Too Hot or Too Cold?

I can’t remember exactly when I started to really love being outdoors. As a small child I remember playing in the sand on the beach, I’ve been to some stunning outdoor swimming pools across Europe and I played as much sport as I could. But I think at that stage I was enjoying what I was actually doing and not necessarily the fresh air and the feeling of just being outside.

As a young teenager I must have been a pain in the backside for my parents. Despite the fact I would play football and train outside, I hated being outdoors for anything else. I was a typical surly teenager who didn’t want to hang around with his parents. As a result many trips to the beach, walks along piers and walks through the forest were wasted on me. I put up with them but would still moan as much as possible. Basically, just enough to annoy my parents but not so much that I wouldn’t get the chips or ice-cream that came at the end!

Luckily I matured a little on this score and began to see the benefits as my teenage years went on. Ballybunion holds special memories for me. It was there I began to enjoy just being outside and breathing in the fresh air. I loved it down there and it always made eating cheddar cheese, apples and digestive biscuits (try it, it’s really tasty) taste like the best snack ever. I’ve done that on days of 25 degree sunshine and on New Years’ Day in sideways rain and it always tasted delicious.

The past week in Ireland has brought record high temperatures for March in many places around the country. It’s amazing to see the difference a bit of sun can do to the Irish person’s mood. We’re up the creek financially, everyone is struggling and we’ve heard that the Cead Mile Failte approach is diminishing but if we had some guaranteed sunshine I don’t think that would be a problem. I’ve heard of individuals with Seasonal Affected Disorder, I wonder is it possible to have it as a nation?

Personally I’ve really enjoyed having the sun on my back for the last few days. Unfortunately I had forgotten about some of the different side effects that extra sun brings on my fibro. My body isn’t as tight as in cold weather and so I’ve been able to stretch muscles and get a little reduction in my pain levels. On the other hand the hot weather is incredibly draining. An overbearing sense of fatigue has returned in the last few days. At night I can sleep a little because it’s cooler but throughout the day, what were simple tasks in winter now seriously deplete my energy levels.

I know I often cite my football memories in this blog but it’s what I know. When we went to England as 17 year olds we were going to play two professional academy teams in a weekend. After playing the first match we were brought to see the opposition’s first team play that afternoon. It was a beautiful August day and we went to sit in the seats that had been reserved for us in the stand. However within five minutes we were being moved to the away section on the other side of the pitch which was in shade. The reason? We had already played a match ourselves and our managers didn’t want us sitting in the sun for another two hours draining our energy before our second match the next day.

Even at our peak physical condition we were susceptible to being drained of energy by the sun, so this week, when I’m not even an inch the athlete I was then, I have found myself very quickly drained and worn out. It is always a balancing act with the fibro, some days the pain is worse, some days the fatigue is worse and sometimes they are as bad as each other. This week I am still in pain though it has lessened a little but moving about has become incredibly tiring.

Going back to when I was younger I remember my parents trying to entice me outside. During the summer, I was much happier sitting inside watching television rather than going for a walk or even just sitting outside. In the winter I had no interest in wrapping up and going for a walk in the rain.

Over the years that really changed. Once the good weather appeared I was off in my shorts looking to go for a walk or a cycle. Even if the weather turned bad I never minded. Sometimes you can get just as much joy from tramping through the rain and mud and coming home to the heating and a long shower.

I’ve just spent the first really bad winter of fibro symptoms in serious pain and unable to move too much. I thought the warm weather would bring some pain relief and I could get back outdoors. Well, I’ve just had a taster of summer weather this week and while I’ve had a little pain relief I’m too wiped out to enjoy it.

For the last 10 years, with regard to the great outdoors, I’ve lived by Billy Connolly’s expression; ‘there is no such thing as bad weather, only the wrong clothes.’  If I’m too sore in the winter and too fatigued in the summer to enjoy long walks and the great outdoors maybe it’s time I found a new expression? any suggestions?

 

Big Brother

It was the first time in about ten years I had hair on my head that didn’t have gel in it or a baseball cap on top to hide it. The instructions were to be clean and fresh but not to have any gels, creams or any other products on my skin or in my hair. I felt a little unusual with no gel in my hair but that was nothing to how uncomfortable I was about to be.

I had just settled into my room when the nurse came in to set me up for the evening. It was only four in the afternoon but I had to get wired up so that I could get used to the feeling before I had to go asleep. When she was finished I understood why, this was going to take a bit of getting used to.

I can’t remember the last time I woke up feeling rested and refreshed, and that’s months and years not days and weeks. I remember the time when a lie on was something to be cherished and looked forward to, as an opportunity to let your body repair and rest. Fibro doesn’t seem to understand that. Since the symptoms have begun for me, sleep or more accurately lack of sleep has caused a lot of trouble for me. It has increased the pain, stiffness, lack of energy, lack of concentration and all the other symptoms I have. What I wouldn’t give for a good night of recuperative sleep.

So that’s why I ended up in hospital this week, watching a nurse attach sensor after sensor on to my body. From my head to my toes receptors, microphones and monitors were attached. I think it was 11 that were on my head, hence the lack of gel in my hair. I’ve been in hospital quite a few times over the years but in comparison to those occasions I actually felt ‘well’ or ‘normal’, whatever that is.

No new accident, fall or illness had brought me to be in hospital but for a time I did feel a little bit nervous of what was to come. I suppose because I was fully awake and alert I was more conscious of everything. This sleep study would find out if there was any reason why my sleep had been so bad for the last few years. As much as I was afraid of what might be found, at the same, weirdly, I kind of wanted something to be found. At least then I would have a diagnosis and it could be worked on. It was very reminiscent of the days before my fibro diagnosis, ‘at least if I know what I have I can learn about it and improve my situation.’

Just before my bedtime another nurse came in to hook me up to all the monitors for the night. The pack that was on my chest had about 20 wires from each sensor which needed to be connected to the monitors. I also had to be hooked up to the heart and blood pressure monitors and the camera had to be switched on. Yes, on top of all the computer monitoring, big brother was also going to be watching me sleep.

Naturally enough it took some to for me be comfortable and ready to sleep. The idea of being watched all the time was a little disconcerting but I knew it was for my own good. I drifted off to sleep and just hoped that all the monitors couldn’t read my dreams throughout the night!

The next morning seemed to come around very quickly. The best thing about the sleep study and all the monitors was that they were fed straight into the computer so I could get the results there and then rather than having to wait and wait. After breakfast my consultant came in to give me the results. It’s very hard to describe the feeling of wanting a diagnosis but hoping it’s not too serious at the same time.

The upshot of it all is that I do indeed have three distinct sleeping disorders. Maybe down the line I’ll tell you all but for the minute all you need to know is that I have got some explanation for my sleeping problems. Over the next few weeks I will be shown some changes I can make, given some additional med’s and generally be taught how to improve my sleeping pattern.

From a very uncomfortable position of being wired up to all sorts of machines, I have got what I wanted. I have an explanation for the problems I have and with the help of a number of new doctors, nurses and hopefully not too many meds I should be able to improve my situation.

Sometimes that’s all you can ask for. The ability to learn, get help and improve your life, piece by piece. I didn’t really enjoy the experience of the sleep study but at least when I have it done again I should be getting better news. That will only happen if I take on board what I’m told and engage in my own treatment. I look forward to sharing that good news with you in the future.

March Madness

I’ve been six-foot tall since I was about 14 so you might imagine that I would have been a handy addition to a basketball team. You would be wrong.

At fourteen, I had a slight advantage being taller than a lot of my classmates. But whatever is the equivalent of, ‘couldn’t kick snow off a rope’ would probably best describe my abilities. I never got near a team but whenever we played in P.E., I would park myself under the rim, pick up as many rebounds as possible and throw the ball to whoever the skilful players were. This was effective at fourteen but not so much at 15, the lads caught up with me height-wise and I became as useful as an inflatable dartboard.

Despite my limited playing abilities, I’ve always loved basketball. It must’ve been my uncle’s influence, now he could play. It is the most combative ‘non-contact’ sport I’ve ever seen and a long-range, buzzer beating three-point shot is hard to top.

For those of us who prefer our ball more American college than NBA, the month of March is a highlight of every season. The top 68 teams in the country take part in the NCAA’s championships nicknamed March Madness. The only problem for those of us on this side of the Atlantic is the tip-off times of the games. Seven o’clock American east coast time is midnight here, so March brings either late nights or clever use of the recorder to keep on top of the games.

I haven’t worked for nearly nine months but when I did it was shift-work. The blow of working until one or two in the morning was softened by a live match from America before bed. You wouldn’t expect someone working 9 to 5 to come home and go straight to bed. A little downtime is needed first and anyone who has done shift-work will know the feeling as well. Going to bed in the wee hours of the morning was my norm for ten years.

One of the first things I was told when I was diagnosed with fibro was the importance of going to bed and getting up at the same time. A routine for sleeping can help ease some symptoms and we all try anything to get that. This was difficult to achieve while working but I gave it absolutely everything to try to achieve that.

When all the symptoms of fibro combined to make me unable to work at the moment, sleep is one thing that I have really tried to get on top of. Not working in shift-work allowed for the possibility of me going to bed earlier than I was used to. Plenty of people told me that ‘the sleep you get before midnight is twice as valuable to you’. This seemed to make sense and I took this advice on bed. I would crawl into bed, tired and sore, at about 11pm and try to get some restorative sleep. There has followed many, many nights of staring at the four walls, insomnia, difficulty getting to sleep, difficulty staying asleep and frustration, caused by being unable to sleep. This has happened no matter what time I went to bed and I would often be left lying in bed awake for hours at night and in the morning.

It turns out that my being a creature of the night isn’t so bad after all. Visiting a sleep disorder clinic last week I was introduced to the concept of delayed circadian rhythm disorder (DCRS). Basically my body, having experienced bar work for ten years, has grown accustomed to going to bed later and getting up later.

I was asked what time was the latest I would get out of bed, whether I slept or not. When I said I would always be out of bed by 10.30am that became the anchor of my day. It would be illogical for me to expect to sleep within 16 hours of that time, making my bed time 2.30am. Why lie in bed being frustrated at not sleeping before that time? I would have enough of that if I still can’t sleep at 2.30.

The anchor time is adjustable by changing it by fifteen minutes a day. Any bigger change than that would be too drastic for my body to cope with. So over the last week, my anchor time has moved to 10am, with my bedtime at 2am. I have got to sleep quickly a couple of times, I have tossed and turned for hours and I have stayed awake all night other nights, so it is very much still a work in progress but we never know what the future will bring.

Delayed circadian rhythm disorder seemed like the maddest concept I had ever heard of but over the last week it’s slowly making more sense to me. I didn’t get into the habit of working shift-work overnight and I won’t get out that habit overnight either.

Anyone who knows me or has read this blog will know I try to take the positives out of situations. So out of the madness of DCRS, I have a bed time for the first time since I was about 12. But if my bedtime is 2am, that is 9pm on America’s east coast right? So with my bedtime at 2am I’ll be able to watch a couple more matches live.

The madness that is fibro and its myriad symptoms, including DCRS, has led me straight to the NCAA’s March Madness. That outcome could have been worse; I hope my positive outlook to my situation never changes.

P.S.: It’s important I acknowledge that I have no children and not too many responsibilities other than learning how to live better with my fibro. This is important because it is therefore easier for me to set an anchor time of 10am than someone who has fibro and children or any other responsibilities in the morning.

What Team Are You On?

It’s hard to believe it’s nearly eleven years since I enjoyed the greatest night of my sporting life. After travelling all over Ireland to win through the earlier rounds, we won the FAI Cup in Dublin in June 2001. It was an underage version of the Cup but the medals we won are just the same as the Senior winners receive. With the injuries I had in the following years before I stopped playing and the fibro that has since taken over, I never got to enjoy any more nights like that. The medal I won that night, however, sits on a shelf that I see every day and reminds me that, at one time, I played for the best football team in the country in our age group.

Some of the teams we played against had players that won many trophies and played either semi-professionally or professionally later on in life but so did our team and, for a time, we were definitely the best in the country. We had different backgrounds and skill levels but together we were confident we could beat any team in the country on any day. It’s a rare thing to have that faith in your teammates but we forged a team spirit that was really strong. We met up again last year and though time and circumstances had changed us all, the bonds were still visible and we were a team again.

Those bonds were not built overnight. We were lucky, in one sense, with the draw for each round of the Cup that year. We were drawn away a couple of times and that meant travelling the day before the matches and staying overnight close to where we would be playing. Staying in hotels can be a boring experience, with a lot of time to waste before the match would come around. Forced to spend time together on these trips, we learnt about each other and the bonds grew stronger.

I cleaned off my medal yesterday. For such a small object it evokes so many emotions and memories in my mind. Because I never got to experience another big win like that, I think it means more to me than my teammates who went on to bigger and better things. I’m proud of all the medals I won but that one is my most treasured.

Teammates all work towards the same target. Everyone has their individual jobs to do but together they can be better than the sum of their parts. Have a think about all the people that you have seen through your fibro journey. From the GP to the neurologist, the pharmacist to the rheumatologist, the social welfare officer to the gastroenterologist, your parents to your partner and everyone in between, there are a hell of a lot of people on our fibro teams. Sometimes just keeping track of all the different appointments can be hard.

I’ve seen a lot of specialists recently, all of them related to different symptoms of my fibro. They all act separately to each other but I’m hoping to combine their skills and experiences so that we are all working towards the same target.

It is four years since I stopped playing ball and it is eleven years since I was part of the best football team in Ireland. Times change, people change and teams change but I’m on a new team now, a team who have come together to achieve a common goal; improving my way of life.

Saturday night will be? Sleeping, hopefully

I hope this Saturday evening finds you in good form. If not, take a little time to chill out and relax. I’m absolutely exhausted this evening myself, but I feel in great form. If successfully living with fibromyalgia is all about setting small, achievable goals each day, then today, I’m whipping off my jersey and running to the corner-flag to celebrate in front of my fans. Metaphorically speaking of course, anyone who read my last post will know running is not my strongpoint at the moment!

Todays’ to-do list was a very short one. Go for a walk. That was all.

The last few weeks have been really tough. There have been tests to take, people to meet and forms to fill in. I hadn’t realised how tired and sore I was until last night when it came to writing todays’ to-do list. Everything gets a list these days, whether it’s what I have to do or what I need in the shops, if it’s not written down, then I’m sorry, it just doesn’t get done.

For the last few weeks I’ve had phone calls to make or appointments to keep each day. They might only be quick calls to catch up with friends or family but they still take organising, planning and executing. They are simple tasks but the nervous energy used up in planning what you will say to a doctor or the energy it takes to think and converse with anyone, use up your vital stores of energy. If I didn’t have the satisfaction of crossing something off the to-do list, then I probably would have hit the wall before today.

So last night before I went to bed, I gave myself five minutes to plan today. For the first time in a long time it didn’t take that long. I feel up to date with all my friends, my family have their own things to do on a Saturday, so I can forget about my phone for today. I’ve a film on the Sky plus box to watch tonight. I have no doctors to ring because it’s a Saturday and no secretary will ring me to arrange an appointment for the same reason.

I set my alarm for this morning but that wasn’t needed. I’ve been suffering with some really bad insomnia these past weeks and so, every hour on the hour through the night, I was able to check the time and ensure I wouldn’t oversleep. As if oversleeping was a possibility.

I’m part of a great walking group on a Saturday morning. We all have arthritis or fibromyalgia so there is a deep understanding of how each other are feeling. After we finished the walk, we had a cup of coffee together and then I drove home. I was tired before I started walking and I was tired when I finished, but sure I’m always tired these days. I drove home feeling calm and relaxed. The weather was beautiful this morning and I had the freedom of knowing I had nothing else to do today.

Getting home I made straight for my notebook. I put a big line through ‘Go for a walk’ on Saturday March 3rd’s list. I was so far ahead of the game that I decided to have a bath. What a way to spend a couple of hours. I sat there soaking my muscles and read the newspaper from cover to cover. I then put the paper down, rested my eyes and completely shut out the outside world. Maybe my mindfulness course is working? All I thought about was relaxing my tired and aching muscles and clearing my head of any thoughts. (Before anyone makes a comment, I’ll say it, no, that didn’t take long!)

So here I am. I’m sitting watching the calm sea outside my window. The sun is just sinking and it’s beginning to get a little cold but it’s a view from my living room that I love. I’m exhausted. My legs are sore and my back is beginning to tighten up again. I feel so tired that I probably won’t even be able to concentrate on the film tonight but who cares? I’m sore, I’m exhausted but I’m content. I’ll take that for a Saturday evening. I hope you enjoy whatever you’re up to tonight.