Positive Thought Thursday

I understand that using this blog as a tool for venting any pent-up frustrations or irritations I may have doesn’t leave much room for positivity. It’s not that I don’t try, every time I sit down to write a new post I try to come up with something positive that has happened to me or that I’m looking forward to. Unfortunately nine times out of ten whatever is pissing me off tends to shout louder and so I write about that instead.

Today though, I’m trying to keep myself positive and I’m going to write about something I’m looking forward. I’m feeling a bit drained today and like I’ve bitten off a bit more than I can chew but I’m hoping some reverse psychology might work and if I think positive thoughts I can get over today’s little slump. As my blogging friend Cate said recently, when contemplating whether she is a glass half full or half empty person, I’m just going to be glad that “at least I have a glass and something in it!”

Back in July I told you all about a brilliant weekend away I had with a group of inspirational teenagers with JA. The courage and strength of character they showed was awesome. I said at the time that I hoped it would be a long while before I spent another weekend with them but I think I’m just about ready to go back in the ocean. So roll on October 6th and the Arthritis Ireland Family Day.

Juvenile Arthritis affects whole families and not just the child with JA. Parents make huge sacrifices for their children; they pay their medical bills, they bring them to their appointments and they do a million other small tasks each day for their children. Sometimes through the time and attention focused on children with JA, their siblings can feel neglected, isolated and less loved. I’m not a parent myself but I know my parents love me and my siblings equally though we’ve all had times when we’ve needed more attention than the others. At the moment I’m in the box seat because of my fibro but that won’t last, although there are times I’d like it to! 🙂

As a way of showing support for all these families dealing with JA, Arthritis Ireland have organised a Family Day on October 6th. This fun and informative event will give families living with JA a chance to not only meet each other, but parents will also hear from the top JA experts while the kids take part in a superhero fun day. In July I was inspired by the 25 teenagers we brought away on the JA Road Trip, I can’t wait to meet and be inspired by 54 (and counting) families and the stories they have to share.

It’s still over two weeks away but I am already looking forward to the day. I know helping out and looking after all those families will be a tiring, exhausting experience so I’ll be clearing my schedule the week before and the week after to both prepare and recover. But seeing the teenagers from the Road Trip again, meeting new children with JA and all their families will be a brilliant day.

So while I’m tired and sore today I’m hoping the expectancy of another great day on October 6th will give me just enough of a boost to beat the pain. So far so good and I’m confident that will continue through tonight. It’s amazing the power of positive thinking if we are willing to be open to it. I wonder will this last or will I be back to my moaning best by next week??




An Irritable So and So

Irritation is..

1)      ..the state of feeling annoyed, impatient, or slightly angry

2)      ..inflammation or other discomfort in a body part caused by reaction to an irritant substance

I thought about just ending my post there. It sums up so much of what I feel a lot of the time. I’ll try to make sense of what’s in my head but I’ll also apologise now if I don’t explain myself too well.

It’s been over a year since I had to stop working and while I’m slowly getting an understanding of my fibro, I’m not fit to work yet and I don’t know when I will be. My family and I are noticing some improvements but we all have to just carry on taking small steps and I’ll get there at some stage. Many people would imagine that not having a job to worry about would lower my stress and allow me to focus purely on getting better.

That’s not true unfortunately.

If any professionals ask me am I feeling stressed at the moment, I say that no I’m not BUT why do I shout at drivers that don’t use their indicators? Why do I bite the head off my family and friends for no reason? Why do I get angry if I struggle to explain myself and make myself understood? Why do I get frustrated that I haven’t got a handle on this fibro yet and I still feel lost and useless at times?

The answer to all these, I think, is that while I’m not stressed at the moment, I’m constantly in a state of irritability and only a second away from potential anger, frustration, impatience. From the beginning of my fibro symptoms I became decent at keeping those feelings in check, especially in the real world. I’m never 100% successful in this however and, because I feel closest to them and most comfortable around them, it is my immediate family who bear the biggest brunt of this. They all get some of it but my Mam in particular, so I’m sorry Mam for being an irritable so and so from time to time. 

Irritability is exactly as it is defined above. It gets under my skin and picks away so much that by the time something tiny happens, I’m already angry and impatient. It brings with it a constant stream of nagging and niggling pains and aches. One by one you wouldn’t even notice these pains but when your whole body feels it at the same time it’s hard to ignore. Think of the most irritating itch you couldn’t scratch, the tiny spot on your back that you forget to cover with sun-cream and is now all you can think about. Sensations like these and many others are what build up the irritation. They are annoying little things but they mount up and that’s just the external irritations.

Fibromyalgia is an equal opportunities irritant and is just as happy to poke away and niggle at your insides as it is to irritate your skin, your body and your mind. It’s become a bit of a running joke that I have probably seen every possible …ologist in the last 18 months. As I said the other week there aint much of me left to examine. I was back with the urologist yesterday for the follow-up to my (extended) hospital visit last month.

So it turns out I’ve got irritable bladder disease. Hands up anyone who had heard of that before? Not happy to provide me with irritable bowel disease, it seems my personal collection of symptoms must now include a second IBD, with a different meaning for the B. More irritation, more itching that can’t be scratched, more tablets to remember to take and frustration and impatience that I’m not on top of the fibro yet.

Just in case anyone is keeping score I think that’s 8 separate diagnoses in the past year, five of which I take medication for and must treat on an ongoing basis. I’m not counting them up in any sort of competitive way because everybody’s experience of fibro and other chronic diseases is so completely different. I do it to confirm that I’ve had sound reason to visit all those …ologists and I’m sorry if I get irritated when anyone questions me about the extent of my fibro symptoms.

Irritation happens inside and out for me. It causes and worsens lots of my fibro symptoms but I should never use it as an excuse. So if I’m ever an irritable so and so in your company I apologise now. Just tell me to build a bridge and get over it. 

Not so SAD!

I found myself in an embarrassing situation this morning. It was nothing major and was definitely at the funny end of the embarrassment spectrum so, despite my red face, I was laughing along myself by the time the lights turned green and I could drive off.

Throughout what has now officially become the wettest and darkest summer since records began, I have maintained the hope that September would bring some good weather. This was based on my, probably overly nostalgic, memories of it always being sunny when the kids go back to school. God bless my optimism at sticking to my guns on this, particularly after making a similar assertion about the Leaving Certificate exams in June which ended in disappointment.

So this morning when I woke up to the third straight warm and bright day I felt really positive. Never mind that there have been gusts of wind that would skin you alive and that it’s been cold in the shade, the last few days have improved my mood and I think it’s been the same for other people too.  

With it being such a nice morning I decided to join a local arthritis walking group who meet for a stroll and a coffee in a local park. For once the radio had a decent playlist going as I switched stations searching for a decent tune. I had the window down and my shades on and was singing along anytime I found a good song.

It seemed very appropriate that Don Henley’s Boys of Summer would come on en route to the park. It’s a cracking driving tune and I was imagining myself driving a famous coastal route rather than through the road works and traffic of north Dublin. I pulled up to a set of traffic lights but forgot to hit the mute button on my singing.

I’ve no problem with someone seeing me sing along as I overtake them but stopped at traffic lights and when they can hear me as well is another story. So there I was singing along and the cars pulled up beside me and behind me. Nothing unusual there but again I missed the opportunity to stop singing and focus on what I was doing. Instead I continued singing and was brought back from my French Riviera daydreams by car horn, after car horn, after car horn!

Not only had I not reacted to the lights but by the time I reacted to the car horns the lights had changed back to red and we were stuck for another rotation of the lights. Sheepishly and with a massive red face I turned down the volume on the radio and tried to stare at the lights to make them change quicker.

I could feel eyes watching me though and I couldn’t resist a few glances in the mirrors and over my shoulders. In fairness to my fellow drivers they were laughing more than cursing me so again gingerly I risked a smile at my own expense. Thankfully with the sun shining and people accordingly being in better form, they were prepared to laugh along at me rather than lynching me for delaying them.

What happened today was definitely a response to the upturn in weather. Had it not been so warm and bright I wouldn’t have been so distracted singing along to a song. Even if I had have been, there is no way the other drivers would have been so forgiving if it was lashing rain and freezing cold. So there is definitely something in the idea that our reactions were all seasonally affected but it didn’t bring disorder, it brought more smiles and positivity. So maybe it’s time to come up with an acronym that is the opposite of SAD.

Ideas on a summer holiday postcard can be returned to fibrofella 🙂