Acceptance of a life changed

I sort my medication out on a Sunday. I have one of those pill boxes with all the days on it and separate compartments for times of the day. On a Sunday, I sort out my medication for the following week, bursting the foil packets and popping out the pills. Monday: Morning, Dinner, Tea, Evening. Tuesday, Wednesday, everyday. I look at my bedroom bin filled with the empty containers. I scroll through my repeat medication list on the website. Scroll, I actually scroll as it’s so long.

But this week it feels different, I suddenly recognise that this is routine now, habit. That those repeat prescriptions are a sign of a life changed. The repeat, repeat, repeat, its my life but not the one I expected to have. I am 40 this year and I suddenly see myself as how I am. And its a shock you know. It shouldn’t be a shock, its been eight years now of surgeries, hospitals, medication, pain, struggle. But I feel the shock and wonder if this is acceptance?

I thought I had dealt with these feelings, I thought I had accepted. But maybe I only accepted a temporary change and thought at some point, my life would return to ‘normal’. Maybe that is my mistake, thinking that ‘normal’ meant the same as before when in reality, every persons normal is different at different points in their lives.

I feel loss. Like I don’t know who I am any more. When I look in the mirror I am not too sure who I see looking back at me and that scares me. The person I thought I would be, the person I was has gone. Well maybe not gone, but is buried somewhere that I am not sure I will ever find again. And I am not sure who is left.

I suppose that what I am trying to describe is grief. I know I need to reach acceptance and to get there I think I need to grieve a little. And I feel bad saying this in a time when so many are actually grieving the death of their loved ones, it feels selfish. But I do feel like I am filled with grief.

I hate that I take so many pills just to get through the day. I hate that I am weak, and tired, and in pain each day. I can’t stand the limitations in my life, that I can’t walk far, that I can’t do the things I want to do, the things I thought I would be doing. I want to go for long walks, to explore, to run and jump and skip and play and dance.

I hate how my body looks. Which is hard to admit as I think I had gotten to a place of self love. But now I look at myself naked in the mirror and all I see are scars, and lumps and I feel I look grotesque and disfigured. That is a painful thing to say here, because I know that if I heard anyone say that about themselves then I would leap to their defence! I would tell them they were beautiful and perfect and that they were the king or queen of the whole god damn world!!

I feel that I let people down all the time. That my illness and pain makes me not enough. Im not a good enough mum, not enough of a wife or a friend. And that is hard to accept. Because I know I am trying my hardest and actually I know that is enough. But it feels like such a raw deal for the people I love.

I have been looking back on old photographs recently and I see myself and I wonder where she went. I don’t know, it is weird and I don’t even know if this post is making sense. I just feel so crappy and I thought I would blurt it all out on the page so apologies if this is a bit all over the place but I suppose it is because I am all over the place.

But as negative as this post is, I think that the recognition of how I am feeling is a step forward in the journey of acceptance.

I try and find the positives, and I know that I am incredibly lucky in so many ways, I have a brilliant husband and children and so many brilliant friends and family. I live in a nice home, I am safe, I have food in the cupboard and money in the bank. I am privileged in so many ways and I am grateful of all the good things in my life.

I don’t think my life will ever look like it did before all the surgeries started, but maybe different is ok. Different doesn’t mean worse, it just means an alternative to what I expected. So I need to carry on learning to accept and having gratitude and love for the things I do have and for the future, however that may look.

Peace and love

Sam

4 replies
  1. Judith
    Judith says:

    Different is not just OK….. it’s bl**dy marvelous dear Sam.
    I hung on every word of this post and felt moved by every emotion it brought to my mind.
    You are a treasure and remember you are never alone if you are surrounded by love – which you are ten fold over.
    Enjoy the unknown of what lies ahead, embrace it, be excited by it, for it is a journey that has been mapped out for you – not because you deserve it but because without it you would never be where you are now…. and although you did not foretell what
    was to lie ahead for you and your family – your strong spirit and determination has allowed you to be a voice in the darkness for so many.
    Huge hugs from a land downunder 🙂 xx

    Reply
  2. Emma Ward
    Emma Ward says:

    Hi Sam
    You are incredible and sharing your journey helps countless others. I am 32 years into this journey now and I have found that things have continuously changed over that time. I have learnt to make the very most of the good times, but still find it hard to accept my limitations during the not so good times. But it’s always good to remember that there’s no other place your family and friends want to be, whether you’re having a good or bad day. You prop each other up as and when needed – that’s just what you do for the people you love.
    You are not only an incredible roll model for others, but whilst doing that you are also being a great wife, mum, student….. The hardest thing to learn is to lean on others when you need support – they’re there for you, no matter what. (Though I have to admit this is something I’m particularly bad at!) For me, I’ve had Crohn’s for so long, I don’t really remember life beforehand. I was 16 when diagnosed and I had my first major surgery. A blessing maybe? 🤔
    Just remember, you are allowed to be pissed off, feel sorry for yourself, etc. This is ok – just because someone somewhere may be worse off, it doesn’t mean your feelings aren’t valid. Some days are good, some not so good – just remember to be kind to yourself – you deserve it 🤗❤️
    Emma x

    Reply
    • Stacey
      Stacey says:

      Hi Sam and Emma!!

      Thank you for this post and your comment. I had a huge flare on June 18, 2018, at 41, which led me down the road to a diagnosis of Severe Small Bowel Crohn’s. We would later learn that I had been misdiagnosed since I was 17 or 18, based off my medical history. It seemed like my life did a complete 180 in less than 24 hours. I went from doing 2 5Ks a month and eating healthy to not being able to get out of bed and consuming a diet of mashed potatoes. I gained 70 lbs in two months due to Prednisone, which also damaged my liver. I failed 2 biologics because of anaphylactic reactions.

      Almost 3 years later, I still have days where I look in the mirror and don’t recognize the person on the other side. The Sunday pill sorting and fatigue are very real. I still push myself to keep up the same pace that I had pre-Crohn’s until my body says “Stop and recharge!” I hate feeling like I’m a burden and sick all the time.

      Emma, your last paragraph hit home. I’ve said the exact same things when my family has said the exact same thing to me. I’ve had siblings tell me that I talk about my Crohn’s too much. But, they don’t see that I’m still grieving for the life I had and adjusting to my new reality. I miss my old life, but my new life is showing me just how incredibly strong and resilient I can be. I share my experiences with my students in hopes of empowering them to keep fighting their fight, and I never want my Crohn’s to affect their education.

      But, I have an amazing husband, 3 wonderful fur babies, fantastic colleagues, super understanding bosses, and the most awesome students. They drive me to continue to be strong and keep fighting the fight. I may not ever be the exact version of myself before June 18, 2018, but I’m going to get as close as I possibly can. 😊😊

      So, keep fighting and know that you are amazing, strong, and resilient. Your people will still love and support you no matter how rough the road may be at times. You also have a community of fellow “invisible illness” people who are there by your side and cheering you on.❣️❣️

      Reply
  3. Christa
    Christa says:

    Sam,
    Thank you so much for your beautiful words. I’ve searched for the words to adequately express these types of feelings. It felt as though you walked my own journey and journaled it in your pages. I even cried with you.
    Thank you for providing a path to release. Grief is part of our acceptance I suppose. An alternative life is, after all, better than no life.
    Christa

    Reply

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