When attitude is everything

My wrist hurts. I lose grip on things. Is it too much ipading? RSI? Or the insidious MS?

i can’t remember my new work number or work mobile. Or the number for my interstate team members who I ring countless times each day. Is it age? Or is it foggy brain MS?

after a week of sleep, two nights of insomnia. Is it just a hard week of work and uni starting again? Or is it …

In the absence of proof either way, attitude becomes everything. I chose to believe wrist all the typing, spreadsheeting and use if Idevices is behind my wrist. I chose to believe that my work and uni fills my brain with so many important facts, that phone numbers don’t count. I chose to believe that sleep will come when I am tired.

I chose to believe that attitude if not everything, is not nothing. And while I can, I will run upstairs in high heels and not just push boundaries, but smash them.

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Foggy brain can go and get f’d

Foggy brain. Tell me about it.

Late last year, I decided to do another Masters. For fun. Then I was diagnosed with multiple sclerosis, rrms. Shit. Bugger.

Had already paid fees for first unit. But was dealing with foggy brain as well. Have you ever wondered whether it is foggy brain, symptom of rrms, or whether it is the onset of early dementia? Is every headache a tumor?

i digress.

Uni was a struggle. Coming to terms with a new job, diagnosis and ‘stuff’. Scared that foggy brain had taken away part of my self identity. Couldn’t remember a conversation or page of book, 30 seconds later.

but today. I got my results. I more than passed. And this one mark means so much to me. I didn’t give up. On study on my dreams, or on me. I prevailed. And my foggy brain can officially go and get f’d.

Just came out to my sister. She asked.

My sister just rang. We spoke for an hour or so. She commented on how much weight I had lost (thanks for noticing). she asked if it was diet or gym, I said had health issues earlier this year and gave up sat fat. Then I changed the subject – tried on my wedding dress from 15 years ago and it is too big. Eventually there was silence and she asked, twice. So I told her. I have multiple sclerosis. Not what she was expecting.

i am having a good day. So I said all the right things and comforted her. Because what I have learnt, rightly or wrongly, it isn’t about us. Not about our grief, anger or denial. It is about ‘them’. Comforting them. Giving information to them. 

I am sure that right now my sister is telling her husband and together they are googling rrms optic neuritis and multiple sclerosis. I gave her permission to ring and ask questions, because if I don’t know the answers, I probably should.

Multiple sclerosis is a long game, and a lonely game. For those of us in the game, and for our families stuck on the sidelines cheering.

Food glorious food

Living in the shadow of an RRMS diagnosis, I feel as if there is little within my control. 

But, I can control what I eat and drink. Coffee – no more than 3 a day. I’ve been gluten free for 8 years which I do credit for the length between relapses.

Now I am low-sat fat. This means no fat milk in my coffee. All fat trimmed from lean cuts of meat. No chocolate, or chips. No more peanut butter on hot toast. 

But, I couldn’t be happier. There is enough evidence out there to suggest that even if diet isn’t a cure, it does no harm and may be effective management.

So today, I bought 20 kilos of carrots, 3 kilos oranges, 2 bunches each of celery and beetroot. With left over oranges, mandarins and apples, juiced up 5 liters of juice to have each morning with my fish oil, vitamin d, iron, cranberry and glucomsomine.

breakfast isn’t my thing, but juice and coffee is. I did my weekly grocery shop. We have lean pork and veal mince for a bolanaise sauce with some shredded spinach and mushrooms. Lean topside steak to have in a stir fry with roasted capsicums and other veggies. A chicken to have in a curry chicken soup with rice.

And each morning I throw into my handbag an apple, mandarin, and banana.

not purely Swank, Jelanik, or Wahl. But something I can live with, today. School seems divided on meat or no meat. I have chosen lean meat, with fish once or twice a week. School is also divided on nuts. I have a dish of nuts and dried cranberries on my desk at work. Better than chips or chocolate. And for days when lunch is not an option, they keep me going.

we are all on different journeys. I don’t know how different mine would have been if I hadn’t gone gluten free, or if I didn’t have chips and chocolate as my go to foods with anything else that was fried and gluten free. Would I have had my last relapse?

it has been 6 months. I am pushing for another six months. I will share with you my good, the bad and the naughty so you can judge. By the way, wine is now my go to food!

 

Today is just another day on a journey that takes a lifetime

Insomnia and fatigue. The former started 12 years ago, on and off. Times of stress. Times when my brain just needed those hours in the middle of the night to process.

The fatigue, since I can’t remember when. I remember sleeping most days, but blaming it on partying all night. Days organising a dinner party with a nana nap in the afternoon. Studying, well a couple of hours at the books, an hour with my pillow.

when did this all begin? At what point should I have seen the symptoms?

In 2004 I was pregnant. And exhausted. Terribly so. Blood test confirmed anemia and b12 deficiency. But was it more? It was only months after an optic neuritis attack.

In 2005, with 3 kids, again I was tired. Terribly, terribly so. Unable to get out of bed some days. Was this a sign? Of looming MS  or just being a mum?

I can’t remember a time when I have had energy. To burn. Adrenalin is easy. Create the deadline, grab and harness the energy. But once the project is delivered, exhaustion.

i love my husband and family. I desperately want to show them how much. Give them the energy they deserve.

not really the blog I planned. But from my heart.

Decisions, decisions…The Curmudgeon must decide.

Good luck with whatever decision. May it work for you both.

Doggonedmysteries

     Spent our afternoon sitting in the neurologist’s office.  It looks as though they are finally going to change The Curmudgeon from Avonex to something else.  The Avonex has prevented any further damage but his body’s reaction to it is getting worse as time goes on.

     He will give himself his injection on a Monday night.  Then for the next four days he’s in rotten shape, having trouble walking, and in general his quality of life sucks big time.  This wasn’t working for us.

     He has three choices, one of which is a pill taken twice a day.  “Tecfidera™ is an oral therapy contained in capsules taken two times per
day. Tecfidera, formerly known as BG-12, is dimethyl fumarate, a
formulation that was developed specifically for use by people with
multiple sclerosis.”  He is hoping this is what he gets.  Only problem is, the main side effect which…

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