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When Another Year Passes by With an Incurable Illness

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When Another Year Passes by With an Incurable Illness

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Getting teary and emotional at New Year is common and it can be for many different reasons, but the more I think about mine, the more it feels too real and unfortunately that’s the problem. When I hear the words “Happy New Year” around me and the clatter of champagne glasses I smile, join in and chant alongside them. But inside my stomach is doing butterflies as I take a large gulp in to try stop the waterfall of tears just wanting to cry from my eyes. It’s real and it’s here, I can’t stop it, I can’t control it. Just like my debilitating condition.

New Year is hard because it reminds us all it’s another year gone by, and for me I find that incredibly difficult to cope with and accept. In reality, I feel like I can’t cope with it, because if I do then I have to accept that it’s been another year of this illness, another year ahead of the unknown, 365 more days trying to stay alive and praying and hoping for good stability and treatment. If I accept it’s 2017 and a new year, then I have to cope with the fact that it’s another year further away from where I was before I was unwell. It hurts me so bad inside because I feel I’m being dragged further and further away from when there wasn’t a pressing and progressing genetic condition over my every move. I could cope with being unwell, being in hospital a few times a year and on small amounts of medication when I was young — I mean, you keep going, that’s just what you do.

But when it takes over your whole life and nearly takes your life it can become a different story. All my problems were actually all linked to one genetic condition which then was causing all of the complications including the life-threatening ones is something I couldn’t comprehend then and still don’t now. In total over the last three years I have spent 20 months in hospital and in that time (in bites of seven months and two months/weeks at a time) all you have to focus on is staying alive, getting through the next hour and the next day and the hospital is your home, your family and it still is now. Being at home is different, though — you might start the process of grief, because in the hospital you can’t because at the time you’re just trying to survive.

I will always keep going and I will always keep fighting, but I battle with grief every single day, coming to terms with what my life is now, the reality and the seriousness of the illnesses I have. There is no time limit on how long it may take. Some people may come to terms with things very easily, some may take longer. There is no right or wrong. Though most of the time I am so hard on myself to feel I should be stronger, to feel I should be better by now. But I have to remind myself I’m going through this, no one else and no one else can fully understand, even those fighting chronic illnesses, though they do have a lot more understanding about the medical and emotional side, and it’s good being able to have friends to turn to.

It’s tough on not just me, though. It’s hard on everyone around me and the complexity this illness brings with the unpredictability of not knowing what’s round the corner is a hard life to lead. Things can change day to day and minute to minute, plans can often be cancelled and you are constantly on alert whether watching for deterioration of infections to planning surgeries and the next hospital admission. But I think one of hardest things for those closest to me is watching me scream in pain with tears down my face, just willing anything to lighten the load and being so unwell at times with so many tubes coming out it’s hard to even recognize who I am anymore. The want to “fix it” which is something I have witnessed a lot around me, coming out in actions, behavior and emotion. As much it hurts me, it hurts them and all they want to do is take it away and how much I wish that was true.

Coming to terms with a genetic condition you cannot cure and one where at any time any of your organs and systems could start deteriorating to the point of not having any function anymore, which you try to keep stable but in the end have no control over, is something you can only comprehend when faced with.

You go through all the grief processes you would in any other grieving situation, you feel denial: “No, this can’t be happening, no it’s just a mistake, please let it be wrong.”

Then anger and hurt: “It’s not fair, I don’t want this. What did I do to deserve this, is it my fault, who do I blame, how will I cope?”

Then I move on to bargaining, where I will do anything to change the situation, go back to how things were before: “If I make up for every mistake I’ve made will it go away, I’ll try, I’ll do anything, please?”

Then the depression: “I don’t think I’m strong enough for this. This is hopeless, how will I cope, everything’s changed how will I adjust, I can’t.”

Then comes the acceptance. This is when you have learned to accept where you are and have learned to cope in the ways that are best for you. To accept that although it is an extremely difficult situation to be in things will be OK. I will still achieve, I will still make a difference in my lifetime and although so much has changed I can adapt and find my purpose in this world.

There is no right or wrong way to grieve and you can go through all or just a few of these feelings and in any order. In short, you learn to cope but no two ways of coping are the same and no two people are the same. There is not a time clock on which you must come to terms with a life-changing illness. This is something people have said to me in the past and it made me feel I’m not good enough or strong enough as I’m not at acceptance yet. But those who love me remind me I’m going through it, not them and no one else can judge my journey or tell me how I should feel or what I should do. Support is so important and I have that in different ways, but in the end it is my story and until those people who judge me have walked in my shoes for those 20 months in hospital and 12 months to understand just a small bit of what’ve I’ve been through and to know how it feels to fight what I am right now, physically and emotionally. We are all battling our own demons and I would never judge anyone else or comment on their troubles or tell them what they’re doing wrong, so let’s all remember that and have respect for one another. Everyone is facing a battle you don’t know about.

For me, I’m still keeping going, just taking a day at a time, getting the support from those around me and my specialist teams and battling to keep this body the best it can be. Emotionally things are difficult but I will not give up, I couldn’t. I’ve lost too many friends to give up on life. I struggle and I can break down and have days where I just want to hide under my duvet and not come out, but I will never give up. I’m still fighting through the grief and I’m in the midst of it all right now.

I don’t know how long it will take me to come to terms with my reality, but I should not be ashamed of that, nor should I let anyone get me down by those who judge too quickly or act hurtfully towards me. I’m me, this is my story, my journey and it will take me as long as it takes. Those who love me and know me well know that and I know that they respect me for who I am, what’ve I’ve been through, am going through and will keep supporting me through.

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