It’s that time of the year when social things happen and push things happen and we get to dress up party dance chat rejoice ……weddings christening birthdays and barbecues have taken over my calendar af the moment …..most weekends taken up with such events ……and so I have come to understand that one of the hardest things I have to deal with is the pressure from some people to just get better …I could turn to booze I guess then it would mask so very much !!! but I don’t drink lol ….
People think my symptoms will just disappear ….
My MS is a taboo not talked about subject and definitely not understood ….
( she looks fine so she must be fine kinda thing goes on )
I can see people checking me out ….and not the way they used too by the way 😉 !! .
I see it in their eyes …A look up and down …and then
“oh wow you look great !! I thought you were ill ” !!!!
I just smile …..if i don’t know someone then i can pretend to be the old kirsten right ?? …
Those that look into my eyes see a crumpled sad soul desperate for a cure… I’m trapped somewhat in a blipping body that really hurts …..
I let the tears fall when those people spend their time holding me ,understanding me , caring for me ….
but those who don’t or won’t understand well, I am pretty sure they must think I choose not to get better and that I have resources that I must choose not to draw upon ….
Well hello there …there really isn’t anything out there for us MS warriors ,just a % of a chance to slow it down ..and that % is offered as you hoop jump to gain access to the different drugs on offer …
We’ve just had news here in the UK that lemtrada has a load of red tape wrapped around the treatment plan….
My hope’s dashed for the moment ….
my soul sinking again……
ms plays a mind game …its so cruel …..
So the worse our MS gets the more panicked the situation becomes and the desparate bid to slow progression down steps up a gear ……
Its funny because I see people’s confusion as I go from feeling ok one minute to bailing out in a frenzied state of OH GOD I fEEL ODD NEED TO LEAVE NOW PANICK!!!
When I am unable to join in or I bail mid date I get that vibe that they doubt that things could actually be that bad with me …
The MS blipping bites us Ms’rs and when it does it doesn’t let go …..
and then there is the flip side … For those who don’t know me don’t know me !!!….and this is where I have a story to share …..
This particular day I am kirsten … I am a guest ….a pretty lady in a pretty dress, all done up from top to toe …..
I’m amidst a load of people who don’t know me at all ….
I am at a wedding ….
I’m sat down in the isle awaiting the bride and then I’m sat down at the patio furniture drinking (water I will add) and then we move onto the table laid for 10 to have dinner …
I have a clutch bag a pashmina , my hubby’s arm and a pair of healed shoes ….
no stick in sight 😖😖……
Sat at a table with 10 people we are introducing ourselves…. 3 rather interesting looking ladies reluctant to share how they know anyone …
I’m a little intrigued as to why they wont share…..
you see strangely one of them started the questioning in the first place ….so it seemed all a bit odd really….
after we had eaten I managed to strike up a conversation with one of the ladies as she was wearing a large moonstone necklace that I had homed in on …
I waffled on about how it must have had some powers on a full moon and it must be hard to wear sometimes ….
It was enormous……beautiful ….hypnotic to look at …..
We were off communication channels open we were chatting about the beautiful gems and stones found around the world… (my hairdressing communication skills still worked 😉😉 ….)
but out of the blue came a question ….
“Are you in the fellowship “the lady said …
“Am I….?? I dont think so “….
I turn to Chris …
“Chris am I in a fellowship “??
“No love” he replies confidently ….
“Well I want to be … how do I join ”
I was excited to have met a lady who interested me she seemed kind but mysterious ,quiet but present secretive yet open ….and the fellowship thing sounded fun …..
By now she was shaking her head and saying quietly “it doesn’t matter, you’d know if you were ”
but excitable me was bumbling along like a playful puppy wanting to play …I wanted to know more about this fellowship that I wasn’t allowed to join because I would know if I was in it ….and so I wouldn’t quieten down ….
Well I set the scene earlier ….heels ,dress, Chris’s arm and no stick …..
Can you guess yet….
Well I really needed Chris’s arm by 3pm …. He carried my drinks ….my plate of food ….he escorted me around the garden (by now the shoes are off )….but i have started stumbling and my speech is slurring …I look half cut to the majority … but I’m actually shattered …fatigued ….MS was working its magic ….
It was a refreshingly weird situation to find myself in …as a leaflet was shared across the table with me and I read the content with chris grinning at me….
the penny dropped ….
Should I allow MS to belittle me into behaving like a pisshead in front of an addiction nurse ……
No ….I came clean !!!!….”Oh ” I said …
“I don’t drink … I haven’t for about 14 years and even then I was a half a cider and black girl and drunk on one !! …..a very cheap date lol ….
I have multiple sclerosis “…..
It was lovely to think someone was reaching out to me …. My faith restored in the human race …kindness compassion and love shared across the table …..although difficult it break through the barriers at first ….
but do u know what ….to be honest I guess i am drunk ….but the only thing I’m drunk on is life ….living it the best i can for as long as i can …..would you join me for a tipple on life !!!
love and light kirsten xx