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.
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.
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?!?
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!
Different Is Beautiful Too!
Taking One Day At A Time 
Hope you are feeling better, everything works well for you. Thank you for letting use know that your husband is taking good care of you, Sarah.
I think he feels a bit useless sometimes as he can’t make me better just by wishing it! Our illnesses are so much more than just the basic description. I like the theme of this years awareness campaign so be prepared for a week of Purple Posts 😉 Thanks Amy, I should start to feel a bit better from the infection in a few days!
Pray for your health, Sarah.
Bless you Amy 🙂
I’m so sorry for your chronic illness Sarah. I was misdiagnosed with colitis many years ago. About fifteen years ago I found I actually have fibromyalgia as well as many food sensitivities. It has its moments but none sound as seriously challenging as yours. I can empathise and I send you cyber hugs and sincere wishes to feel better soon. xx
I was misdiagnosed with IBS before the Crohn’s was eventually found. The diet and fibogel they prescribed nearly killed me! It was a horrible time of my life. I developed fibromyalgia myself a few years after the Crohn’s was discovered. It’s believed that the severity of the Crohn’s and the trauma it caused along with the steroid medication is what triggered the fibro. It’s hard to treat as I can’t take a number of medications because of the Crohn’s and keeping my immune system suppressed makes the fibro worse. Catch 22 unfortunately! Glad to hear that you are managing your fibro. It can be devastating at times! I find the fatigue the most challenging aspect of chronic illness. Cyber hugs back to you Ardys, keep fighting xxx
I think it is shameful that you cannot get an appointment with your GP when you need one. I loathe this lottery of phoning for an appointment only to find that by 5 minutes past eight they are all gone! Really? You have to wonder how many are available to start with! And you can’t even book one in advance. I am a huge fan of the NHS but GP surgeries with this ‘phone for an appointment’ system on the day are not working. No wonder so many people go directly to A&E. As you have a disease that compromises the rest of your heath you should be given priority for an appointment. It is disgusting that you have to jump through impossible hoops every time. I shall step off my soapbox now Sarah and just wish you a speedy recovery. Oh, and thanks for a beautiful chrysanth 🙂
I’m right with you on that soapbox Jude!! When I book in advance for regular reviews the only appts are around 3 weeks wait. The whole booking system has been unnecessarily overcomplicated and non-medical staff act as judge and jury without ever consulting a doctor. Our NHS is a wonderful thing mostly because of the amazing doctors and nurses. Sadly management seems to believe in creating extra layers of management, who all need administration, subcontractors and agencies, consultancy teams who decide that there can’t be decisions without further consultation, meetings to set up meetings, changes to setups that were working. Basically creating work and jobs that aren’t necessary! It’s almost like the civil service has moved in and taken over. I want our healthcare back in the hands of the medically trained! My pleasure to bring you all the Chrysanthemum 🙂 It’s a bit like a catherine wheel don’t you think? I was exhausted today so went with a slightly simpler orchid. It’s still got purple in it though 😀 Thanks Jude!
Take care of yourself Sarah. 🙂
I’ll do my best 😉
Fantastic post and you take care. Hope you’re feeling better soon 😊
Thank you so much Mark! I rested most of today and hopefully I should start feeling the benefits of the antibiotics by tomorrow 🙂
So sorry to hear you have been down with an infection. My doctors surgery also has a walk in service. They have a doctor just for that. No appointment needed. Just walk in. You might need to wait for a while but you will be seen. Sometimes I have gone in and they see I am definitely not well and will take me somewhere to find a place to lie down. I think it is bad practice not to have more emergency appointments. Anyway hope the antibiotics are working and you will be up and doing some more of your fabulous artwork.
I had no idea that you suffer from Crohn’s, Sarah, you do a fantastic job of hiding how much you suffer through this each day. Anyone who doesn’t personally know you, such as me, would have no idea from your blog!! And I’m pleased that your hubby is such a support, he deserves the praise you are giving him 🙂
You are an inspiration to the rest of us, because despite your suffering, you are still able to go out and take these amazing photos and to write fantastic posts. I take my hat off to you Sarah 🙂
Thank you so much! The blog has always been a photography based page 🙂 It’s about me and my art. Crohn’s is a part of me so it has always been inevitable that it would be spoken about at times in the blog. Awareness week is a bit different though! My way of putting a positive spin on the posts is linking it all to beautiful and unusual flowers 😀 My art really helps me to take back some control and keep focused on all the joys in life. I am fortunate that many of my close friends are artistic in a number of ways, lots of musicians and writers. We are all a support for one another and an inspiration too 🙂 Simon is my most ardent supporter!! It’s lovely to have him be proud of me for the artwork that I create 🙂
That’s brilliant that you have so many friends around you, all that give you plenty of love and support 🙂 And I’m pleased for you that your art allows you to get some control over your life, you certainly come across as a very positive lass!!! 🙂
I try my best! Negativity can only bring you down.
Oh Sarah .. I’m so sorry to hear that you are so unwell. Bless your good hubby for helping! I hope you are feeling better ..huge hugs
Thanks Julie 🙂 Yes, Simon’s a star! Ears are getting better but living with Crohn’s and fibro is always going to be a challenge. That’s why the campaign this year is highlighting that every day is different!
Excellent post, Sarah, I very much admire your courage and candour in describing all this. And the more so, being able to function as an excellent photographer as you do, despite all this. I have experienced similar uncaring treatment from NHS staff but, as with all large organisations, its not policy but it is down to the individuals that we contact on the other end of the phone – some are uncaring, and some simply lack the imagination to envisage the sick person’s need and trauma. I’m especially filled with admiration for your selfie, posting that is a very brave and honest act – and the more so in a world where many bloggers never post their self-portraits at all. And the pictures of the flowers are exquisite. Take good care of yourself, my friend. Adrian
Thanks Adrian 🙂 Lots of people with IBD have been sharing selfies of both good and bad days this week. It’s usually only the people we live with that really see us like that. Many times when I go out I still feel pretty rubbish but I stick on a load of makeup and smile a lot. I think we only do that sort of thing because other people feel more comfortable if you’re looking well. Very often I wish I didn’t have to go through so much trouble and effort! There have been a wave of policy changes across the country over the last few years that restrict the appointments available at GP’s surgeries. One doctor may have all their afternoon appts blocked off on the system for a particular clinic. That clinic might only be half full but the receptionist can’t override the system to allow people to use the free slots for emergencies. It makes no sense to me whatsoever! Thank you so much for your kind words about my work 🙂 It’s really what keeps me going!
“I think we only do that sort of thing because other people feel more comfortable if you’re looking well” >>> you may well be right, my friend, which is a very sad thing. And my words, well, they are always sincerely meant. I wish you strength and courage. A
Thanks Adrian! Sadly, I know I’m right. I have a number of friends with Crohn’s and other chronic illnesses who all find that they end up doing the same thing! Perhaps it’s an extension of that ridiculous “stiff upper lip” mentally? Your wishes are greatly appreciated 🙂
You are a tiger, a butterfly, but mostly you are a wonderful you with a wonderful husband 🙂
Simon is most definitely wonderful 😀
Not Crohns but my own multiple morbidities. I’ve got a doctors office now if I’m having a pain melt down or infection anywhere they move quickly. If it’s anything else then I am ‘in the same boat as everyone’.
It would be an understatement to say you need a better doctors office. I’m old now. I no longer tolerate allowing health problems to spin dangerously out of control just so I can maintain proper societal niceties and rules. :p Hope you are feeling better.
Thank you and I understand totally about the difficulties with multiple conditions! Mine can often be very unpredictable. My doctors themselves are really lovely but administration and bureaucracy are hampering GP’s across the country from providing care when it’s needed to whom it’s needed! If I could speak directly to a doctor instead of a receptionist or the practice manager many emergency treatments would be sorted out just like that! Unfortunately admin rule the place these days and tend not to apply common sense to their job. It doesn’t help me that my illnesses are relatively hidden and I’m still quite young. There’s always that look of disbelief in the eye of the admin staff member you’re speaking to 😦 I’m not too bad having had a lovely holiday in Greece 😀 The climate there really suits me so fatigue and pain levels are much reduced! One day we will move there permanently 🙂 Hope you’re reasonably well too at the moment!