Room 101


Room 101 is a BBC comedy television series in which celebrities are invited to discuss their hates with the host in order to have them consigned to the eponymous chamber from the novel Nineteen Eighty-Four. My own experience of Room ‘101’ was far from humorous though it did succeed in banishing forever, the mystery of my medical condition. The year was 1993. The location was a hospital. The journey was tough but the race was won!

Years ago while recuperating at home following surgery, I developed unforeseen complications and was rushed back into hospital as an emergency. I was to remain there for a further week while undergoing treatment to stabilise my condition. Within 36 hours of arriving home for the second time, I became seriously unwell again and was rushed back to hospital by ambulance. That night I did something I’ve never done before, or since – I shared my bedroom with a strange man. You see I’d been admitted to a cardiac unit for observation and found myself installed next to a man with a seriously hairy chest. We were the only occupants of the room and all I could do was laugh at the situation I found myself in. I hasten to add that we were both hooked up to monitors and all activity was closely observed!

The following morning, I was declared fit enough to be moved out of the cardiac unit into a single room, number 101, to undergo further investigation under the care of a physician. I was very unwell at the time and this second relapse was a mystery to everyone. The new physician examined me thoroughly and then disappeared, leaving behind a lot of unanswered questions. Over the next few days, I reached the lowest physical and psychological ebb I’ve ever experienced. A whole month had elapsed since the surgery and I appeared to be losing the battle. My children were both very young at the time and my husband was under huge pressure trying to manage everything on his own. I remembering phoning home one Saturday evening to check that our 3-year old had settled for the night only to find no-one at home. This totally cracked me up. I was so low at that point, I couldn’t fathom out what was happening and that’s when the realisation hit that life was going on without me, regardless. I cried myself to sleep that night.

The next morning things started to improve. My husband phoned to say they’d had a lovely meal out at our friends’ house the previous evening. He sounded on such good form, I hadn’t the heart to tell him how low I’d felt as a consequence of being left out of the loop. Shortly after his call, I turned on the television to find the London marathon in progress and having nothing better to do, I watched the whole thing from beginning to end. I spotted a female competitor with the number ‘101’ on her chest and from that moment on, she and I became an inseparable team. As the race entered the final straight, my running friend was placed third and was steadily gaining on the two women ahead of her. I watched with enormous excitement as she overtook them both and crossed the finishing line as the winner. I was ecstatic and cheered my little heart out. I knew this was a sign that I too, was going to be a winner in the long run. Later that same day, the physician reappeared at my bedside having researched my condition in the interim. He had established that I had an underlying genetic condition known as Ehlers-Danlos syndrome (EDS) and this diagnosis unravelled the puzzle of my illness. The battle was won.

An Update: Thanks to my son, Robin, I can now tell you that the winner of the 1993 London Marathon was Katrin Dörre-Heinig… number 101. Talk about a flash-back!

15 Responses to Room 101

  1. Bean says:

    Great post – definitely need to get you a book bound of all these and supply it to all the hospitals!

  2. Grannymar says:

    I always knew you were a winner! Keep fighting the fight.

    Leaving for Dublin shortly, see you Saturday!

  3. Steph says:

    Thanks GM – can’t wait to meet you and all the gang!

    Don’t overdo it in the meantime – Steph’s orders!

  4. Bendy Girl says:

    It makes me very sad that the majority of those with EDS have to endure so much to get an accurate diagnosis. I’m glad you won the battle, even if you should never have had to.
    I personally can’t recommend enough going to see Prof Bird in Leeds to get an accurate diagnosis made by a true specialist in EDS (he’s absolutely adorable too!) I sort of feel we owe it to ourselves, the specialists, and all those with EDS to see a true expert, at least once for the benefit of research, wider knowledge, training etc. If you ever get the chance I would say take it…it won’t be like any other doctor you’ll ever see! BG x

  5. Baino says:

    Aww Steph. You’re very inspiring even if your doctors aren’t quite so. Enjoy the Blog Awards . . say hi to GranyMar for me!

  6. Steph says:

    Thanks! folks

    Writing this post brought me right back to being in that room. The 3 year old mentioned here, turned 18 last week and will be accompanying me to the blog awards this weekend.

    I wonder where the marathon runner has got to – I’d like to thank her for her inspiration 😉

  7. nonny says:

    God Steph if that had have been me everybody would have know about it, I would have screamed the hospital down. You are a remarkable women. Where you get your enthusiasm from I will never know.

    Oh and good luck at the Blog awards, I hope you have a fantastic time. I’m sure you won’t leave empty handed.

  8. Steph says:

    Nonny – thanks!

    I’m what you might call a ‘patient’ patient! When you spend large parts of your life waiting to see doctors, waiting for test results, waiting for surgery, waiting for medication to work and waiting to get better, you soon learn that patience is the only way to go.

    As regards the marathon win, the nurses thought I’d lost it altogether! 😀

    The blog awards should be an interesting night. It’s like a ‘coming out’ in many respects with all the associated worries attached. If the blogosphere is anything to go by, then I’m sure we’re in for a great night!

  9. Robin says:

    How’s That!! Katrin Dörre-Heinig 1993… number 101!

  10. Steph says:

    That’s amazing! Robin

    Talk about a flash-back.

    Thanks to you, and Katrin!

  11. What a brilliant and inspiring post, Steph. I often found over the past four years of my mysterious illness that watching athletes was the most incredible motivation and inspiration to get well again. I felt I could “taste” their energy and I really so much wanted some of it. You keep “running”.

    Good luck and enjoy the Blog Awards night! Have a wonderful time!

  12. Steph says:

    Thank you! AV

    I’m sorry to hear that you’ve been tackling illness for so long. I didn’t realise that. I know well how horrible it is to be a ‘mystery’ in medical terms. While no one enjoys being ‘labelled’, it is a relief when you find out that you’re not the only one with a particular problem.

    I think many people spend their lives trying to be ‘different’, to stand out from the crowd, whereas all I’ve ever wanted is to be allowed to be the same as everyone else. 😀

    The Blog Awards was great fun last night. Grannymar and Grandad (Head Rambles) won the category I was in (Best Personal Blog), and deservedly so. Their blogs are absolutely fantastic!

    I had the added thrill of finding out that my son, Robin, had won the Best Technology Blog category. He is working abroad at the moment, so I was delighted and very proud to be able to accept the award on his behalf. A memorable night indeed!

  13. Nick says:

    Good to know you actually got a diagnosis. So many people labour on for years with mysterious ailments none of the specialists can identify. Or they get the diagnosis completely wrong and cause no end of problems. Though to be fair there seem to be more and more obscure diseases that affect a tiny minority of people and it must be a hell of a job trying to find out which one someone’s got, particularly if the medics have never seen it before.

  14. Steph says:

    Thanks Nick.

    Yeah, it can be pretty soul destroying to be a medical mystery. I was lucky in that the physician who was asked to oversee my case, was a top diagnostician – of the old school variety. He could make a diagnosis by look and touch and only used medical science to back up his hypothesis. EDS is not a well-known disorder – it is one of many connective tissue disorders – so I was lucky to find someone who was prepared to do the necessary research to unlock the mystery of my complicated medical history. It was quite extraordinary how from then on, everything made absolute sense.

  15. […] Blog: the MD established that I had an underlying genetic condition known as Ehlers-Danlos syndrome … […]

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