Nil by mouth

My love affair with food and drink is over. That’s it. Finito. Terminado. The end. Fin.

Like all MND/ALS losses, when the end eventually arrives you’re somewhat prepared as you’ve been grieving every stage for the months or years leading up to this point. I shed endless tears, panicked and stressed about it and even tried to fight it but as you know by now, the MND monster always wins in the end.

Statistically, I should have another 40 plus years to “eat, drink and be merry”. Statistically, I wasn’t in the predominant risk categories of gender or age to get MND/ALS, but I did! My old boss used to say, “You can prove anything with numbers”. I’m no statistician but even I can see from those numbers that I’m one unlucky sod!

This latest loss has been a long time coming. The journey to the end of eating and drinking took place over three years. I first noticed the muscles in my mouth weaken when my voice began slurring. Even when I lost my voice I could still eat and drink, albeit with some modifications.

I lost the power in my hands well before I started having trouble eating. I had to be fed but this didn’t bother me too much as long as I was getting a bellyful!! I quickly discovered that we all have different eating styles and I was at the mercy of whoever was feeding me. I like to eat my vegetables and potatoes together, stop halfway through and eat my meat and accompanying sauce and then finish with the veggies and spuds. The most common style was a bit of everything on the fork, this was okay for stir fries, pasta dishes and curries but not for the meat and two veg traditional dinner! Another thing I noticed; if there was something on your plate that the person feeding you didn’t like, well, you probably weren’t going to taste it until you prompted them!

I was horrified and terrified at the prospect of never eating again. I hadn’t realised that food formed such a big part of my psyche until it was taken from me. Like any foodie, I got excited about food and loved thinking about and planning meals. I used to enjoy cooking and baking for family and friends and I loved eating out and trying new food. Food is emotive, we use it for pleasure, for comfort, for reward and to lift our spirits. I had to disconnect the emotions I created surrounding food and drink.

Slowly over the three years my swallow began to weaken and it was necessary to alter my food. I had to eliminate certain foods, beginning with dry and crumbly and then foods with bits and foods that were gritty. Things I found “gritty”, other people had no problem with. The biggest gritty culprit was spuds! They clung to my esophagus and propelled me into a coughing frenzy. I’ve been potato-less for about two years now; spuds were a big loss early on.

As the muscles continued to die away, I found chewing arduous, my jaws felt heavy so food had to be cut small. Then I began to struggle controlling food and particularly fluids in my mouth. I would have coughing fits when a crumb or drop of drink would go astray. The fluid problem was temporarily rectified by the addition of an ingenious little valve to the end of straw, that allowed me control every sip. This enabled me to continue drinking orally for about another two years. I needed a sauce to bind the food to aid swallowing while still cutting food smaller and smaller until liquidising was the last option. But I couldn’t do it, it just looked too disgusting and was a step too far for me.

I knew the only option was a feeding tube/PEG but I couldn’t bear to even consider it in the early days. The thought of it grossed me out and made me feel weak. Just thinking about it gave me the heebie jeebies!

One of the odd symptoms I experienced along the way was my palette changing completely. I ended up not being able to tolerate any spicy or strong flavors. Simple things like black pepper and citrus flavours became too much. As my jaws continued to weaken I could only bear a small amount of food in my mouth and I became repulsed by some textures. Practically overnight I went from eating eggs most days to gagging on an omelette or poached egg. By this stage I was turning off things every week. In hindsight, my body knew what was best and decided to put a stop to eating in its own unique way.

Every meal started to become a problem. It took all my strength and concentration to get through a meal unscathed. Drinking sufficient amounts of fluids took all my time and energy and the feeling of dehydration was dreadful. At this stage I knew getting a feeding tube was the right thing to do. The operation was straightforward and although I felt a bit precious about my poor tummy being permanently punctured, the relief of getting food and especially drinks in without effort was massive. It was definitely the best decision and I immediately felt better – and looked better too (or so everyone told me!). A liquid diet is anything but appealing but it’s extremely efficient. With the PEG I took the bulk of my nutrition through it and ate a small lunch. Most of my hydration and all my medication went through it too and I looked forward to a lovely foamy latte every morning. I had to give up drinking orally six months after getting the PEG and surrender eating thirteen months later.

I miss eating so much; things like biting into a slice of warm buttery toast; munching on my favourite salt + vinegar crisps or tucking into a lovely roast chicken dinner with roast potatoes, stuffing, lots of different vegetables and delicious gravy poured  over. Certain aromas are torturous; like the waft from a bag of piping-hot chips from the chipper or rashers and sausages sizzling on the pan – oh, the smells get me every time!

What has surprised me most about all this is how well I’m coping without proper food. I occasionally get moments where I would sell my soul for something nice to eat. The secret is not to let myself get too hungry and I can still manage a small piece of chocolate, some ice cream or custard; they’re my sweet slice of salvation.

You’ve heard the expression – you eat with your eyes. Let me confirm that’s complete bullsh!t ! Believe me, I’ve tried.

Goodbye food and drink, you’ve given me humongous pleasure over the years! I’m sorry it had to end like this…

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.

33 thoughts on “Nil by mouth”

  1. My wifes swallowing has gotten worse, but the hospital are happy with her at the moment, she misses butterd cream crackers, we got a blender yesterday and blended her stew for dineed, thinking of asking if they can fit a larger peg tuse so we can fit a muffin down it

    Liked by 1 person

  2. You are a wonder, a shining star, a brilliant light, a giver of hope, a most generous and adorable soul. March on, dear Sharon, you are doing brilliantly. xxx

    Liked by 1 person

  3. Jeekers Sharon I know you’ve been on this progressive road and I’m always blown away by your open and sharing posts. I also know how upbeat, positive and cheerful you are in your writing. But, oh my god as you say, it’s such a big step. You really are so brave. It doesn’t seem long since your beautifully described meal with Nevin, but no doubt you were savouring each moment at the time. You know you’re right though, at least you have chocolate! And ice cream xxx

    Liked by 1 person

  4. Hi Sharon, A compelling and inspiring post by you once again. Thank you for sharing your thoughts with us. We are all learning a lot from you. Thinking of you always.
    Chris and Margaret Downunder.

    Liked by 1 person

  5. Thank for your wonderful explanation of a disease we don’t understand unless we know someone with it. Your way with words is amazing and I lov reading your blogs. Thank you for making me appreciate what I have

    Liked by 1 person

  6. I find your writing so powerful, original and affecting Sharon. Not a whinge in sight, whilst being graphically honest. I hope the appreciation you receive gives you strength for the next day, the next stage. Love, Ger.

    Liked by 1 person

  7. Hi Sharon,
    Just seeing this. Thank you for letting us in- thinking of you and can only say each time you share you make us aware- aware of MND ,but also aware of how deep someone can and has to dig in keeping on struggling through . Thinking of you and thinking of what courage means. Annmarie

    Liked by 1 person

  8. Hi Sharon
    Have recently started following your blog and this post has had a huge affect on me. Your honesty is wonderful. I’m a healthcare worker and work with people with M.S. Over the years I have met many people who now use a peg feed unfortunately, not all can communicate how that decision has impacted their lives. Your writing has given me such an insight. Thank you! Can I share this piece with my work colleagues? I am working on the MS Care Centre in Dublin. Thanks again for your honesty. Sending love, Zena

    Liked by 1 person

    1. Zena, I’m delighted you found the post worthy to share with your work colleagues. I’ll drop you an email if you would like to ask me any more questions about my experience with a peg.

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  9. Thank you for your honesty and humour, your experience reminds me so much of my late mother’s. Family truly is the one thing that makes ALS (almost) bearable. Hang in there, as long as you can!

    Liked by 1 person

  10. I enjoy receiving your blog updates and thank you for taking the painstaking time to allow us blessed with our health the opportunity of an insight into your life. I feel I am getting to know you. I hope that each day bring little ray of sunshines for you through your family and friends. You are an amazing woman. I wish you continued strength and courage in your daily struggles.

    Take care, Joan

    Liked by 1 person

  11. Sharon your wit and wisdom always leave me without words – my husband had MND over 20 years ago and I remember so well the battle over succumbing to the feeding tube. That said, a little gin and tonic through the tube always helped to alleviate some of the pain. Stay strong, girl.

    Liked by 1 person

  12. Thank you so much for writing this blog! I have bulbar onset ALS and already have a feeding tube for my liquids and pills. More and more I choke, scare everyone half to death including myself, and know inevitably that I will not be able to eat at some point and time. Right now I do not deny any foods that I am craving except ones I know I can’t get down, so in my own way, I am trying to get ready for the BIG day that I no longer can swallow. You have no idea how much your blog has helped me since the last few days I have been throwing myself a pity party, and now, armed with what you have written, gives me the thrust to just say, “OK so it is” and be done with it! Thank you!

    Liked by 1 person

    1. Janet, I’m delighted you got something from the blog as you and I know only too well It’s a lonely and cruel journey. You will know yourself when the BIG day is, I’m sensing that you are not quite there yet. In the mean time dine like a queen every day and always say yes to dessert!! And remember there’s always ice cream. Good luck and drop me a line if you have any questions x

      Like

    1. You won’t regret it, I was so nervous about getting it but haven’t looked back. I see in your latest blog post you are looking at the eye gaze, when in the form you might like to read my post about my experience with it and if you have any questions about the eye, drop me a line x

      Like

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