Farewell privacy

“How are your bowels doing?” A personal and slightly bizarre question, right? Well… not in my world; I’m asked that almost every day. The doctor, nurse, carers and even my husband, ALL want to know how it’s all going in that department. There hasn’t been this level of interest in bowel movements since my Pride and Joy arrived into this world, over eight years ago!

The day my independence sailed off into the sunset it wasn’t alone; privacy and autonomy were part of the flotilla too. I can do nothing without help, nothing. I can’t get up, go to the toilet, get dressed, eat, walk or even talk without physical or technological assistance.

Privacy is a cherished right so many people take for granted. I was 39 when I lost mine because of MND/ALS. I remember so clearly the day it all changed: It was a sunny Autumn morning as I shuffled nervously to the front door. I had been assigned a carer to help me get ready as I had been struggling for nearly two hours to do it by myself. It was exhausting. It’s incredibly difficult to admit you need help, for me I knew it was the beginning of the end. The scales of power had tipped and MND was getting the better of me.

The lack of privacy surrounding my bowels is just the tip of the iceberg. My daily shower is a group affair. Imagine getting stripped and scrubbed and then dressed by two carers every day. Not something you’d find on the average person’s Bucket List. Fortunately I have wonderful carers who make me feel comfortable sitting in the nip while still being able to have a laugh. They have made the abnormal feel normal for me. I have to admit my relationship with my ‘A-Team’ of carers is pretty uninhibited, after three years together, inhabiting each other’s personal space, there’s not too much we don’t know about each other ; )  My husband used to feel sorry for me needing carers, that was until he heard the roars of laughter coming from the bathroom –  then his sympathy quickly evaporated!

One of the things I miss the most is curling up and having a good cry alone, in private. MND exaggerates my emotions so when I cry it’s a full-on snots and tears incident, impossible to hide as they both drip down my face; not a pretty sight. I can’t hide my sadness even when I need to most.

All joking aside, I suspect some of you may be thinking – “Oh God, I’d sooner die”.  But when you’re thrown into a situation beyond your control that you know you’ll never win, sometimes you just have to let go and see where it takes you. It’s all about compromise folks; my new best-frenemy! I’ve become a master of compromise, not by choice, I might add. I never wanted carers but now I’m fully dependent on them. They provide me with independence so I don’t have to burden my husband with my daily personal care – that’s priceless.

Life doesn’t always work out how you expect but sometimes you just have to find the strength to muddle through and focus on what’s important to you. It’s not easy…

Sharon x

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Author: Sharon Friel

In 2012 at the age of 38, I was diagnosed with Motor Neurone Disease/ALS. A death sentence with an expected term of 1,000 days; I've since bypassed my expiry date. Although paralyzed from the shoulders down and voiceless, I am still here, still living my life. Wife, mother, daughter and sister; family is what makes this all bearable. Before MND hijacked my life, I was CEO/Manager of a Credit Union and loved exploring the outdoors - cycling, walking and kayaking.

42 thoughts on “Farewell privacy”

  1. Hi Sharon,
    I am a friend of Debbie and Donals so I have known your story from the beginning. I think your blog is amazing. I know it’s not in the same league but I had bowel cancer so you have my complete understanding about how everyone is obsessed by your bowels! It becomes a dinner conversation! You are in my thoughts and prayers xx

    Liked by 1 person

    1. Thanks so much Gill. I’m sorry to hear about your cancer, I hope it’s behind you at this stage. I’m just short of getting a gold star for my achievements in the bathroom some days!!

      Like

  2. Oh crap!!!!!!A rainy bank hoilday Sunday morning in Cloughjordan, thank you for putting this into perspective Sharon. Ena (friend and neighbour of Morag, Bruce and Leontine)

    Liked by 1 person

      1. Hi Sharon my son Robert has mnd his wife is his carer at the moment he is 33 she is just wonderful I lost my brother & sister to this disease

        Liked by 1 person

      2. Phyllis, I’m so sorry, your heart must be broken watching your son going through this and knowing only too well what is ahead of him. Sending you my love and best wishes x

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  3. I can so relate, Sharon.
    Fortunately, apart from my wife, I’ve only had one (very faithful) caregiver (showering me) since being diagnosed with ALS 20 years ago. I would hate having to get used to another caregiver.
    You have to laugh at awkward situations with ALS/MND, right?

    Liked by 1 person

  4. Sharon, you make even the most unimaginable experience, something to be embraced when you have no choice. I learn valuable lessons with every blog you write. Thank you.

    Liked by 1 person

  5. Dearest Sharon. Lovely to hear from you again. My God what a struggle you have everyday. It’s wonderful that you can even think of writing. I wish you the very best. I can only offer to keep praying for you. Wonderful girl. Terri xxx

    Liked by 1 person

  6. Thats such a good read. Thanks Sharon, and ps… I sort of enjoy discussing my bum business yet very few people ask. Unfeeling yokes. My kid, who is now nineteen, still gives me news of latest deliveries down the porcelain hole… and does so with great alacrity. Before and after.

    Liked by 1 person

    1. Haha! You mad yoke!! Why don’t you start a blog about your bum business and converse with others who share your interest. Btw Cameron Diaz wrote a book on health matters and included a section on poo!

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  7. Sharon
    These dispatches from your personal combat zone always floor me. Thank you again for your generosity in sharing and for your sense of humour but never sugar coating the real issues.
    Siobhan Cluskey

    Liked by 1 person

  8. Sharon the determination, courage, willpower, empathy, generosity and understanding that you display every day astounds me. Love Mum xx

    Liked by 1 person

  9. Sharon you never cease to amaze. Only you could make a joke of crying, may your courage continue to sustain you. Love Eileen (ps, love the blogs, looking forward to the next one) X

    Liked by 1 person

  10. Sharon, you’re so brave to express all this, and strange we don’t consider it until it’s put in front of us. I lost everything from all ends of me on a journey home from London. On start of a flight and ending in care back on land with my poor friend witnessing my clean up. Life is just so I suppose. My thoughts are enjoy all as much as possible. So many sympathised with me and for many reasons passed away and we’re still here enjoying what we have. I think of you often. Much love.💖 Vicky.X

    Liked by 1 person

  11. Sharon. As always I’m bowled over by your blog! I can’t begin to say how valuable your insights on life are to all of us lucky enough to have a chance to hear them. Sending you every good wish! Phyllis xxx

    Liked by 1 person

  12. Ok Sharon I have read all the replies to your post dated 30th April and it’s very clear to me now. You have collected a college of people who are now dependant on hearing from you every few weeks for their inspiration , motivation and sense of balance in their lives that you have no choice but to keep on making this very positive contribution to every one that you connect with through your amazing talent and determination . Please keep well as best you can. You are making a difference and impacting on others.

    Chris

    Sent from my iPhone

    >

    Liked by 1 person

  13. Sharon, your bravery in the face of such adversity is absolutely astounding, your blogs are so inspirational and put a lot of perspective on life. Thank you for sharing and opening providing some very grounding experiences.

    Liked by 1 person

  14. Deepest respect and admiration Sharon, you paint a vivid and vibrant picture of your everyday struggles and manage to pepper it with funny stories and insights. You show a great resilience and a lively sence of humour that I am sure your carers, family and friends love and value in their everyday lives. You are a star,

    Liked by 1 person

  15. Hi Sharon,
    I’ve previously met you in the hospital setting and I just wanted to say from meeting you and reading your blog you are the most incredibly inspiring woman ever. The way you can turn negatives into positives is truly inspiring! I hope you continue to do this!!! Xx

    Liked by 1 person

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