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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!