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.
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.
So, when does career ambition, climbing the corporate ladder become just a job. Turn up, do stuff, collect pay.
When MS raises its ugly head.
Or does it? I recently applied for a role on my bucket list. Many applied and I was one of three interviewed. If successful long hours and high stress. Against doctors orders. Stress equals adrenalin equals lower immune system equals MS relapse.
Those of us with RRMS don’t know our future. Will it progress? When is our next relapse? When is the beginning of our end?
The decision I made is right for me and right for me today. I enjoy my career and I am not ready to just have a job. I have more to contribute. More challenges to overcome. Unsuccessful on this occasion, I was encouraged to apply for promotions. So I will. One day I may be sitting on the deck at home (I would prefer a beach) and thinking about all the things I can’t do. Will I look back and be happy I pushed the envelope, and lived life – family and career? Or will I look back and wonder, what if.
Family is important. As tiring as it is following 3 sport mad kids around on weekends, I wouldn’t have it any other way. Study is important, but I won’t strive for perfection. And career is important. There will be time for a job, but that time is not now.
I love adrenalin flowing through my veins. I don’t jump off buildings or out of planes. I love deadlines, multitasking and managing the impossible.
But yesterday, my new psyc told me that this approach will bring on MS symptoms. Stress equals autoimmune response.
Now I am going to work on 3 hours sleep, having been awake most night stressing about how to destress my life without giving up the challenges that make life worthwhile.