Pro cal junkie!

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At the last meeting with the consultant at the hospital in Cork she was delighted with how well I’m doing. To be honest, it didn’t mean that much to me as I feel its just luck that I haven’t popped my clogs before now. However, since diagnosis almost four years ago I’ve never really thought I would go to my grave prematurely.
Ignorance is sometimes bliss as I have to admit that I barely knew anything about this disease and preferred it to stay like that. I only found out recently that 75% of people with MND die in the first three years. I clung to their words on that awful day “it affects everybody in different ways ” and to this day, that sentence is my saving grace. I’ve heard of many people living with this condition for many years so I refuse to buy into the statistics.
I mentioned recently here that my shoulder blades etc were getting sore after a while in the wheelchair. With this in mind, I asked the consultant if I could speak to the dietician while I was there. Lucky I did because she recommended bumping up my calorie intake via a product called pro cal. Now I’m a pro cal junkie! A month on, now of taking it regularly after meals mixed with smoothie I no longer get pain. I even remember voicing my concerns to Lucy prior to our recent Dublin trip about not being able to stay in my chair for long periods of time and how this would affect our trip. But it didn’t and you know how the holiday went. It was a great success! And I felt really comfortable in my chair.
After a recent course of antibiotics my breathing was affected. The doctor recommended using an inhaler temporarily. I was extremely worried, more than ever. The doctor was taken aback by my concern. “If my breathing goes “, I told Lucy, “I’m screwed “. Four days of terror followed. Not even the doctors words of reassurance that it could be a post chest infection blip helped. I honestly thought I was on my way out. I was terrified. In four years, I hadn’t been scared of dying but now I was. I found myself longing for the time before the infection when everything was ok and manageable. I didn’t realize how lucky I was before. Thich Nhat Hahn, Buddhist poet, talks about the “non toothache “, the remembering of how good it feels NOT to have that horrendous pain in your mouth. Only when everything passed a few days later could I experience the non toothache again. A major coughing episode seemed to loosen and clear the airways leaving me free to get over my panic and continue getting on with my life. I’ve been feeling so well since then with a “no toothache ” attitude to life.

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9 responses »

  1. Hi Star,
    Your photos & your attitude are total proof of how WELL YOU ARE! It was an amazing 5 months with you all in Ireland and I feel we parted ( temporarily ! ) on such a high,hein?! It shows that if one consistently takes care of ones health it pays off! Keep on keeping on ( I need to too ;-)) ) – roll on July xxxxx

  2. In all the years, we’ve never really spoken about the disease/stats etc. You are an amazing woman to speak so openly about your fears, your life and you bring us closer to you everyday by sharing.
    Years ago you told me, while making me a tea one evening in Kinsale, that you were going to beat this thing….you have Em, you said it and you did it!
    You look great in the photos. So sad I missed the celebrations xxx Mel

  3. Dear Pro Cal Junkie,
    Having read one of the most wonderful letters that I have ever been privileged to read it just struck me that lesser pieces of journalism have been made into books and films. You should be enormously proud of yourself Emma…..I certainly am proud of you.
    Kieran

  4. Tremendous post Emma! It has stayed with me all week. The non tooth ache attitude really impacted me. I found myself appreciating the simple activities and abilities of my body.
    You are more than amazing Emma..I can not find words to describe how incredible you are!
    SO happy that you have discovered pro cal and that you’re having such great results. You looked truly beautiful in all the photos. I agree with the others.. your writing is superb, and you can do anything and everything, magazines,newspapers, books, film..
    With much Love always,
    Nick xooxoxoxo

  5. Em, as usual am in awe of your strength, courage, determination. Not to mention your wonderful writing ability, correctly lauded as journalistically top class.
    Having known the discomfort of chest infections over the years (but not on the scale of the one you describe – you baba), they are extremely debillitating and distressing when the cough is bad so when you have one, you must really nourish your body. I’ve been reading amazing things about foods that fight inflammation in the body. Inflammation places stress on the immune system and can lead to infections etc – so eating lots of anti-inflammatory foods promotes better immunity. If you can, try to incorporate some or all of the following into your already healthy diet: turmeric (in curries, mixed with couscous or rice), garlic, ginger (fresh), salmon, mackerel, tuna, berries, spinach & kale, beetroot. Nuts especially almonds are excellent – you could put ground almonds in curries etc. I find whole nuts catch at the back of my throat now I’m older so I’m a bit nervous of them so tend to crush them before sprinkling on salads etc.
    I’m sure you know all this but thought I’d mention it anyway!
    I’m glad you’re in good form after what sounded like a scary bout of consumption but no better woman to come back fightin’ fit. Hugs, think of you lots and hope to see you again soon. XX

  6. Hi Emma .

    You are looking great in the about above photo. I love that concept of the non tooth ache ….
    I read an article last Saturday in the Irish independent about Simon Fitzmaurice who like you is living with MND. Like him Emma it seems you have the intelligence , guts and bravery to think outside the circle regarding this condition and therefore are beating all the odds and changing the way that MND is seen to the rest of the world. Good on you . Please keep it up because you inspire the rest of us!
    Cal x

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