First Things First…..

The lovely artwork is compliments of my 6 year old nephew. We will just call him LP1. That is supposed to be my husband, Dick, and myself, Jane. Not 100% sure who is who is who but I love it all the same!

Since I know that my mom is freaking out because I called my website Average Jane, I really don’t mean anything bad by it. I’m of average height, average weight, average age (OK, above average in the age category, but I don’t want to talk about that!). Seriously mom, do you know how many different ways there are to spell my actual name! Everyone can spell average and everyone can spell Jane, so it’s easy to remember. Anyway, I work, part time now. Dick and I do not have any kids, but we absolutely love being an Aunt and Uncle. Actually, getting ready to be a Great Aunt and Great Uncle.

I try to eat pretty clean but, I’m not going to lie, I won’t turn down a good piece of cake with homemade icing. I do feel that The MS Gym has helped to keep me moving.

As for my life with MS, I was diagnosed at the age of 34 on October 3, 2006. It seems to be an anniversary that I would really like to forget but is burned into my mind. My grandfather and my uncle, both on my mother’s side, also had/have MS. My uncle coined the phrase MS Terrorists and I think that sounds about right. So, the MS Terrorists and I have been cohabitating my body for fifteen years. The first twelve years were OK but the last three…they have not been fun AT ALL! My initial symptoms were numbness, fatigue, optic neuritis, and randomly falling down.

Up until the end of 2018, I had a job that kept me active both mentally and physically. Unfortunately, the Terrorists let me know (pretty rude of them!) that I was done with that kind of work! Dick and I decided that I needed to be home and there was plenty for me to do at the house.

Turns out that staying home wasn’t really my thing. I stayed home for 8 months and I’m not sure that I put anything other than my PJ’s and a robe on during the entire time! Maybe a slight exaggeration, but as many Pinterest cleaning hacks and meal prepping pages that I looked at, it just wasn’t for me. Now, I can’t blame MS for that 100%. I had just left a job that I had been at for 18 years. I was mourning the loss of the life that I had always known. Was it time for me to go? Absolutely! Was it still one of the hardest things that I’ve had to do? Yes. It would be one thing to quit a job because it’s not for you/you’re sick of it, whatever. It’s another thing completely when you are leaving because you are physically and mentally unable to handle it anymore. They (whoever ‘they’ are) say that you go through the grieving process when you first get diagnosed. Personally, I’ve been through it a few times over the years. This was one of those times. I sat on the couch in my robe for 8 months, in part, to pretty bad depression. I now work a couple of part time jobs which I really enjoy. I primarily work on my computer and, with the exception of about 10 hours a week, I am able to work from home.

If I’m sitting down, no one really knows that anything is wrong different about me. However, when I try to walk these days, it gets a little dicey. I know that I look like I’ve been drinking HEAVILY! Fun Fact – When I DO have a drink, the walking gets even worse! In addition, my words get super slurry, super quick! Anyway, I now use a cane or walking sticks when I have to walk more than about a block. Another Fun Fact – my cane lights up.

I realize that it is not appropriate to ask people why they are using an assistive device or to say ‘what is WRONG with you!’ I would rather take a moment to educate people and I feel that having a cane that people comment about may give me that opportunity. NOTE TO ALL OF YOU: It is NOT appropriate to ask people what is wrong with them or run over to help someone in a wheelchair/using canes, etc. when they don’t ask for it! You can message me if you would like more info on that.

I feel like I’m in a constant battle with my body and it is exhausting! I am fully aware that I may not regress with the HSCT but I just hope that it will stop progressing. If I could just know that it won’t get WORSE than it is right now, then I can deal with that.

TL, DR – I’ve had MS for 15 years. It was OK until about three years ago. And my nephew drew the first picture.