This is a photo from Easter 2010 on a family holiday in Wales. I remember thinking in this photo ‘hurry up I just want to sit down’.
In the latest installment of her blog on newburytoday, former Kennet School and Newbury College student, Holly Greader, shares her thoughts on living with a chronic illness.
When living with Chronic Pain you never really refer to yourself or anything you do as ‘normal’. You feel very far from ‘normal’ and you really notice the difference between yourself and a ‘normal’ person. However, there are many things that you do or have grown up with that you assume everyone else does because you don’t know any different. You assume these things are the only ‘normal’ things about you and often you're glad to have a certain aspect of ‘normality’ in your life.
Over time you begin to realise that these ‘normal’ things may not be so ‘normal’ AT ALL. Growing up I was always showing off how bendy my joints were, particularly my fingers. Now, I knew that some people couldn’t necessarily do this however, I didn’t realise how weird I was…
I am super bendy due to lax ligaments because of my Hyper-mobility Syndrome, which means that quite frequently my hands, shoulders, legs, knees do weird and wonderful things. However, it’s usually someone else who has to point out to me that what is happening isn’t ‘normal’. I have absolutely no idea! Most of these things my body has done since I can remember, therefore I don’t know any differently.
Another example of this is recently I have come to the realisation that some people don’t mind walking, in fact some people really enjoy it…
For as long as I can remember it has hurt to walk. There has only been a brief moment in my life around 2 years ago where I was able to cope with my pain better. So, although I was coping better and able to walk, I did still have pain.
Growing up constantly experiencing pain has really altered the way I view certain activities. As you may know I am now a frequent wheelchair user, I am only able to make my way around my house and very short journeys to the car and back. The idea of walking honestly fills be with dread and I’m afraid because I know that walking means more pain and the longer the walk the more likely I am to get ‘payback’. ‘Payback’ is usually symptoms such as pain and fatigue up to around 5 days after the activity.
When I was younger and I would walk to our local corner shop with my Mum or Brother, I really dreaded the thought because I knew it would hurt. Therefore I have always kind of assumed that that’s how everyone else feels, but I have recently come to the realisation that maybe they don’t.
I know that most people walk quite a lot in a day but that's because they have to. I know that not everyone has pain but I still imagine them to dread the idea of walking. I know that lots of people enjoy going on long walks, but in my mind there is more a reason as to why they do it because why would they want to go on a long walk?
Now bare with me, I love the idea of one day being able to walk into town instead of driving, to be able to take my dog for a long walk through the woods because he loves it! I’d love to be able to go on a long walk by the sea on holiday but even if this Chronic Pain suddenly vanished one day (which it won’t) I don’t think I would fully understand that walking can be enjoyable.
This may not make sense to some and I hope I have explained this the best I can but my Chronic Pain has altered the way I view certain aspects of life. It wasn’t until a few weeks ago that it really dawned on me that other people don’t put as much thought into certain activities such as walking. This is because they don’t have to worry about pain or fatigue and payback.
As ever thank you for all of your support, it really means a lot. It is so important to me that we can raise awareness for Chronic/Invisible Illness and Disability.