Dear MS,
Were you having a laugh? I used to speak three languages, yet that morning three years ago, I woke up unable to speak English.
You threw sand in my eyes and made me walk funny.
And I certainly didn’t want to have that MRI, nor the Medieval lumbar puncture that followed.
But, you know what? You’re here now, so I might as well get used to having you around, you pesky minx, you.
So, keep on making my hand numb (haha), keep on forcing me to sit down and fall asleep no matter what the situation (eek), keep on making me avoid any direct sunlight as if I were a vampire.
You are a parasite and I hate you. You have ruined my life. But sadly, you are part of me now so we might as well get on. I will accept the enforced sleep breaks, the dodgy walking, the tripping. But I will never, ever accept the worst you can throw at me. Who cares if I no longer speak fluent Norwegian? I can still read it, so ner ner ner ner ner.
Who cares if I can no longer write 3000 word essays? I graduated last year. Yah. Boo.Sucks.
You are a leech. You destroy everything you touch. Families, relationships, careers. You took everything from me and you were unrelenting in your destructive mission.
So you chewed me up and spat me out, Dear MS. I lost my partner, my job, my career, most of my friends. But I win. I will be a better Me.
I didn’t ask for you to appear and gnaw at my nerve endings. It’s ironic. I feel you. I feel emotions. And that will not end, no matter what you throw at me.
Yours,
Stumbling XXX
I had my retirement planned and MS ruined everything, and as much as I try to ignore it, it’s there interfering with everything .There are times when we need to shout “it’s not bloody fair” but there is nothing we can do to change it, so rant over till the next one, the thing I will say you don’t know what it’s like till you’ve got it, and I can’t be happy all the time because I’ve got it
I’m with you. I rant, stamp my feet (my good one) and rage against it all. Does it work? Perhaps. I feel better.
x
I was a psychiatric nurse. The NHS retired me with indecent haste (bad advertising to have ill people working for them I think…) I had to move west to a cheaper county. My son left behind all his friends for a strange new school without (hardly) a word of complaint. My wife ditched her job and left her ailing and elderly parents behind.
The son is now 21 and happy, my wife has her ideal job. After composting for a couple of years I went back to college then Uni and retrained as an Illustrator (which is what I wanted to be when I was 16.)
I still have MS, it says hello every day, but these days mostly I have more silver lining than cloud. Relapses happen, but then so does rain and influenza. I still get angry and frustrated, but as often because Photoshop has crashed or my pencil has broken as because my “neurological difference” is screwing things up.
Thanks for your comment – really inspiring! I think I’m still at that stage where just when I think I’m used to it all, something happens to set me back again. Like yesterday when I wrote the post, my hand was numb pretty much most of the day.
Hopefully one day soon I will be at peace with it?!
X
I dont know about “peace”, maybe “detante”? I have it,, it doesnt have *me*. I think the trick is not to let the illness define you, to keep it the other way around…
So so true! An entante cordiale??
MS won’t define me, I’ll make it work for me. Watch this space…
X
really great post 🙂 its good to get things like this off of your chest, dont bottle it up 🙂
I don’t think anyone with MS can really come to 100% peace/acceptance with having MS,even then IMHO there might be something/symptom that shows up out of the blue that might throw a person off and cause them to think depressing thoughts or angry ones. Maybe I am wrong, a person with MS can accept it 100%, but I haven’t met a person with MS that doesn’t have those days where they are pissed at the disease. It doesn’t have to be doom and gloom all the time,(mind over matter as “they” say, positive thoughts etc…), but I think a lot of the time, when you have MS you are more aware of what you can and can’t do, so MS is always on your mind and you are more aware of what you might be missing out on :/
hmm that might not make any sense :p been up since 2:30 :/
It sounded perfect!!!
x
p.s. know how you feel – last week I had a couple of nights were I inexplicably woke up in the wee small hours and couldn’t get back to sleep. meh.
Thanks Jennifer!
I feel a lot better after my rant, lol.
You are so right, I feel fine then whoops, something else happens and it does throw me right off course. Then I rant and stamp around a lot.
I think for a lot of us, MS just comes at the wrong time. Not that there’s a right time, but for me, life was opening up, opportunities were coming my way, then blam. I guess if I was in my 60s or 70s, I would just accept it a bit more, although it would still be hard.
But the sun is shining and even though I am inside (heat intolerance), it looks nice from my window…
X
I was just starting to feel better only a little bit of numbness. Woke up yesterday morning had tingles in my fingertips and toes today it is more numb. Great and im going back to work today lets hope I can work through it. It has the worse timing I had one hell of a headache and then bam next day. Mb I did too much. Walked too much I dont want to just claim benefits and sit around and wait I want to work I refuse to claim them im too independent probably wouldn’t get any lol. Xx I hate ms its really getting to me now. X
Sounds like you’re having a really tough time and I really do hope it gets better soon.
I just seem to have strange flare ups. This morning my right arm was totally numb. Made life pretty difficult. It can really drag you down.
Know what you mean about work. I don’t know what I’d do without it at the moment. Spent so long at home the last few years, it’s good to go out and feel part of the world. Even if it’s only on a part time basis.
X
Im jst hoping my first appointment with the doc at the end of the month goes well. Mb I can be given something. I dunno its just hit me this time feeling down about it. Just get better get things going good and I wake up with tingly and numb bits its like a kick back down how do u keep urselfs so upbeat about it all? Xx
Believe me, I was in exactly the same place. Right at the beginning, when I started this blog, I was going through a horrendous time. Not made much easier by being sacked for having MS. That was a tough fight on top of everything else.
Days, weeks, months went by when I really just could not see any light at the end of the tunnel. I was in a horribly dark place. It’s probably only these last few months that I feel I’m back on track(ish).
I guess that’s why I started this blog – I wanted to show that life can and will go on despite MS. It’s just about creating new ways of living. And I had to realise that life just wasn’t ever going to be the same again. it was a grieving period and I kind of had to go through all the emotions. I cried loads. I ranted and raved. I drank too much, ate too much chocolate. Bored my friends to tears.
It’s a constant battle, but the more I get used to all the weirdness of MS, the more accepting I get. It’s here. And for now, it’s not going anywhere fast.
Hugs,
X
Stress and worry don’t help, it only causes flare ups of MS. Next time listen to some music and unwind yourself.
This song lyric works for me, have a listen:
Popa Chubby – Stress Will Kill You Every Time
http://youtu.be/kuQG_LOrjfk
Cheers,
Randy
That’s brilliant!!
Stress is definitely no good. Am learning to relax and chill out a bit more. Although tonight isn’t much fun – waiting to pick up The Teenager from rugby training. It’s chucking it down outside and he’ll be covered in mud from head to toe ;-(
x
Turn the garden hose on him b4 he goes inside! LOL
I might just make him run next to the car – that should wash the mud off. Plus I’ve got to wash the same kit for rugby at school tomorrow, some sort of inter-house thingie. AND I have to sew a button on his school shirt. AND he’s lost his school tie. I have a fab evening ahead of me (and zero chocolate…)
x
bloodyell Babs I’m sure I read this script in a Hammer movie.
Sure does feel like it sometimes. Maybe I should go out hitchhiking on dark roads….
x