This blog has been pretty quiet for some time.
As far as personal posts go.
And I don’t have any real explanations for this because I just don’t know.
I lost my voice. For so many reasons.
I wanted to shut the computer and forget I had put my life out online.
I went to memory classes to try and get my voice back.
I didn’t feel it, I couldn’t feel it.
As far as my MS goes, it’s a lot slower with my Tysabri. But it is still progressing more. Slowly taking little things without me even noticing.
I felt like no one cared what I had to say.
Who am I anyway?
Who am I so sit and type out my life online?
Then I worried about my content.
I have multiple sclerosis. And I am not shy about it. I want to talk about it.
Not for sympathy.
Not for people to feel sorry for me, I hate that.
But for the people like me, who feel alone. Who feel like they are abnormal.
I started this to help people like me. People who have a future but have no idea how it will pan out.
We can’t make plans, we can’t have dreams.
Both of these are normally dashed at the last minute.
So we live day to day.
We sit quietly and get on with the pain. Desperate to know we are not alone.
I started this to make more people aware of MS and what it’s like to live a life with a degenerative disease.
It might not be glamorous.
It’s certainly not easy, but normal people, people like you, need to know.
You might have a friend with MS who is perfectly fine. And that is fabulous. But for most that is not reality.
We might tell you we are fine. But that is because we don’t want to bore you with todays list of symptoms.
Or a new fear that has resurfaced.
We just carry on.
I stopped writing through fear.
Fear of the disease.
Fear of people thinking I want sympathy.
Fear of people judging me
Fear of people just not caring.
Fear of waking up tomorrow having not made the most of yesterday.
But I can’t live in fear anymore.
I want to write.
I want to vlog.
I want to document our lives so my kids can read back and see I loved them. See what I was going through when I was singing nursery rhymes or playing tag.
To give them strength and hope.
I need to stand up and stop living in fear. I need to live for the now.
So if I should wake up tomorrow with the loss of my legs or arms, I can know I lived the hell out of the life I was given.
So there you have it…