Anne Sharman

My journey with Idiopathic Pulmonary Fibrosis (IPF)

Where to Begin?

This blog is going to be my thoughts and experiences we face in everyday life. I am just hoping that it may help someone else who is going through the same thing as us. I don’t intend this to be sad and full of self pity . We like to see the funny side of things and have quite a wicked sense of humour sometimes.  I would say enjoy but that might not be the right word to use here!  It is my aim as I have already said to enlighten people about IPF and to the struggles that IPF brings with it and educate those that have no knowledge of it!  Thank you for reading it X 

1st January 2020

Well that is over for another year!  I have never been a fan of the New Year celebrations that we put ourselves through because emotions run riot with me  but it is now really poignant and hard to think of what we might be facing in the year to come.  Having said that we had a great time with friends old and new at our local Bowls club. It was a really lovely evening with music games food drink and great company. We joined last year and it has been such a breath of fresh air in our lives.  The game is great (Andy plays with his oxygen tank on his back which weight wise is like giving a small child a piggyback) the people are fantastic and so friendly and it has opened up another facet in our social lives which we are eternally grateful for. 

Andy was a little quiet and I know he was not feeling 100% but he didn’t say.  He was just getting over a bout of Shingles in his head and tiredness and fatigue are really quite challenging with this disease and I know he wasn’t full of energy. Still that aside a good time was had by all.  I tried not to let my mind run away with me and imagine what place we would find ourselves in the next New Years Eve.

 

STILL JANUARY..! 

Oh what fun we have had!  Not only has Andy had Shingles but he now has a cold.  Anyone who knows what a cold can do to an IPF patient will know how much you dread this. We are so careful too! A cough that is driving him and me mad and me begging him to get to the Drs is all in all causing me to almost explode with worry.  The cough just carries on and on and the oxygen levels go down and down. According to my husband he is "okay" and it is just a cold. Funny that I can see he is not as he says "okay" but hey ho who am I to know what I am talking about!  I managed  (after long ahem discussion} to get him to take his emergency antibiotics.  Anyone who has IPF needs to have in their possession at all times some emergency anti biotics.  Please please if you dont have them then go and get some from the GP's.  They hospital Pharmacist has said to start taking these as soon as you feel a cold coming on.

Apparently I worry too much!! Not much to worry about is there?  I am feeling that I am on a parallel universe to Andy where I see the pitfalls that he cannot see. I am recovering from a vein operation and feeling pretty rubbish.  Not only is my leg the colour of an aubergine and sore as hell but I am having to do all my own nursing as Andy simply is not up to it. Normally he is really helpful and caring and does a good impersonation of a nurse when I am poorly.  It has brought it home to me even more just how much this wretched disease is taking from us. 

At the risk of me walking out never to return he realises that he may need some medical intervention (all very well being so positive but positivity never cured IPF).