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!

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


  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.


  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!


    Rach xx


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