It is only now that I fully understand a comment that a friend made on Facebook.
The week before Xmas I was due to have some friends over for dinner, I was cooking my famous lasagne that I couldn’t eat (not OMS friendly) but they loved it. It was exciting as it is the one time of the year that they come to stay with their kids, we watch a Christmas movie and eat and drink way to much… Typical run up to Christmas event..
But I felt off. I was more tired that usual and I was going around using the walls of my house for support. It was then that I asked my friend to bring the lasagne with her which she did thankfully as it meant that I didn’t have so much to do. I really appreciated her support and we all ended up having a great night.
The next day things weren’t really any better. I really felt tired and my walking was off, I called to my family home and let Dad and SJ know that I was feeling under the weather. They are so great, Dad decided to hold off on his journey to Cork, so that I could travel with him. I also went to my GP, she is another wonderful woman, who listens to me. I told her that I was tired and off and thinking about taking steroids but also didn’t know if it would be worth it as maybe I wasn’t bad enough or maybe they wouldn’t work or maybe the side effects would be really bad like the last time that I took them. (The last time was in Jan 12, I didn’t feel right until about April, they really knocked me despite the initial improvement). The GP said that she would mail off a letter to my neurologist and let me know what he said. I was still undecided so I decided to post a question to my very knowledgeable friends on the OMS support page.
And boy am I glad that I did, I got some really helpful comments.
“I was tempted by more steroids lately but my nurse said that they don’t alter the progression of the disease, just make it easier for a while. She also said that, really, the side-effects aren’t worth it. Tricky. I’d try to talk to a health professional about it.”
One of the really interesting ones was from a lady who was part of Swanks study group, I was so impressed that she was part of the group and was going to impart some very useful knowledge.
“Nicola, may I add please. Sometimes, in fact ALOT for me, symptoms are brought on by tooooo much overdoing. When I was a Swank patient, I was continually, CONTINUALLY reminded of the need for moderating the energy output. We WANT, to do it all…but for some of us…it’s just not gonna work. Every person, is unique with this. Remember this though. If I go days on end without napping, I’m toast. seriously. The older I get, the more pronounced it is. I just turned 57 and have been on Swank diet for almost twenty five years. It works…but it’s not ONLY, the diet. It’s about stress reduction, and…adequate REST. Both at night, and through the day. I used to be a real caffeine freak…no more. It’s about listening to our bodies. For long term success…stay the course. Swank told me once that there’s no way to tell exactly HOW much extra sat. fat an individual can take in, so he limited it through much testing, to the 15 grams a day for everyone. He said some can cheat for years, with no result…some, very little. There’s absolutely no test to determine what will trigger anyone. understand? Dr. Swank warned ENDLESSLY of the dangers of such stress, and how it can make us so much worse. Not ALL may have that experience, of course, but in HIS work, he saw it toooo many times. The VALUE, he told me, in old literature (meaning his own, I’m fairly sure) must never be disregarded. Now days, so many have said to me “oh, his work, those recipes, are so OLD…so out of DATE. oh my…sad for them. The “NEW” information, isn’t always going to be, pertinent or applicable, to US with our particular needs. OLD SCHOOL, is about RESTING the body. The only time myelin regenerates, and it DOES…is with sustained, deep rest. period.”
So now I am on house arrest, Kieran has me sleeping at least 12 hours a day and after 7 days of it I feel very rested.
I feel very lucky to have such a great family and partner. I may be going a little stir crazy but at least I am recovering and feeling ready to get going again…