It’s been a while .. Still cycling through stages

We are all on this journey.

But sometimes we need to be on our own.

This blog is me. Raw thoughts and feelings. But for the last year or so, I have struggled. I have reached out to the FB MS community. My name, my face. Here I am one of you, anyone.

So, this last year… Stressful job. Stupid hours and ambitious, relentless people. While studying, working full time, pre teen and teen kids and marriage.

Insomnia. Soul destroying, energy sapping insomnia. Tired and asleep by 10, waking by 2, lying awake until 5 and solidly asleep by alarm going off at 6. 3-5 times a week. Going out to the lounge and watching crap TV, hoping to drift off.

Foggy brain. It is more than just forgetfulness or old age. Confidence sapping. Loss of trust, in my own mind.

Tingling and twitches. Eye twitches. Surely everyone can see? Waking without feeling my hands and sometimes my feet.

Is this the last job I can do? When will my stupid disease be so obvious to others as it is to me? I lost that promotion, is it because of me or do they know? Is my brain fog as limiting as I fear?

Fears. Three years after dx I was still searching for acceptance. And sleep.

 

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Happy end to 2013

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.

Open letter to Karen

I will never see her again, but she judged me and trash talked me. So this is the open letter to Karen and anyone like her.

 

Dear Karen,

Our introduction was awkward. You stopped to tell me a whole heap of things, and I asked you to send me an email. You preferred to deal verbally and I said I preferred an email so I wouldn’t forget it, so it would be actioned. 

From that point, you avoided me, bad mouthed me, ensured I was kept out of key meetings and went around me to my staff and senior management.

What you didn’t know, or care to know, is that my once perfect memory hasn’t been reliable for some time. I put it down to fatigue, worked too hard and always tired. I mitigated my career by using emails as reminders, getting people to confirm in writing because they knew and accepted how busy I was and that I didn’t want things to fall through the gap.

you were different. You judged me based on your own values and decided if I couldn’t be trusted to remember, I couldn’t be trusted.

Fatigue. Foggy brain. Forgetting details – a person’s name or a phone number or a quote, all normal. My normal. My relapsing remitting multiple sclerosis. For years I have been tired. For years I joke about remembering the big picture, but never the details. Juggling too many balls, send me an email so I don’t forget/put it in the diary/delegate it to the right person/so I can have time to consider and get back to you.

That wasn’t good enough for you. You upset me. You were hurtful. And you will never know how much. You have moved to sunny Perth, retired and have moved on. 

I am here, still mitigating my career with work arounds, so no one, not even you, know my dirty little secret. I am living with RRMS.

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.