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.

 

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.

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.

It’s Not a Tumor!

Sometimes I wish multiple sclerosis had defined symptoms.  Like a broken leg – bone is broken/bone will heal.  Optical neuritis impairs vision, vision will heal. 

But no, MS is a stupid disease that has many flavours.  So, even though optical neuritis is my main symptom (ie, what triggered the MRA and spinal tap), I also have depression (but who hasnt), fatigue (show me a mum who isnt) and foggy brain (over 40 anyone?).

But lately, my right wrist is being ‘difficult’.  Grab a bag and it gives way. Clicking bones. Not all the time, but enough to make me worry.  Is this the beginning of the end?  Or is it just old age.

Essentially, for the last 15 years, I’ve worried that any headache was the next sign of MS and my husband would say ‘it’s not a tumor’. That has been our catch-cry for dont be silly, and get over myself.  Now, with a solid RRMS diagnosis, its not a tumor, but could it be another flavour of MS.

And that plays with my head. 

Drop down a gear and keep going

Sporting analogies are appropriate in a lot of circumstances. Today I was cycling with 11 year old ds. I was getting tired and the way home seemed a lot harder and more uphill than normal. I told him to go ahead. 

DS said than uphill is part of cycling, I don’t have a choice if I want to get home. Just chuck the bike down a couple of gears and keep going. He said that if it gets tough, just go down a gear and it will seem easier. It might take longer to get home, but I will get there.

Out of the mouth of a babe. So if life is a long game, we will have uphills that are harder to climb on some days. Rather than give up, let us all just chuck it back a gear or two, take it a little easier but get there in the end. No matter where or what ‘there’ is.