“Power to the People”

The Aspergillosis Trust is a patient and carer advocacy group and we have been posting stories and posters to try and help with more awareness of Aspergillosis for World Aspergillosis Day which is on 1st February. This disease is life changing and is often missed. We need more medics to #Thinkfungus when antibiotics don’t work.

The response we have had from all over the world has been spectacular. Everyone has responded so well and at the last count we had over 41,000 impressions on twitter.

Now it is my turn.

I have – Severe Asthma, Allergic Bronchopulmonary Aspergillosis, Aspergilloma, Colonised Pseudomonas Aeruginosa, Mycobacterium Abscessus and Bronchiectasis. Conditions caused by the treatments I have received over the years are Osteoporosis, Addisons Disease and Diabetes. I have had scoliosis from birth but it has worsened over the years. I don’t think the Osteoporosis has helped. I have metal rods in both femurs so I now walk with crutches as I am sure one of the rods is longer than the other! I walk with a wobble without them. Doesn’t paint a pretty picture. I am now in my 60’s and even though every day is a struggle I feel fortunate.

I have a wonderful team of doctors looking after me. There are 3 from the Royal Brompton Hospital in London and then 4 at my local. So thank you to all you people that stay well and contribute to the NHS I am the beneficiary.

I had a video appointment with my bug man just before Christmas (he is getting used to me now). My laptop is in my craft room so when I have these appointments my backdrop is boxes of craft stuff or Aspergillosis Trust merchandise. He made a comment about it looked like I was in an NHS stock room then went on to say that every time he spoke to me I had gained an expert doctor to look after me. I made the comment quite right too I deserve the best. I actually got a smile and I think a small laugh.

Not only have I a wonderful team of doctors looking after me my husband is a star. I think I would have given up long ago if it wasn’t for him. We still laugh and luckily enjoy music and film also he is more than happy, when I am having a bad day, to sit and watch a film with me. I also have a fantastic group of friends. There is great support from my mouldy friends. Life is easier if you want to rant about things because they always understand. Understanding and not feeling alone is so important. WARNING – Who else can you talk to when you cough up lumps of black rubber or blood without an ERGH. So thank you all.

My life does revolve around the medications. 3 tablets before breakfast, 2 after. Nebuliser consisting or 4 items, 2 inhalers, 2 loads of eye drops and a nose spray. Then I am free till the afternoon when I nebulise again. This time just 2 items. After dinner another 4 tablets then the nebuliser in the evening the full wack this time 4 nebulised items, inhaler (just 1) eye drops and nasal spray. Then before bed another 3 tablets.

So there you have it Aspergillosis. Fungal spores that can cause so much damage. Aspergillosis is really an umbrella term for different illnesses some more serious than others but all of them life changing which involves some nasty medication.

So please help us in our fight by sharing this blog. There is much more to tell but I do not want to bore you.

You can go to the Aspergillosis Trust website http://www.aspergillosistrust.org and read about us and our aims. We are a group of patients that are trying to do our bit by supporting and educating each other so we can better understand what we are dealing with. We also want more doctors to understand this rare disease.

This is for everyone coping with a rare disease at the moment. Stay strong.

Stay safe everyone and thank you. x

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