I am on the road from misery to happiness

As The Proclaimers would say.

Not sure what has happened but I am definitely feeling better.  Breathing has improved and I am not losing it every five minutes anymore.  I think the mood thing is the steroids as I am back to my normal dose which is great.  My maintenance dose is 15mg which I know is high compared to some but I can deal with it.  I see the signs when things are going to erupt so take myself off and usually play some music or give myself a good talking to.  I also am able to control my diabetes on this level.  I have to cut out carbs but it can be done without all the extra medication.  When I am on a high dose of prednisolone I need Metformin and Gliclazide I can now take less of the Gliclazide and eventually stop it.

We went on holiday last week to Norfolk and that helped as well didn’t do too much but managed a bit of walking and retail therapy which always helps.  We stayed at a lovely place right on the river and watched the wildlife.  My husband fishes and he had a heron visit everyday and stand near him.  I was convinced he wanted Martin to catch his lunch for him.

I am also happy because my appointments at Brompton have been sorted thanks to Prof’s secretary Margaret.  She has organised for me to have my CT scan before I see Prof so hopefully we will get to the bottom of what has been happening.  I also have to ask about oxygen as my local hospital thought I should have it at home.  Not keen as I walk with sticks and not sure how I would cope.  We shall see.

Brilliant news though now that the amount of mucky gunk has reduced I think the Fungizone is working better.  Nasty black plugs are coming up which is the aspergillus, horrible.  Sometimes I can cough and these things just get propelled into my mouth (I apologise to the squeamish).  Haven’t produced any in years but knew they were there from the scans.  So it goes to show I needed some sort of antifungal.  I tried Itraconazole but couldn’t tolerate it and thankfully my mouldy man put me straight on inhaled as I had such a bad reaction and I am on so many other medications and some interacted with the oral antifungals.

Things hopefully are on the up and when I go to Brompton next week perhaps there will be some answers.

Now a little plea.  Whilst I was under the weather a group of my fellow sufferers along with the help of Graham Atherton from the National Apergillus Centre decided to set a group so that could brain storm ideas to get awareness and fundraise for the illness.  The ultimate goal getting a celebrity patron.  So anybody out there that reads this in the media or knows any celebrity that might help us please let me know.  It would be a great help.  A new website s being set up for fundraising so it will be easy for donations.  Hopefully we will get endorsements from people as well that we can post on there.  If you think you can help it would be appreciated.

Begging over.  A big thankyou to everyone that sent kind wishes whilst I have been under the weather it really does help.

Take care x

4 thoughts on “I am on the road from misery to happiness

  1. So glad you’re feeling better Jill. You’ve had a rough time but hopefully they will be able to find out why. Great that you were able to get away too. Take care Ann xx

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