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.

Meeting The Ghost of My Former Self.

I used to be quite a fit and healthy young man. From the age of sixteen I was forced into activities I wouldn't ordinarily have undertaken. Up to sixteen I avoided any physical activity because I thought I couldn't do them with any flare or skill like my schoolmates could. I was crap at everything - running - always came last, swimming - always came last, football - always last to be picked, cricket - ditto, hockey - ditto. Sport + Gary McArthur = Disaster.

At sixteen I joined the police cadets and everything changed. I knew it would and I wanted it to. Suddenly I was challenging my attitude to physical activities as something to be shunned by forcing myself (or being forced) to undertake them on a daily basis. Granted I still wasn't any good at them, but I tried to break my mindset towards them. The police force got me hiking, abseiling, camping, canoeing, mountain climbing, cross-country running, orienteering, weight training and partaking in almost every other sport known to man in much the same way as the army trains a team of dropouts into soldiers. The police force instilled discipline and order and gave me a massive sense of achievement. In amongst all of the legal definitions and laws and regulations the police force also gave me good health which lasted me well into my thirties. Conversely, it also taught me how to drink like a fish! (but never lose my self control) and that's another story for another time.

From sixteen until my mid-thirties I considered myself to be a fit and healthy individual - not obsessive, but I remained lean and strong and enjoyed outdoor activites like hiking. I'd bump into former school mates who'd let themselves go by piling on the pounds and I felt quietly smug that I hadn't descended into obesity. I was no longer embarrassed by my slender build as I had been at school.

Then.

Then I suddenly died. It wasn't gradual or slowly degenerative. It was overnight. I woke one day with backache. It was 2003. Between then and now I haven't had a single day without pain. Obviously, there have been good and bad, as well as bad and really bad, days, but every day I have had some level of pain in my back. Sometime after the backache began I started to get pain all over my body - arms. legs, head, neck, feet, fingers, toes, hips, knees, and sometime after those symptoms started I began to get the internal ones, IBS, Crohn's, you know the drill. Fibro affects us all in pretty much the same way and a whole myriad of different strokes for different folks.

The point is this, on that day in 2003 when I awoke with backache, my former self had died in its sleep. Over the course of the next thirteen years, as each symptom struck, I gradually became the ghost of the Gary McArthur I used to be.

The physically fit Gary McArthur became the disabled Gary McArthur, and over the course of 2015 the Gary McArthur who was always positive and happy go lucky and forward thinking and strong, became the depressed Gary McArthur, the negative and whining and hopeless Gary McArthur, and it was at this point in my life that I finally met, or recognised, the ghost of my former self - that skinny and spotty little sixteen year old boy, who'd been scared of all physical activities who, through sheer determination, had turned it all around, who'd laughed in the face of his fears and grown to love them (without ever being any good at any of them) was dead. He died when I gave up being 'well'. He died when I gave up fighting. He died when I lost hope during the course of 2015 and became depressed. He died despite reading hundreds of blog posts by other fibromyalgia 'survivors', all with a positive message that laughed in the face of their illness. He died when I stopped laughing in the face of mine.

But, fear not, for that skinny little sixteen year old's spirit is still inside me and he will live again.

I've set myself a goal for 2016: To find the spirit and the grit and the determination and the hope I had as a sixteen year old boy, and laugh once more in the face of my illnesses. To challenge myself in the way I did when I joined a career path I knew I wasn't suited to, simply to face my fear of all things physical.

Fibromyalgia and Depression

Having an invisible illness seems to lead to other invisible illnesses.

I have fibromyalgia. I also have IBS / Crohn's Disease. As my fibromyalgia was diagnosed first I assume that the anxiety and stress that placed on me, both at home and in my work, led to the turmoil in my guts. And it's been that way ever since.

Almost thirteen years have passed since I was first diagnosed with fibromyalgia and, in that time, I cannot remember a day when I didn't have symptoms from it. Of course it ranged from mild to moderate, moderate to severe, but always there. After four years of constant pain I eventually began to experience symptoms of IBS which, I assumed, were related to the lower back pain and I instantly thought I had cancer. After many weeks of putting it off I eventually went to see my GP and after a few more tests I was diagnosed as having Crohn's Disease an incurable inflammatory bowel disease. Oddly all tests since initial diagnosis have shown no inflammation so my gastroenterologist has 'downgraded' my condition to Irritable Bowel Syndrome - but it affects me no less because of this downgrading!

So, having lived with chronic pain for almost thirteen years and bowel disturbances for the past eight and a half years, I thought I'd had my quota of 'invisible' illnesses but it appears that I was wrong. For the Gods have decided to test me, yet again, to see how I cope with another layer of invisibility.

This new invisible illness came out of nowhere - as did the other two - but rather than hit me with symptoms all of a sudden - fine one minute, stricken the next - this cloak of invisibility crept up on me over a period of about two weeks. I'm talking about depression.

Obviously, when you live with chronic pain 24/7 for 365 days a year you're going to have times when you feel a little down and fed up with yourself. I've experienced times like that before but I've always snapped out of it fairly quickly and resumed as "normal" a life as I could under the circumstances.

But this depression has gone much deeper than my previous bouts of 'fed-uppedness' (if that's a word?) This depression has really knocked me for six. This depression has been the most invisible of all of my invisible illnesses - with fibro and IBS my family and work colleagues can see me physically wincing with pain or running off to the loo or holding my guts - sometimes they can hear my symptoms too, so as far as invisibility goes they're somewhat apparent to the outside world.

Depression is a whole new ball of wax. Externally there is nothing to see. I laugh at funny TV shows, I act the fool and joke around at home and make pleasantries with my customers and colleagues at work. My face and body show no outward signs of being ill.

In my head I want to explode. I want to shout at people who annoy me - the ignorant customers who don't say please and thank you when I have to fawn over them like they were royalty, the stupid ones who change their mind halfway through a transaction or wander off to get something else leaving me with a growing queue. I want to curl up into a little ball and hide away instead of facing these people. At home I join in because I have an obligation to do so, not always because I want to. I'm short tempered with the ones I love most and I hate myself even more because of it - and so it builds up and up and up until, one day, I know it surely must explode. Yet all the time I fight it so that, externally, my face looks 'real' and 'normal' just as I've tried to hide my chronic pain and gut turbulence for so many years. I try to be a valued member of society but I value myself less and less each day - I feel unworthy of praise, of love, of life itself. Things I love to do are being abandoned - art, drawing, photography, cooking for my family all feel like the most arduous of chores now whereas, six weeks ago, they were my life.

Depression is the most heinous of invisible diseases because there isn't a scrap of evidence of its existence. It's all in my head. I should snap out of it. I should think positively. It could be worse. I could be paraplegic - all the things we're told never to say to someone with depression I've told them to myself over and over again - and it's right they are definitely the wrong things to say to someone with depression because I can't snap out of it, or think positively and it couldn't be worse (surely) and I'm sure most paraplegics feel the joy of life sometimes and I know it's all in my head because it's a mental illness, to do with the brain, which is found, in most people, in the head!

I have not, as yet sought treatment for this depression, prefering to try and fight it myself - but I think I'm losing the battle. My reasons for not seeking treatment are that my GP thinks I'm a malingerer already and I'm worried about the side effects any medication might have on my already feeble guts. I know in my heart what I need to do - I've told many people in my position in the past to get treatment as soon as possible so I'm going to have to bite the bullet........ before I take a bullet.

Sick & Tired Of Pills & Potions

It seems that every drug prescribed to me by my GP has little or no effect on my pain. So far this year I have had Gabapentin, Pregabalin, Cocodamol, Naproxen and the latest one Nefopam, none of which make any dent in my pain and all of which have given me more grief than benefit.

My fibromyalgia affects my lower to middle back, elbows, hips and knees, and pain from this is exacerbated by my crohn's disease / IBS symptoms. In a last ditch attempt at finding a treatment that works, before referring me to a pain management specialist, my GP decided to try me on Nefopam 30mg x 2 three times a day. I started them last Wednesday, it is now Sunday. On Friday I had to rearrange a work shift which was due to start at 05:45am to 11:30am as I had experienced extreme abdominal spasms and diarrhoea throughout Thursday. The spasms hadn't diminished by the time I started work, so my six hour shift was spent in total anxiety of another attack. When they came, thankfully, they were bearable. 

Firday night I slept fitfully and was wide awake at 03:25 I got up to visit the toilet at 05:30 and found that I couldn't urinate. I stood for a few minutes, absolutely bursting to go and when it eventually came it was like the pressure valve had been reduced to a slow. burning, trickle. It's still the same today, plus I have a headache - something I rarely get, but when I do I don't do them by halves! It's a stonker! Last night I got only two hours sleep.

So, they have been the side effects of Nefopam, but what about the benefits I hear you scream. Well, there haven't been any benefits except to say that my abdominal cramps have diminished to a mild burning every so often, but I'm putting that down to Buscopan rather than Nefopam.

My GP said that a referral to a pain management specialist was an admission by him that he could do no more for me and that pain management would provide only 'palliative care' ( I thought that term referred to terminal patients only, but perhaps that's what he meant!? ) I felt like saying he'd done nothing for me anyway, but thought better of it.

And so I find myself back to square one on this snakes and ladders game of Fibromyalgia. I'm taking no more of the Nefopam as they've made me feel awful. I'll make do with cocodamol and my TENS Unit until my pain management appointment comes through .

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.

Happy Easter

Good Friday. Just got up and it would appear that it is going to be a good day indeed. Pain levels are around three or four - which is excellent for me and the crohn's seems to be settling down now that I'm back on the prednisolone. Don't want to tempt fate though as I have to be at work for 11.30. Have a happy Easter everyone.

I'll leave you with this cute image of the Easter Bunny...

...enough to cheer up any dull Good Friday!

Smoking.

For 34 of my 49 years I have been a smoker (49-34 = 15, yes, I was fifteen when I started!)

Apart from one period of eleven months in 2012 when I made a serious attempt to quit, I have smoked at least twenty per day, sometime upwards of 25.

I considered myself a hardened, dyed-in-the-wool smoker. I resisted every attempt to get me to quit. My wife (who's never smoked) and daughter have begged me, bullied me and bribed me to stop smoking. I never would. I could never see myself as a non-smoker. From the age of about twenty-five I made several half-hearted attempts to stop using every method known to man - self-hynosis, gum, patches, willpower, tablets, nicotine lozenges, electric cigs - you name it I've tried it. Nothing worked.

Last October, for my 49th birthday I tried a new electronic cigarette (not for the first time) One with a battery and detachable 'tank' which you fill with nicotine liquid and 'vape' through. I bought it as a smoker with no intention of quitting - I just felt the need to cut down because of the cash implications smoking has as well as the health ones. I gave myself a bit of advice - "Try not to smoke, try to use this instead, but really try." I expected nothing from myself other than I would try.

And try I have. Okay, so I use the highest strength of nicotine 'juice' I can find and yes, it very rarely leaves my lips, but my electronic cigarette has replaced real cigarettes in all but one aspect of my life - work. At work I manage to get through five cigarettes in a week - I enjoy a ciggie in my breaks - which is a vast improvement on my former smoking self when I would smoke twenty plus PER DAY. I'm incredibly proud of myself for coming this far.

I know there are those out there who will say "But you haven't quit completely." and they'd be right, I haven't. But it was never my intention to quit - which is what differentiates this attempt from other attempts to quit fully. The fact I'm allowing myself the occasional smoke at work has made it easier to carry on, rather than stopping altogether and making myself feel 'deprived' In the past I wouldn't have dreamt of going to bed without knowing there were enough cigarettes to see me through the morning of the next day. Now I can go to bed, wake up, get through the full day, go back to bed without ever smoking one solitary cigarette. They rarely cross my mind. If I don't have any I'm no longer the raving maniac I once was. By trying I've found I can live without them - at least when I'm not at work. That challenge is another bridge to cross when I get to it, but I'm sure that I'll get there soon as the ones I am still smoking aren't enjoyable in the slightest - in fact they taste rank.

Surely they haven't always tasted this vile..........????

Why did I ever start?

Quality Family Time - What Does It Mean To You?

Modern life decrees that we should all run around like frightened ferrets to maintain a lifestyle none of us can afford. We add stress to our lives to ensure that we are earning enough to pay for the house, the car, the annual holiday(s) the latest hi-tech gadgets, and we do this intentionally. Nothing is ever enough.

I'm done with it all - I did the stressed out thing years ago and look where it got me, fibromyalgia, crohn's disease. My family live very frugally these days - we have to having given up, or had taken away through austerity, the high powered, high earning roles we once had, we're now both cashiers in convenience stores. But even our frugal lifestyle dictates that we must work at least 37 hours per week between us to make ends meet and that means that six out of seven days in a week one, or both of us are at work. We only get Thursdays when we can be a complete family together.

But we get by. We earn enough to pay the mortgage and rates and utilities and, because we rarely go out for meals or social occasions, we treat ourselves to a decent package of entertainment through Virgin Media.

We don't buy a new car every three years like we once did. Our car is now twelve years old and probably in need of some TLC - but only when, and if, we can afford it. We don't have the latest in high tech gadgetry - we have a ten year old laptop, pay as you go mobile accounts with second hand handsets and a Samsung Galaxy Tablet (one out of three ain't bad!) which we had to get for Emily to use for her education. We don't take annual holidays overseas for two reasons 1: We can't afford it and 2: We really don't want to. Many of you might find the latter a little strange but we really don't want to - we have all we need on our doorstep, so much history within a hundred mile radius of us that we have yet to explore, so many visitor attractions, beaches, lakes and natural beauty within walking distance, why would we want to fly half way round the world when we can do it all at home?

It's also good that we are all singing from the same song sheet too - it would be hell on Earth if one of us had some kind of wanderlust and the other wanted to be a hermit - we ALL love the way we live - work as little as often, earn what we need to live in that time and the rest of the time be together as much as we can and enjoy "Quality Family Time" in front of the TV or playing a game or doing some sort of craft,  with a cosy fire, a nice cup of tea and warm slippers!!