Comments 4

So fuckerty fuck !!

Fuckerty fuck!! I am so run down at the moment. One thing people don’t realise is how it creeps up and bang knocks you for six.

This year I have been running round doing a lot more than usual as I’m usually sitting next to Ava bedside in hospital.

I have been racing round doing school drop offs, meetings, therapy, doctors, meds pick ups and swimming lessons and dinners and house hold crap and challenging teens and driving lessons and now after Ava’s last emergency admission two weeks ago I have a cough and cold. Poor me I say but tough shit no time for rest. Get those cold and flu tablets in you and keep going.

I feel so old at the moment. 38! So exhausted to the point I can’t fall asleep. I have found that even at 3am if I’m laying in bed I grab a book and read. It’s helped me a lot. See I never find time to read for leisure. I even managed to Finish the 350page book woohoo for me!

Ava hasn’t been sleeping much either she is so clever she pulls her Cpap apart and I have rigged up a way the machine won’t fall on her head or floor now that she is pulling the cords so much. Little bugger laughs all night at what ever she is seeing or thinking.

Seizures are all over the place still. She was in status last admission which was terrifying and really shook me up as they wouldn’t follow her old seizure plan which they had as they didn’t feel confident giving her those medications which drove me to tears and I was arguing that madazolam over and over and over again won’t help but suppress her breathing. Then they have a load dose of Keppra which did jack shit: anyway infection was the cause Of this crazy seizure activity.

Poor Ava – it was really hard but she is on the meds still and at home: today she got out of bed at 2:30pm she too has a cold and has been on cpap 18-20 hours a day.

I Let her pick how she feels and what her body needs. I don’t like to push her all the time but I do remind her about life outside of the bedroom and house. She loves adventures to the local parks and shops. She thinks levelled car parks are hilarious and reacts as one would on a roller coaster.

I love that about her – always looking at the happy and funny to everything.

Master Wil has had his eyes retested again and has received his glasses again. This time I don’t care what it takes but he will be wearing them as much as possibly. He believes they are super minecraft glasses and will help him be a better minecraft player. They are black and green. They look great

Life is busy like other families but this year all the kids have so much on. You never realise how hard it is juggling young kids and teens and young adults all at once.

You seriously are the hated or the enemy. But my job is to be Mum and I fail many times. It’s so hard. But hey my feelings are we try and we do and we don’t give up.

Keep climbing that mountains even if it’s full of snot and shit bags coz the next one might be bliss.

Thanks for reading

This entry was posted in: Disability


I'm a mum of four who loves my kids but juggles some amazingly hard battles with disability and illness with two of my children. Sleep deprivation, time and being Homebound you will hear about many issues I face daily but mostly with a positive view. I just need somewhere to vent So thanks in advance if you even bother to read my mumble jumble


  1. Jenny Porceddu says

    So interesting Jo, you turn every challenge into a rewarding and learning experience. You havre climbed so many mountains and there is always another one just up ahead. Dont know how you keep going, but as we so often say, you are a Supermum!

    Liked by 1 person

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