I LOVE Making You Feel Uncomfortable

It’s true, I do. It makes me day when I get to make you feel uncomfortable about my condition, it is my guilty pleasure.

To be fair, I don’t have much else?!

When someone sees me with my crutch or stick, they may ask me what I did to my leg, I take great pleasure in informing them that actually, I have multiple sclerosis. Then taking a nice long pause whilst they try and decide what to say.

All the time stood there loving the uncomfortable silence. 

I know, I am terrible but some days it could be the only form of entertainment I get.

Many of the people I know with MS take the same approach as myself, we tend to use the humour side of things to take back a little joy. If only for a few, silent seconds.

Some responses are the sympathetic kind, which I am not the biggest fan of. I know people mean well but I would rather have some kind of humour thrown back at me, its only fair 🙂

Some I choose not to say anything to, mainly because I hate it when people treat me differently, I am still the person I just have a few more limits and tend to need a good nap around midday.

Only a few friends have stayed ‘friends’, they don’t treat me differently or pretend to understand, they listen and simply treat me the same as they did before. I guess I don’t really mind so much as I have such a huge support online and with my family. It has made it a whole lot easier for me.

I know many MSers see the same thing in the whole loss of friends thing. Its not something people do on purpose, some are scared to ask, most don’t understand and many have such busy lives, they don’t have the time anymore. All are fine with me to be honest.

I kind of like the quiet life these days, after all I do like a good sleep.

 

 

So, Where Do We Go Now?!

I am home, things are normal and I find myself wondering where it is I should go now? I know I need to start thinking about facing my demons, especially as I want to be on the board for the MS society.

If I want to help others, I need to help myself too.

I was awoken this morning by the truly horrific sounding doorbell, honest, think “ERGGGGHHHHHHHHHHHH” with a pingy sound and you have my doorbell. I awoke from my pit (lovely soft sheets I swear) I was expecting it to be the builders back to remove the key safe. Great, I would be greeting full grown men in my old lady nighty, with flat morning boobs (you know the kind) with full on cockatoo hair.

Nevertheless, I answered the door looking rough as bum’oles, only to be greeted by my MS nurse. Phew, I was surprised and wondering how I had forgotten this meeting?

We talked about feeling fine and the fact I had seen my holiday as more of an escape, apparently that is normal. 

We discussed how my feeling fine is my steroids, its something I have gotten used too, I no longer fear the down part, I will simply deal with it. It was so lovely to talk to her as she is the one who understands and she is also the one with the power of painkillers. 

Talking made me realise I have to start to move forward, although I won’t accept it, I need to stop running away, especially as I plan to make as much fuss as possible with the MS society.

Its time people stood up and listened. See people with MS may not be facing death, but we have been told we now have to live with an unpredictable, disabling life long disease. One that has no cure or no written path.

There are no answers, no percentages and no options. 

Its time people really see and hear the stories of people like myself.

Well, I am pleased to be back, I missed my space. So be prepared for more of my inane drivel and please enjoy 🙂