintaining the FibroMen site, trying to build the FibroMates site and their associated Facebook, Google+ and Twitter accounts - and all the while feeling worse and worse, suffering from agonising pain that not even morphine could counter and sinking further and further into depression and at the same time holding down a physically demanding job and trying to cope with a disabled wife and a disabled daughter, it all just became too much and one day I sought refuge in the form of a little too much medication - cocodamol, morphine, fluoxetine (Prozac) and alcohol. Not an overdose, merely a combination that was too much for my fragile state of mind to handle. I imploded.


The meltdown was so swift and my mood so dark that I shut out everything and everyone - including my wife and, to a lesser degree, my daughter - quite literally overnight. I became obnoxious. My marriage crumbled.


Apparently my whole persona changed. At work I maintained my old jovial, friendly and helpful state, but at home I was rude, indifferent and bullying. I was simply awful. I didn't want to be around my family and I tried my best, it would seem, to make them dislike me so that I could have a valid reason for leaving - there was a deeper issue going on which I can't/won't explain here, but those of you who know me personally are aware of what this issue was. All I will say is that many years, many decades, of pent up emotions and past grievances came bubbling to the surface. I hated myself, my life and everything/everyone in it. I painted on my smile and went to work for sixteen hours a week.


Now I'm getting by. My pain levels are at an all time high because I dare not take morphine again, but I'm getting by without it. I started going to a gym in late summer last year and, whilst this may be adding to my pain, or at least perpetuating it, I have fixed in my mind that the pain is a good sign instead of coming from the unknown like fibromyalgia, and I'm finding it beneficial to improving my strength so I can still work sixteen hours a week in a busy retail role. I look better too, so to hell with the pain!!


As for my marriage - well, I'm still at home. We still row, and my wife is keen to remind me how awful I was, but we're getting by.....

Can A Scent Improve Your Fibromyalgia?

.I've never been big on aromatherapy. I mean, how can smelling some pungent odour treat your ailments?

The constant pain of fibromyalgia makes sitting, in a relaxed fashion for an hour or so, whilst inhaling some heated herbal concoction, a no no from the start. I can barely sit for more than five minutes without having to move around, fidget, or stand up and walk around the room for a few minutes. It's exhausting being unable to relax because of the pain.

Despite my known aversion to aromatherapy I was offered the opportunity to try out a new essential oil diffuser - a stylishly designed electric diffuser with a glass bowl and fluted pipe / chimney to disperse the aroma around the room. No sticking a tea light under a warming pot - no risk of fire, no mess, no hot parts on which to burn your skin. The company which make these diffusers, Organic Aromas, claim that it can help with the pain of fibromyalgia - hence my intrigue.

Having had constant pain in my lower back for many years now, as well as varying pains elsewhere and everywhere, and having tried many, many 'remedies' from medication to massage, exercise to electronic stimulation, with little to no success, I've reached the point of 'I'll try ANYTHING - just please let it work, for just an hour, or even half an hour! Okay, I'll settle for five minutes without pain.'

I've tried creams and potions, foam mattress toppers (which actually helped ease pain AND improved my sleep!) and drugs (not the illicit kind!) The drugs definitely don't work. I take them religiously because that's how to ensure that they have the maximum benefit - even when the pain is bearable - and they have absolutely no effect whatsoever (until, of course, I don't take them for a few days and the pain gets worse - so I suppose they do work after all, just not very effectively!!) and the drugs do have side effects, some of which can be worse than the pain they're used to treat!

So, getting back to the point - aromatherapy - would it work to get me relaxed and pain free?

The Organic Aromas Raindrop Diffuser

Within ten minutes of my package arriving in the post the device was set up, primed with the supplied essential oil and switched on. Instantly the room was filled with what I described as a heady, sweet aroma - unfortunately my wife thought it sickly sweet and 'cloying'. That was the Organic Aromas Signature Blend essential oil - sadly not a great success in our house. But I was enthused by how effective the device was - once a gadget man always a gadget man - it had seemed to fill the room within a matter of moments. So I decided to invest in a different scent of essential oil - we both love lavender, our garden is full of it, so I bought some of that.

The next day, whilst the wife and daughter were out, I set about my daily chores - with the added benefit of the beautiful aroma of lavendar silently filling the air. By the end of my daily tasks I felt as if I could do them again! Usually I'm fit to drop.

Could it have been the aroma? Had it had some therapeutic benefit after all?

Some time later I was contacted by Organic Aromas who were keen to learn how I'd got on with their product and, more specifically, their signature blend essential oil. I told them I was really pleased with the diffuser but that the oil they had supplied had not gone down too well. The mark of a professional company is how well they respond to negative feedback - Organic Aromas sent me two new oils to try out - their Serenity and Purity blends.

Both blends provide a delightful scent which helps me breeze through my domestic chores during the day, whilst on an evening I find I can sit for longer than my usual five minutes without fidgeting and when it comes to bed time I am able to switch off and sleep far more quickly than I have done for many, many years.

Relaxation is key to conserving energy for people with fibromyalgia, or any chronic pain condition. Often the hardest part of living with these conditions is poor quality, non-restorative sleep. My little diffuser works a treat at bedtime - and what's more, I don't need to worry about putting out the candles before I go to sleep - this little miracle turns itself off too.

All in all the Organic Aromas Essential Oil Diffuser is a massive hit in our household!

For When Your Fingers Aren't So Nimble Anymore...

This is a sponsored post. I was provided with a prototype of the product in exchange for an honest review, I have been compensated for my time through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.

Introducing "Nimble"

On days when my pain levels are hitting the ceiling and I simply cannot be bothered with anything except to try and get through the day with as little stress or physical torment as possible, it’s often made much worse by the fact that I have to open something as simple as the foils on my tablet strips – have you tried to push them through from the front recently? – it seems as though they’ve started making the foil out of 10mm stainless steel

 – and having to prepare and cook a meal for myself can often result in the most unhealthy of meals – The Pot Noodle, 375g of dehydrated mush that looks much the same going in as it does coming back out. Opening a packet of bacon – you know the ones with the little loose corner to enable you to ‘peel back’ the plastic cover that no man (or woman) has EVER in the history of ‘peeling back’ the plastic cover, been able to complete without the need for some heavy, sharp bladed and downright dangerous, intervention! It seems as though, in the fight for ever more ‘child-friendly’ packaging, manufacturers have lost sight of the need for easy access to their products by those less able among us – the elderly and the disabled.

But wait, before you all rush off to your laptops to pen a strongly worded letter of complaint to the guilty parties, here’s something that’s child friendly AND makes opening packaging a breeze – even for my gnarled old fingers.

These aren't my gnarled fingers!

 

It’s called “Nimble” – I assume because it returns us less nimbled people back to the land of the sprightly – and it makes opening things like bacon and tablet foils SO much easier. More importantly, you won’t run the risk of stabbing yourself and bleeding out onto your freshly opened bacon.

I got my “Nimble” in the post on Tuesday, just in time to take it to work with me – I work in a retail environment where opening sealed containers is an everyday, if not every minute, occurrence, but do they supply box-cutters? Well, yes, but can you ever find one when you need it? No, and when you do it's usually blunt – and I used it during my shift to open sealed tinned and bottled goods ready for putting on the shelves. The “Nimble” sliced through the seals on crates of beer and pop bottles, trays of tinned goods and the selotaped seals of boxes with ease. I couldn’t tell you how many times I’ve snapped my nails back when trying to do this without a cutter in the past! When not in use the “Nimble” slips off your finger and into your pocket ready for next time – I even developed the ‘skill’ of putting it on whilst still in my pocket so that I could whip it out, cut, and slip it back in without anyone really noticing! (Though my practicing raised a few eyebrows, especially whilst I was working the tills!))

The beauty of the “Nimble” finger cutter, as I’ve affectionately named it,  is that it won’t cut your fingers – believe me, I tried several times – the blade is so small that it just won’t penetrate your skin, but, when firmly pressed against a slightly harder surface like tape, plastic or paper it slices with the precision of a crafters knife. I absolutely loved it.

At home I’ve used it to open cellophane packaging, envelopes, crisp packets, packs of bacon (of course!) and those other ‘easy-open’ packs that never work - the ‘Tear Here’ strips around biscuit packets! It makes things so much easier!

You can find out more about “Nimble” by visiting Version 22. The product is being launched via a Kickstarter campaign today, so you’ll be one of the first to see it. Kickstarter is a fantastic way to get new products onto the market – you pledge an amount to support the project – if it reaches its goals the manufacturing process begins, you are charged what you pledged for the product and you become one of the first people in the world to take ownership of your very own “Nimble” (If the project doesn’t reach the required goal you are not charged, obviously!)

So, let Nimble point the way to an easier future. Pledge to buy one, two or three to make this product a reality for all those who struggle with packaging!!

Visit the Kickstarter Project.

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.

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

I'm Trialing A New Sleep System for Fibromyalgia Patients

The system is designed to relieve some of the poor sleep quality - insomnia, restless and non-restorative sleep and sleep distrubance through pain that some fibromyalgia victims suffer (myself included - I haven't had a decent night's sleep for many, many moons so I'm really hoping that this gives me some relief!)

I'll be vlogging about the trial this week so watch the videos I post each day on how good, or bad, my sleep has been - and keep your fingers firmly crossed for me!

If you have any issues with my accent - I can set up subtitles or provide you with a guide to Yorkshire Folk Lingo!!

Unexpected Support

These days getting anything for nothing is an impossible task. This is especially true of hard-pressed local authorities under a Tory Government. 

So I was genuinely shocked to hear that, after my Blue Badge assessment, I had been referred to local social services for 'additional support' to enable me to stay in my own home. (This was especially shocking given the fact that my family and I have never had any intention of leaving it!!) But apparently, the occupational health assessor had decided that my level of disability warranted an intervention by the Staying Put Scheme - set up to support home owners and council tenants remain in their homes for as long as possible rather than enter sheltered housing or care homes.

So, even though I own my home, I'm eligible to access support to make living with this dreadful condition a little easier, and never one to look a gift horse in the mouth, I have.

The lady who visited me was another occupational therapist who observed me doing the everyday things I would do in my home - climbing the stairs, sitting and rising from chairs, getting in and out of bed, getting in and out of the bath / shower, using the toilet (not actually using it!!), preparing meals. She asked me about my comfort levels during each activity and, as I seem to be in a never ending flare at present, I answered as honestly as I could.

The trouble is, I can do all of the things she asked me to do in the fashion I've become accustomed to doing them - I can get in and out of my chair - with some pain, I can get up and down the stairs - with some pain, I can get on and off the toilet - with some pain, I can get in and out of the bath - with some pain etc. I didn't tell her I was in pain each time I did the activity requested but, somehow, she knew. She could see my pain. I wasn't wincing, or groaning at every activity (or, at least I don't think I was) but she identified the areas I have most difficulty with merely by observing me do them!

Two days later I got a visit from the local authority Handy-Man Scheme who installed a bannister to enable me to climb the stairs easier and a week after that the occupational therapist returned with a bath 'balloon' that inflates so I can sit and be lowered into the bath, then raised back up to get out - it's an amazing piece of kit and has made life so much easier

.
I no longer have to ask my wife to help me out, or clamour over the edge of the bath to the floor when I can't lift my legs.

I'm incredibly grateful for these things. Having struggled along for so long it's nice to be able to get a bath without the gymnastics - I used to have to get in backwards on my good leg, sit down with my bad leg over the edge of the bath and then 'man-handle' it in to the water! Now I just sit on the seat cushion, deflate it, get bathed, re-inflate it and get out - it's fantastic!.

The Simple Task.

I was left with just one task to complete before my wife returned from work today. I'd woken feeling refreshed and vibrant for a change, capable of anything.

It was meant to be a five minute job. Take down the old shower curtain and hang the new one. Twelve hooks to unclip, remove from the old curtain and attach to the new one, then rehang on the rail.

Dead easy. Dead wrong!

The pain in my back intensified as I reached up to unclip the hooks from the rail - but there's always pain in my back. I could cope with a little more for the short time this was going to take.

After unclipping three of the twelve hooks from the rail I began to get intense cramping in the thenar eminence (the fleshy part of the thumb where it merges into the palm) like I'd been squeezing a rubber ball for hours, or gripping on to a rope. Only nine more of the little buggers to unclip. Perhaps if I stood on a footstool so that my hands were level with the rail it wouldn't hurt so much. I fetched a stool which didn't quite give me the height I needed, but made things marginally easier on my hands. Three. Four. Five. By the sixth hook I had to stop. My thumbs throbbed and I simply couldn't apply enough pressure to unclip them from the rail.  Hooks seven to twelve took a further thirty minutes to unclip - I had to rest my hands for five minutes between each one. 

Now came the task of removing the hooks from the old curtain. Fiddly little things coming off and fiddly little things going on to the new curtain. Another half an hour. More painful throbbing in my hands. Thankfully it didn't last too long, after a short while the cramping diluted to a dull throb and then only hurt if I touched it - like a bruise. 

The pain has gone completely now, but it's got me thinking about how this terrible affliction is affecting my day to day life. Simple tasks, which I'd once do without even thinking, now have to be meticulously planned around the expected pain - allowing for it in terms of time taken to complete and having all I might need to hand so I don't have to go searching for stuff and, of course, in true British worker fashion, having lots of rest breaks and copious quantities of tea!

Today's task was so simple, I hadn't even thought how difficult it would be. For such a simple task to have such an effect on my body concerned me greatly. How much further will this illness take me. My doctor advises that there is no cure and that it will get progressively worse, but the rate of progression is quickening and I'm worried that I won't be able to do anything at all in just a few years. Fibromyalgia might not be a life-limiting illness, but I certainly discovered today that it's an 'ability-limiting' one.

Do you REALLY have Fibromyalgia?

Do you pass the fibro test?

I have the pain in all four quadrants, insomnia, fatigue and fog but I'd fail the eleven out of eighteen tender points bit!

Best start looking for a new diagnosis.....

Tired all the time? You might be suffering from Fibromyalgia.

I've just read an internet advertisement that started with the header 

"Tired all the time? Then you might be suffering from fibromyalgia."

I don't know about other sufferers, but I imagine they will have experienced something similar to me, and tiredness doesn't come close. Exhaustion would be a more apt description. I've been tired through lack of sleep and I've been tired through physical exercise in the past, but I've only ever been truly exhausted through fibromyalgia. It's when your body no longer has the will to function properly. It's when your brain begins to shut down involuntarily. It's when your only thought is to sleep, wherever you are and for as long as your body needs to recover from the cause of your exhaustion - but, alas, your body won't fully recover. You'll wake almost as tired as you were before you slept.

It's at times when I'm exhausted that I sleep the most. It happens possibly two or three times a year - I get a full six or seven hours sleep (I usually sleep for far less than this) and when I wake I feel far from refreshed and my pain seems to be worse - possibly from being immobile for longer than I'm used to. Exhaustion + More sleep = more pain, and more pain means more tiredness - it's a vicious cycle!   So sleep offers me no incentive - it won't refresh me, it won't reduce my pain. I sleep because it would be rude not to. I sleep because I don't need the heating on when I'm asleep. I sleep not to recover physically but to switch my brain off from the pain for four or five hours a night, and even then it won't always let me. Sometimes the pain won't let me sleep, sometimes the pain wakes me up!

It's no wonder I look so haggered!!

Pregabalin (Lyrica)

I've been taking 600mg of Pregabalin every day for the past six weeks. 2 x 150mg tablets in the morning and two at night.

Initially they worked just fine - though I did notice that I suffered mild 'light-headedness'. But in the last two weeks at this dose the light-headedness has intensified to the point of swooning dizziness. It really feels like my head is about to lift off or I'm going to fall over - especially when turning my head any faster than a tortoise!

I've also noticed that I've developed tremors - in my hands, legs and shoulders.

The medication is prescribed for chronic neuropathic pain and can affect the central nervous system, so I was half expecting a mild form of these side effects, but these have now become troublesome - to the point of losing a shift at work - so I've decided to wean myself off them and go back to see the quack.

The tablets have helped with the pain a little - in the sense that they've probably numbed my brain to it!! (Which, I suppose, is what all pain relief does!!)

I hate messing around with medications, but until the doctor gets it right I suppose I'm going to have to be a human guinea pig for a while longer.

I wonder what side effects others have had on this medication?

How do you cope with the pain?

Yesterday was a good day. I made my 05.45am start at work and managed to complete all of the heavy lifting and carrying involved in my role. I finished work at 11.45am and drove home.

In the time it took for me to finish work and drive the one and a half miles home it seemed that every fibre in my body had dried out. I could barely find the energy to open the car door! The pain in my lower back had intensified to a hot burning poker and not one but both elbows screamed in agony when I tried to bend them.

My daughter Emily had a dentist appointment at 2pm so I had to ready myself for that. I made myself a sandwich and took some cocodamol, which didn't touch it, somehow got changed out of my uniform and dressed for the rest of the day, by which time we were due to leave.

Emily chatted happily in the car, though I could tell she was nervous about her appointment - she tends to chatter a lot when she's nervous - anyway, her talking took my mind off the pain for me a little, though every gear changed pulled at the base of my spine and increased the pain in my left elbow.

The dentists appointment went well - though Emily has overcrowding issues and needs to have some milk teeth removed at her next visit - and we drove straight home. I decided not to make Emily do her afternoon lesson (we homeschool) because she'd done well at the dentists (and probably because I was in too much pain!) So we spent the rest of the afternoon watching TV and chatting about this and that, and laughing a lot - we do a lot of laughing, Emily and me!

Lesley (my wife) came home at 5.30 and it was time for me to cook our evening meal (which, being from Yorkshire, we correctly call 'tea') I rustled up my speciality - fish fingers, mashed potato and peas which always goes down well in our house and then I washed the pots - "dream husband" is what my wife calls me!!

And in all of it the pain never left my body. It never subsided or abated, it stayed a steady 8 out of 10. Every movement hurt, talking hurt, eating hurt, swallowing hurt. In the evening we'd chatted about Pepper our cat who sadly died on Wednesday morning, and we'd got upset a little thinking about how frail she'd become from the bouncy young cat we first met in 1997 - even crying had hurt.

The whole day, since finishing work, had been one long tortuous torrent of moderate agony. So how did I function? How did I manage to do the things I did when I was in so much pain? What part of me allowed me to get on with the tasks that had to be done?

The simple answer is "I don't know." I hear it so much - the words "You just have to get on with it" I've heard myself uttering those words, but I have no idea how. I simply can't describe what it is that makes me move and function when all I really want to do is curl up and wait for the pain to stop. Perhaps it's knowing that the pain will never stop. Perhaps it's because I've grown used to it.

Can you describe your coping mechanism?