Monthly Archives: May 2014

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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