What the ……!

Although I only got diagnosed a week ago, it is obvious that I’ve had MS for about fifteen years, it is just that in the past few months it has grown into an embuggerance.  This week has been a learning curve and, oh boy, have  I’ve learnt a lot.

Did you know MS is like pregnancy?

Stop gasping and giggling and stay with me… when you are pregnant and it is becoming obvious, friends, acquaintances and complete strangers will comment on your condition and amongst them will be the DOOMSAYER. This person will either themselves have been in labour for a hundred and fifty hours and suffered the agonies of the damned or they will be closely related to someone who has. Naturally this tale of unrelenting torture will inspired the first time mother with wonderful, soothing confidence and ensure she will look forward eagerly to her own labour.

As my child bearing days are far behind me (and BTW, I shoved babies out with no problem at all), I thought I would be free from the DOOMSAYER, but I was so, so wrong. Just as in pregnancy, they will know another person with MS and they have been confined to a wheelchair for years, they are blind, unable to swallow and suffering terribly in equally vile circumstances and for some reason they are always years younger than me! I’m not sure why being younger is such a vital detail, but apparently it is.

Why do this? Why with solemn expressions of deep concern do some feel the need to frighten the living daylights out of the vulnerable and gullible? I’m immune to this rubbish, I’ve done my research and while, as any soldier will tell you no plan survives the first encounter with the enemy, he will also tell you no intellgence work is every wasted. I’m prepared and I know that Mr and Mrs Doomsayer adore embellishing, if they can add extra beads, some glitter and a ribbon, they are as happy as pigs in muck!

The other interesting thing I have found is ignorance. You would have though after “The West Wing” and other programmes, most people would have a nodding acquaintance with the condition, but again, the scales of preconceived ideas have fallen from my eyes, at least one person has patted me gently on the arm and hoped I will be better soon!!!!!  I’m expecting a “get well” card and will be disappointed if it doesn’t come.

On a more positive note, I feel surprisingly well. I put this down to my having stopped fighting. I’ve stopped trying to do thing the way I used to do things and begun to do them the way I can do them. I’ve stopped trying to walk as I used to and slowed to the pace my body likes, surprisingly I can go further slowly than I could when I was trying to be normal. If I’m tired I don’t fight it, I rest and don’t feel so wrecked as a result and if I’m in pain I throw painkillers down my throat like sweeties and don’t give a damn about possible side effects.

Soon I am off for a long MRI and an appointment with the neurologist. I have made a list of questions ( research, research, research) and with the answers I hope I will be armed and ready for the campaign ahead. One thing I do know is that I will carry on writing and quilting for as long as I possibly can. I’ve got a Mrs Lillicrop story on the boil, two books telling me they would like to be written and someone said they will hit me with a heavy object if I don’t write a sequel to “The Tattooed Tribes”, plus I need to produce at least two excellent quilts for exhibition in 2020.

“Second star on the right and straight on until morning” people 🙂

 

 

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4 thoughts on “What the ……!

  1. I think you’re demonstrating an excellent attitude – keep on doing what you want or need to do. (and use your new diagnosis as an excuse to get out of stuff you don’t want to do) Save your energy for what matters.
    And, is part of the feeling of ‘wellness’ as much down to KNOWING what you’re fighting, as to no longer fighting it. You spoke so eloquently about being happy that there WAS something wrong, and that it WASN’T your fault.

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  2. I am looking forward to that sequel and to seeing the quilts. (But only if you want to. Lie in bed eating your favourites sweets if that’s suddenly what you want to do)
    And pay absolutely no attention to the DOOMSAYERS. Unless they get close enough for you to get a punch in.

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      • This may be a duplicate but just ignore me if so!
        Did you know that Dante wrote a sequel with a special circle reserved for DOOMSAYERS. Although they may have inadvertently given good news since apparently young MS often progresses much faster than old(er- note the tact) and there’s any number of keen young researchers beavering away on cures even as we speak. Love the attitude so keep up the good work as I’m really looking forward to the next book, short story post or rhubarb rhubarb comment – whatever! All the best Jaye/Jen

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