Its Tuesday…..

Its Tuesday……

What can I say?

My MG like symptoms have disappeared for the time being and I haven’t had to take mestinon since Saturday night and I haven’t used oxygen either.

I am having problems typing as my ring finger and little finger on my left hand keep curling up towards the palm of my hand and I can no longer straighten them. Its been happening for a few months now I am pretty sure its called Dupuytrens contracture – another connective tissue disorder. My maternal grandfather suffered with it, its genetic but Dr’s also blame smoking……Well they are just going to have to shout at me over that one. I don’t go out, I barely drink I have problems eating, smoking is the one thing in life I enjoy. I just don’t feel like giving up at the moment. Its my emotional crutch, its all I have left from my old life.

It feels like a dirty little secret that I smoke. I am ashamed of the fact that I am a slave to nicotine but don’t condemn me as I’m not forcing it on you. I don’t smoke around kids, I feel it sets a bad example. I don’t smoke in my house as it wrecks the decor and makes the place stink. I know my parents would be over the moon if I gave up. Its just I don’t want to, when I do I will make the effort. Life’s hard enough at the minute without adding to it.

At present it feels like it doesn’t matter how many hours I sleep I still can’t re-charge my batteries. I’m constantly exhausted, my mood is a million times better but I still have no energy. I am blaming the heat and the strange changeable weather we are having at present. Its raining here today…..thank god it saves me nagging hubs to water the garden later.

So I don’t have much news but I thought I would let you all know how I am after last week.

Tomorrow I have my first physio therapy session…….wish me luck. All I ask is that I don’t end up in more pain than I am already and the woman understands about POTS and exercise intolerance!

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3 thoughts on “Its Tuesday…..

  1. Hi Rachel .. glad it's cooled off for you – it's coming here and has clouded up.

    Good luck with the physio tomorrow .. do ask about Butterfly Massage – or check it out .. I know you've got more than enough on your plate to deal with .. perhaps your husband (dearly beloved that he is – he must be superb) .. could look it up for you ..

    I just feel the Butterfly technique will really help – as there's no touch .. or just very light.

    Anyway .. just look after yourself and if you smoke – well tough really for everyone else – personally I hate it – but can quite understand your reasoning ..

    Thinking of you .. cheers for now – Hilary

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  2. Smoking may be bad, but it helps you cope. It's easy for a non-smoker to say stop but they probably don't deal with the health issues you have, so don't be ashamed.

    Good luck for tomorrow. Hugs.

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  3. Hiya,

    thanks for the comments Hilary and Ellie.

    Yes smoking helps me cope, I wish I had another way but I dont. It also helps me relax when the pain is intense.

    I knew I shouldn't have posted that the MG symptoms have gone. Im typing with ptosis! avoiding mestinon as too tired to deal with countless trips to the toilet!

    Thanks

    Rach xx

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