Posts Tagged ‘Feeling Philosophical’

This weekend has been wonderful for lifting the spirits. Yesterday, I went for a short drive to town, which happens to be on the coast. I only stayed in the car, while the boyfriend nipped in and out of shops on the retail parks, but it was nice to get some fresh air and see the world flying by, instead of being stuck inside. Saturday was also both my Mum’s and my Niece’s birthdays and I was looking forward to spending some time with them today; making plans for the afternoon ahead, wrapping presents, buying balloons and special treats.

My brother brought my niece to visit this afternoon and stayed for Sunday dinner. They don’t live locally and I don’t see as much of them as I’d like to, so this was even more of a treat.  It was her first birthday and even I can’t believe how fast that first year has flown, she’s turning into a little individual and it’s lovely to see.  She opened her presents, had a play with her new toys and the helium balloon we’d bought her, then we all took turns in having a cuddle with the little wriggler; she will be walking soon and already speedy in getting about! After dinner, we all drove to my Mum’s to wish her Happy Birthday with some cuddles from her grandaughter. I hadn’t seen my mum since being discharged from the hospital two weeks ago and I  admit I was in need of some cuddles too hehe (You’re never too old!).

It was a struggle getting to/from the car on the crutches but once I was inside I at least had a ‘proper’ chair to sit on – I’ve mentioned the carers that visit me at home keep complaining about our sofa being too low and wanting me to purchase a special armchair… well I had a brainwave last night.  My nan had one such chair and when she passed away, four years ago, we couldn’t bear to part with it and it has sat in my sister’s bedroom ever since. It is absolutely perfect for me right now, so we have brought it home for me to sit in during the day. My nan was always a huge support to me when she was alive, I talked to her a lot about my illness and she would try anything she could to bring me relief – from adding me to the prayer lists at Church and bringing me Holy water from Lourdes, to looking into alternative therapies, treatments or foods and buying me useful gadgets to take the pressure off my joints. I think she would be really pleased to think that something of hers is helping me now; and sitting here I feel like she is with me somehow.

So a lovely weekend in all, spent with most of my favourite people. It’s amazing how these times can have such a healing effect on the body and the soul, even considering how much it has taken out of me physically (and believe me, I am exhausted now!)

I hope I don’t suffer for it too much tomorrow, but even so it will have been worth it 🙂


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Today is the last day of July and Juvenile Arthritis Awareness Month; that doesn’t mean that I think we should relax our attempts to raise awareness but I still wanted to mark it by looking back at my own experiences. In a way it follows on from my post a few days ago, on children learning to cope with Juvenile Arthritis.

Sometimes, I look back at photographs of me as a small child smiling at the camera and feel sad, not for myself but for the person that little girl could have become; for all that I know she will have to face in her future.

I was too young to really understand the significance of what was going on throughout my first phase of illness; I just remember feeling unwell in exactly the same way I do now – with the fevers, fatigue and pain.  I must have known that I was different to other children in certain ways; after all, not every four year old needs a buggy because they can’t walk long distances, or wears a neck brace and leg splints, but I felt happy and secure in my infant world.

As a teenager and young adult it became more difficult; I mourned the loss of the life I’d had in my years of remission, the activities I had to give up and the new experiences I felt I was missing out on. I’d always had a head full of dreams and ambitions but I had to learn to adapt them to fit in with my limitations – instead of being active and sporty, I became academic; career plans and dreams of world travel and charity work fell on the back burner, but I found a job that I enjoyed and visited beautiful places closer to home. While other people sailed through life I plodded along slowly, a few steps behind, but always reaching my goals.

But it wasn’t the life I’d dreamed of and at times I was consumed by frustration at everything that this illness had taken away from me, before I’d even had chance to experience it.  I would find myself wondering where that little girl in the photograph, the younger me, would be if it wasn’t for Still’s Disease; what type of person would she be now if I’d never got sick? Surely, her life would be better without all this? Maybe she’d be prettier, more confident and successful – sailing through life with everyone else…

But then another part of me, (the part that’s like a slap in the face and tries to make me see sense when I’m feeling low), tells me that this isn’t neccessarily true and besides, if it wasn’t for everything that I’ve been through over the years I wouldn’t be the person I am today – and you know what, I actually quite like that person.  How different do I really want to be, truly?

Living with this disease has opened my eyes to so much that I may have failed to notice otherwise. Over the years, I’ve learnt to value the things that are really important to me in life, to try not to worry too much about the things that aren’t; to appreciate beauty and pleasure in the simplest things, to find the silver lining in every cloud and to treasure the most important thing of all – life itself.  I hope I’m right in saying that it’s made me a better, stronger person in many ways.

So I ask myself again, what would I really be like if I hadn’t gone through it all and would my life really be any better?  Of course, we’ll never know for sure, but there’s an equal chance that I may be worse off; that I wouldn’t be as content as I am right now, or as determined; that I wouldn’t be surrounded by so many wonderful people both in real life and online, know the value of real friendship and love. 

Perhaps things haven’t turned out too badly for that little girl after all.

After rethinking things in this way, I look at that photograph again and instead of feeling sadness I feel something closer to pride; I think of everything that little girl has had to face and yet she’s survived and come through it all, and most of the time she’s still smiling.

And I hope that others can learn to view things in this way too. Many people deal with chronic illness every day, we’ve all experienced that sense of loss and wondered what if? But we are who we are because of the things we go through. It may sound cliche, but every scar tells a story and whatever doesn’t kill us, really can make us stronger. Now if only we could transform that into physical strength, we’d all be superheroes.


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