READER REPORT:

'I feel like a burden'

TONI BROOKS
Last updated 05:00 20/06/2014

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I have discovered that it is very hard to help people understand what it feels like to be in pain 24/7, yet still look half healthy.

I suffer with severe walking difficulties, but people still do not comprehend how bad my situation is. I have noticed a difference in the attitudes of people when you are using a walking stick, compared to when you are not.

I have found that even medical practitioners have no understanding of chronic pain, and the depression and grief that goes with it.

It's hard to accept that life as you knew it has now changed forever.

Specialists say that the disease I have does not cause any symptoms and that it must be in my head, they really have no idea.

I have suffered from a cruel invisible rare disease for the last year and half, called Tarlov cyst disease. The three cysts I have in my nerves in my sacrum became symptomatic in October 2012, when I was busy lifting heavy boxes to start a new adventure with my kids and partner on the Shore.

2013 was going to be our year, or so we thought.

I have discovered that there is no escape mentally or physically; this has been with me 24/7, for 18 very long months.

There is no miracle pain killer. I should know, I spent 8 months living on a cocktail of very strong drugs. I have no idea what the meds did to the inside of my body, but what they did to the outside of my body and my mind was very clear. 

I now struggle on without meds. Some days are so dark I really don't know how I survive them. There is no way I could even describe the pain that I am forever in.

I don't even know who I am anymore.

The simplest tasks for me are a challenge. I have to be careful what I do because the slightest thing can put me in bed for days. 

This disease has not only stolen my life but my kids' lives too. I do not know where I would be without the support my kids have given me unconditionally, especially Kimberley, sshe has done way more than any child should be expected to do for a parent. 

I feel like a burden actually, I have so many feelings because of this nightmare that is now my life.

Every day I wonder what will happen when the day comes that I simply can't leave my bed. What will we do, where will we go, who will look after us?

I am so desperate to be free of this disease.


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