May 14

Transverse Myelitis – Overcoming Adversity and Feeling Lucky

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In a departure from my usual blogs, I wanted to tell you why we are donating the proceeds of our June Breath of Fresh Air® to the Transverse Myelitis Society.

Having just got back from a wonderful holiday in America this time last year, I went to the gym for my first workout and a day or so afterwards felt a tingling band around my waist and a bit of backache. I assumed that this was just my body’s reaction to working hard after resting for a couple of weeks.

The tingling persisted, started to feel painful in a sensitive sort of way, then the band widened and my toes started tingling too. I was gradually losing the feeling from my waist downwards – and my feet upwards – and with some strange stabbing pains across my abdomen.

After three trips to see a GP (a different one each time) as my symptoms worsened I was lucky enough to be seen by a doctor who had experienced this before – I will tell you why I was lucky later. It was 5.30pm on a Friday afternoon and she asked me to sit in the waiting room while she contacted the hospital to get me an urgent appointment. I remember it clearly as I was watching Andy Murray play one of his Wimbledon matches (yes and of course he won!) which kept me distracted from feeling worried and that something was going on that was outside of my control.

I was seen at the hospital on the Monday morning and after numerous tests they gave me a bed for the night so that I could see the neurological consultant the following day. After a very long night and long day waiting I finally saw the consultant who told me that I had Transverse Myelitis, something I had never heard of and neither, I imagine, have most of you.

He gave me a brief explanation as to what Transverse Myelitis is, told me that there is no treatment and no cure and to go away and look it up on the internet before I going back to him for a follow-up appointment several weeks later.

Those of you who know me well will know that I did indeed go away and find out as much about it as possible. I also didn’t accept that there was no treatment and no cure.

I soon discovered that Transverse Myelitis is a rare neurological condition that affects about three people in a million (I always knew that I was rare!). The myelin sheath that protects the spinal cord is attacked and damaged which then means that what is normally a six-lane super highway sending messages from the brain to the body becomes a single track and sometimes gets blocked completely.

I also discovered three important facts:

  1. Very little is known about the condition even by medical professionals and a GP is only likely to come across a case once in their career – and that is why I was lucky with the third GP that I saw.
  2. I had to wait for my body to repair the damage itself.
  3. One third of people diagnosed with TM make a good recovery, one third have only a fair recovery (i.e. moderate degree of permanent disability), and one third show no recovery.

You can guess which third I decided that I belonged to and having made that decision I could then develop my own treatment plan by learning how I could help my body to heal.

As part of my support and recovery I am so grateful that I discovered the Transverse Myelitis Society. The society is a small charity run by volunteers most of whom have TM themselves. I registered on their website and within forty-eight hours I received a call from one of the volunteers offering support.

I am so grateful to know that they are there offering help and advice which I would not have discovered through the NHS. They are a fantastic organisation providing an on-line community via Facebook, local support groups and gatherings around the country and even paying for physiotherapy for those who have been recently diagnosed.

I hope you can see why I am donating all the proceeds from our Breath of Fresh Air® on the 6th June to the Transverse Myelitis Society (www.myelitis.org.uk). I want to thank them for the support that I have received, to help others with the same condition and to raise awareness so that more people know how to treat the symptoms of TM and more research can be done into this and other neurological conditions.

Why do I feel lucky?

There are several reasons why I consider myself lucky and here are just a few of them:

  • I saw a GP who had seen a case of TM previously. Some people with TM wait years for before they are diagnosed.
  • I discovered the Transverse Myelitis Society and contacted them.
  • All my personal development, and especially my NLP training, has enabled me to remain positive, resourceful and determined.
  • I was relatively fit prior to this illness and I believe this has helped me to recover.
  • Many people with TM become paralysed often within twenty-four hours and I was always able to walk, albeit with difficulty.
  • I believe that the destruction in my body stopped in October last year and since then I have been gradually recovering. I have recovered enough to be facilitating Breath of Fresh Air workshops!

What can you do?

Come and join me for our Breath of Fresh Air on the 6th June 2014 – Easy Steps for Handling Difficult People and support a good cause at the same time as developing yourself. Visit www.bofa-june2014.eventbrite.co.uk to book.

If you are not able to join me on the 6th June and would like to donate to this good cause, you can donate via www.justgiving.com/BreathofFreshAir-TMS

Please spread the word on Twitter using the hashtag #bofatms, on Facebook by visiting our event page, by sharing this blog or simply by telling others.

And finally, make the most of every moment as you never know what is around the bend in your journey through life.

Thank you

 

Jacqueline

  1. Fiona Shaw 18 May 2014 | reply

    Great blogg very good explanation of the onset of TM. Your positivity is what I like to read about. Keep going and keep recovering

  2. Jacqueline Harris 19 May 2014 | reply

    Thank you Fiona

  3. Richard J. Francis 23 May 2014 | reply

    There is so much we know and is done about various cancers and other ‘mainstream’ illnesses. Whilst of course that’s important – it’s tough on ‘minority’ conditions. The people who have to provide support, beg & borrow resources to not only treat such conditions – but provide help for others – are of real value. The human body is a very complex bit of machinery – and it’s often scary to discover anything that is a rare fault with it. Nice gesture supporting the society next month – I will do what I can to be on the walk..

  4. Kate Burton 26 May 2014 | reply

    Thank you for sharing your story and demonstrating what a personal breath of fresh air you bring to everything you do and say, Jacqueline. So sorry I can’t join you on 6th June and shall be thinking of you having transformative conversations in a beautiful place.

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