Living With Neuropathy
Thursday, 5 July 2012
Hallo, my name is Rupert and I have been diagnosed with neuropathy!!
In brief neuropathy is a collection of disorders that occurs when nerves of the peripheral nervous system (the part of the nervous system outside of the brain and spinal cord) are damaged. This condition is generally referred to as peripheral neuropathy, and it is most commonly due to damage to nerve axons. Neuropathy usually causes pain and numbness in the hands and feet. It can be a result from traumatic injuries, infections, metabolic disorders, and exposure to toxins. One of the most common causes of neuropathy is diabetes.
I am 43 years old and lives a active on the go life style! I am the mentor to some professional athletes and I have been the assistance and developer of many athletes and their skills. I am a Afrikaans speaking South African, can speak 3 languages fluently, Afrikaans, English & Tswana. I am currently teaching myself French and hopefully soon I will be able to connect in French......
My story is not one that was perfectly constructed and written, it is something that comes from my heart and when I had time, have time, I wrote it and this was the result!
My blog is to tell you some life experiences I discovered in this time and my story hoping it would inspire you to live a full life....I have learnt more life lessons in the past six months than half my life.....
My career started is 1990 when I became a level one rugby coach......later went to Australia to become a better conditioning mentor and the personal trainer to athletes that wanted the 'special' one on one coaching attention....this made athletes feel coached on a personal level and it gave them the opportunity to discuss problems on a one to one basis and not mass participation! To date there is still a big gap in this facet of life as only some athletes want to make use of services such as mine whilst wanting to earn top salaries in the sport or discipline they compete in. It is very unfortunate but true.....athletes under-performing are the ones who don't have mentors like me giving them a reality check and feedback, mentors like me whom identify the 'parts' missing and assisting building a program to develop and assist them athletes to be on top again!
For more details regarding me being the mentor please wait for my new blog.....
Neuropathy is one word with many a different meanings and a lot of bla bla.....some serious and some that ruins ones life! This disorder came like the wind but the storm remained and its been nearly 5 months of .....I have read about this disease and I have talked many a talk to see if there is anything you can do to combat the problem....this is my experience and I emphasise that what you read in here is what I use to get through the problem and to improve the quality of life as I knew it before I was diagnosed!
My disorder started one Sunday afternoon on a mountain bike out ride! I got a flat on the rear tire and I had to fix it! Whilst fixing it I felt a pinch in my left lower back, not hurting not painful but a instant pinch that left me wondering what it could be. I finished the ride feeling well and went to bed with no problem...
Woke up Monday morning and when I got up from the bed I had needles and pins in my left foot! Thinking that I had maybe pinched a nerve I continued to get up, shower and went to work! That afternoon we went for another ride and I had no problems but for the needles and pins....
Woke up Tuesday morning and when I got up from the bed I had needle's and pins in both my feet with needle's and numbness up to my knees! I knew something was wrong although I could walk normally. It was summer by us and working in shorts did not make me realise that I could not differentiate between hot or cold! I went to work phoning my GP for a appointment! Went in at 14h00 and came out with, "maybe you have a pinched nerve, go for x-ray's". I went and the conclusion was a MRI scan but......I could not get an appointment within three weeks!
I had to go to Spain for a athlete that I was busy mentoring to participate in the Spanish Enduro series. I left for Spain with feet burning like coals on fire and swelling like balloons...this was no fun to travel with....When we got to Spain I had to put on longs and suddenly it became the most irritating feeling ever, the sensation that was caused between my numb legs and the pipes of the trousers....man I was doubting my bodies ability to heal itself! I finished ten days in Spain and returned back to South Africa 'on fire'!
I went for the scan and ended up with a neurologist! The scans results did not proof anything wrong with by back nor the disks or spine.....I was healthy referring to the neurologist. He did all the clinical tests and I was sent home without any medication or indication of what it possibly maybe! On return to my GP after 10 days the results came....nothing with your back but you have symptoms that relate to Gilliam Barre's sensory disorders....man was I confused and scared! However, the neurologist was not happy with what he then saw and knew about my clinical test results, dobbler test, reflex test, muscle test and mobility test! He ordered blood test to determine if the origin was not because of diabetes or any other autoimmune disorders! I went to the laboratories for two days, drinking lemon juice and doing the urine thing for ever....lol!
A full blood count was also taken and I felt drained after this ordeal and four punctures in my arm...I went home, I could not even tie the laces of my shoes and where ever I would be I had to take of my shoes and shocks just to compensate for the burning, needles and pins!
The GP phone three days after the initial test and I went to find out.... There was NOTHING evident in my tests but your neurologist diagnosed you with 'SENSORY NEUROPATHY', that was it!! No medication that cures the disorder and should you have pain, oh witch they believe the burning sensation and needles and pins where, I can take pain killers for it......your body will have to heal on its own, it can take days maybe months or it can stay with you for ever! I was devastated....my life had just become what I never could have wished for!!!!! I was speechless, doubting myself, doubting the 110kg I weigh, the 1.82m in length, the active non smoking non drinking me, the guy that could not rest!
What I realised is that my life had changed dramatically, for someone whom had sober ideas in life and enjoyed life to great extremes this was a blunder......
I had one doctor tell me that the one test they conducted on me showed that I am constantly in 'flight mode', this in plain language, always on the go with no rest and constant adrenaline flow!!
For a day or three after the results life was a wonder for me.....for the first time since I can remember I could not make out what to do, I had no plan and in my life not to have a plan is a plan to fail! I read articles, mailed people and specialists all over the world with all saying the same thing, " no medication". I had some inspiring people and individuals that mailed me, from the US came the best, "life go's on my friend with or without neuropathy". On the local scene my family and friends was the factor no one could ever replace.....I thank them from the bottom of my heart and in this period I also noticed those whom like to talk and those whom really try to make a difference.....
The biggest inspiration was my wife, having rheumatoid arthritis and living a full life I had forgotten where she got her inspiration from.....me and now I was the one that the clock had turned on! I had spoken to people whom had GB and they said, " wish I was you with neuropathy and not GB". My numbness had spread to my stomach, a 'belt' was running from my back to just about above my naval about 3cm wide and it completely felt like a piece of cement! This feeling came and went as it wanted, I tried to see if it was positional but it was not, when I drank a lot of water and my stomach was full this feeling was very apparent! It had no influence on my breathing.
If you never had neuropathy you will not be able to know what we are talking of, we do share some experiences with people who have other autoimmune disorders but not everyone. The burning sensation of the feet was now a common problem between me and my wife, our bed was made up specially for the feet and toes to be lightly covered! There is many things we shared regarding symptoms but very important we had each other to inspire. I tried a lot of medication, some even make you feel worse and others literally put you on a trip! I knew that if I allowed myself to become medicines best friend I would lose a personal battle!
Suddenly it struck me that I had to live a life and not wish for a life!
Days continued with burning feet and the never ending needles, the numb feeling on the front part of my legs was so bad that I could not even feel the breeze, my calves are fine and full of sense! I found myself wondering of in thoughts and wanting to blame someone like we always do...I am the guy with 'no hatches', if there was an excuse it had to be legitimate! Through the whole process I lost sleep due to the covering of my feet and legs by the sheets, this creates a very irritating feeling!
On the morning of 01 May I got to the office wondering about many things! I for the first time questioned my believe in God, I wondered why this came on m y path, I wondered if this is not a sign, I wondered if this was all worth the effort! For a brief moment I was taken away to the possible emotional trauma of someone whom considered suicide! For that "instant" I realised that I had spent 68 minutes thinking of suicide......it took me back to the call I received in Mauritius on February 11 when my sister in law's son committed suicide, for that moment I was told I got this unexplained feeling in my body, I had the same feeling now!! I had to force myself to get out of that phase....this was horrible!!
I left the office full of emotions and when this happens I knew it was the HOLY SPIRIT talking to me, I drove to the farm and sat listening to my thoughts! For the first time since my ordeal started I knew it was the HOLY SPIRIT talking to me! I had nothing to reveal and nothing to say, I had a emotional breakdown there and then! It was God talking to me, HE knew my thoughts, HE knew my mindset and HE knew me! What happened that day made me realise that life has choices and those choices remain with you until your last breath......I had to make a choice.......
I went back to the office and I knew I had to start living again.....feeling sorry was space occupied by bad thoughts.......I dedicated the next 5 days reading about people that lived a full life after being diagnosed with neuropathy! There was a lot of plans and recommendations but non of them was for me as it included painkillers, laser treatment(not available in SA), physio, acupuncture etc.....To much time on hand and staring changes the compositions of our thoughts and that is a very bad thing......
I knew that I had to build a plan for ME and on May 13 my plan was in place......
Because of us being very active there was not a lot I had to get in place, we had equipment, mtb, walking trails and ample riding space on the farm. I had to write MY program which was done two days before! From all the reading and comments I gathered I knew I had to write a program to rebuild my back! This because it was the pivot of any body, the fundamental part we neglect and forget! We never think of how 'it' functions and always take for granted that the 'back' will maintain itself! I knew that the problem was not identified in my back but I had to something because the origin of the problem can be there!
I had to compile something for body and mind!!
I wrote the program like the ones I write for the athletes affiliated to me and for the first time in my life I became my own athlete....Unfortunately I could not have a one on one with myself but I had a plan to do just that....it became part of my walking routine.....
My first session was May 13 at 17h55, it took me 72 minutes to complete. I lost 8kg in this time of 55 sessions, became more positive than ever and sometimes I still have to fend off the negatives but the difference is that I am better equipped.....Since, I have completed 55 sessions and I have a story to tell......
I am still haunted by feet that burn, needles that come and go but.........I have taught myself to live with 'it' by following a simple healthy program....mind distractions and all the things I took for granted when I was still able to do them!! My program does not include any special diets but it requires discipline, motivation and faith! I have learned to speak to God and live a life closer to what really matters......I have become a stronger person that realised that life can be taken from you in a instant and that life has more to it is we individually know it......
We can live a full life with the understanding that it could have been worse....
We can live a life and be sorry for being alive....
We can be like robots and believe nothing is possible .....
We can change our thoughts by accepting what we believed in is not right for us.....
We can alter our paths of live by accepting that we are wrong....
I can continue like this and as a life coach for athletes I can honestly say that we have to realise that life has a limited time and limits to it!!
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