Song for MS

One of my favourite, kiss ass songs is “Hand In My Pocket” by Alanis Morrisette. Reworked for my flavour of multpile sclerosis, RRMS. 
I’m sick but I’m happy
I’ve RRMS but I’m fine
I believe i’m still healthy, yeah
I’m in denial but  I’m grounded
I’m sane but I’m overwhelmed
I’m sick but I’m hopeful baby
What it all comes down to
Is that everything’s gonna be fine fine fine
’cause I’ve got one hand in my pocket
And the other one is giving a high five
I’ve relapsed I’m not happy
I’m scared this is the end
MRI show more lesions, yeah
I’m mad and I’m angry
I’m sad and I’m  overwhelmed
I’m blind but I’m hopeful baby
What it all comes down to
Is that everything’s gonna be fine fine fine
’cause I’ve got faith and friends and attitude
And every day I’m healthy, I’ll live my life.



My Swankish Diet 8kilos in 3 months

Swankish diet was never about losing weight. It is the only control I have over this stupid disease. It wasn’t easy, giving up my beloved chips and gravy, hamburgers, nachos, cheese cheese and more cheese, and limiting red meat.

Breakfast is one or two pieces of fruit. Grab on the way out the door and eat on way to work.

Snack during the day is a cranberry and nut mix. 

Lunch is either tuna on cruskitt or a piece of grilled fish. Still dislike fish, but it is becoming a habit.

Dinner is now fish or salmon twice a week, kangaroo once a week, pork and chicken with only one or two red meat – low fat cuts such as rump. With heaps of vegetables.

Other snacks are jam on toast, cupcake.

Havent gotten around to exercise, but still 8 kilos weight loss in 3 months is a bonus. If I am going to consider cup half full, this is it.

Graceful living to the end

There are three women I think of as role models. The first was diagnosed and beat breast cancer. But when it came back into her bones, she knew it was a matter of time. She had a loving husband and three daughters. Her long term goal wasn’t to be at their wedding, it was to see them reach high school. In the meantime, she wrote them letters, built scrapbooks so that as they grew without her she would still be there. Her final year was best provide happy memories that would hold them longer than she could.

Another mother had her first bought with cancer when her daughter was a baby. She has fought the good fight and with her daughter now in mid high school, the fight is nearly over. But she still volunteers, chauffeurs girls around the soccer field and is a positive light. I don’t know how she does it. I am sure there must be dark and angry days. I am sure she has had days screaming ‘why me’, but she glows with inner grace and beauty.

The third woman is my age. Her children are the same age as mine. I have served on committees with her husband. He is lovely, she is so very nice and warm, the kids are just the loveliest joyous kids to be around. Cancer invaded her a couple of years ago. Since then she has been on all manners of chemo, flushed with it, surgeries. Remission comes and goes. When it goes, she gets them zapped. When she is in remission, she and the family live and enjoy life. Unspoken is time. Unspoken is the grace and prayer and positive outlook her whole family possess.

these three women are my role models. I pray that they continue to extract every joyous moment from life.


Same life through new eyes

My life isn’t change with my MS diagnosis. But the way I view my life changed.

I take the stairs. Not because of slow lifts, but because I enjoy being able to. At work, I can chose the lifetime or chose the stairs. I feel the muscles in my legs. It feels good.

I gave up fried food. Chips and gravy. Hamburgers. I miss them. Apples, bananas, fish just aren’t the same. But giving up fried food has had a benefit. 10% body weight just gone. Waist has returned. Cheekbones rediscovered. Jeans fit. It feels good.

my brain is clear. I can read, recall, think and analyse. I don’t take it for granted. A month ago I read a page and forgot what it was as soon as the page was turned. I am loving the clarity of thought. It feels good.

Thanks to MS, I have a chance to live again. To see my life through new eyes. And that feels good.

It’s Not a Tumor!

Sometimes I wish multiple sclerosis had defined symptoms.  Like a broken leg – bone is broken/bone will heal.  Optical neuritis impairs vision, vision will heal. 

But no, MS is a stupid disease that has many flavours.  So, even though optical neuritis is my main symptom (ie, what triggered the MRA and spinal tap), I also have depression (but who hasnt), fatigue (show me a mum who isnt) and foggy brain (over 40 anyone?).

But lately, my right wrist is being ‘difficult’.  Grab a bag and it gives way. Clicking bones. Not all the time, but enough to make me worry.  Is this the beginning of the end?  Or is it just old age.

Essentially, for the last 15 years, I’ve worried that any headache was the next sign of MS and my husband would say ‘it’s not a tumor’. That has been our catch-cry for dont be silly, and get over myself.  Now, with a solid RRMS diagnosis, its not a tumor, but could it be another flavour of MS.

And that plays with my head.