‘You Get What You Give’

It has been a strange week.  My head has been all over the place and I have had so much I wanted to do and I haven’t had the energy or time.

One of those situations whereby the head is running away but the body is not keeping up.   This song has a line in it that is apt for me at the moment “Don’t give up, you got a reason to live”.

Before I went into hospital I had a couple of orders and for one thing and another I didn’t seem to have the time to complete them.  No good starting card making when you only have an hour to spare.  Thankfully I have managed to get them finished now.  I think I was also frustrated as well because I enjoy making my cards and I wasn’t able to do the thing I love (whilst listening to music of course).  Being creative whilst enjoying music is good therapy for me and I de-stress.

Some of the problems have been that whilst I was in hospital my mouldy man said that I could try and increase my inhaled Colomycin, Nebusal, Salbutamol to 3 times a day.  Also, increase my Fungizone dose from 10mg to 15mg. (He also mentioned trying to get up to 25mg).  Well, I have managed to increase the Fungizone to 15mg but taking my nebulise 3 times a day just seems to swallow up the day.  I produce a lot of sputum daily and doing my salbutamol and Nebusal then lung clearance after which I do Colomycin and Fungizone can take over an hour sometimes and I quite often exhausted afterwards.  I then sit down and have a cup of ginger tea to take the taste out of my mouth and relax.

th2mu plus vial plus PIL

Three times plugged into the nebuliser just takes a big chunk out of my day and sometimes it is difficult to space them out if I am doing other things.  He did give me other options, taking an oral antibiotic that will interact with my asthma treatment so would need bloods done regularly and or reducing my asthma medication or be admitted every 3 months for 2 weeks iv antibiotics and intensive physio.  Lung clearance can be very tiring as well as everything else.  So I have a dilemma.  I think I have ruled out the nebuliser 3 times daily as I just got grumpy trying to fit everything in and planning things around the medication.  When I see him in June I might try the oral antibiotics and see how that goes.  I am a bit worried as my asthma is well controlled but have to give it a go.

Aspergillosis Trust has been up and running for a year now and we have made great progress.  We had a big part to play in World Aspergillosis Day and we have raised over £7000 from fundraisers and selling awareness items along with generous donations.

wad2019 at posterAT notepad + keyring + wristband + ribbon

Scan_20190516

You can get merchandise from http://www.aspergillosistrust.org and support us and help raise funds for this awful disease.  You can read peoples stories on the website as well.

Tomorrow I am off to Richmond to celebrate one of my oldest friends 60th birthday.  One of her sisters is picking me and hubby up so I don’t have to drive.  I am really looking forward to it.  They are such a lovely family and I am chuffed to bits that I am included in family celebrations.  So I have to get all my treatments done, tablets in my pill box to take with me and be suited and booted by 10.15.  Monday could be a blob in a chair day but it will be worth it.

I really want to get into the garden next week and get some things organised.  Need some bright colours.  Everything is lovely and green but not many blooms.  As they say ‘onwards and upwards’

Take care. x

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