2013 draws to an end.
One child leaves primary school. Another is almost taller than me. The third can almost fit my shoes. My pretty shoes!
Twelve months ago I couldn’t see red Christmas lights and the headache couldn’t be fixed.
So, almost a year after diagnosis, how do I feel? Relaxed and positive and grateful.
Things could be worse. My relapse was just that. Enough to get me diagnosed, and encourage me to a better lifestyle. Having given up saturated fat, I am now a size 8-10 from a 14. No girl would complain with that. I don’t even crave hash browns or chips and gravy anymore. I am enjoying salmon and vegetables. Even those that come in salads. my dog is happy with regular walks and my back is happier with strengthening through Body Balance – a cross between yoga, pilates and tai chi.
My down days are when I think of the what ifs. What if I cant think as clearly and my brain goes. What if I can’t move as quickly and think as quickly as I like. What if my body is so unreliable that I can’t plan anything with confidence. What if I fall within the gap between being able to perform my job at the level I rose and salary I earn, but can’t qualify for my invalidity pension. What if I can’t afford to provide for my family. What if the only tangible option is to die and leave them my death benefits.
then I snap myself out of it and focus on the positives. Nothing will happen overnight. I have a wonderful family and fabulous twitter role models. And a good attitude overall. And have time to plan for alternate income streams – a self funded early retirement if you will.
i am grateful to so many and for so much. And the advances in technology, medicine and natural therapies is progressing all the time. the longer I and we stay as healthy as we can, the more time we give others to kiss multiple sclerosis goodbye.
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.
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?
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.
Driving to work in heavy fog, I realised that is how my life is now, diagnosed (finally) with RRMS. Not seeing where or how bag the next bump is, how far to the next bend, or when the fog in my brain will finally lift for good.
but with 6 months since my optic neuritis, and six months since my MRI and formal diagnosis, there are some good wins. Six months relapse free. I know that isn’t much to some, ulna bragging for others. But, I will take it as a win. And I am aiming for another six months. To see Christmas tree lights with red flashing (other optic neuritis sufferers will understand).
I have taken multiple sclerosis to kick me up the proverbial in terms of looking after my health – to the extent I can. Drinking water. Taking my iron every day – the side effects are nothing to CRAB drugs so I have stopped complaining. Cranberry supplements for UTI and glucosomine for joints. And heaps of fish oil. And heaps of vitamin d. I haven’t missed a day. Oh, and SSRI to get my stress levels in check. Love that Chillax feeling.
Trying to meditate and this week, for the first time, this TYPE A personality meditated witclearer mind for a couple of minutes. Big win.
Strangely, the easiest thing to give up was saturated fat. Easy choice – chips and gravy equals wheelchair. No fat milk no butter, nuts and dried cranberries for snacking. Low fat meat a couple of times a week, chicken and fish the rest. 9 kilos lighter. Skin healthier.
So, these first six months have been a head game. Angry, depressed, confident, anxious, relieved, scared, grateful. Looking forward to kicking butt for the next 6 months.
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.
Most of my posts have been about my emotional ride through RRMS diagnosis. I have been sad (very sad), in denial, had a little anger at my body and definite frustration.
But today, I am feeling good. Having RRMS, and a healthy dose of stubbornness and denial, I have changed things to give myself a chance.
i have pulled back from being as involved in the local soccer club. Weeks of preseason stress relating to grading all gone. I am culling crap in my life. Clean desk, aiming for passes instead of distinctions. Housework – well my house is patient and if I don’t get to it today, it will wait. I am also taking at least 15 minutes 3 times a week to have lunch in the sun. Gotta love that Vitamin D.
Diet – well a Swankish approach has dropped me from a big size 14 to just buying a size 10 suit! Got to be happy with that. Giving up saturated fat meant giving up hot chips, BBQ chicken, plain salted chips or corn chips, pop corn and the like. 6 kilos lighter. Drinking more water, started to replace one or two meals with seafood – which I do not like, but doing it anyway. Because of my anemia, have not and will not give up red meat. I only use low fat cuts and cut off all visible fat. Tat will be my only voluntary saturated fat.
Insomnia is still my curse, but I am practicing breathing and taking time to enjoy the life I still have. I have dropped my baby fat (my baby is now 8) and strutting new jeans.
I value life. I am going to live and love life. While I can. Not taking anything for granted. Ever again.
Sporting analogies are appropriate in a lot of circumstances. Today I was cycling with 11 year old ds. I was getting tired and the way home seemed a lot harder and more uphill than normal. I told him to go ahead.
DS said than uphill is part of cycling, I don’t have a choice if I want to get home. Just chuck the bike down a couple of gears and keep going. He said that if it gets tough, just go down a gear and it will seem easier. It might take longer to get home, but I will get there.
Out of the mouth of a babe. So if life is a long game, we will have uphills that are harder to climb on some days. Rather than give up, let us all just chuck it back a gear or two, take it a little easier but get there in the end. No matter where or what ‘there’ is.