THE BLOG

Life With Chronic Illness Is What You Make It....

19/10/2015 12:55 BST | Updated 17/10/2016 10:12 BST

When you are predominantly housebound, going out means usually going to a different hospital every other week and your idea of a 'fun night' turns into just about making it downstairs to watch a film with your pet. If it's not moving mountains for you, it probably means you are chronically ill. You feel like you have died and been replaced with pain. It becomes the clothes you wear and your unwanted shadow that unfortunately, doesn't disappear with the sunlight at the end of each day. If you're living with persistent pain and illness, can you truly be happy? Can you live past the pain?

Many individuals who have been diagnosed with a disabling chronic illness feel like life and the world as they previously knew it, has well and truly ended. When you are incredibly young with a chronic illness, your youth can feel stolen from you both in health and lifestyle. A lot of us go through that long term, grieving stage of our old self. I felt pure misery in the early years. Setbacks have the forceful ability to remind you of the aspects of life you are missing out on, all too frequently. You can feel lack of triumphs, success, presence and the all-important lack of living. Yet really, all we need is a little bit of time to rediscover what we can do, what doesn't increase pain levels too drastically and most importantly, what reignites happiness as close to as what we once knew. Living in pain will never make you happy, physical and mental suffering will not become any less apparent in your daily life. Yet, life still continues despite all of this and you can not continue to miss out.

I think it's important to be aware that although many of us may be chronically ill and disabled, it doesn't mean we are any less entitled to happiness, joy, fun, success and love. You might feel persistent pain and illness but you are not the illness, the difference is you have an illness. You are rightly, a human who deserves the world. Happiness might be seen as having a full life. In my head, it's always been seen that way until recently. I know I have to try my hardest to make my present happy and fulfilling in order to create a happier future. I need to believe I am worthy of all good qualities of life too, despite my disability and incurable illness (Ehlers Danlos Syndrome).

In truth, your illness hasn't completely stolen everything from you. That statement in the past would have had the ability to make me frustrated and convince myself that actually, I was just an incurable illness and will always see myself as just that. Now I want those words to start fuelling me. I do not want and will not allow my illness to strip me of my happiness each and every single day like it has been doing for many years now. I do not want it to steal my life away with the pain it provides. I also don't want that for those of you who may read this.

I've really tried to challenge myself by asking, "How can I truly and consistently re-create a happy existence when living with multiple, lifelong chronic illnesses?" "How do I re-enter the world after feeling cut off from it all for nearly 8 years, as a chronically ill, disabled young woman?" It's all I want, yet how do you go about it when living with a disabling illness? That ultimately, can only be my doing. I can take inspiration from others, I can have the want to do it but I need to find the mental strength within myself because physically, I may always be held back. That prospect, completely terrifies me. It's hard to wake up everyday and walk a few steps let alone live. Yet I know it's the only way to progress positively in an incurable, long term illness. It's the only route I can take in aiming for positive progression and as close to 'normality' as I crave. We have so much more to give that should not be thrown away because of a disabling, chronic illness.

Life is what you make it, despite the cards you may have been dealt. Life isn't always fair but it is a gift. My physical pain could allow me to stay hidden away in bed for my entire life if I allowed it to, yet I know this will not bring me joy in the long run or in my present. The present is all we have been promised and need to act upon, despite our chronic illnesses. I know that by conforming to my pain, I will never achieve any of my small goals, let alone big. I know that chronic pain on a large, everyday scale, is something that I and so many other people will deal with for life. As scary as that thought is, it becomes less scary when you gradually accept it for what it is and try to act upon making your present as fulfilling as possible. What can you achieve today? What can you do today for a better tomorrow?

Full Blog Link - The Chronic Illness Diary Of A Young Adult

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