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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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.

And here we go again, it is 2am

I just posted about insomnia. And here it is, 2 am and I am wide awake, with a clearer brain than I have during daylight hours.

so, is this low fat the reason? Is my body waking at 2 am most mornings because my sugar levelah have crashed. Is my sudden need for fruit, jam on toast and glass of bubbles, really my body and brain crying out for either fat or sugar to keep my brain functioning?

Type A personality that I sever need a solution. So, later today I will have breakfast – an unnatural time wasting occurrence for me. It will either have egg or nuts. I will also drink 600ml of water as I take those stupid pills. I will eat something at noonish. And have a bag of nuts and dried fruit in my bag to snack on. And, I will only have one glass of wine over the weekend.

Today’s foggy brain was an 8 out of ten. Kids were telling me about their day and I have no ideas what they said. If I didn’t take notes of a conversation, it was lost. I couldn’t recall receiving an important email, but once resent it was all clear. I have had one night without waking up this week. Haven’t had breakfast or lunch once. Barely drunk any water.

ill monitor progress here, mainly because if I don’t, I will probably forget. Goodnight.

Foggy brain and insomnia – is there a reason?

Two common symptoms of multiple sclerosis are foggy brain and insomnia. Today was a bad day at work, and I have to say I am starting to get scared.

So, google is my friend. I found the following site http://www.drmyhill.co.uk/wiki/Hypoglycaemia_-_the_full_story 

could the low fat diet advocated by swank and jaliank be the problem? Could I be on the way to diabeties and hypoglycemia while trying to avoid progression of multiple sclerosis?

thoughts? Please?