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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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.

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?

My cup is half full(ish) even with RRMS

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.

Lower stress.

Diet.

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.