Unresolved emotional trauma - Mother.

I've learned recently that fibromyalgia, CFS / ME and other auto-immune 'syndromes' can be triggered as a result of emotional trauma and came across this post from a previous blog of mine. Written in May 2008 'celebrating' the 64th birthday of my mother who I hadn't seen for five years (It's now passed the twelve year mark) it shows one brief chapter in my Life with My Mother, which had always been a strained relationship to say the least. Reading the post again this morning it raised a lot of unresolved emotional traumas - I want to scream at her for being a really bad mother, I want to thank her for raising me to the point that she did (I was nine when I moved into my grandmother's) I want to beat some sense into her, I want to show her what she's been missing out on by excluding us all from her life - three grandchildren, two sons, two daughters in law - all those Christmasses, birthdays, Mother's Days when we could have been a family..... anyway, read on, you'll see it's written in blue italic pent-up anger font:

If I had a picture of my Mother (I do now - scroll down!) on this computer I'd post it here today. Today is her 64th birthday after all, so you'd expect some kind of recognition or even a bit of a celebration of her life so far. It's what normal families do, isn't it?

The fact that I haven't seen her since the summer of 2003, or spoken to her since March 2005, should be alien to most families. Not to mine.

Prior to the birth of my daughter in 2003, and for reasons best known to herself and her third husband, Mother had decided to exclude me (and my brother) from her life for nine years. It was not until six months after Emily was born that I plucked up the courage to write to her to advise her that she was a third-time grandmother. Her response was that of a normal Mother - we visited her (once she'd told us where she was living) and for a few hours one day in 2003 we were a normal family. She was overwhelmed with Emily and seemed genuinely delighted that we should put the past behind us and move forward. I was wary. With good reason.

A few days after the visit I called her and she was cool again. I asked what was wrong but she didn't want to say (or couldn't, or wouldn't) and a few days later an email arrived from her husband Richard, who advised me that I should stay away or he would call the police. His reasons? Apparently I had not called Mother to thank her for the birthday card she'd sent me and he'd assumed that the reason I hadn't called her was because she'd not included any money with the card, and that I was a scrounger, a layabout, a liar and a cheat. He is quite mad and has driven my Mother, who was never quite the full shilling, to his mad ways. Alienating her from the entire family on her behalf, but I suspect secretly with her full approval.

In March 2005 I got a call from her, out of the blue, to advise me that she had been diagnosed with osteoporosis and that I should let Steven (my Brother) know "as it's hereditary." Why she couldn't call him herself I'll never know. At some point in the conversation I mentioned my Nana (her Mother - who had sadly died the previous month), her response? "I don't want to talk about that woman!" I said "You do realise that she died last month - Richard did tell you, didn't he?" The phone fell silent for a brief moment and she repeated that she didn't want to talk about 'that woman!'. Clearly Richard had not passed on the news of her Mother's death. This explains the reason for her failure to attend the funeral.

I haven't spoken to her since. She married Richard in 1983 and quite quickly began to alienate herself from the rest of the family. Steven was first in 1986 when she 'boycotted' his wedding because of some minor disagreement over seating plans. Even the birth of her first grandchild in 1990 couldn't heal the rift - though Steven tried, and again with his second child in 1992 - to no avail. She boycotted my wedding in 1993 because I'd invited my brother. All in all, between 1983 and the present day, I have seen my Mother less than ten times.

The family had never been really close due to my Mother's ways, but after Richard came along it divided, sub-divided and sub-divided further to the point of no return.

For Mother, today will have no flowers, cards, presents, chocolates, tacky ornaments with "To the Best Mum In The World!" lovingly etched upon their surface, no visiting offspring, no dropping by sister, no high-pitched telephone calls from shy little grandchildren.

Today will be a day for Mother, with the eager support of her doting husband, to reflect on how badly she has been treated by her family, when really she should be looking closer to home, and within her own heart.

I'm sad for what could have been.

I'm not just sad anymore - I'm angry, but by being angry inside and not expressing it to the focus of my anger I'm left with this unresolved issue and all this stress, and we all know what that can do to the system. I thought writing it down might help. It hasn't.

Left to Right: My Gran, me(aged 8), my mother, my brother. At her 2nd wedding in 1975

Is it an ache? Is it a pain? YES, It's Fibro-Man!!

I used to feel, as a man with fibromyalgia, wholly embarrassed at my situation. I tried for years to conceal the intense agony I was suffering every day. I'd try to carry on with daily life in as much a normal way as I could. Doing the gardening, decorating, cleaning windows, laying carpets, building flat-pack furniture - all the usual stuff a normal healthy married man in his mid to late thirties could, and should be able to, do with ease. Except it wasn't easy. Nothing was easy, cutting the grass left me in agony. If I mentioned it to my family they'd respond with "Oh, for heaven's sake Gary, you've only cut a little lawn!" I'd suffer in silence, embarrassed at the fact that it really shouldn't have left me feeling so much pain. Feeling less of a man each time I mentioned having pain anywhere, everywhere in my body. If I had to disassemble the vacuum cleaner to unclog it, or fix the belt, unscrewing the screws left my arms feeling bruised for days afterwards - like I'd done a thousand push-ups. That's not normal for anyone, let alone an otherwise fit man.

Although I was initially given a 'preliminary diagnosis' of fibromyalgia in 2003 (when I was 37) it wasn't until last year that it was confirmed as fibro - having spent the preceding eleven years visiting the doctor more times than I visited my workplace, and having ruled out every other ailment known to man. Along the way I became stressed, and the stress made things worse. I developed severe pains in my gut, kept throwing up and running to the loo, they diagnosed Crohn's disease in 2008. By hiding things I'd taken the stress internally and made my situation ten times worse. Now, I not only had to cope with the pain of fibro but also the new, life changing disease called Crohn's! Both incurable, only manageable - and barely manageable at that.

So, knowing what I now know, why did I hide my illness for so long. It's not the fact that it wasn't fully diagnosed or that I thought it might be 'all in my head.' It was embarrassment. Pure and simple. I was a man with responsibilities. I had a stressful job, my clients relied on me, my family relied on me. How could I be everything everyone expected me to be when I was in so much pain, or when I couldn't drag myself away from the bog?

Is it an ache? Is it a pain? Yes, it's FIBRO-MAN!

I now know that I'm not alone. There are millions of people in the same, or worse, condition as me. Most are women it's true, but that wasn't the cause of my embarrassment. It was purely and simply the fact that I couldn't be the 'man' I (and only me) expected me to be. Strong, dependable, do anything for anyone kind of man. 

But I'm not. I accept that now. I'm "Fibro-Man", with a loving and understanding wife and family, who stood by me through it all and will continue to do so - providing I don't try to be something I'm not and end up killing myself.

I'm "Fibro-Man" and proud! Now fetch me my walking stick!

As Coincidences Go - This Has To Be The Strangest..

Way back in 1989, whilst I was working as a quality auditor in a plastics injection moulding factory, I began to develop horrendous pain in my left foot whenever I walked. It only happened when I was at work and wearing the heavy workwear safety shoes I'd been supplied with, but over time it got worse and I visited the doctor as over the counter pain relief hadn't worked.

The doctor didn't have a clue so he referred me to a specialist who diagnosed Morton's Neuroma - a benign growth over a nerve ending between the third and fourth toes. Ultrasound and steroid injections didn't work - so I ended up having an operation to remove the nerve and growth. Some months later the pain returned - this time in my right foot. Another Morton's Neuroma - another operation and all was fine until 2001/2, when I started showing the symptoms of fibromyalgia and was eventually diagnosed in 2003.

This morning I found this article - Is Morton's Neuroma Linked to Fibromyalgia?   

Again - it's more common in women than in men - they blame high heels - though that was definitely not the cause for me! It was the work boots, honest!

Looks like I've been fibromyalgic for a lot longer than I thought!!

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!!

I can stand the pain - it's the gut turbulence that affects me most!

Of all the many symptoms of fibromyalgia I find the upset bowels and digestion problems the most debilitating.

I have pain constantly and, over the years, I've learned to live with or manage it in my own way, but the crohn's disease I find the most frustrating and soul destroying symptom of my auto-immune system failings.

The fact that it can turn itself on and off in the blink of an eye - so I go from normal, healthy, quiet gut at 9am to full blown diarrhoea and painful flatulence at 9.45am then back again by 6pm, or not, depending on how long it wants me to suffer.

There's no predicting it. There's no eating or avoiding certain foods (in my experience) There's no rhyme or reason to it. It just starts, last a few hours or a few days, then stops and comes back a few days later or a few weeks later or, if I'm exceptionally unlucky, a few hours later! It can take the form of painful bloating and acid reflux, or painful bloating, acid reflux, nausea, diarrhoea, stomach and arse cramping, excessive wind, ultra-urgent diarrhoea or constipation, or a combination of all of these!

It's the unpredictability of crohn's that upsets me the most. I can predict when and how my pain is going to affect me - because it's there all the time and I "just get on with it." 

But the crohn's is 'quite literally' a pain in the arse in its unpredictability. Of all my conditions it's the one that makes me the most anxious, the one that gets me wound up to the point of raving maniac and the one that controls how my life is lived because at the slightest hint of a flare I batten down the hatches and all other activities stop and, as a result, it's the one that affects my family the most too.

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.....

Saturday - Dad n Daughter time

Emily with Pepper (Our cat of 17 years who sadly died in February)

On Saturdays my wife Lesley heads out to work at 9.30am which means Emily and myself are left to do our own thing - this usually involves lounging aound the house, a trip to the local shops or a trip to the park. We'll both admit that lounging around the house is our favourite Saturday pastime
- and I have to consider how I'm feeling in terms of health conditions before we make any firm plans to venture outside!

Emily

On the odd occasion when we do go out it's usually up to Stewart Park in Middlesbrough - home of the Captain Cook Birthplace Museum and our favourite cafe, Henry's, where we indulge ourselves with their delicious bacon butties and coffee and sweets!

It's our favourite place in Middlesbrough.

Saturdays have become Dad n Emily days! Restful together time when we can craft, draw, watch TV or nip out for a bite to eat - and chill.

Dad in silly hat!

We love Saturdays!

I'm thankful that, in Middlesbrough, we have everything we need on our doorstep - the park is half a mile from our house and if we drive for five more miles south we have access to the beautiful North Yorkshire Moors National Park - I tend to moan a bit about our town but it really couldn't be positioned better for amenities.

Good Luck Red Nose Day 2015

From the Great Comic Relief Bake Off to Dermot's Day of Dance, there's loads going on this Red Nose Day. See what's happening by clicking here.

Comic Relief do an enormous amount of great work, both at home in the UK and across the world, to support those in need.

Good luck for the day!

Crohn's Flare or Medication Switch?

I mentioned a while back in this blog that I was on Pregabalin (300mg twice daily) - well, I started to get an unwanted side-effect: extreme dizziness, which was making working and even standing up unpleasant and/or uncomfortable so three days ago my doctor switched me onto Gabapentin (100mg three times daily) and as soon as I started taking them I started to get the symptoms of a flare up of my Crohn's Disease. Horrendous stomach cramps, diarrhoea and nausea, and last night I thought I was going to have to go to the hospital because of them. 

I'd managed to get through the day in relative discomfort and in the evening had (just about) managed to get through my shift at work - though I was clearly under-par, I got home at 11.30pm and went to bed but couldn't sleep because of the pains inside. At 3am I was on the toilet trying desperately not to pass out. The pain in my gut was unlike anything I'd had before. I was considering calling an ambulance when it dawned on me - could it be the new tablets?

I don't usually read info leaflets in tablets and in any case there hadn't been one with these new ones, but the pains were so bad I had to know if there was a link so I searched "side effects of Gabapentin" This is what I found:


Common: More than 1 in 100 people who take Gabapentin

• abnormal gait
• abnormal laboratory test results
• abrasion
• accidental injury more likely
• acne
• back pain
• blood and bone marrow problems
• breathing difficulties
• bronchitis in children
• changes in appetite
• confusion
• constipation
• convulsions in children
• coordination problems
• cough
• depression
• diarrhoea
• difficulty sleeping
• double vision
• dry mouth or throat
• eye or eyesight problems
• feeling anxious
• feeling nervous
• feelings of hostility
• flatulence
• flu or flu-like symptoms
• fractures
• general feeling of being unwell
• headaches
• hyperactivity or aggressive behaviour in children
• impotence
• indigestion
• infection of the ear in children
• inflammation of the gums
• itching
• joint pain
• memory problems
• mood changes
• muscle twitching
• muscle pain or tenderness
• nausea
• oedema of the extremities
• pain
• pharyngitis
• raised blood pressure
• reflex problems
• respiratory tract infection in children
• rhinitis
• sensation changes such as paraesthesia and hypaesthesia
• skin rash or rashes
• speech problems
• stomach pain
• swelling of the face
• tooth problems
• tremors
• unexplained or unexpected bruising
• unusual thoughts
• vasodilatation
• vertigo
• vomiting
• weakness
• weight gain

(I've highlighted every side effect I experienced during the last 48 hours)

The stomach pains, flatulence and diarrhoea still haven't subsided and I've vowed to myself to never take another Gabapentin. So it looks like another consultation with the quack when I can drag myself away from the toilet! Looks like I'm going to have to manage with just cocodamol for the time being.

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!!

Friends with benefits.

Here in the UK, over the last four and a half years, the coalition government has, under the guise of austerity, consistently and relentlessly, cut or curbed the benefits of those least able to defend themselves, whilst also removing, or making more difficult, the ability for claimants to appeal against the decision. 

The introduction of a number of heinous laws - such as bedroom tax, benefits cap and changes to the way benefits are calculated and awarded - has had a direct impact on the disabled. Propaganda against benefit claimants has never been so 'popular' - with mainstream TV shows depicting those on benefits as 'scroungers' and 'layabouts'. And, whilst it is fair to say that the last Labour government created a benefits culture, it is also fair to say that this coalition has created and nurtured a big-business and banking culture which rewards those at the top (and whose actions caused the banking collapse in 2008) who do their best to avoid taxes and reward themselves with massive bonuses without risk of any financial penalty. Their feeble protestations that "We're all in this together." no longer ring true, when you showcase their actions against those on benefits compared with their actions against their party paymasters.

And there seems to be no opposition to this, with both the Tories and Labour promising even further restrictions on benefits if they win the upcoming general election on May 7th. They're not promising to cap bankers' bonuses, they're not promising to invest in jobs and education, they're not promising to curb the movement of big business' profits to offshore accounts in order to avoid paying UK corporation tax - they're promising to continue the austerity path and attack benefits - because, as we all now know, people on benefits are scum, lazy and work-shy scroungers who live the high life at the taxpayer's expense.

The reality couldn't be further from the truth for the vast majority of benefits claimants - but they're all 'tarred with the same brush' these days. ATOS (who I've cynically renamed with the prefix "Couldn't Give") - one of the private companies tasked with assessing disability benefit claimants, and on whose board of directors probably sit a number of Tory ministers, has been known to assess as "fit for work" those close to death. The stories of their failings are widespread folklore across the internet - though, oddly, not in the mainstream press. Here's one REPORT from a few years ago.

I agree that the benefits system in Britain needed fixing, but fixing - not decimating!  There needed to be better policing of the system to weed out the minority of claimants who abuse it, rather than the 'one-size-fits-all' or 'all-claimants-are-scroungers' approach that the coalition adopted. And the fact that no mainstream political party seems to want to remedy this situation leaves me floundering when it comes to casting my vote in May.

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?

It's March! Spring is just around the corner.

I love the Spring. 

It brings with it a visible renewal of life after the long dead winter, and a sense of hope that things are getting better.

But it also brings a sense of dread (for me) because Spring is also the time that we start......

!!!GARDENING!!!

Oh, the joy of gardening!!!