All Tagged Out

I’ve been tagged by Mousie. Now Mousie’s not someone you mess about with as one day you may end up on a trolley in her A&E Dept and that’s when you’ll be glad you did as she asked! Having said that, I’ve never been good at obeying rules so I’m going to do my own thing with this meme. If you want to see how it should have been done, pop on over to Mousethinks and, be impressed.

I’ve been asked to share some facts about myself, some random, some weird. As the theme of this blog is medical/health-related, I’m going to stick with my medical misadventures. Here goes!

I am a twin. My mother spent the final month of her pregnancy in a small nursing home, on strict bed rest. My twin brother arrived into this world 20 minutes ahead of me but he arrived so quickly, my mother never made it to the delivery room. They tried to transfer my mother immediately afterwards but I decided to arrive while she was on the stairs. She was rushed back to her bed just in time for my delivery. In all the excitement, my brother got forgotten and was later rescued from under the bedclothes. That all happened 50 years ago last May.

I once smashed my big toe when my ‘hot jar’ landed on it. When I was a little girl, we didn’t have the luxury of rubber hot water bottles. I had a heavy ceramic jar filled with hot water, with a large ceramic screw lid on top and it was used to take the chill off the bed as our house had no central heating at that stage. Anyway I managed to drop this thing on my foot one day causing my toe to bleed profusely. I can recall having my foot immersed in a basin of hot water (with Dettol) and watching the water turn bright red. I also remember my Dad giving me a piggy back every day into school. A few week’s later I felt something peculiar in my sock and found a discarded toe nail.

During my college days, I was the proud owner of a gold Yamaha 50cc motorbike having worked for a whole summer in a German canning factory, to fund it. One dark wet winter’s evening on driving home, an oncoming car suddenly turned across my path without warning, at a road junction. In that split second, I had a clear choice. 1) to crash into the side of the car or 2) to take evasive action and swerve into the path of oncoming traffic. I chose to hit the car and I can still recall the ‘thump’ and the sensation of being catapulted through the air, over the roof of the car. I was lucky in that I survived and was carted off to hospital by ambulance but I lost my dear bike that night. It took many years before I rid myself of the nickname, Evel Knievel.

Those of you who have read this blog before will know that I have an inherited connective tissue disorder (EDS) which leaves me prone to joint laxity. I’m right-handed and so my right shoulder takes the brunt if/when I have a fall. After several dislocations it eventually got to the stage where I needed surgery to stabilise my right shoulder joint. The surgeon carried out a ‘Putti-Platt’ procedure to shorten the ligaments and prevent further dislocation. Now no matter how hard I try, I cannot rotate my right arm outwards (no external rotation) to reach things on my right side. Think about this, the next time you reach for your driver’s seat belt.

And that’s as far as I got last night before I became all tagged out and went to bed feeling rotten. I’ve not been feeling well since last Friday having woken with marked congestion in my nasopharynx (area behind nose and above soft palate) but with no sign of a cold or sore throat. The congestion continued over the weekend and I began to feel like I was fighting a viral infection. My husband had to abandon the bed by Sunday night as loud snoring prevented him from getting any decent sleep. Yesterday, the congestion moved on up into my forehead and overnight it turned into a fulminating infection with pus literally bubbling over in my head. With my past history, I cannot afford to take risks so I headed to the doctor first thing this morning to get nasal swabs taken before starting on an antibiotic. So my medical misadventures are ongoing. I’m going to call it a day now as my head feels like it’s been taken over by aliens. I’m not going to tag anyone with this meme for fear it may be infectious. Enjoy the lucky escape!

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!

Holding on for dear life

Last week, I was busily preparing a new post for this blog when some unexpected news came through, leaving me unable to concentrate on anything much since. Life has taken on a new light and we as a family are quite literally ‘on-hold’.

Ten days ago we moved my 88 year-old mother-in-law into a local nursing home as it had gradually become too difficult to manage her care around the clock despite daily help from a small team of carers. Last Wednesday, a blood test unexpectedly revealed that she is in acute, end-stage renal failure from which there is no return. Her days are acutely numbered. This news came like a bolt out of the blue and initially left the whole family reeling in shock. We were given the option to transfer her immediately by ambulance to hospital for treatment which might at best, prolong her life by a few weeks or alternatively, to allow her to die naturally within days with palliative care provided at the nursing home. The whole family were all in agreement that she should be allowed to end her days peacefully without the interference of emergency medicine and we have opted to maintain a bedside vigil for her in the nursing home. My in-laws are spread far and wide but over the past few days they’ve arrived in a constant stream to take their turn in helping to smooth the final journey of a much-loved mother, and granny.

My mum-in-law was a legend in her own right. She lived a privileged life and together with her late husband, raised four fine sons. She was an outstanding cook, seamstress and gardener in her day. She loyally moved location every three years throughout her husband’s career and everywhere they went, she set-to with gusto to furnish each new house using her old-faithful sewing machine. No task was ever too great and she was never idle. She always found time to spend in her beloved garden where she designed and created gardens that were the envy of all who knew her. When her four children were very young, she made all of their clothes and continued this tradition for her grandchildren making beautifully embroidered smock dresses for the girls, individually crafted hand knits, clever fancy dress outfits and gorgeous soft toys for everyone. She also produced many fine tapestries in her time. She was the stalwart of the whole family and her home was always a place of warm welcome with lovely home cooked food in abundance. She was well-renowned for taking under her wing children less fortunate than her own and she would lovingly provide them with the stability needed to thrive. When I first met my future mother-in-law, she welcomed me into the family with open arms and I shall always be grateful to her for all her love and encouragement over the years.

She’s had a very good innings but now her time is rapidly running out. She’s being kept very comfortable in the nursing home and has rallied somewhat due to a change in medication. In the past few days she’s been more alert than in many months and her family have been able to enjoy some special time with her. It’s like her final swan song before she departs. Her funeral will be a huge celebration of a life well-spent but until then, this is my tribute to the mother of all mothers.

Does She Take Sugar?

I had occasion earlier this year to use a wheelchair while travelling home by air. I was en route back to Ireland following a stay in a UK hospital for complex surgery on my skull. I had been discharged from the hospital earlier in the day and felt totally elated to be on my way home at last. However, the journey proved to be more of a challenge than anticipated and I ended up needing a wheelchair. The experience was a real eye-opener.

I’d walked happily out of the hospital to the car with my husband but by the time we reached the airport, I had lost all enthusiasm for the journey home. I knew I was in trouble. On getting out of the car I was overwhelmed by nausea and dizziness and could feel the blood draining from my extremities. I felt so ill on entering the airport terminal building that I had to lie down on the nearest row of seats while my distraught husband contemplated the next step. We had two options. He could call an ambulance to take me back to the hospital or we could soldier on and try to endure the flight home. We had been told at the hospital that the flight would not represent a risk following the surgery. I knew what I wanted to do and when I’d recovered enough to be able to speak again, I proposed the idea that I could manage the flight if only I had a wheelchair. I was sure that if I did my utmost to appear well enough, I would be allowed to board the flight. It felt like an insurmountable challenge at the time but I was determined to get home that night. My husband soon found a rickety airport wheelchair (with zero suspension) and we proceeded to the check-in desk. Now it’s a well-known fact that you need to be in the full of your health to fly with Ryanair but this was taking things to the opposite extreme! I could barely even hold my head up at the time. However on reaching the top of the Ryanair queue, I smiled sweetly at the member of ground staff while my husband made light of our circumstances and to our surprise and delight, we were checked onto the flight no problem. No extra charges were requested – wonders will never cease – not only that, Ryanair also provided a decent wheelchair and promised that I would be boarded first, ahead of all the other passengers. Life was looking up again!

However we still had nearly two hours to fill in the passenger departure lounge before take-off and that time seemed to go on for ever. I can remember noticing that everyone seemed to be snacking on some fast food or other and it all seemed really busy and noisy compared to the quiet of a hospital environment. I was still feeling very nauseated and also very cold. My head was heavily bandaged and while I wore a large headscarf to cover-up, I was unable to disguise my swollen face. The thing that amazed me the most was that people were so rude in the way that they stared. While we battled our way through airport crowds I could really sense the unwanted attention. I had no idea that the experience of being pushed in a wheelchair could feel so demoralising – all independence is lost – and a wheelchair seems to represent a passport to others to stare. It really opened my eyes to the conditions that wheelchair users endure and of course, not everyone is as lucky as me to have been only temporarily using one.

When the time came for departure I was dutifully wheeled to the steps of the aeroplane by my husband, accompanied by a Ryanair escort and was helped to board the plane while all the other passengers waited in the terminal building. It was a great help to get this little bit of VIP treatment though it wasn’t long before everyone else followed and of course many of them had another ‘gawk’ on boarding the plane. The flight itself was fine and on landing, Ryanair again came up trumps by providing a wheelchair for transport through the airport. Again, I had to endure endless stares and by the time we got to the arrivals hall, I burst into tears on being met by a dear friend. It was such a huge relief to be whisked home, away from the public glare.

Yesterday I repeated the same journey as I had to make a return trip to the UK for a check-up with the surgeon. This time I did the journey alone and in the full of my health. The news was good – the surgery has been very successful and I felt like dancing in the streets afterwards. On the way home through the airport last night, the memories of that wheelchair journey came flooding back. I thanked my lucky stars to be able to walk to that plane. I also resolved to never, ever stare again at anyone in a wheelchair.

And Ryanair – you can take a bow 😉