(I started this blog 2 weeks ago, but you know how it goes … my recent health challenges have meant I haven’t finished it until now. Part of the reason was also that I wanted to do the blog justice & include lots of photos to really give you a feel for why THIS event was so important for me to attend – ill health or not! It’s a long blog, but I hope you enjoy it!)
Yesterday I pushed my health to its limits and beyond. And I don’t regret it one bit!
Sometimes with chronic illness there are days when we just have to push aside how terrible we feel and be part of something bigger than illness. These are the days in our life with CFS where we just have to say ‘hang the consequences’ and just live. Yesterday was one of those days.
Rarely, in 21 years of CFS, have I missed a big occasion that was important to me. Many times I have put my health backwards in this process, but I have never regretted my decision to attend whatever occasion it may be. Sometimes, we have to choose life over illness, and for me yesterday was one such day.
No, it wasn’t a wedding, although I have attended many of these while particularly unwell (including my own!), have suffered the consequences, but still managed to enjoy the day. No, it wasn’t a significant birthday – my own or someone I love. And no, it wasn’t any kind of traditional family celebration.
It was an event, an occasion, a ritual almost, that, in my upbringing is something you just don’t miss. It was a country football grand final featuring my hometown club of Navarre in the senior Australian Rules football grand final.
What?! You risked your health for a footy final?!! At a time when you are probably the sickest you’ve been for a very long time, and are doing everything possible in every other way to get well?? You risked your recovery for a football final? Are you crazy?!
Maybe. Probably. But this was one of those times that I just wasn’t willing to miss out on. I was not willing to, once again, suffer another loss due to this unpredictable, incipient illness. Call me stubborn, call me stupid, but unless I was comatose or vomiting profusely, nothing was going to stop me going to that grand final. And nothing was going to stop me enjoying it as much as I possibly could!
So I went. And for most of the day I felt horrible – exhausted, in pain, barely able to keep my eyes open, and more and more fatigued the more I talked to all the family and friends that I encountered for the day (even spending most of it in the back of a car). But it was still worth every minute!
I have always been a big believer in living life to the fullest, but with CFS and electrosensitivity that can be a very challenging belief to live out. Still, over the 21 years of chronic illness, I have managed to travel extensively, go to many live concerts, musicals and sporting events, attend many special family occasions such as weddings, funerals and Christmas. I’ve attended nearly every AFL grand final in that time, AND I have not missed a grand final the Navarre senior footballers were in in my whole 40 years.
I’m not saying that I’ve always been able to fully enjoy and absorb the beauty of these events. I have often, as I did yesterday, found myself in tears at certain times, grieving for my lack of ability to fully enjoy, embrace and absorb the atmosphere in the way I would if I was feeling well. I am not beyond feeling resentment in those moments for ‘what should be’.
Even on my first long-awaited wedding day, I woke to find I was having a ‘bad’ CFS day. I escaped on my own for a little while, cried my tears of resentment, unfairness, had my ‘why me?’ moments, and then I regrouped, rested as I needed to do, and got through on adrenaline to make it one of the most beautiful days of my life. I didn’t get stuck in the ‘what should be’ for long. I just made the most of what was!
So Why Was THIS Football Grand Final So Important?
What I really wanted to do in this blog was capture some of why this event yesterday was such a ‘no way, I can’t miss it’ day. And in the process, give you an insight into my upbringing in a small, Australian country town where sport is the staple diet, which will also maybe give you a sense of why this football/netball grand final was so important to me (the senior netballers were also in the grand final!).
And for people without CFS who may read this blog, I want you to get an insight into why someone who is extremely ill sometimes just says ‘hang the consequences’ and doesn’t listen to their body, and doesn’t act ‘sensibly’.
Grand Final Day Begins … An Early Start For Some
The day started with my Dad taking one car and driving the 45 minutes to the grand final venue to try to get a park ‘on the fence’ – at 7.15am. By the time he got there the ground was almost full and he missed his front row park (though was later able to get one as someone moved). This gives you an idea of how passionate people are about these things.
And why a ‘park on the fence’? In rural Australian football, there is usually not official seating, so people park their cars around the boundary of the football arena and watch the game from the car (the venue we were at in Maryborough is one of the rare venues with a grandstand – a large undercover stand from which people can watch the game. Our tiny town of less than 80 people is one of the other rare venues with such a facility!).
Exhausted Before I Stepped Out The Door …
My Mum, daughter, foster-brother and I left at a very leisurely 10.30am to drive the 45 minutes to Maryborough. By the time we walked out the door I was exhausted, with legs like jelly. Having a shower and trying on a number of possible clothing outfits for the warm spring day, plus doing a number of trips back and forth from my bedroom to prepare all the things I needed to take (eg pillows, food, medication, jackets, hats, and a couple of things for my daughter), and I was worn out before I started.
This was not unexpected. It was not ideal, but having had many previous experiences of such, I just accepted it. Once upon a time I would have become anxious as to how I was going to handle the day if I was already exhausted. For the most part those times have past. I just do what I have to do, and I know I’ll get through somehow (usually having prepared many supports – pillows, food etc – to get me through).
At the moment, with the detoxification process from my recent stomach parasite in full flight, I tire very easily, especially from talking. Unfortunately I enjoy talking, relating and connecting, and the excitement of the day as we drove past all the beautiful yellow canola fields on the beautiful blue-sky spring day didn’t help my urge to talk and share in the excitement the rest of the car-load of family were feeling.
Hence, by the time we reached the ground, I was like a zombie, slowly shuffling the few hundred metres with my ‘kit’ to where my father had the car parked – with a clear view of all proceedings. Trying to avoid anyone I knew (a major feat on such a day) so as not to get caught talking, I made my way to the car and promptly collapsed lengthwise along the back seat. I popped a pill to relax me and give me the most chance of actually sleeping, and attempted to rest (another needs must moment, as I rarely take medication during the day).
Rest? … Hmmm, Not So Much
I lay in the back seat of the car, exhausted, in pain, trying to sink into the sleep that I knew would revive me ever-so-slightly for the rest of the long day. On either side of the car, loud voices chatted and laughed about many topics, reunions were held as family members arrived, and rowdy teenagers filled with excitement for what the day potentially held shouted and laughed and blew some kind of loud celebratory horn within metres of my open window. I couldn’t do much but chuckle at the ridiculousness of trying to rest in such an atmosphere.
The mood of excitement and apprehension was infectious, yet I knew I had to stay laying down for as long as I could. Somehow, someway, I had to make it through this day and somehow enjoy it in the process.
Despite the ridiculous nature of my so-called resting place, I smiled to myself as I listened to the teenagers (who were me 25 or so years ago), and my heart filled with pride and contentment as I listened to my sisters arriving with their children, other people passing by and having a chat, and basically marvelling at the uniqueness of what I had grown up with and come to believe was the norm.
You see, in and around the two cars – ours and the one with the teenagers – there were four generations of people, all interacting happily and inclusively. The teens had a few younger kids with them, sharing their car, and were also taking care of a very young child of about four, occasionally admonishing him for his misdemeanours, but generally taking it in their stride.
On the other side of me, where my family’s chairs were set up, my soon-to-be 88 year old Nana arrived to join my Mum, sisters, nephew and nieces. People of all ages stopped by to say hello or make a passing comment about the games to come in the day. Most were decked out in Navarre’s colours of green and yellow.
A Family Affair
Country football is very much a family affair that does not discriminate on age or background. It may not be an eclectic mix of ethnic backgrounds by any means – mostly Anglo-Saxon Caucasians in our area – but it is most certainly inclusive of all who choose to include themselves and become part of a football club. This is one of the major reasons my tiny hometown of less than 80 official inhabitants has managed to still field 5 football teams and 6 netball teams after over 100 years.
Embracing the day … As much as possible 🙂
After almost two hours of trying to rest, and succeeding to some extent, I sat up and attempted to embrace the day. It was a gorgeous spring day of about 22 degrees Celsius, with the green grass of the football oval contrasting beautifully with the blue of the sky. Navarre’s colours of green and yellow were draped over cars and fences, kids were decked out in all the green and yellow they could find, as were many of the adults, and bunches of streamers (cut up bits of crepe paper) were flying in the breeze wherever one looked.
My beloved Nana climbed in the back of the car with me while we ate some lunch. Then, as the big game was not far off starting (there were five games of juniors and Reserves in the lead-up), we decided to take our chance to visit the ladies room (a generous title for the rough toilets) situated, naturally, on the opposite side of the large ground.
I wasn’t looking forward to the walk, as a 10 minute stroll at the moment leaves me with weak, stiff legs – and I’d already walked that much already. But once again, needs must, and off we went.
Usually on grand final day one of the things I relish is catching up with all the other former Navarre residents and players who also come along for the occasion. They travel from far and wide – from Melbourne and sometimes interstate. Usually I can’t walk two steps before seeing another familiar face and stopping to have a chat about life since we’d last met. But, once again, things were a bit different yesterday.
Adjusting to the conditions … And counting my blessings
We walked around the back of the main walking area, which meant we didn’t see anyone we knew. This was one of the many sacrifices I made on the day in order for me to make it through till the end, and hopefully see my team win a much-longed-for premiership. The last one was in 1999. The fact I had my beloved Nana beside me helped me a lot to count my blessings rather than lament what I was missing. How many 40 year olds get to count their 88 year old Nana as a close friend and share such special days together?!
Let The Games Begin …
By the time we’d visited the facilities, it was a few minutes until the Navarre senior footballers were to enter the arena. They do this in a traditional way, running through a banner made of yet more green and yellow crepe paper.
When we were teenagers we’d spend the whole week making the banner, with the help of our great aunts who had done it for years. My Nana told me those two same great aunts, now both in their 80s had spent the week putting this year’s banner together. It does make me wonder what will happen to some of these treasured traditions when that older generation is no longer with us. But for now, I stay grateful for these amazing women and the contribution they make (which goes WAY beyond banner making!!).
So after watching the Navarre ‘boys’ run through the banner, Nana and I shuffled back around to my parents’ car. Even with her walking stick she was faster than me! But despite my fatigue and pain, I soaked up the atmosphere and enjoyed my Nana’s company. Grand final berths are rare, and having my Nana to share them with may not happen too many more times.
Watching The Game
Nana and I sat in the back of the car and watched the game, having paused in our walk back for the national anthem. I say ‘watched’, but because Nana’s eye-sight is no good these days she relied on the radio telecast of the game on the car radio, while I peered through the gap in the seats. My parents’ other foster son was in the front.
Unfortunately the walk had exhausted my almost non-existent energy reserves, so all I wanted to do was curl up and go to sleep again. But I’d come for a reason, and sleeping was not on the cards at that stage, no matter how bad I felt. And in a lovely turn of events, I had something very exciting to keep me awake as Navarre streaked ahead to be 5 goals to almost nothing against their traditional rivals Lexton at the end of the first quarter.
It turned out to be a very one-sided game, with the ‘right’ side – my beloved Navarre – getting further and further ahead as the game wore on. I don’t think any of us could quite believe we were witnessing a premiership come so easily after having lost the last two grand finals and not having won a senior football premiership since 1999.
Feeling Sorry For Myself …
By half time I was completely exhausted, finding myself almost unable to enjoy the eminent premiership win because I was in so much pain and was so tired. The senior netballers were also playing their grand final at the same time, but I didn’t think I had the energy to go and watch in the half time break of the football. Having been a Navarre netballer myself, this distressed me, but I just thought I couldn’t have everything.
But then I got out of the car to shuffle to the scoreboard and take a photo of the half-time score – ever the historian, I couldn’t miss that opportunity. I haven’t mentioned that I spent three years from 2009 to 2012 conducting interviews, researching and writing a 200 page history book of the Navarre Football Netball Club’s 100 years. Hence, I am the unofficial club historian. Actually perhaps I’m the official club historian, albeit a voluntary role.
As the scoreboard was close to the netball courts, I decided ‘in for a penny, in for a pound’ and went over to have a look. Amazingly the girls were up by 15 goals, which is a huge amount, and it looked like they were also going to come away with the premiership. An incredible moment in the history of my beloved club, but I sat leaning against a pole in the shade, with tears rolling down my face.
I was so sick I couldn’t enjoy this momentous occasion. I was there, but at that moment I felt I may as well not have been, as all the joy, the excitement and happiness of the occasion was being eclipsed by my fatigue and pain.
I watched as if in a dream as the supporters on the side of the netball court cheered and waved their streamers with every extra Navarre goal. I knew the feelings I would usually be feeling in that situation – immense pride, tears of joy, excitement for the girls who were about to have a dream come true. But I couldn’t muster up the energy to feel the emotions. I just rested my head on the pole and let the tears of self-pity and physical exhaustion roll down my cheek. This was not how it was meant to be. But I was there. I could always say I was there.
Regrouping … resting … and celebrating!
Back to the car and I couldn’t resist the exhaustion any longer. I curled up on my side of the back seat and rested on my pillow, listening to the radio telecast of the third quarter of the football. Navarre just got further and further ahead. As a spectacle of football, it wasn’t too exciting, but when it’s your team about to win a grand final it’s the one day you don’t really care that it’s a boring, one-sided game.
When the final quarter started, I’d had enough rest to marshal some emotion back, and my sense of tradition and loyalty to my club kicked in. As much as I could, I was going to sit and soak up this last quarter, watching the growing excitement in all the other supporters around me – mostly family in some way or another – and the players on the ground. If adrenaline was all that got me through, that’s what I’d rely on. Tomorrow I’d deal with the consequences.
So as the final siren sounded, I didn’t jump the fence and run to the players as I had done in my teen years when every player was a relative or friend. Frankly I hardly know any of them these days. It was the first senior premiership where a Bibby hadn’t played, although I still had a couple of cousins playing – with one who missed out on selection at the last minute, much to his devastation.
What I had realised throughout the day was, although I still feel a strong affinity with my hometown club, I no longer have the strong emotional attachment to the club and premierships as I once did. But what I do still have an emotional attachment to is all the family members – parents, Nana, aunts, uncles, great-aunts, great-uncles, cousins, 2nd-5th cousins, and lifelong friends – who put their heart and soul into the Navarre Football Netball Club. They, as I did in my younger years, still live and breathe the club, and benefit from the connectedness, sense of belonging and sense of purpose their involvement in the club brings.
Living The Joy through the People I Love
And so, instead of rushing out onto the ground to envelop the players, I took my time to take the whole scene in. Usually I’d have my trusty video camera videoing all proceedings, but, as an indication of just how ill I am right now, I hadn’t even thought to bring it. I used the video on my smartphone to video some of the excitement of people running onto the ground, and the team and supporters gathering in the centre of the ground in their celebrations.
I calmly climbed the fence and strolled slowly out to the middle, soaking up other people’s joy. Enjoying other people’s excitement and finding that it was almost as satisfying as feeling it myself. Despite being brought up in a win-at-all-costs town and valuing winning in earlier life, I now realise that it wasn’t really the winning that I loved, but the connectedness it brought to me and all those I shared it with. It was the community aspect that I loved – and that I still love.
I skirted around the crowd of players and supporters, watching joyous faces, seeing tears of joy and relief, soaking up the emotions of people who had put their heart and soul, and bodies, on the line for years and years to get the result that was achieved that day. I watched my cousin, who just missed out on selection, with his medal around his neck (for being an emergency), and tears sliding out from under his sunglasses (I also gave him a hug!). And in my numb, exhausted state, I generally became an observer of humanity, of community, of bonds built over years of voluntary work, of love between parents and sons, husbands and wives, boyfriends and girlfriends and of celebration of life.
Peace, gratitude … and belonging
No, I didn’t really feel part of it. I felt distanced from all the celebrations – distanced from my body really – like I was in a fog, in a dream. Watching someone else’s life. But in amongst it, probably a result of exhaustion, I felt incredible peace and gratitude. Despite no longer living in my hometown, and not knowing many of the players in the premiership side, THIS was my tribe. This was a place, a group of people, where no matter how many years go by, no matter where I live, how successful I am or how sick I am, I will always belong. Writing the history of the club helped my cred in that respect too ;-).
I realised, too, that winning isn’t everything to me anymore. But watching the joy it gives others is something I do love. Thinking about what the last thing was that truly brought me unbridled joy, I realised it was sharing with a friend when one of his years-long hard-worked-for dreams had come true. It was celebrating his achievement and seeing him so happy that made me so excited. So turns out it’s not all about me anymore.
I didn’t make it to the celebrations at the football ground last night. I desperately wanted to because hearing the joyful speeches and acknowledgements would have fed my love of seeing other people’s joy. But I had to draw the line somewhere. I didn’t expect to recover particularly well from the day, and I decided I’d punished my fragile body enough. I would just have to miss out on the celebrations that we’d waited 14 years for. But sometimes, that’s life.
The Next Day
And guess what?! I woke up today actually feeling okay. As people with CFS know, okay can mean many things, but for me it meant I didn’t feel any worse than I had the day BEFORE the grand final. I’d thrown the dice, taken the chance, and come out of it pretty much unscathed. I think it’s more because it’s not so much CFS at the moment, but a different thing – the detoxification process from the stomach parasite – but I’ll take the victories when I can. And THIS was as much a victory for me as the football premiership win.
It doesn’t always work out that way. In fact, usually it doesn’t. But I was willing to take the chance of feeling worse for a day (or 10) because … well, this darn illness has ruled my life in so many ways for so long now. Sometimes it’s just a matter of taking a stand, choosing to LIVE and putting up with the consequences!
Viva la Vida!
It’s a massive blog, I know, but I hope you get my message. Let me know on Facebook, Twitter or in the comments!
Keep Smiling
Louise
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Gab says
Loved this blog until I got to the end and there was that bloody hideous photo!!!! At least the rain had flattened any perm!
admin says
Of all the people I thought might read this blog, you weren’t on the list Gab. I thought I’d safely get away with including that “dreaded” photo at the bottom for a bit of humour. It did cross my mind that there was ONE person out there who might not appreciate it so much, but SHE wouldn’t be reading it so she would never know! Wrong, wrong, wrong Jana! :-). I am very happy that you loved the main part of the blog though Gab. Of all people YOU would understand my determination to be there at any cost. And, on the bright side, I doubt anyone else reading this blog would pick you in the photo. I reckon they’d have a job picking me (though I HAVE aged well!!). They at least have a reference photo for me. Let me know if you want me to write a blog about still having great relationships with your cousins when you’re 40, and I’ll happily post a current photo of you just to balance it out ;-).
Thanks for taking the time to read the blog. I really do appreciate the support.
Love you
Lou
Sharon says
Hi I found you through Twitter.. Wow incredible going to this event and feeling and suffering the way you do.. Your courage and tenacity is incredible.. I too have to push myself.. I’m almost deaf so whenever I’m anywhere there is people or something going on I miss so much.. I don’t hear it… I feel like I’m not connected.. Not a part.. I have often just missed out but umm yes I’m pushing myself more these days.. No matter the struggles and what I miss and how much I understand.. I have lived in small communities before and the sports day bring everyone together!! You did well to capture the atmosphere…
admin says
Well Sharon, you’ve sure put a smile on my face with that comment, so thank you! It was a topic I felt I needed to somehow convey, while at the same time not encouraging people to push themselves beyond their limits on a regular basis. For people with CFS, in particular, that is NOT a good idea (which I’m not sure I included in the blog, so may have to add that). I’m so glad though that you thought I captured the atmosphere of an Aussie country football grand final well. It’s so hard to get across to anyone who doesn’t know the passion behind it all why I would risk my health to go to something like that.
I can only imagine the challenge it is for you being almost deaf and attending any type of event. My Nana, who I’m very close to, and my former father-in-law (both of them actually – ;-)) struggle to hear, especially in crowds. You seem so young to have to deal with that – plus having 3 kids still at home (I was about to respond to your Tweet after I wrote my most recent blog). That feeling of being disconnected from the world is one I’m very familiar with. If you read my blogs on my life with electrosensitivity here & here, you will get what I mean. Since pregnancy 10 years ago I get extreme headaches from electro-magnetic fields, so this computer, tvs, phones, heaters, even cars give me incredible pain. For 3-4 years I tried to completely avoid the pain, so that meant pretty much completely avoiding life in this electronic world. I truly felt like a misfit who didn’t belong anywhere. But then I changed the way I looked at it all (via a few great programs at a place called Landmark Education), and I decided that I’d rather LIVE with the pain and use computers and watch TV as opposed to NOT LIVING, but having less pain. On a day like today when my whole body is in pain because I’ve been using the computer too much finishing an ebook and launching this blog in audio, I wonder how I can keep going. But I know that the satisfaction and purpose it gives me is what keeps me fulfilled in life. I’d love not to have the pain, but that’s just the way it is just now. So I live with it.
Thanks for popping over. I hope you can find some other blog posts you resonate with as well. I’ll check out your blog too.
Keep Smiling
Louise
Janet Winter says
Great blog, and you are second from the right with the big smile?
Louise Bibby says
I’m impressed Janet. I look like a drowned rat in that photo (as we all do!), but I must admit I was a very happy drowned rat at the time! Despite all the hardships I’ve faced, from playing a netball grand final in driving rain and a thunderstorm at 16 to 21 years of CFS/ME & Electrosensitivity, I’ve always manage to keep smiling – even if it IS a case of “fake it till you make it sometimes!” ;-).
So glad you liked the blog. It was a very personal one, written more for me than my audience, I think. Sometimes you just have to write a blog like that – one that is more self-indulgent than others. I’m so glad it resonated with you. I hoped it would resonate with others, but you just never know – especially when it’s about pushing beyond your limits (a definite no-no/taboo subject in many CFS/ME people’s view, despite the fact we all do it at times :-)).
As I say in the blog, sometimes you just have to live a little despite how sick you are. I certainly don’t do it every day though!! 🙂
Thanks for reading & I hope you are doing well with your health and business.
Keep Smiling
Louise