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?!!

2013 Resolutions

Did you enjoy it? Did you even notice it was going on? I paid it no heed and was much the happier for it. 2012 came like a tonne of bricks and shattered my life to pieces but thankfully it disappeared with a whimper. Fear not that there is a 13 thirteen in this year, it can’t be worse than 2012 so if I have anything to do with it, 2013 is going to be a blast!

I wished my family a Happy New Year very early on December 31st. It was going to be an early night for me and I didn’t want to be disturbed by too many messages come the midnight hour. As I lay in bed, and just before I slipped off to sleep, I performed a little state of the nation chat with myself. I was always told ‘that it’s no problem talking to yourself, it’s only when you are answering back that you should start to worry.’ Well I’m definitely gone over to the dark side, because not only did I answer back but I was having this discussion with myself out loud.

The first fella was very loud and domineering. He shouted and roared a long list of everything that went wrong in 2012. Things he did, things he should have done, things he shouldn’t and people who had upset or offended him throughout the year. 

The second fella was a lot more timid. He kept trying to answer but couldn’t find a gap in Himself’s stream of consciousness. Like the young lad in school who has to hold one arm in the air with his other hand because the teacher hasn’t got to him yet. 

Item after item, awful moments of new diagnoses followed by horrible incidents, things that went wrong and not forgetting the four mornings in a row Himself walked into his kitchen wall. The wall never moved but unfortunately spatial awareness, concentration and alertness are never good first thing in the morning.

Eventually, Himself paused for breath and He had some time for rebuttal. He agreed that, yes 2012 was an Annus Horribilis but in amongst it there had been some small flickers of light and even a little happiness. 

He has learned about fibro and how to manage some symptoms. He volunteers and meets people who not only understand what He is going through but also show how to live better with any illness or symptoms that raise their heads. His family feel even closer to him than before and He thinks fibro has helped. The emotional rollercoaster He is on, and the Depression He is suffering from so badly now, means He talks about his emotions more with his loved ones. As a result the rest of the family do the same and the bonds are much tighter for it.

New Year is traditionally a time for resolutions but as 2012 drew to a close in bed at 10pm both He and Himself finally agreed on something. Since very few people actually stick to their resolutions, they’ve decided to go for an easy and achievable resolution. In fact they’ve already succeeded in achieving it and a result it won’t be too hard to stick to it for the long haul.

Before I go to bed each night, I have a quick recap of my day. Both He and Himself get a chance to speak and say their piece. Himself still hollers and roars about all the bad bits of the day and all the things left undone but, once that’s done, He gets a chance to talk too. He lowers his tired arm as Teacher finally gives the nod so He can begin.

He says slowly and quietly, ‘well done fella, you did some great stretching this morning before you had your breakfast. Now isn’t that one small success a much better thought to try to fall asleep on?’, and even Himself cannot argue with that.

New Year Resolutions don’t have to be massive or difficult. Simple and achievable goals are much better and give just as big a sense of accomplishment. Good luck with whatever resolutions you decide upon, and from both He and Himself, may we wish you a Happy (and pain free) 2013! 

 

Pacing is always difficult to achieve with fibro and unfortunately it’s taken me a long time to recover from just the three days celebrations I enjoyed over the holidays. All other days over the period were spent in pyjamas, on the couch or in bed. As a result this post is a little late but I hope you will excuse my mushy brain and as always the fight goes on. Take care