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?

Farewell to Pepper

At 8am this morning we awoke to find our beautiful little girl, Pepper, had died.

She'd suffered numerous strokes over the past year but always seemed to pull through.

Her most recent series of strokes had left her totally blind, though she seemed to be able to find her way around using her other keen senses that remained.

When we found her she was still warm, so she must have only died within a few hours.

She was roughly twenty years old and we'd taken her in as a stray in 1997. Rest in peace Pepper.

How do people 'see' your invisible illness?

It's fair to say that most people I come across at work, and in my daily life, don't know I have a chronic condition.

Apart from the occasional day, when I'm limping because the pain is in my hips or knees or feet or ankles, and on those days I use a walking stick, I'm to be seen walking (albeit slowly) and shopping like any normal family man.

At work I really have to try to hide my condition for fear of losing my job, so I 'push through' whatever pain barrier I have to beat to do my job and, on the days when I fail to beat the barrier I have to call in sick - resulting in a risk of losing my job.

Thankfully my employers have 'recognised' my condition and are (for the time being) understanding to a degree - the same cannot be said for my immediate colleagues and lower management teams. Explaining that I'm not able to do certain tasks to my Team Leader or even Store Manager gets a 'blank' expression and the question "Why not?" to which I tend to respond "Well, my *back/elbows/feet/hands/neck/shoulder/leg/groin/arm/bowel is giving me jip." (*delete as appropriate) when what I really should tell them is  "I suffer from Fibromyalgia and Crohn's Disease - both are chronic conditions which do not improve and can only be treated with all manner of lotions and potions to enable me to function in a very basic way for most of the time. HR are aware of my condition and expect that, at least on some days, I cannot fulfill all of the roles required of my job function, on these days it has been agreed that I can only undertake 'light duties'"

But still they don't understand. Their role is to see that all of the tasks for the day are completed and having a member of the team who 'cannot play ball' just slows them down. But what if I suddenly announced that I was pregnant? Or I struggled in to work with a plaster cast on my arm - they'd thank me for turning up and give me light duties without question. However, 'light duties' generally means standing for my whole shift at the checkout - which causes no end of trouble for my back - but hey-ho, you take what you can get! At work my invisible illness is seen very much as an inconvenience.

Colleagues of the same role - who aren't on light duties - question Team Leaders as to why I'm not doing any of the heavy stuff and I have caught the Team Leader's response once or twice as "Oh, he's got a (finger quotes) bad back". Understandably this leads to a bit of resentment on the shop floor - I'm sorry (and ashamed) to say that I might have felt the same way not so very long ago.

Having an invisible illness is bad enough in itself, but to have to constantly explain to people what it is exactly that's wrong with you - even people you've told many times before - sort of gets you down, if not extremely angry. If you met one of your friends in the street one day and noticed that he'd lost a leg or an arm you'd remember next time you saw him, wouldn't you? And you certainly wouldn't go home and invite him to your next cycling club meeting.

So, how do you make an invisible illness visible? Wear a badge? Or tee shirt?

I'd love to hear how other sufferers explain their illness(es) to their colleagues, friends, even family. Hopefully someone will come up with an excellent phrase that I can steal!

Welfare Reform Impact hidden by IDS

It seems that the man responsible for all of the government's welfare reforms, Ian Duncan Smith - reforms which have led to hardship for many, homelssness for many and even suicide for some - has 'delayed until after the election, the release of a report on just how much hardship he's caused in the last five years of cuts and sanctions and bedroom taxes -

"Crucial statistics on the effects of the governments welfare reforms will be deliberately delayed until after the election, to prevent academics and campaigners discovering the effects of policies such as the bedroom tax, changes to disability living allowance and employment and support allowance and increased sanctions.

The Households Below Average Income figures will be two and a half years out of date by the time of the election.

Complaints about the delay in publication were made to Iain Duncan Smith as long ago as last September, but with no effect. IDS has also continued to refuse to meet with the Trussell trust to discuss food poverty.

Dawn Foster, writing in the Guardian argues that:

"Academic annoyances aside, the impact of this delay on the political debate around welfare in the election is huge. Cuts to welfare provision have been a flagship policy of the coalition government, and the belief that the answer to unemployment and poverty is to cut off financial support looks to be a mainstay of the Conservatives’ campaign until 7 May. But the official statistics all parties rely on to make their arguments will be two-and-a-half-years out of date, and completely useless as a measure of how the coalition’s welfare changes have affected poverty rates. The raft of changes that heralded the start of the 2013 financial year are hidden from official statistics until votes have been cast."

You can read the full article in the Guardian.

Last Night

I've had one of the worst weeks for sleep.

I've never been the best of sleepers - usually retiring late and rising early - and I know that sleep distubance is an intrinsic part of FMS. But for the past four nights I've lain awake (and in pain - though that goes without saying thesedays) with no prospect of sleep.

I've gone to bed in my usual tired state. Laid down, turned off the lights and instantly woke up - not half asleep awake - w  i  d  e   a  w  a  k  e! 

I'm not awake because of the pain - because I've slept in pain for many years - I'm just awake. I have nothing on my mind, no thoughts are running through my head - "Did I remember to switch off the TV?" "Is the front door locked?" none of that, a completely empty vessel that just will not drift into sleep.

I laid there, in the dark, trying not to focus on sleeping, trying not to focus on the pain, trying not to look at the clock. I tried not to look at it at midnight. I tried not to look at it at 1.30am or 2.45am, and I certainly hoped not to see it at 3.30am. Alas, I saw all of those times, and many more in between and after.

By 4.30am each night I conceded defeat in my epic battle with sleep and got up to make a cup of tea. At 7am on the first morning I attained the "24hrs without sleep" badge. 48 hours the next day. On the third night I got an impressive four hours sleep and last night saw me scale the dizzy heights of six hours.

It's bad enough to be in constant pain with fibromyalgia, but for it to steal our most precious means of minimal recovery, so we might function during the day, seems to me to be the cruelest of all the many horrors this disease has to offer its sufferers.

"Join a local support group." said the Doctor

I live in the North East of England. When I was first diagnosed with fybromyalgia the doctor suggested I seek out a support group, as meeting with others might help me cope better with the syndrome. So I began a search and found such a support group....in Chester le Street (a town in Durham, some thirty miles away)

Even though I can drive, and in the scheme of things 30 miles isn't that far, it's just that little too far for my anxious wife to cope with me driving - there's a busy motorway involved!

So I decided to try and set up a more local support group - somewhere in the Teesside / North Yorkshire area - and what a gargantuan task it's becoming.

Go on Twitter I said to myself - there'll be loads of people in my area who might want to help me start something - every follower so far lives in the south or in the good old US of A with the exception of a few in Newcastle and Scotland! There must be SOMEBODY ELSE in my locality who suffers from this, surely to God?

Facebook was no better.

I've trawled the internet - found all of the national charity-sized Fibro pages - joined some forums on UK Fibromyalgia - posted questions like "Anyone in the North East?' and 'Is anyone aware of a support group local to Middlesbrough?'

It seems that there isn't, and if there is, nobody's telling!

So, I'm asking a favour of all who read this post - please 'like' 'share' or 'retweet' it to all of your followers and friends. Do a man in severe and constant pain a great favour and share the link to my site (www.myfibro.co.uk) for he's desperately seeking at least one fellow fibromyalgia sufferer within meeting distance.

I don't want to set up a convention - I just want to meet up with one or two fellow sufferers locally, to chat and try to help each other.

Or, am I alone with my pain??

Don't become the pain

Day off today! Hooray!! But the pain won't go away.

I've had eleven years in more or less constant pain - on a scale of 1-10, between 2003 and 2005 it was at 4 or 5, from 2006 to 2011 it increased to 8 and for the past three-something years it's hit 9 on a good day and 10 on a bad one - but the majority are good, I suppose!

The problem with being in constant pain isn't just the pain itself, it's the fact that, if you mention it to a family member or friend, they usually say something like "Oh, we know! You've told us a thousand times!!" The problem with being in constant pain is that YOU BECOME A PAIN!

So, you try not to mention it and hope to God that no one asks "How are you today?" because if you say "Well, I've got horrendous back ache and my tennis elbow's playing up again." you can instantly see the dulling over of the eyes of the person asking how you are. People don't want to know how you are unless you're tickety boo!

It's even worse at work - especially when you work in a fast paced retail environment where everyone else is running around like frightened ferrets - when a manager asks how I am I'd love to say "Well really I've got horrendous back ache and my tennis elbow's playing up again." but what actually comes out of my mouth is one of two phrases "Oh, I'm not so bad." or "Oh, I'm alright." As soon as I say either of these phrases I can see the light in my manager's face brighten and he/she'll say "Oh, well can you do big pops for me?" (big pops being hauling multipacks of two litre bottles of Coke, lemonade etc from cages, onto trolleys and then replenishing store shelves of said goods!) I say nothing and do the requested tasks to the best of my ability then wait for the pain to intensify when I stop.

If I was honest with my manager she'd look at me like I was something she'd trod in and put me on the checkout for my entire shift - and as most of us will know, standing for long periods does nothing for the condition except to leave you with excruciating back ache. So, either way, I'm scuppered.

Being honest, explaining to people how we feel on a day to day basis is extremely difficult when they can't see anything wrong. You don't have a leg missing, you're not bandaged from head to foot, there's no spilled blood or visible bruising, you look well enough, so why are you constantly jabbering on about being in pain? So we soldier on, in pain but trying desperately not to be a pain.