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Every Day Is Different: Day 3

Chrysanthemum Explosion

Every Day Is Different: Day 3

#EveryDayIsDifferent #7daysofIBD #crohnscolitis

I thought you’d all like these wonderfully different chrysanthemums to mark the third day of Crohn’s and Colitis Awareness Week. Purple is the themed colour for IBD awareness and I’m having fun with my purple blooms. These ones always make me think of a big, colourful firework exploding! I really enjoy the way those petals start drooping as the flower starts to die back. Such interesting shapes 🙂

Every Day Is Different

Today I had a chat with a friend in Vienna who also has IBD. Messenger is a great way to keep in touch! Dani and I met over fifteen years ago. We were representing our country’s IBD Charities at European conferences for young adults with the disease. I helped organise one of these meetings here in London in 2000 and attended others in Amsterdam and Stockholm. They were all fun, informative and rewarding meetings. I’d never been to Sweden before and absolutely loved Stockholm itself!

My ears are improving with the antibiotics now and I have been less fatigued and more productive. Today was a good day 🙂 I’m hoping my energy levels will stay raised for the next few busy days! I may have to take naps between events but I am absolutely determined to have fun and get some new photography done too.

 

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Every Day Is Different: Day 1

Chrysanthemum

Every Day Is Different: Day 1

It’s Crohn’s & Colitis awareness week and this year we’re all trying to highlight that every day with chronic illness is different. I thought that I would share my life with Crohn’s alongside something that is beautifully different! Today it’s a chrysanthemum, a favourite flower of mine to gaze upon, photograph and create artwork with.

 

Today I woke up feeling awful from a night of sweats, cramps and night mares. That’s usual for me though! I also woke up with another day of horrible earache. I take medication that reduces my immune system in order to treat the Crohn’s, which is an auto-immune disease. This means that I get a lot of infections but I refuse to let it deter me from getting out and about.

Fatigue

This is the state I was in with my fatigue!

I set an alarm for 8.29am so I could try, for the second day in a row, to get an emergency appointment at the doctors. Yesterday was an epic fail as I slept through my alarm and by the time I contacted the doctors there were no appointments left! I tried and tried to get through today and all I got for about seven minutes or more was the busy tone. Then I fell asleep with the phone still in my hand and no appointment! That happens a lot to me as I have such bad fatigue and my nights are anything but restful.

CCUK

My care assistant came to help me get up, washed, medicated and dressed at 11am and by the time we had finished and I finally got through to the doctors – no appointments! I tried pleading, telling the receptionist that I’m immune compromised and explaining my difficulties in the morning (I have lost count of the number of times I have had to repeat this conversation). She just kept telling me that I had to phone at 8.30am and everyone else was in the same boat as me. I asked her to check with my GP and she said that she’d already asked her administration manager and there was nothing they could do. I broke down in tears. An infection can get really out of control with me if I don’t get treatment quickly. I felt so stupid, it’s just earache after all! But it really hurts 😦

My hubby, Simon, called me on his lunch break (he always does, lovely man) and was utterly dismayed that I still couldn’t get an appointment. Bless him, he got straight onto the phone to the doctors and had a discussion with the receptionists about what the NHS says about their duty of care for patients who need to be seen (strong words but a calm head!). He discovered that only 13 emergency appointment had actually been available today! That’s not healthcare, it’s a lottery based on whose phone connects first. Anyway, to cut the story down just a bit, suddenly they CAN fit me in but it’s a one-off special favour?!?

Every Day Is Different

I was seen by one of the doctors that I really like at 5pm who confirmed that I do have quite an infection, possibly inner and outer ear from how red and inflamed they were. So finally I have the antibiotics I need, a soothing ear spray and the relief that I will feel better soon. My hubby, my hero, thank you so much for backing me up and always being here for me!

Ornamental Chrysanthemum

Different Is Beautiful Too!

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Purple Friday

#PurpleFriday

Purple Friday – Part of Worldwide Crohn’s and Colitis Awareness Week

For any of my followers who don’t already know, I have Crohn’s. I was diagnosed nearly twenty years ago and have since undergone four major abdominal operations including having an ileostomy created; developed secondary Fibromyalgia, psoriasis, vulvodynia, ocular disease, dental disease, kidney stones, foliculitis, skin ulcers, allergies, abscesses, strictures, hair thinning and reflux; I’ve had countless colonoscopies, ileoscopies, barium meal x-rays, transfusions and blood tests; I’ve taken pretty much every medication ever used in Crohn’s, plus several more experimental treatments; I am now taking Azathioprine and Humira (adalimumab) injections which reduce my immune system, along with numerous other medications for symptoms of all my conditions and to counteract side-effects. I have a GREAT life; brilliant family and friends, two lovely cats, art and photography, poetry, music, travel, the great outdoors, the RHS, lots of children who aren’t mine but I love them all to bits, oh, AND next year I’m getting married to my wonderful man, Simon 🙂

For #PurpleFriday, patients, their families and friends have all been wearing purple and taking selfies to tell their stories and raise awareness of Crohn’s and Colitis all over the world. Instead of a selfie, I decided that sharing some of my favourite purple floral-photos was a much better way of telling people about myself. After all, Crohn’s is only part of my story! It’s also a great way for me to say thank to Crohn’s & Colitis UK (CCUK) for all they have done for me over the years and to send a big hug out to everyone around the world affected by these illnesses.

This is a gallery of posters shared by CCUK this week to raise awareness, please feel free to share them!