Moving Home, Downsizing & Getting Back On Top of Things!

For far too long I have struggled to maintain a semblance of balance between my home, work and online lives. I know now that juggling several websites and blogs is not only time consuming but also, with my conditions, ruining my 'me' time and having an impact on my health and family life. This is possibly one of the causes of my grand mal depression last year - and why, ever since, I have avoided my blogs and sites (to a certain extent) only posting when I felt I absolutely must.

What I think I'm saying is that I've become over-stretched by trying to maintain too many things in too many places, blogs on weebly, blogs on blogger, sites on Fibro and trying to build a social site for fibro / chronic pain sufferers. I've confused myself as well as my readers.

However, I have always liked blogging so I don't want to abandon it altogether, though I definitely need to trim off some of the branches that are no longer a pleasure. So, with immediate effect I am transferring this blog to a new site, where I will endeavour to combine every element of my online activities - A blog, (singular) with links to each of the two main fibromyalgia sites (fibromen.org and FibroMates.com) The blog and site will be hosted through Wordpress (sorry Blogger) The site will also encompass elements of my other activities and hobbies - namely web site development and domains, hosting, email sales with my micro business (GEEMAC and GEEMAC Web)

I will endeavour to reconnect with those friends I have made through this blog over time - so this isn't goodbye, merely adieu until we meet again at the new site:

My Fibro Life

I look forward to seeing you there. Thanks to those who have followed this blog and my many struggles over the past five years.

Gary

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.....

My Mid-Life Rebirth

I've been absent from most social media and websites for a period of some seven months.

I apologise if my disappearance caused anyone any concerns.

The truth of the matter is that I suffered some kind of meltdown. Years of pain coupled with months of depression finally caught up with me and I decided, for my own sake and the sake of my family, to shut down everything!

I avoided my computer. I left contractual obligations unmet and projects unfinished, I stopped responding to emails and, eventually, gave up even opening my email client on my phone or tablet.

I sought help from my doctor, who prescribed Prozac. The prozac kicked in after three weeks and for a few weeks I felt bouyant enough to concentrate on getting myself fully better. I had some hope of beating the negativity I'd been feeling for months. But within a few weeks the Prozac had stopped working - or had worked too well - because I suddenly found that my whole personality had been transformed, and not in a good way. My wife and daughter bore the brunt of this new "personality." I became unemotional, withdrawn, spiteful, argumentative and downright bad-tempered.

My life, in just a few weeks, had irrevocably changed. My marriage suffered (beyond repair) and we are now still living in the same house, but only because we cant afford to divorce or sell the home we had made for our daughter's future. If this situation continues to work for us both then at least Emily will always have a home once the mortgage is paid off - but it's far from ideal for either of us.

I became a different person - in so many ways I'm not going to describe here - I changed, and not in a good way.

At the time of writing this- it is now January 14th 2017 - I have reached a point where I feel I can function. To me I'm back to my old self - but it seems, that to my family, and in particular my wife, I am still the person I became in early summer last year.

Being in constant pain meant I was prescribed many different drugs - all of which played a part in my downfall. Most notably I was prescribed Prozac - which, when combined with morphine, amitriptyline, cocodamol and copious quantities of alcohol, completely altered my personality in the way already stated.

I am still in constant pain - despite the drugs. Despite the drinking. Despite everything.

Pain is now my life - emotionally as well as physically. Pain rules. I no longer take Prozac. I no longer drink to excess, I limit my morphine intake to days when I'm not working. Yet still - pain rules.

PAIN RULES as it has done for the past fourteen years.

It reached a peak in early summer 2016. I took prescribed medication to help. It didn't help.

I took advantage of the breakdown of my marriage to indulge in a different way of life - in the hopes that being true to myself would somehow heal my pains- it didn't.

I undertook a course of psychological counselling to try to beat my depression. It didn't work, but it did force me to take a good look at myself, and the overriding facts became clear (so in that way I suppose the counselling did work.) Pain was ruling and ruining my life because I was letting it take over. From waking to going to sleep pain was in my every thought and action. Pain, pain, pain. More pain and a little pain added for good measure. I was encased in pain. Not merely physical pain, but mental pain too.

I forced myself to join a gym. I turned the mental pain into more physical pain - but there was a reason for this pain. A cause to my suffering that I could identify - I was exercising my aching muscles and now they ached because I was working out - not because of the fibro - I was causing the pain and, in this way, it became more acceptable psychologically.

Being able to identify the cause of at least some of my pain made it a whole lot easier to accept - plus this pain has added benefits in that I look much better, physically, than I've ever looked. I have muscles - the guys at work now compare themselves to me rather than the other way of me comparing myself to them (and feeling inadequate like I always did) I'm fifty one, but I feel so much better than I did when I was twenty one.

Some might call it a mid-life crisis. I call it my mid-life rebirth.

So Sick of My Hat of Many Rocks.

Banging My Head on a Brick Wall

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

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

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

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

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

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

Coping with Isolation

Often one of the worst aspects of having a chronic pain condition is the abject loneliness of it all. Old friends seem to drift away - unsure of how to deal with you anymore, or you've pushed them away because you fear having to explain what's wrong with you, again and again, doctors and other medical professional seem to wash their hands of you, having treated you (unsuccessfully) so many times, even family has difficulty seeing you in so much pain all of the time.

I know, from my own experiences how hard it is to come to terms with living in absolute agony all the time - that would be bad enough on its own, but to then be isolated because of it adds salt to the wounds. It's no wonder so many of us develop severe depression.

I've tried so many times to meet other people with similar / same conditions just to have someone to talk to about everything we have to contend with but, apart from making many 'friends' on social media platforms like Facebook, Twitter and Google+, I've not yet met anyone from my local area of North Yorkshire. I know there are people with the condition in my area as my GP has told me he's seen many people with it, so where are they, and why aren't they forming a local support group or just meeting for a coffee and a mutual moan every so often???

Wouldn't it be lovely if there was a site where I could type my home city, town or county and be provided with a list of people in that locality who I could make friends with and meet up with occasionally, who I could ask for advice or support and discuss treatments / medications with, face to face, over a coffee? Well, unfortunately, there isn't any such site.

This is why I have decided to create one! FibroMates is my attempt to get as many people as possible to build a profile which can be used to inform visitors who you are, what you suffer from, how you deal with it and, more importantly, can be searched for by others in a similar situation and who live locally to you. FibroMates will endeavour to bring people together who can, if they wish, meet for a chat or talk on the phone. It's all designed to enable chronic pain survivors to feel less isolated in their conditions and to give them a local 'friend', outside of family or existing friend circles, who will understand what they're going through, without judging.

It's early days, but since I started asking my social media friends to start building profiles on the site we've generated a lot of interest - not only in the UK but everywhere from Arizona to the Netherlands. Everything about the site will be free - just create a profile. The more profiles built the bigger and better the site will be at bringing people together.

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.

Chronic Pain & Insomnia - Treatments

In this post I'm going to look again at the disturbance to sleep caused through chronic pain and the treatments sometimes used to address the issue. Often one of the cruelest symptoms of chronic pain is the lack of sleep it causes. It's bad enough that you find yourself in pain when going to bed and on rising in the morning, but to be unable to get any sleep at all compounds the situation and, in turn, leads to a worsening of other symptoms such as depression. Insomnia will often improve by making changes to your bedtime habits. If these don't help, your GP may be able to recommend other treatments.
If you've had insomnia for more than four weeks, your GP may recommend cognitive and behavioural treatments or suggest a short course of prescription sleeping tablets as a temporary measure.
If we assume that the underlying cause of your sleeping difficulties is your fibromyalgia / chronic pain condition, treating this may be enough to return your sleep to normal. But, as we all know, finding an effective treatment for this is difficult!

The various treatments for insomnia are outlined below. You can also read a summary of the pros and cons of the treatments for insomnia,* allowing you to compare your treatment options.

Good sleeping habits

I've discussed this issue previously on this blog but it's worth repeating. There are seven 'rules' for developing a healthy sleep pattern:

• establishing fixed times for going to bed and waking up
• creating a relaxing bedtime routine
• only going to bed when you feel tired
• maintaining a comfortable sleeping environment that's not too hot, cold, noisy or bright
• not napping during the day
• avoiding caffeine, nicotine and alcohol late at night
• avoiding eating a heavy meal late at night

Read more about self-help tips for insomnia.

Cognitive and behavioural treatments

If changing your sleeping habits doesn't help, your GP may be able to refer you for a type of cognitive behavioural therapy (CBT) that's specifically designed for people with insomnia (CBT-I).
The aim of CBT-I is to change unhelpful thoughts and behaviours that may be contributing to your insomnia. It's an effective treatment for many people and can have long-lasting results.
CBT-I may include:

• stimulus-control therapy – which aims to help you associate the bedroom with sleep and establish a consistent sleep/wake pattern
• sleep restriction therapy – limiting the amount of time spent in bed to the actual amount of time spent asleep, creating mild sleep deprivation; sleep time is then increased as your sleeping improves
• relaxation training – aims to reduce tension or minimise intrusive thoughts that may be interfering with sleep
• paradoxical intention – you try to stay awake and avoid any intention of falling asleep; it's used if you have trouble getting to sleep, but not maintaining sleep
• biofeedback – sensors connected to a machine are placed on your body to measure your body's functions, such as muscle tension and heart rate; the machine produces pictures or sounds to help you recognise when you're not relaxed 

CBT-I is sometimes carried out by a specially trained GP. Alternatively, you may be referred to a clinical psychologist.
The therapy may be carried out in a small group with other people who have similar sleep problems, or one-to-one with a therapist. Self-help books and online courses may also be used.

Sleeping tablets

Sleeping tablets (hypnotics) are medications that encourage sleep. In the past, they were frequently used to help with insomnia, but they're used much less often nowadays.
They will generally only be considered:

• if your insomnia is severe
• as a temporary measure to help ease short-term insomnia
• if the good sleep habits and cognitive and behavioural treatments mentioned above don't help

Doctors are usually reluctant to recommend sleeping tablets in the long-term because they just mask the symptoms without treating the underlying cause.
They can also cause potentially dangerous side effects, such as drowsiness the following morning, and some people become dependent on them.
If they are recommended, you should have the smallest effective dose possible for the shortest time (usually no more than two to four weeks). 

Over-the-counter sleeping pills

A number of sleeping tablets are available to buy over the counter (OTC) from pharmacies. These are usually a type of antihistamine medicine that causes you to feel drowsy.
Taking OTC sleeping tablets regularly isn't usually recommended if you have insomnia, because it's not clear how effective they are, they don't tackle the underlying cause of your sleeping difficulties and they can cause side effects.
In particular, they can cause you to feel drowsy the next morning, which can make activities such as driving and operating machinery dangerous.
Speak to your GP for advice if you find yourself needing to take OTC sleeping tablets regularly.

Benzodiazepines

Benzodiazepines are prescription medicines that can reduce anxiety and promote calmness, relaxation and sleep. Your GP may prescribe them for a short time if you have severe insomnia or it's causing extreme distress.
Examples of benzodiazepines include temazepam, loprazolam, lormetazepam, diazepam and nitrazepam.
Long-term treatment with benzodiazepines isn't usually recommended because they can become less effective over time and some people become dependent upon them.
They can also cause a number of side effects, including:

• drowsiness and dizziness, which can persist into the next day
• finding it difficult to concentrate or make decisions
• depression 
• feeling emotionally numb
• irritability

You should avoid driving if you feel drowsy, dizzy, or unable to concentrate or make decisions, as you may not be able to do so safely.

Z-drugs

Z–drugs are a newer type of medicine that work in a similar way to benzodiazepines and are similarly effective. They include zaleplon, zolpidem and zopiclone.
As with benzodiazepines, long-term treatment with Z–drugs isn't normally recommended because they can become less effective over time and some people become dependent on them.
They're usually only prescribed for a maximum of two to four weeks.
Side effects of Z-drugs can include:

• drowsiness and dizziness, which can persist into the next day
• feeling and being sick
• diarrhoea 
• increased snoring and breathing problems during sleep
• dry mouth
• confusion

Z–drugs can also sometimes cause psychiatric reactions, such as delusions, nightmares and hallucinations. Contact your GP if you experience any of these effects.
Read the National Institute for Health and Care Excellence (NICE) guidance on zaleplon, zolpidem and zopiclone for the short-term management of insomnia for more information.

Melatonin (Circadin)

For adults aged 55 or over, a medication called Circadin is sometimes used to help relieve insomnia for a few weeks. It contains a naturally occurring hormone called melatonin, which helps to regulate the sleep cycle.
Circadin is usually only recommended for three weeks at first, but it can be continued for a total of 13 weeks if it helps.
It is unlikely to be prescribed to patients with chronic pain conditions as common side effects of Circadin include:

• headaches
• cold-like symptoms
• back pain
• joint pain

Treatments that aren't recommended

The following treatments aren't normally recommended for insomnia, because it's not clear how effective they are and they can sometimes cause side effects:

• antidepressants (unless you also have depression)
• chloral hydrate
• clomethiazole
• barbiturates
• herbal remedies, such as valerian extract
• complementary and alternative therapies, such as acupuncture, hypnotherapy and reflexology

It is also worth pointing out that long term insomnia and the treatments used to remedy it can have a negative effect on your ability to drive safely, so you should avoid driving if you feel sleepy.

It's not necessary to inform the Driver & Vehicle Licensing Agency (DVLA) unless your insomnia is caused by a diagnosed sleep disorder, such as narcolepsy.
GOV.UK has more information about telling the DVLA about a medical condition or disability.

*Source - http://www.nhs.uk/pages/home.aspx

Telling Tales - A Cry For Help!

I've been writing about my fibromyalgia journey for a few years now and I'm pretty sure that most of my readers are fully up to speed with how my fibro affects me on a day to day basis. I write about it to help in my personal crusade to raise awareness of the fact that men get fibro too - I'm also pretty sure that that fact is now well known in the chronic illness community and it is getting out to the wider community too - even some doctors believe it!!

At the moment I am in the middle of a major flare - which is why you haven't seen me posting very much in recent days on social media etc. I'm sorry about that as I do like to promote FibroMen as often as I can. The truth is I am depressed and my depression is making me extremely tired, so when I'm not at work I have to rest. I'm sure you understand and can empathise with that.

So, I'm throwing open the doors to allow others to 'fill-in' for me whilst I'm resting.

I operate another site called "My-Fibro-My-Algia" - and, as you can imagine from the title, it's about fibromyalgia and other chronic pain conditions - not just in men, but in everyone! The aim of the site is to get people talking about their condition - sharing their journey of hope over adversity with chronic pain conditions. The ultimate goal of the site is raising awareness but it is hoped that visitors will learn more about their own conditions through positive stories by real sufferers. They don't all have to be positive of course - your story might be one similar to mine, where you're currently in a bad place. We don't want to pull any punches. Living with a chronic pain condition is difficult at best and downright unbearable when things get really bad. We want our readers to understand this - especially the newly diagnosed who might be struggling to come to terms with their diagnosis - there are going to be good days and bad days, as with everything in life, but our message will be "You are not alone."

The site is in need of some content - and that is where you come in. Please take the pressure off me for a while and help me by writing a short piece about your "Journey So Far" with your condition. You can write about getting a diagnosis, what your life was like before and after diagnosis, treatments that failed, treatments that worked, alternative therapies, exercising, voodoo, devil worship, witches covens, witch doctors - literally anything that you have been through on your journey with your chronic pain condition.

By sharing your story you'll be doing three things:

• HELPING TO RAISE AWARENESS

• INSPIRING HOPE IN THOSE NEWLY DIAGNOSED OR STRUGGLING TO COME TO TERMS WITH A DIAGNOSIS

• HELPING ME TO GET OVER THIS FLARE AND DEPRESSION BY RESTING 

(I can manage the cutting and pasting to share your stories though!!)

So, if you're interested, and have the time, I'd appreciate any help I can get to get more content on the site.

You can share your story HERE.

Thank you. I'm off back to bed - when I wake I hope to have an inbox full of your stories!!

(Shared with Chronic Friday Linkup and Chronic Illness Bloggers )

Depression & Fibromyalgia - An Admission.

I know, I know, we've been here before!

I wrote way back in October / November of last year about how I was battling some really dark clouds in my life. I put it down to turning fifty and being in constant pain and I was determined to overcome it without the need for medication.

Just after Christmas I thought I'd beaten it. Things began to look brighter. I was still in chronic pain and  I had, in the time since I last wrote about being depressed, been prescribed Oramorph to take alongside my Cocodamol - despite my being unwilling to go down the drug guinea pig route again. But, up until last week, everything seemed fine. I'd beaten my depression.

Then, a week or so ago, I woke up feeling really miserable one day. Nothing specific that I could put my finger on as the cause, I just felt glum. I thought I might be getting another cold and brushed it aside, but I was very snappy with the family and really easily irritated.

On Tuesday my poor, long-suffering wife, made some innocuous remark about something (I can't even remember what it was) and I blew my stack. Said some awful things and really lost control. The worst of it was that I lost control in front of our thirteen year old daughter. 

Now, even when I'm in the wrong and I know I was in the wrong on this occasion, I'm a stickler for not backing down and I used the old "well if you hadn't said / done such and such, I would never have said what I said" chestnut - which only served to amplify my wife's anger towards me and the row went on for several days. In fact, it was still going on this morning - six days later.

I had a pre-booked appointment to see my GP to review my medication at 10am today and when I walked into his consulting room everything (apart from the row) was fine. I sat down and he asked how I'd been and I just burst into tears and let it all pour out. I felt such an idiot. Normally when people ask how I've been I say "Fine" or "Not so bad" - it's a standard for fibro sufferers the world over. Today I let the standard fall. My wall, usually so impenetrable, collapsed to dust and the flood barriers opened.

Clearly my depression had not been beaten. I'd just bottled it all up, put the cork in the bottle over Christmas and New Year only for it to explode today in a spectacular, embarrassing and totally non-British way!

I walked out of the room fifteen minutes later with a prescription for Duloxetine in one hand and a wet tissue in the other, dabbing tears away from my bloodshot eyes as I walked into the waiting room, where my wife sat waiting with a smile on her face. We wrapped our arms around each other and hugged. I blubbed a pitiful, guilt-laden "Sorry" into her shoulder. 

She'd known all along that this day would come.

Please Help us Raise Awareness of Fibromyalgia in Men.

I've been busy designing banners (no better activity for a dull Sunday afternoon!!)  - for no other reason than to use in our never ending campaign of awareness raising - please help yourself and share far and wide!! I'll be sharing across our social media channels in the coming days

Searching Health? - Don't Let Google Scare You!

I once searched "Fibromyalgia Symptoms" in my favourite search engine and it returned over thirteen million links. The first page returned included no less than four paid-for ads - where businesses pay a fee to be placed higher in the list. 

What struck me more than anything was the lack of relevance to my requested search. I had wanted a simple list of the symptoms of fibromyalgia, what I got was page after page of my kind of stuff - sorry bloggers of the world - solitary blogs writing about one of their symptoms of fibromyalgia. They appeared in the list because they'd placed 'labels' in the key words of their post such as "Fibromyalgia" and/or "Symptoms" 

So, without typing "A List of the symptoms of fibromyalgia" in my initial search I got over 13 million returns. (BTW actually typing in "A list of the symptoms of fibromyalgia" reduced the returns to a little over three million - again it included four paid-for ads at the top of the list.) Obviously, my favourite search engine has become over-crowded with irrelevant twaddle!

I don't know about you, but with my chronic pain I find typing unbearably painful at times - (I've been writing this post for three days!) - having to be so specific when entering my search criteria in to a search engine, in order to get the results I want, is not the best thing for me to do. I want to be able to type "fibromyalgia" and get all the information I need in one click of the mouse.

That's when I came across MedNexus. MedNexus is a health search engine that does exactly what you would hope a health search engine would do - give you straight answers to straight questions - no sponsored advertising crowding out the facts, no scary, turn my world upside down results like "Your itchy skin could be skin cancer." Just type in "Fibromyalgia" and the results will be there before you've even finished typing. It's THAT SIMPLE.

Why waste hours trawling through page after page of irrelevant results from Google when you can type your health query into MedNexus and get everything from the basics to in-depth articles and reviews that are current and relevant. There's everything from Asthma to Xenophobia - uncluttered, concise and categorised - without the dross. 

This is what MedNexus tells you about Fibromyalgia.

Being Overwhelmed

Overwhelmed is a word I used to associate with joy - "I'm overwhelmed to meet you!", "Your beauty overwhelms me!" I've never thought of it in the context of being overwhelmed by an illness. But that's how I've been feeling for a while now.

My illness is overwhelming me. I feel like it's beginning to become me, to define who I am, and I don't like it one bit.

I'm determined to not let fibromyalgia become me. Like some creeping algae slowly enveloping me in its insidious green slime. So far it's taken over so many aspects of my life - work, social, family. 

There's so much of the life I once knew that is now stagnated by fibromyalgia. I'm no longer able to plan anything with any certainty, family outings have to be decided on the day and can end abruptly half way through an activity, work has been reduced to just 16 hours a week - and still I have to call in sick some days, and my social life ended about four years ago.

Accepting you have an illness and accepting the limitations that illness places upon you is one thing, but allowing the illness to define who you are is an entirely different kettle of fish, and it's something I don't want on my epitaph - "Here Lies That Guy with Fibro."

I suppose I'm going to have to get myself a new mindset to accomplish this feat. I definitely need a shot of positivity to begin with, so I'm throwing this out there to ask:

"How do you keep yourself from being overwhelmed by your illness?"

"How do you stop yourself from becoming your illness?

 Answers on a postcard to.... or you can just post a comment!

All suggestions will be considered seriously.

   

Doodling For Pain Relief.

I like to doodle. I've been a doodler all my life. As far back as I can remember, in times of stress, I'd doodle some nonsense creation or other. I got through school with doodles - I avoided the physical attention of the bullies by drawing weird looking characters to amuse them and they'd laugh instead of punching my lights out. If only they'd known that some of the doodles were of / about them!

In later life, through protracted meetings about targets and growth, I'd doodle obscene caricatures of the meeting attendees! It has kept me sane, or possibly insane, throughout my life.

These days I doodle to focus on something other than my pain. Writing in general tends to set off pains in my hands and fingers, but doodling needs a more relaxed hand to let the creativity flow so I can doodle for far longer than I can write.

I'm definitely no artist - though I do try, but sometimes what's intended to be a human eye turns into a slug, and most of what I doodle turns out cartoonified or bizarre. The thing is, it relaxes my mind. Helps me focus on something different and, for the breifest of times, takes my pain away.

Over the years I built up quite a collection of nonsense art - but most of it was accidentally thrown away last year - so I set up a web site to store my creations safely, for posterity and to allow others to share their ridiculous creations should they wish to do so - www.sillyart.co.uk is the site, if you'd care to take a look at some of what my odd mind churns out. (It's in development but will be updated soon with even more of my madness!) You might even want to share some of your doodles there.

Not all of my creations turn out to be doodles, some I'm actually quite pleased with, like this one: 

. But most turn out to be bizarre - like these:

How do you relieve the stress of being in constant pain?

If, like me, you find yourself doodling some mad creation, or even an actual, real, work of art, I'd love you to share it with me on the site - you can upload your art at www.sillyart.co.uk/contact.html .

Happy scribbling!

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.

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.

Resolute for 2016.

On this, the penultimate day of the year, I took a good look at the posts in this blog and one word kept resonating in my head:

Misery.

And another:

Doom.

And another:

Depression.

FibroBlog is depressingly miserable and doom-laden.

So, in keeping with the tradition upheld at this time of year, I resolve to cheer up FibroBlog and make it the blog it was supposed to be - stories of success against adversity, news of research into treatments, medical breakthroughs and positivity!

It was quite obvious that the writer (me) was suffering from some sort of negativity implant.

You can get an update on how I'm feeling over at my personal blog My Fibro Blog, but from January FibroBlog will be about positivity and hope.

And to kick things off in a positive way here's a lovely picture of 2015 being crushed to death by 2016.  Happy New Year to all followers and visitors.

Gary

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.

Season's Greetings

FibroMen would like to wish all our readers a very Merry Christmas and A Peaceful and Pain-free New Year.

 

Being A Fibro Dad at Christmas

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

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

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

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

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

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

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

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