The Flying Nun

Back in the 1950’s the strength of lasers was measured in gillettes, based on how many razor blades they could penetrate. On Friday last an OAP nun from Ireland completed a skydive to raise funds for Aware (a voluntary organisation founded to assist those directly affected by the illness of Depression) but she had also gone diving on the Great Barrier Reef 4 or 5 years ago.  

Every fibromyalgia fighter has a story about it interfering with your memory and cognitive skills. I’ve said it before in this blog that I once watched a match and later that day had no idea whatsoever what the score had been. As a result what lodges in my brain throughout the week can be hit and miss. Unfortunately it is impossible to choose which pieces of information I retain and which pieces are lost to the wind.

But back to measuring lasers. I follow OMG Facts on Twitter and whether all their facts are 100% accurate or not doesn’t bother me, most of them are fairly entertaining. Somehow the tweet about laser measurement stuck in my head and I couldn’t shake it. It set up basecamp beside the memory of Manchester United’s team-sheet from the 1994 FA Cup Final. As I said we can’t choose which things we remember.

I saw the tweet about the lasers on Tuesday and I was wondering why I had retained that information. Then on Friday when I heard about the flying nun raising funds for Aware my ongoing battle with depression meant I took a big interest in the story. Somehow yesterday, given a little time to relax, I managed to draw a line between these two disparate stories but not before linking a story from my own life to them.

During last week I did a big grocery shop but getting the food from the boot of my car inside can take plenty of trips. The last thing left in my boot was a 6-pack of 2 litre bottles of water. I was hot, sweaty, exhausted and a little dizzy when I got back to the car so I opened one of the bottles and sat sipping that while I got my breath back.

My reverie was interrupted by a young lad playing football on the green with his mates. He had seen the jersey I was wearing and asked who the team was and did I play for them. I told him it was the jersey I’d worn for my schoolboy team but that I didn’t play anymore. Without missing a beat he asked me if I wanted to join them for a match on the green. I would’ve loved nothing more but I was still a bit dizzy and I knew my joints and muscles wouldn’t allow me to join in so I just told him the teams had even numbers already and I didn’t want to mess that up.

So how do I link these stories?

Not being able to join in with the game of football annoyed me and continued to race around my brain. Slowly but surely through the latter part of this week it began to upset me more and more. It was a simple situation but it only served to remind me of all the things I’ve had to give up since my fibromyalgia diagnosis.

You see for me the line between good mental health and despair is as fine as a razor blade. A natural question of a young lad asking an older footballer if he wanted to join in revealed every other struggle and battle I go through each day. Once that gap is opened, even if it’s as fine as a razor blade, every insecurity and loss piles through and suddenly I’m distraught.

Thankfully for me though, a flying nun skydived in to my week and offered me some perspective. Yes I’m not feeling well this weekend but I’m not alone. Listening to her talk about the great, and vitally important work, done by Aware encouraged me to share my story. It just happened to be my parents on Friday night but everyone in my support network has at one point or another offered an ear for my troubles. I told my parents what had happened with the football game, I told them how lost and down I felt and I had a good cry for myself.

So I’ll continue to take my medications, I’ll try to remember to talk through my issues and build my defences so that such a relatively small incident doesn’t have me crying to my folks on the couch. That’s the plan but f**k it, if I need help I’ll be asking for it. I’m not too proud to say I get overwhelmed at times but similarly, I’m learning not to be too proud to ask for help.

Plan (wh)Y

 

 

 

When you are living with fibromyalgia on a day-to-day basis there are certain things that continue to crop up. You have to remember to take your medication; you have to be as selfish as you can be to ensure you get enough rest, sleep, exercise etc. But if I was to boil it down to one word, living with fibromyalgia is all about planning.

Planning helps in many, many ways. Too tired to go walking today? Plan ahead by putting your gear out the night before and have one less thing to consider. Not in a position to cook dinner tonight? Why not cook an extra portion when you are feeling good and freeze it? Invited to a party on Saturday night? Simple, plan to take it easy on Thursday and Friday, don’t schedule anything for Sunday or Monday and plan to be there on Saturday night. Fibro-fog making it difficult to remember shopping lists, names and passwords? Plan ahead and have a pen and paper close by to keep a record of new information.

Sounds great doesn’t it? If only it was as simple as it reads above. It’s difficult to get in to the routine of making lists, planning and saying no. One of the biggest parts of being young and finding your own way in life is the freedom to be spontaneous and at times impetuous. It’s very hard to do anything like this when you have to take tablets at certain times, rest at the right times and you don’t even have any money in your pocket because you can’t work.

These are some of the plans and routines that have changed since my diagnosis but what about the plans I had before the diagnosis?

Working in the pub in a job I loved I had some plans for the future. I loved that job and could see myself still working there for years and years and learning the bar game inside out. At the same time I was still playing football competitively. I wasn’t at the level I wanted to be but I planned to still be playing now and enjoying the craic and training with the lads. I even hoped that one day, as he dropped down the levels back to me, I could play a competitive match on the same team as my brother.

Then there were the financial plans I had. I would be paying off my mortgage from my salary with a few quid left over to go out when I wanted and take holidays to places other than my parents’ house. I also planned to be able to go into a shop without a spending limit constraining me. What about the social plans I had in place. They were nothing unusual, just the ability to go out with my mates when I wanted with money in my pocket and not having to worry if the party was starting past my bedtime. (Sorry DC would’ve loved last Saturday but 11pm is closer to bedtime for me than going out these days!)

None of these plans have had a chance to come true in the last few years. Slowly but surely I’m learning to readjust my plans and set new ones for the future. Of course I’m jealous of marriages and births and promotions and parties but one-day I’ll be back to ticking them off myself and as I’ve said before I’ve to take the positives I can from my situation.

So what I plan has changed and what I plan for has changed since my fibromyalgia and my new arthritis diagnosis. It’s been very difficult to readjust and it has taken time to understand what I need to do for myself each day. I still haven’t got it sorted but I’m getting there.

I almost forgot to mention something about planning before I go. I’m learning to readjust my plans, I’m learning to set new plans and see different things as achievements but there is an aspect of planning that still really pisses me off.

Take the following example. I get a phone-call asking me if I’d like to go for a walk on a Saturday morning. This ticks the boxes of getting enough sleep, then some exercise and a chat over a coffee afterwards. What could be better?

Having learnt to plan my days in advance, I take it easy on Thursday and Friday and have nothing in the diary for Sunday and Monday. I’m chuffed I’ve learnt and my plans are ready to come through for me.

So what went wrong? The worst part of planning and putting a lot of faith in those plans is when they don’t happen. I did absolutely everything I could to be there and go for the walk but I woke up in agony, with swollen joints and as tired as if I had run a marathon overnight. The damn unpredictability of fibromyalgia, and indeed arthritis, is that no matter how well you plan things you can still miss out.

So how do you plan for that? No really, I’d love to know….

My Lost Employment

It’s nearly two years now since my last day of paid employment. I drove away from the pub that night presuming I’d take a couple of weeks off, feel better and return to work. Little did I know that nearly two years later and barely 4 weeks ago, I would be driving away from the pub once again but this time I knew I’ll never work in a pub again.

On May 1st, 2008 I got the keys to my first home. I was in a full-time position, had started a pension and could see my career path laid out in front of me. But as we all know, Fibromyalgia, and more latterly Psoriatic Arthritis, is no respecter of age, sex, status, career plans or relationships. So what happens when you can’t work anymore?

Just two years ago I was working in a job I loved and I could see my future ahead of me. I’ve always worked in physically demanding jobs as a lifeguard, gym instructor and most lately as a barman. There are numerous physical demands made of bar staff, including long hours, working shifts, standing all the time, taking deliveries, changing kegs. That’s not to mention the mental demands of concentration, remembering orders, working with cash and being ready for whoever may walk in the door next.

The job while being demanding provided me with financial rewards, the opportunity to work with and meet lots of people, socialize and chat to people and also the psychological rewards of self-confidence, achievement and self-worth.

Now I have none of these.

I am unable to work and unable to socialize with my friends without extreme planning and sacrificing a few days either side of going out for dinner. I have lost friends and relationships due to my fibromyalgia and even when I can go out, I haven’t a bean in my pocket to spend as it is all earmarked and spent on bills and my mortgage. I have all day everyday off but ask any teenager about their summer holidays and they’ll tell you how difficult it is to pass the time without spending even a little money.

I’ve written here before about my depression and about how my confidence and self-worth have been eaten away to reveal a man wracked by stress, anxiety, isolation and devoid of self-confidence. No one could choose this as a lifestyle, I am unable to work and as well as the financial loss I’ve borne it has impacted on every aspect of my life.

The final straw in my pub career came on a Saturday night after a big rugby match. I was completely worn out and in agony. Who would want to be served by a barman falling asleep on his taps, limping as he walks, unable bend to pick up a glass and whose hands shake so much he can’t guarantee a full-pint? Frustration, pain and fatigue brought me to tears and I, the same man who fought back  to play football after two cruciate knee ligament operations, walked away from my counter.

And here I am in 2013 and what’s changed since I bought for my home? I have fibromyalgia and arthritis, I’m no longer in paid employment, I live in a home I can’t afford, I have no career path, I’m single, I’m depressed, I’ve no self-worth, I can’t socialize with my friends like I want.

I say none of this to play the poor mouth, I say it because it’s true. Using my medications and treatments I am much better than I have been but still not good. As someone once said; “a lot done, more to do”. This has been my experience and I would need to do more investigation to know if where I am now was inevitable once I lost paid employment.

I think this is how it has worked for me; Pain, fatigue, etc. etc. led to my physical difficulties, which made my job impossible and since both of these happened I’ve suffered the social and psychological impacts in my life. It’s not important whether the illnesses or the lost employment had a greater impact on my life. Truth is it doesn’t matter, this is where I am now and I need to get better as a man and treat all aspects of my life.

Weighty Issues

“It’s great to see him but he’s put on an awful lot of weight” she whispered, hoping I wouldn’t hear. My Granny doesn’t whisper though and I clearly heard what she said to my Dad. Wasn’t I glad I had decided to come over to visit my Grandparents in the nursing home? We soon got down to talking, well my Granddad was asleep, and all was forgiven. It didn’t need forgiving to be honest; truth is I couldn’t argue with the facts.

Questioning my diet and any weight I have gained was brought into stark focus in the last few weeks. As you know I was unable to type or use my hands efficiently for a number of weeks. I was put on a course of steroids by my rheumatologist to try and minimise the pain. It did have a little effect on my pain but it was something else it brought that surprised me.

This time last year when my sleep specialist described me as ‘obese’ I settled down to losing the weight as quickly as I could. I became very strict on the food I brought into my home. Sugars, starches, preservatives, oils, fats, sauces; everything went off the shopping list. Fresh fruit and veg, water, grilled lean meats, porridge, homemade brown bread became the order of the day. I was unable to train as I wanted so my food intake had to change. By being strict as hell at home and allowing myself to indulge a little outside I lost the weight and felt the better for it.

I have been on courses of steroids before and always found them successful in short bursts. This last time, however, a new side-effect raised its head. I was overcome with a constant, gnawing, single-minded desire for food. I was so hungry all of the time and even large meals would not satisfy me and I would continue to eat and eat and eat.

On the worst occasion I found myself roused from slumber at 3am, with an overwhelming craving for food and an emptiness and pain in my stomach. One large bowl of porridge later I was back in bed, yet when I rose at 8am I was as hungry as I have ever been despite my ‘midnight’ feast!

The problem is I’ve gotten lazy recently.

Little by little desserts, chocolate, sweets, biscuits and cakes have crept back into my diet and onto my shopping list. I have a naturally sweet tooth but this got much worse on the steroids. When I got that empty, starving feeling no amount of brown bread or vegetables or anything else would do, sugar, in any form, was the answer. Plus it doesn’t really matter what you’re chewing on when it’s late at night or early in the morning and you should be only dreaming about food.

So the time has come for me to be strict once again and remove most of the nice food out of cupboards. Having spent most of my life training my backside off, this requires a lot of will power. Training 4/5 times a week allowed me to enjoy the extra biscuit or bowl of dessert, while still keeping as trim and fit as possible. Trouble is I’m getting older and a 40 minute walk twice a week is about the limit of my training. That doesn’t leave much room for a chocolate biscuit!

So with no opportunity to move more it’s up to me to eat less. Eat less and eat smarter. Next week’s shopping list should be a barrel of laughs but it’ll be worth it in the long run. I’m back with my sleep specialist in a couple of months and there is no way she’s going to tell me I’m obese. That’s the plan anyway.

It’s Good To Be Back

Forgive me Mr/Mrs WordPress it’s been 6 weeks since my last post.

It has indeed been 6 weeks since my response to Eilis O’Hanlon’s article was posted. Thank you to everyone who read it, commented on it and backed me in my outrage at the piece. It has been incredibly frustrating not being able to follow-up that piece much sooner than now.

To finish the story for you before I move on with today’s post; Eilis O’Hanlon emailed me four days after I sent her a link to my post on Twitter. I did ask her if I could post her response on this blog but as I got no reply, I don’t want to break any confidentiality her email is entitled to.

Suffice to say that she stood by her article, insisted it was written in a darkly humourous and sarcastic tone and accused me of not being able to appreciate or understand dark humour. No one I have spoken to or heard from felt it was in any way humourous so I’m disgusted that I couldn’t reply sooner and follow-up my piece to keep people talking about mental health issues. Depression is a worthy foe for me at the moment so please continue to support myself and others who are in a similar position.

Anyway, why have I not posted in 6 weeks?

Around the time of my last post I began to feel incredible pain in my wrists and hands, hips, ankles and feet. My fingers swelled up, became red and burned with the inflammation. My wrists also swelled and I was unable to fit my watch around them and my dexterity was severely restricted for everyday tasks such as belts, buttons, laces etc. I have dealt with pain for the best part of 5/6 years through my fibro but this most recent pain was different, much, much worse and not related to fibro.

It was a little harder to convince my GP of this unfortunately. He has been fantastic in treating my fibro but as he increased the dosages of both painkillers and anti-inflammatories with no response, I couldn’t convince him to take some bloods to test, refer me for x-rays or to a rheumatologist. I don’t blame him because since I was diagnosed with fibro, lots of doctors have dismissed any symptom as being part of my fibromyalgia. I’ve done it myself too so there is absolutely no problem for him to do it.

So after a few weeks I decided I had to step up and take charge of my own body. I rang around all the rheumatologists near to me and told them all I had my referral letter. Once I had the appointment I then rang the GP clinic to get the letter. Sometimes a little creativity helps!

So here’s the latest news hot off the presses.

Fibrofella has yet another diagnosis to deal with and to be honest with you I’m over the moon to get it which a lot of people struggle to understand. I have arthritis and will be returning to the rheumatologist in a couple of weeks to plan my long-term treatment for it. His examinations, my medical history, as well as the blood tests and pelvic x-ray he ordered will show him exactly what we are dealing with and how we treat it. This diagnosis does not replace my fibromyalgia but is rather an additional condition.

In case you’re wondering why I’m so pleased with the diagnosis there are a few reasons for that. Firstly it validates the pain I’ve been in for years now, secondly there is more public understanding and thirdly any treatments I get for arthritis may reduce the medications I have to take for the fibro. I will not however be changing anything about this blog. I will always Fibrofella who also has arthritis, not the other way around. Another reason is that it is now also my responsibility to ensure that the public awareness of fibromyalgia grows to the level of understanding that exists for arthritis.

I’ve hated not being able to keep up with my writing recently. I hadn’t noticed how much of an integral part of my overall treatment my blogging has become. Thankfully the pain and swelling in my hands has reduced a little so I should be able to write more posts over the next little while. I have so much to share about my fibromyalgia, my arthritis and my ongoing treatment for depression that as long as my hands will let me I can’t wait to get back into my routine. Just to give you an example, I started this post last Saturday and I’m hoping to wrap it up soon. The pain may have gone down a little but it’s still there and must be managed through short bursts of activity.

It’s great to be back and I’m looking forward to sharing my stories with you all again. To my blogging friends around the world, I have read all of your recent posts but responding to them has been impossible and is something I’m hoping to do again soon.

Talk to you all soon.

 

Dear Ms. O’Hanlon

There must be something strange in the water coolers within newspaper offices in February each year. This time last year we were treated to Rod Liddle’s terrible views on hidden illnesses such as fibromyalgia. I wrote a strongly worded reply to that article but as it was an English published newspaper it appeared in I didn’t forward my response to the editor. Eilis O’Hanlon is not going to be so lucky this year.

I have attached a link to her piece, titled ‘It’s too mental right now’, below. I definitely don’t want to redistribute her views but I wanted everyone to know that the quotes I pick out to take apart are in fact real. I read with incredulity yesterday and waited and waited for either the punch line or for her to dismiss her views as a piece of ill-advised sarcasm.

As I say I wrote the letter to Rod Liddle in Dear Mr. Liddle but didn’t send it. I obviously should have, as I had the support of plenty of people and it continues to be the most viewed post I’ve written. So its time to get writing again, I only posted the other day and my fibro has me a bit tired today but this can’t wait as I’m so upset and I always feel better striking while the iron is hot.

Dear Ms. O’Hanlon,

It was with great disappointment I read your piece (attached below), published on Sunday February 17th. I read the Sunday Independent every week and I always begin by re-editing the paper for myself. The main section and sports section will be read so I leave them aside. Beginning with the brochure  of  a retailers weekly offers and moving through the business section, the living section and the magazine. This usually only takes a couple of minutes as I mark any articles I’ll come back to having read the main and sports sections.

This did not happen yesterday.

The headline and by-line piqued my interest and with that I found myself reading your article immediately without leaving it for later. I’m struggling a lot with depression and anxiety at the moment and many of the symptoms I’m experiencing would come under the broad tag of mental health. Personally to be in such a dark place, consumed with fear both of the future and what I may do at my lowest ebb, and read that when you contemplate your retirement you can only say; “I just want to have a nervous breakdown”, leaves me feeling your comments are facetious at best or just downright insulting and inappropriate.

Maybe you feel that in provoking a response from me and others that your article is a success, if you do then enjoy your moment in the sun. I meanwhile have spent nearly two years off work dealing with fibromyalgia, numerous other conditions and quite severe depression. You see I wasn’t lucky enough for it to last only 6 months, I will most likely be dealing with these issues all my life but apparently the only way my recovery can be viewed as successful is when I “dip a toe back into the land of adult responsibility”. Adult responsibility obviously doesn’t include facing up to a mental health issue, asking for the help needed and finding some relief from mental torture while also maintaining a home, paying bills and getting up every morning despite the fact there are days when I would gladly let my depression win.

Just to clear some other things up; I don’t enjoy “plenty of long lie-ins” as my sleep apnoea means I struggle to sleep more than a couple of hours each night. I don’t enjoy “sitting on the couch for hours at a time” as doing anything repetitive like that is off-limits as if I sit/lie down too much I get stiff and if I walk too much I get fatigued. In fact I can’t remember the last time I had no pain and that can be mental as well as physical. Oh and while we’re on it, I don’t eat chocolate cake for two reasons. Firstly, my Irritable Bowel Disease doesn’t like processed food and secondly, when I really lack confidence and am suffering with my depression do you really think I could eat cake without beating myself up for the extra weight I would put on as, like I said above, I get fatigued walking and so can’t train it off?

I rely on benefits to continue paying my mortgage but I have not missed one payment ever. Yes it’s true I’m not working at the moment but I don’t enjoy being this way and certainly don’t see it as a lifestyle choice. My teary, irritable, angry, frustrated, sad, overwhelmed person is just not ready for a workplace at the moment.

I never did “swoon elegantly”, I did have some awful seizures brought on by depression and anxiety. The fact you dismiss the possibility of being affected by mental illness because “the children would only proceed to ignore it anyway” is a terrible insult to the many people I have met with varying degrees of mental health issues who continue to fight their various demons while raising a family, running a home or even those trying to avoid intentionally hurting themselves just to feel something.

My intention is to get through my mental health issues as well as my fibromyalgia etc. and anyone who has encountered me will know that, despite the fact I’m in a very dark place and face a daily struggle to go on, “throwing in the towel” is not an option I have taken. Fair play to you taking some time for yourself and switching off at times but do you have to call it a “pity party”?

If you have been lucky enough not to experience a family member or friend suffering with mental health issues then you are indeed very lucky. Because it is only someone completely innocent of these issues who could say that before they “drop out of life for the day” they “have to make sure that the other one has landed safely on the other side of Neurotic Bay before taking off on an excursion (themselves)”.

I imagine you feel that by saying “a full-time nervous breakdown has had to be put on my to-do list for the future, along with……………….trying hard to stop being such a sarcastic, unfeeling cow.” exonerates you from responsibility for your words. Excuse my french but that is bullshit! Somebody struggling with their mental health never needs much to be drawn back into a well of difficulty and despair. I was right on the edge yesterday and thankfully I made the right choice but imagine I hadn’t. I hope that having spoken about my upset at your article yesterday, my friends and family would realise the part that your inappropriate and bullying piece about people who “have instant permission to be as wrapped up in (their) own little world as (they) want” played in that decision.

Words have the ability to carry huge weight and this is especially true when those words are aimed at a group of people who are already in turmoil and struggling to cope. It’s important to be careful with the words, language and tone that are used in any article. I’m so disappointed in this piece below and my thoughts are with anyone else struggling at this time with their mental health.

Just before I go, does anyone have any idea how to get across Neurotic Bay? I didn’t realise all I had to do was get safely to the other side and I’d be well again.

Take care.

Fibrofella

mental2

Getting The Royal Treatment

I’ve had diagnosed Fibromyalgia for nearly two years now. Up until that point my options for treating any medical issues were very straightforward. If I injured my knee on a football pitch, the ambulance brought me to hospital and after the A&E team did their thing, I returned to see any consultants I was told to. If I had a cold, I reached for the Lemsips and rode it out. No matter what was wrong, there was always an obvious person to go to, and they fixed it.

In so many, many ways fibromyalgia has changed my outlook on lots of things and it has taught me to be patient and open in dealing with it. My fibromyalgia affects every system in my body and so the number of doctors and medical professionals I have visited is massive. There is no one thing that will fix me, there is no one doctor who can cure me and to manage my fibromyalgia in the best possible way, I have to combine the skills of ALL the medical folk and get on with things as best as I can.

After being referred to 8 or 9 consultants I’ve got used to the idea that the best way to treat my fibromyalgia is to take a multi-disciplinary outlook. I’ve also got used to friends and family suggesting people I should see, diets I should follow, exercise programmes I should engage in and supplements I should add into my daily routine. I like the fact that I have people who care enough about my well-being to pass on something they have heard or read and I never dismiss any suggestions out of hand.

That wouldn’t have been the case 3 or 4 years, I was so used to treating ailments a certain way I never wanted to stray from the obvious and take a chance on a different form of treatment. As I said that has changed because fibromyalgia stops you in your tracks and the only way to manage it successfully is to take a holistic approach and try to treat the whole body. This is especially important for me because of all the ways fibromyalgia interferes with my body.

Many people find alternative therapies very good for relieving pain, stress, muscle, tension etc. and I have to say I did too. I tried both massage and acupuncture and found great relief from both. Unfortunately these treatments don’t come cheap (or cheap enough) for me to afford to include them in my long-term treatment. I will always need to take medications to treat my fibromyalgia but massage in particular was a really enjoyable way to improve my symptoms. As a result I’m always trying to keep my eye out for an affordable treatment that I can use alongside my medications to improve my situation.

This led me to an interesting encounter yesterday.

There are many vitamin and mineral supplements people take every day and while they can have benefits, I can’t find the room in my budget for the magnesium, the vitamin d etc. that may help me out. I was however given the number of a famous herbalist in a neighbouring county. The initial consultation fee was extremely reasonable and with my newly open mind in tow I set off for his clinic yesterday. I did however have to cross the border into County Meath, the ‘Royal County’, luckily passport control let me through this time.

I filled in my details (why is the area for writing your illnesses and treatments always so bloody small?!), and waited to be called. I met with a really friendly woman who listened to my medical history, checked my ongoing medications and asked about my diet and levels of activity at the moment. I can safely say the medications took much longer to talk about than my activity levels!

After the consultation I was prescribed some mad looking beverages. These will hopefully, in time, work alongside my medications to increase my energy levels, improve my sleep quality and protect my immune system. Despite appearances they taste pretty good, in fact one of them tastes a little like iced tea which I’ve acquired a taste for over the years.

So here I am; one of the biggest sceptics in the world opening himself up to the possibility that a herbalist could help in the fight against fibromyalgia. I’ve got three weeks’ worth of these drinks to get through and then I’ll return to the clinic for a consultation with the main men himself. ’Nothing ventured, nothing gained’, but if you’d told me 5 years ago I’d be seeing a herbalist I would have dismissed you without hesitation. A little dose of life and reality will humble even the biggest sceptics. 

So wish me luck and I’ll let you know how this latest experiment goes. I will give it enough time to see any changes it may bring; I just hope I can afford to keep going with it if the benefits are obvious. In spite of any improvements it may bring, it is unfortunate that the final decision will not be made on its’ effectiveness but its’ ongoing cost.

Keep Those Elbows Up

When I was younger and my Dad would bring me to Croke Park, or any stadium, for a big game he would remind me of something as we would be leaving the ground; ‘Make sure to keep your elbows up’. It was a simple piece of advice but the best way I could avoid being overcrowded, and keep some personal space, as we would leave stadiums when I hadn’t grown into my 6 foot 2 inch frame. Travelling on a commuter train at peak time into Dublin always remind of those days. As soon as the doors open, and often before people have got off the train, there is a rush of people to get on and get a seat. It is very easy to find yourself out manoeuvred by more experienced train users so it is important to keep your wits about you.

In fairness these commuter trains bear no resemblance to the pictures we have all seen of over crowded trains in China or India for example, I’ve no idea if I’d cope in those places. I’ve been forced back on the train for the last week until I get my car back up and running. I spoke in The Perfect Metaphor about the unpredictability of flare ups for myself and my little jam-jar. Well she is experiencing one of those flares at the minute and she can’t return soon enough for me. As a result I’ve been forced to make a couple of trips by public transport.

First up is the walk to the station. Anyone with fibro will understand that we only have so much energy to make it through each day. Getting up a little earlier and having to walk to the station obviously takes up more energy than stepping out the door and into the driver’s seat. By the time I make it to the station I’m already tired and I’m already sore, it is not a nice way to start the day. So when the train pulls in, my desire for a seat is huge. I want to rest my limbs but maybe also to close my eyes and try to restore some energy on the journey. So my Dad’s words jump to the front of my brain, I’m all consumed by finding a seat and getting there before my fellow commuters.

This is where the main problem of being a fella, having your car out of action and having to the take the train starts to become a serious problem. You see, as I said above, I’m now over 6 foot tall, I’m in my twenties and I can scrub up pretty decently every now and then. So when I spot the one remaining seat and start to make my move to capture it, I’m faced with a dilemma. Coming from the other door in the carriage and equidistant from the seat is a ‘little old lady’ with a wheelie trolley behind her, a stooped gait and a tiredness the whole carriage can see. I have fibromyalgia but first and foremost I’m a fella and with great thanks to my parents I think I was dragged up very well.

Despite my pain, fatigue, numbness, burning hands blah, blah, blah, there is no way in hell that I will force my way into the seat and leave her to stand. I’d love to suggest a game of ‘illness top trumps’. This is my new favourite game, it basically involves listing, one by one, all your different conditions and whoever runs out first loses. I fancy I’d win against her but I’d be judged by every single person on the train and so I gentlemanly step aside and will someone, with all my heart, to get up from their seat or better still get off at the next stop.

As we all know fibromyalgia is an invisible illness. No matter what torrent of symptoms we are experiencing, very rarely does our body betray this to the world. So positioning myself where the train doors open I can usually guarantee that, with my elbows up, I will find a seat for myself. You might imagine that I can then relax but in fact being in possession of a seat on a crowded train is a dangerous game to play. When I’m tired and sore I can struggle to concentrate on anything, so I never listen to music or read on train journeys as that would use up vital energy stores.

As a result of this other train users are faced with the following vision; a six-foot two-inch fella in his twenties forces his way to the front of the queue to get on the train as quickly as possible. Once there he sits down, looking well, not using any book or electrical device to distract him and stays seated while all other travellers of all age and condition get on and stay standing. That could happen but it doesn’t really, no matter how I feel I will offer my seat to anyone of a certain age, pregnant women or anyone with a visible problem.

Look back at the last four words of the previous paragraph. That is really the beginning, middle and end of this post. Due to fibromyalgia and its invisible nature the rules change for all of us when we use public transport. We have no outward way of telling people that on that particular day we are just as entitled to a seat as a pregnant lady, an older person or anyone else who would be offered a seat on public transport. Fibromyalgia is a perplexing condition and while there are days we are in dire need of a seat, there are also one or two days when we might be able to stand.

This situation has only been brought home to be over the last week as I’ve been forced to use public transport to attend a couple of appointments. Outwardly I looked the picture of health both days and on the first I felt ok too but by the second journey I was so exhausted I made sure to get a seat and used my thick skin to ignore the pointing, whispering and judgement of those who doubted my need for a seat.

A car is vitally important to me. It guarantees me a seat for starters but it is much, much more than that. Not wasting energy getting places by public transport means my depleted energy stores can last a little longer and reduce my tiredness. This peace of mind helps me in many ways. If I can drive somewhere I can be more alert and functional at the doctor’s appointment, my voluntary work or if it’s just out with my friends. It also allows me to exercise and walk for training purposes rather than walking too far getting places.

A wise person once said (it could’ve been a fool, I’ve no idea who said it first!) ‘you don’t know what you’ve got ’til it’s gone.’ My car gives me freedom that disappears once I’m forced onto public transport, I’m so tired already and it has only been a few days. I hope I don’t have to be car-less too much longer because it won’t work in the long run for me. If I’m to be, in any way, a functioning person and not merely a fella at home with an invisible illness I need my car back.

Thanks For The Support Dad

Last weekend I took part in a research project into the levels of support people with fibromyalgia experience from their friends, families, co-workers etc. It is a small survey at the moment but any research into fibromyalgia is to be welcomed and the fact that it focuses on the experience of men with fibromyalgia is doubly significant. Sitting in the room, I spent some time examining my own experiences before sharing them with the group. I have often said my fibromyalgia, in a strange way, has brought my family closer together by the fact we now discuss emotions and feelings more than ever before. This however will always be difficult for an Irishman and his father but I know how my Dad feels about me and I’d like to share the following to explain how that has come about.

Christmas morning in fibrofella’s house always has structure to it. Dad turns on the tree and the fire and we go into the sitting room to open our presents. As we do so my folks take photographs to catch our reactions to different presents. As we are all nosy people, we open our own presents very slowly so that we can see what the other three have got. Dad would sometimes ask us ‘what did you get?’, ‘what’s that?’ because, very rarely it must be said, we would be opening a present marked from Mam & Dad that he was seeing for the first time. This year was no different as Mam and Dad had cameras at the ready to catch our reactions to opening our presents, even at our age!

The order in which you open your presents is a vital decision in our house. Some presents make recurring appearances each year and very welcome appearances these are too. They are the socks, the pyjamas, the facial scrubs, the aftershave balms that get us through the year. They are often easily recognised, even through the wrapping paper, and so are opened first. This system, streamlined over the years, sees any one-off presents or ones of unusual shape, size or texture left until last in order to extend the excitement. Yes I am a large, hairy 29-year-old child!

 So this year as I made my way through the presents, one unusual gift grabbed my attention. It didn’t feel like any of the traditional, recurring presents or indeed anything that had been on my submitted wish list. Presenting random gifts is a dangerous game to play and Mam & Dad were obviously feeling brave. Needless to say leaving this present until last was a brave choice for me too but they, more correctly Dad, certainly got it spot on or I wouldn’t be telling you about it now.

Over the past ten years I’ve experienced many highs but when I look back on the past decade it’s the lows that spring to my mind first. With, in no particular order, fibro, injuries, meningitis, surgeries, job losses, relationship losses all making appearances. Not to mention the camera crews that have visited various parts of my anatomy recently! At times when I’ve been at my lowest ebb my Dad has quoted 3 short, simple lines of poetry that have proved a comfort and shown that he will support me through any difficulty and over any obstacle;
‘You are a child of the universe, no less than the trees and the stars;
You have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.’
 Desiderata, Max Ehrmann 1927

So with my curiosity piqued I opened my wildcard present and, as I did so, I noticed Dad watching me. Keeping you in no further suspense, the wildcard present was a framed copy of the poem Desiderata. I could blame increased crying caused by my fibro or depression but truth is just opening that present brought a tear(s) to my eye.

My Dad had put special thought and energy into this gift for me. He printed and framed it to show how much he cares and how he’ll always be there for me. As I hugged him I remembered vividly the times he had quoted this to me over the last decade and it reminded me of all the ways he has helped me become the man I am today.

So now I have this framed poem to see each and every day at home. The words themselves are a sign of support but knowing the extra mile my Dad went to for it will add extra impact to the sentiment. So never let it be said that Irishmen can’t show their emotions and share them with each other. You just might have to look a little further before you get to the wildcard gift that proves the point.

TMI? No, no TMJ!

When you’ve so many diagnoses, every visit to a doctor holds a sense of intrigue as to what they might discover. At last count it was 7 separate diagnoses but, drum roll please, I’ve gone from the magnificent seven to the enormous eight! It’s quite small in comparison to some of the others but it’s bloody painful.

I visited the GP yesterday for my post-Christmas debrief. I’ve said it many times but I got lucky with my GP, he has a keen interest in fibro and he has spent more time than he must getting to know me as a person as well over the last few years. He can read me from the moment he sees me in the waiting room and knows whether it is pain and/or fatigue and/or depression that is troubling me most at that time. They’re all always there but the severity of their impact can fluctuate.

Yesterday was a routine appointment; he wanted to see how Christmas and New Year had gone, how they had affected me and how I’m feeling now. We had a great chat and I took him through the highlights, or more correctly lowlights, of my experiences over the holidays.

I’ve learned over the past two years to recognise some of the pains that come with my fibro. I constantly think that my shoulders and hips are disintegrating with the pain and EVERY other joint, big or small, has had many painful episodes. So when he asked me what areas were particularly painful, he wasn’t expecting a short response.

I began by talking about the pain in my hips and shoulders, as well as my thumbs and wrists. A quick examination followed and we decided it was ‘normal’ fibro pain, whatever the hell normal is. For example, I’m talking here about crippling, stomach churning pain that can confine you to bed at times but that can still be described as normal fibro pain that we must live with. I then told him about a pain that has become progressively more painful and debilitating over the last 4-6 weeks.

It all started with a sharp pain behind my eyes which led to severe migraines. These symptoms in themselves aren’t new and I’ve learned how to ride them out over the last few months. The pain persisted and was joined by around my left eye socket and where my jawbones meet close to my ear. The GP knew exactly what I was describing and quick as a flash, Fibrofella had a new name to get used to.

Its’ correct and full name is Temperomandibular Joint Disorder but TMJD is shorter and easier to remember. He said it’s not uncommon for people with fibro or sleep apnoea to suffer with it, so when I’ve both of these I should have expected it. I rang my Doctor in the Sleep Disorders Clinic to see if they had seen it around the time of my sleep studies.

Her P.A. got back to me very quickly after they had discussed it together. Apparently they don’t check for teeth grinding or anything that may cause TMJD during the sleep study because it is pretty much there for everyone anyway. They said they would’ve told me about it at the time but, with the four other sleep disorders they were telling me about, it was understandable that the TMJD wouldn’t have been high on my priority list.

Well that’s all changed now because the pain it has brought on allowed it to skip to the front of the queue. Talking, eating, yawning, sneezing, everything inflames the joint and the pain is horrible. Coming from someone who has endured the nickname of sick-note while playing football and has fibro, I think I qualify as a bit of an expert on pain and so, if I tell you how painful it is, I think you can take my word for it. With fibro we all learn to live with a fairly high degree of pain every day and at times it flares but it is ever present.

So there we go. I’ve now got 8 diagnoses, it’s not the worst but it’s another concern. At times like this I’m glad I write this blog and don’t video blog because I can’t talk at the moment the pain is so bad. It’s very common and I’m sure it will just blend in with all the other symptoms in time. Sure what’s another one at this stage? It had been a while since my last diagnosis so I must’ve been due for one!

 

P.S.: I wrote this piece last week but I’m only getting to publishing it now thanks to the unpredictable nature of fibro and its symptoms. Last Saturday night I came down with a horrible vomiting bug and, because I was very sore and tired at the time, it just wiped me out for a few days. Why do we, fibro folk, always get an extra kick when we’re already down?!!