As I did not get interviews for the jobs I have been applying for, it seems I have got some time on my hands which I am using to document things for the boys. I was only 10 years old when mum died, I can’t remember her, all I have left is a tattered scrapbook with a few photos therein and an old storybook with her handwritten message in it saying “To my darling Emma-Lisa thank you for all the kind and helpful things you do for me, all my love, Mummy x x x “, that’s it, nothing else left of a life for me to inherit or put together to make sense of my own. The villagers where I grew up in Peter Tavy, Devon tell me I had apparently been in a caring role for her since I was around 5 years old. Luckily my own children won’t be in this position as they have Rob and each other, I only had me. By doing this blog my own children will have a small record of what I was doing in life. Along with what it is like when newly diagnosed with MS. I hope to goodness they will never have to refer to it for their own health. But if not then it may help someone else and even if it helps just one person then it has got to be worth doing.
I am feeling very close to mum today when I caught myself writing out a shopping list on the back of an old envelope which is always what she used to do to save paper. It is obscure the things we remember and the things we forget. I was writing a shopping list from trying to decipher the Swank Diet formulated back in the 1970’s, which I would like to try as an alternative to the disease modifiers or alongside them if it comes to it. What I have worked out so far is:
1. Under 10 teaspoons of fat per day
2. Brown/wholewheat rice, bread, pasta etc is ok but not white
3. Only 3 whole eggs per week
4. LOW sugar as this increases nervousness
5. No chocolate at all (not sure how I’m ever going to do this rule for an extended period!)
6. Only 3 cups of tea or 4 cups of coffee per day
7. No bacon, duck, sausages or red meat at all for the first year, then in small amounts
So mainly eating chicken and white fish, with plenty of vegetables. Use skimmed milk rather than full fat, snack on nuts and fruit.
For full details “The Multiple Sclerosis Diet Book” by Roy Swank and Barbara Dugan.
I have no idea if any of this is relevant to helping this disease or will be relevant. It seems that nobody really knows because when somebody seemingly “finds a cure” for MS they could be entering the remitting phase which means they would have got better anyway for an unspecified time before the next relapse and whatever sequence of events they have been doing prior to the recovery seems like a cure. I don’t really watch the news or read the newspapers but apparently they are now trying a form of chemotherapy which if it doesn’t kill you may cure you but even then in the patients it “cured” the scientists think they could have been in remitting phase and it will be years before anyone knows if they are going to relapse again or not. This is a most miserable disease.
I am certainly no scientist and even though I have only officially been diagnosed since October 2014, have been living with this for years, I want to log down what I have found out so far:
1. Love, given and received, via people, nature, animals, family. Find whatever it is that makes you feel all glowy inside
2. Have a creative outlet be it painting, drawing, writing poems or flower arranging
3. Exercise, in whatever way is appropriate for your body and the barriers you face, but don’t overdo it
4. Laugh at everything and anything, (not always in an hysterical way all the time though or people may think you are a little weird!) and make others laugh too if that is your gift.
5. Concentrate on your own gifts and put your energy into these things, don’t bother with anything that feels wrong, it will waste your already limited reserves.
6. Meditate/pray every day, be still for at least 10 minutes or longer if you are fortunate to have the time
7. Appreciate the small things, the colours in the bubbles of the washing up bowl, the sunrise or sunset, bird song, sound of the rain on the window, the company of an animal
8. Try alternative stuff, it doesn’t matter what, whatever floats your boat, reflexology, homeopathy, hyperbaric oxygen, it can’t do any harm
9. Stay positive no matter what, out of every day there is always one little thing that was good, find it and only think about that not the rest of the day if it was awful.
10. Put yourself first, sleep when you need to, rest when you can, be selfish
11. Reach out for help when you need it, join a support group if that helps
12. Plan an event you will enjoy for the coming months be it a trip or theatre visit, something to aim for
What doesn’t help:
1. Being stressed about ANYTHING
2. Trying to do too many things at once/rushing
3. Being too hot, turn the thermostat down, go for a swim, wear a cool suit, have a cool shower
4. Poor Food – if you can’t fathom a book of rules/menu plans just eat food that is from the earth, avoid processed anything. You put rubbish in, you will feel like rubbish whether you have got MS or not.
5. Being angry, forgive as quickly as you can preferably within 24hours of any wrong doing or it will poison you
6. Going over and over symptoms and lesions
7. Limit alcohol, caffeine, smoking, give up if you can you’ll be richer in more ways than one.
I am sure I will come up with other things along the way but that is all I can think of at the moment.
positive thought: be kind