When a beauty party invite landed in my Facebook notification thingy last week I clicked the Going button and scribbled the details in bright red pen all over the kitchen calendar. One thing I have missed since moving to the middle of nowhere is the social side of life. Ironically I’m not a very sociable person inside and the thought of sitting in a room full of women I don’t know filled me with dread. I’d choose sitting on the sofa with my nintendo 3DS over chatting about cellulite with a group of mums every time. But, when the highlight of my social life consists of talking to the postman, I couldn’t refuse.

My neighbour was launching her new role as a consultant with a gathering of friends complete with nibbles, drinks and plenty of 100% organic loveliness. I jumped in the shower first thing and even managed to blow dry my hair (if it looks like a slightly fatter toilet brush than normal, that’s my attempt at effort). Mrs Wifey set my fluids up and as soon as I was hooked to my feeding pump we headed to my neighbours house.

As soon as the front door opened my heart sank. The room was full of kids, a faint whiff of baby tickled my nose hairs and someone was sniffing. Mrs Wifey and I tentatively found a seat but when our host confirmed someone in the group had a cold we both shot up onto our feet and apologised. We had to leave.

You see, my immune system is not great. It’s not totally rubbish but I am more prone at catching bugs and other contagious nasties. Due to my feeding tube, any infections or bugs cause my stoma (the hole in my tummy where my feeding tube goes through) to make more gunk and my body becomes unable to tolerate feeding at all. I can go a few days without feed but I need fluids through my tube every day, without it I get very poorly. Due to various problems with my heart and blood pressure (thank you POTS) and a faulty immune system (even bigger thank you to MCAD), I also cannot take ANYTHING for colds or bugs. Lemsips, throat lozenges, even a simple boost of vitamin C are not allowed. I’m completely left to my body’s own defences, which are pretty crap at the best of times. If I so much as look at a box of echinacea tablets my blood pressure crashes, my heart rate drops and I develop sudden allergic reactions which can lead to alopecia, full-body rashes and vomiting. To top it off, if I do catch anything, a cough or sneeze can leave me with dislocated ribs and torn muscles in my back. Basically, if I catch even a simple sniffle I’m screwed. My only option is prevention. I have facemasks in very coat pocket and my hands are raw from all the antibacterial gel I go through in a day. Even so, I still have to avoid being in close proximity to someone harbouring mischievous germs.

Disappointed at not getting to enjoy the fact I was wearing jeans instead of my usual giraffe sloggies, I headed home and curled up on the sofa with my heated throw and an episode of Gogglebox.

I’m used to missing out on things due to my health. If it’s not an accessibility issue with three flights of stairs or a last minute warning that someone has sneezed all over the only teacup I can hold, it’s because I’m too unwell that day. But, today I didn’t miss out thanks to a little extra thought from my neighbour. A few hours after getting home there was a knock at the door and the host of the party stood on the doorstep. She came to tell me everyone had gone, the room had been blasted with anti-germ busting organic oil and would I like to come back and have a look at the products. She even offered to bring some of the products to me if I was unable to manage the short walk to her house. I took up her first offer and threw my coat over my giraffe pjs and headed to her house to sniff as many smelly bottles as I could. After buying a raffle ticket and double checking for allergy-inducing ingredients, I placed an order for a relaxing aromatherapy roll-on.

For the first time in a very very long time, I felt like someone understood. Someone had gone out of their way to ensure I didn’t miss out and that showed me they were more than aware of how much life is affected by chronic illness. All it takes is a little adaptation and it’s easy to include a person with complex health issues, disability or chronic illness.

Author: Carrie

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2 thoughts on “When Someone Shows They Understand Your Chronic Illness

  1. It sounds like you have a wonderful neighbour that we can all learn from. Xx

    Posted on March 20, 2016 at 5:46 am
  2. so glad you had a great time. it’s brill when someone understands. i also have intestinal failure complete with Mic-key feeding tube, allergies plus other health problems. i tend to be the person others roll their eyes at ‘oh your one of those allergic people’!. yes i am i proudly say ‘that’s hypersensitive me’ i’m my family’s canary. the one who always knows when the gas has been left on or that the ham in the fridge is on the turn!
    When someone takes the time to care it matters, if only those times weren’t so few. keep as well as you can. with best wishes. love your blog.
    from a fellow medical mystery. sam x

    Posted on May 24, 2017 at 5:37 pm