Monday, 15 February 2016

Its been a long day today

Its been a long day today - I was awake at 6:00am and got up about 6:30pm.  I asked OH to make sure I got up as I needed to be at the Hospital for 9:15am and left to my own devices especially with an increase in the epilepsy medication I was not risking anything.  I am also taking the meds differently.  My doctor suggested that I take the larger dose before I went to bed and that the smaller dose would top me up in the morning. They want to increase meds up to 100ml which is double what I was taking (now on 75mg) but I have to get used to it and until I do this will be a vulnerable time.  A lot of epilepsy medication is actually sedative based and used to slow down the system.  So I do have to be careful.  I also make sure that people around me know what is going on.  Fortunately a work colleague has two of the same conditions as me i.e. the Raynauds and the epilepsy so I tend to tell her as she knows what to do if there is any difficulty.

I wrapped up well before walking to the Hospital  - it was bitterly cold and was head wind all the way and I got there in plenty of time.  (However I did get a taxi to take me back to work).

This time I saw the Consultant last time I saw his Registrar.  He has got to the bottom of why my back is playing up and it is all down to my feet. 

Apparently the inner arch of my foot has gone flatter which means that I have (as he put it) lost the spring in my step.  I need to have some special insoles made - not the NH ones as they only last six months.  He uses these particular insoles and he was able to show me what they were like and also said that he runs 5 miles every two days.  They are a thin silicone rubber and he says they should last for life as he put it. 

One of the problems I have had of late is that I have had a lot of pain when walking too far.  It would seem that my feet have caused me to go forward and it is also knocking my hips out of alignment and that is what is causing the problems with my back at the moment irrespective of the disc being out of alignment. He has indicated that these insoles will enable me to carry on getting the exercise I have been and will probably be able to do more.  I have been told that I need to keep moving no matter what.  That is imperative. 

My back was bad today when I saw him so he was able to see how it affected me.  Thankfully he has got to the bottom of what is going on - with so many conditions all giving off similar symptoms it is a bit of a minefield but this is not related to my existing conditions.  This is a separate issue entirely which does need dealing with.  I was beginning to feel old, on the scrap heap and a bit of a has been resigned to being like this, but from talking to him I should feasibly be able to turn this round which I am pleased about as I am a young 50 something who still has a lot of living to do.  There's still lots of things I would love to do;

The nasty problem with the Scleroderma appears to be under control still which is good. 

He is referring me back to physio again because of the foot situation and he wants to see me again in six months.  If I can exercise more it might help me to lose some more weight.  I cannot really afford to put any more weight on now I have lost it - would cause too much of an issue on my frame and on my clothes as I have bought smaller sizes since losing the weight after mum passed.

I am going to go to bed early  to get some sleep hopefully - get the rest of my meds.  OH is under instructions to get me up when he comes back from walking the dog.  If he doesn't I will still be there when I shouldn't  be, I tend to sleep through alarms.

Its been bitterly cold here today despite me being wrapped up to the nines.  Just take care keep snug and warm.

So a positive note on which to end the day things are salvageable and hopefully will help me  in the long run.  I must do better.

Catch you soon.




  1. I think we all have spells where we feel our age and think 'oh dear is this it now!' But it sounds like the docs are getting to the bottom of the problem and you'll be as good as new soon. I shall be glad when the weather turns - it seems easier to feel better in yourself when the sun is shinning Xxx

    1. Hi Trudie he is a lovely Consultant and if you try and help yourself he will do his best to help you. He tells it straight which is always a good starting point because then at least you know where you stand. Its been a grey winter this year hardly any sun and I think it has affected us all. Keep safe and look after yourself.

      Tricia (aka Pattypan)


  2. Great that you had what seems a good must feel better knowing that most of your problems can at least be managed. I think this winter has made everyone feel low and less able then usual. Take care and keeping walking xx

    1. Hi Maria

      He is a very good Consultant and has helped me an awful lot. I trust him which I do not with all medics and anything I can do to help myself is always a bonus. Its been so grey this year hardly any sun I think it has affected everyone without them realising it. Hope you are keeping well.

      Take care.

      Tricia (aka Pattypan)



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Meet the Moggies

  • Merlin (approx 18 months)
  • Squeak (approx 2 years)
  • Poppy (approx 16 years)
  • Tyson (approx 17 years)
  • Tinky (official name Clover approx 18 years)