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.

 

Out of my depth and out of control

anxiety and depression. Just more joys of multiple sclerosis? Or mental health? Or just a sign that I should toughen up and get over it.

Family – kids high maintenance, demanding. No peace and no help. But they are healthy and basically good kids.

Job – is it a job or career? I used to have a career. Opportunity, promotion prospects. Now I’ve lost confidence in my future. Day by day I may be in control, or may have lost all confidence in even getting out of bed. There is no job security. I’m scared that once my symptoms become as obvious to others as they are to me, I will be sidelined until exited. Really scared. Even though that day may never come, or may be years away, I am scared. Now.

Study – learning, real learning and embedding new knowledge is just not happening. Exam on Friday and I am sure my issues will be laid bare for all to see.

Health – insomnia had reoccured, but last night slept. Leg pain okay this week. Back pain 6/10. Eyes tracking okayish. Balance – 9/10 but trouble doing yoga poses.

crap this is such a negative post. I don’t want to be a negative Nellie. Life is great! Really great! I feel like I can’t enjoy it

It has been a while

while when I started this blog, I had just been diagnosed with a chronic and incurable disease. I was ashamed that I felt so vulnerable. So unwilling to accept and wear my diagnosis like a badge of honour.

I am in the RRMS club, but don’t want to be a member.

Most days I am positive. But every now and then I hit a black spot. Depressed. Tired. Fearful. Forgetful. What does my future hold. I have spent far too many hours planning my invalidity retirement. Calculating the cost of forfeiting career and promotions.

So, when I am positive, I feel like a fraud trying to be inspiring. On black days, I don’t want to bring others down.

So I stayed away. Perhaps the best I can do for myself is be honest. Get the thoughts out of my head. And if it helps others, great. If not, hopefully they can help and inspire me.

In any case, I’m back.

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.

Loving life

Spring has arrived in Australia. Warm weather, sunshine and end of winter sport.

Fatigue is my constant friend, and foggy brain is being passed of as getting older. But otherwise, life is good. Went for a bike ride today. Instead of going for a PB I kept pace with youngest child. Took it easy, enjoyed the ride.

loving life and living for today