Finding The Funny Side....

First things first….

This post is to raise awareness of the condition only. In today’s world it feels like everyone and everything needs to be represented. I don’t.

Personally, all I ask is that if we meet and my head is at an odd angle, you know why and carry on with a nice conversation.

Shit happens. I just accept it and keep moving forward.

Now that is out of the way….

I have had such amazing response to my post where I shared my Cervical Dystonia issue. Thank you!

I thought I would share a little more detail about the condition but also share a humorous story to show that I can also laugh about it.

How It Began

It wasn’t long after I had started my own business that the symptoms had started. I had just been through the most highly stressful period of my life. I now had a business that was starting to grow.

I realised that I was glued to my desk for 12 to 15 hours a day and so I had bought the means to convert my desk into a standing desk. I was working at it one day and I started to notice that my head would subtly drift to the left while I was working.

I went to the doctors and explained and he said “Cervical Dystonia. Very rare. Incurable. I will refer you to a neurologist with the view to get you started on Botox”.

Hmm.

What is Cervical Dystonia?

In simple terms, part of the brain that sends signals to the neck isn’t functioning correctly and creates an imbalance. They don’t know why it happens. Current thinking it that it could be caused by:

• A blow to the head
• A virus
• Stress (most probable cause for me)

It feels like there is a constant pulling in my neck and my head drifts to one side. The body subconsciously tries to compensate and therefore creates tension. This makes me prone to lower back pain and sciatica.

People sometimes worry when you refer to something as being neurological. Whilst the continuous tension can create aching and brain fog from time to time when symptoms are bad, it does not affect my ability to get my job done.

Getting a haircut can be interesting though! I even have a strategy for that too!

Sometimes typing can be challenging when things are twisting but I just have to prioritise clients over other things like writing the book.

Treatment

Now, I am not one for taking medication of any form unless I absolutely have to. I was also uneasy at the speed of the diagnosis. I ignored it for a few years and just lived with it until it reached a point where a friend of ours who is a doctor spoke to me and said it was probably time to explore the Botox.

Still I tried to resist it and I opted to do things such as physio to overcome it. It didn’t work.

Although Cervical Dystonia is incurable, it can be treated with Botox to block the signals and reduce the pulling. Some take other medications but at present, these are not right for the symptoms I have.

The final step would be to have Deep Brain Stimulation. This is where they insert fine wires into the brain, attach them to a battery pack and this sends a very small electrical pulse to the part of the brain that needs it. Surgery is not by any means a guaranteed fix but it is something I am giving consideration to.

With regards to the Botox injections, they block signals to the muscles that are pulling and this provides some relief. As the Botox wears off, the twisting returns and once again I become more susceptible to lower back pain.

The Funny Incident

So. I sat in the medical room waiting for my injections. I warned the neurologist that I wasn’t great with needles and had a tendency to faint.

“You will be fine” he said. Hmmm.

He did the injections and I wasn’t quite prepared for how painful they are. The one’s in the neck are fine but the one’s in the bony bit behind your ear are something else. It can feel like you are being lifted off the chair by a needle.

All good so far.

I left the room, went to the reception desk to arrange the next session. I walked down the corridor to the lift and the tell tale signs of fainting began. The cold sweat, the narrowing of my vision, the muffling of my hearing, the light headedness. I became non-responsiveness to Jill’s questions. I was going to fight it and keep walking. I made it to the lift and then… I hit the floor.

I hung onto consciousness and doctors emerged from the lift and came to my aid. Jill ran back to reception and someone came with a wheelchair. I was taken back to neurology. I was given a cup of tea and biscuits and had my vitals checked.

The embarrassment of being wheeled through the department was mortifying. In this hospital, the neurology department was joined with cardiology and the waiting room was busy! Not what I wanted ill people to see!

I recovered, went home and we laughed about my misfortune.

3 months later I was back for my next set. I mentioned to the neurologist that I wasn’t good with needles.

He chuckled and said “ahh you won’t be like one patient I had. He made it all the way to the lift before he passed out”…. Still laughing.

“yeah….. that was me” I said. He stopped laughing. I let there be an awkward silence for a moment and then started laughing. I think he was quite relieved.

The So What

Despite this set back, I have managed to grow a business that celebrates its 10th birthday in October 2022. A business that does not back down and compromises on its values. I have created jobs and opportunities that are hard to find in other companies. I have created an environment that pushes the team hard to develop themselves and grow. I haven’t got everything right but then again, who has?! It is a learning experience.

I haven’t let Cervical Dystonia ruin things. I have just adapted and overcome it wherever possible.

As it is something that I am super conscious of (which in turn makes it worse), I have simply decided to take its power away by being open about it.

Does it stop me being passionate about what I do and the industry I am in? No.

Does it stop me aiming for One Red Kite to be the very best in the industry at what we do? No

Do I need special dispensation or feel the need to be represented? No.

Am I going to let Cervical Dystonia define me? No

Lots of people are going through worse things than this right now. I consider myself lucky.

Thank you for reading and your understanding.

In my next newsletter, I offer a fresh perspective on viewing time. Please do subscribe to the newsletter to receive it.

Have a great week.

Kevin

I am the Founder and Managing Director of One Red Kite, a business support agency that our clients love to work with. We support our clients with Data Management, Analysis, Dashboarding & Reporting, Category Management, Bespoke Mystery Shopping and Recruitment. We proudly support our clients to deliver better.