Hey its me….Have you forgotten who I am?
Are you tired of waiting for the real me to return? I will be back, I’m just getting my body to remember who it is and who I need to become. For the past three years I have been suffering quietly with Chronic Fatigue
and more recently as a result of rubbing my eyes, Kerataconus. Why did this happen to me? I’ll never know. My mum thinks its to do with the processed foods which I ate far too often in my past. The countless doctors we have seen have not given me any specific answers to this question. It doesnt really matter why I got chronic fatigue 3 years ago but what does matter is you dont forget me while I recover.
Its certainly been a long road but it will end, I am sure of that. Not only am I recovering from an autoimmune disease but also Kerataconus
, which in a lot of ways is so much more difficult to live with, but it is what I deal with every day of my life, a life where I can barely get out of bed until midday, and then it takes my eyes another 2 hours to readjust to their day which is spent extremely sore and irritated.
Yes, I spend time on my computer to combat the boredom of each empty day, but no where near the amount of time I would be spending if I could hold down a full time job. Some weeks even getting to my 7 hour a week part time job is almost too much to bear. Yes, I know that some people think all I need to do is become more motivated, stop being lazy, sleep less, stop looking at the internet or work at it harder. The sceptics of this disease have never had their future compromised or their friends become scarce as social occasions become difficult to plan, let alone attend, nor have they been so unsure that cant even predict how they will feel tomorrow when they awake. I am, however making progress, some days are better than others and that is what you may see and not realise that the bad days also makes me feel helpless, angry, restless, unmotivated and miserable.
I will get better, and resume who I once was before, actually, even stronger and make my stamp on the world, I am still me, just in recovery, that’s all, please be patient while I go through this”
My son Matt’s childhood was that of an average Australian kid, playing sports, mucking about with friends, finished high school and was offered a place at The University of Canberra to complete a Bachelor degree in Sports Media After 1 semester he began experiencing constant fatigue which made studying as a full time student more difficult and Matt applied to return home to continue his course through La Trobe University in Melbourne. He is currently on intermission until he is ready to return in better health.
Through initial blood tests to conclude what was wrong we found out that Matt had previously contracted Glandular Fever
in year 12 and this subsequently developed into Chronic Fatigue
and unfortunately due to the continual rubbing of his tired eyes, he developed a vision impairment called Kerataconus
. Who would have known that rubbing your eyes would cause such damage to one’s cornea – are we not all invincible? Sadly not.
For those not familiar with Kerataconis, put simply, the cornea of Matt’s eyes have thinned resulting in the shape of his cornea becoming irregular hindering his vision. The distorted vision makes easy tasks such as watching TV, reading on a computer, driving and working almost impossible. In the past 12 months Matt has tried the gamut of contact lenses prescribed and custom made for this condition, hard lenses, hybrid lenses, piggy back lenses and the fourth option scleral lenses all to no avail, he just has been unable to tolerate the hardness of each lense on the cornea for more than a couple of hours max. To date specialists have not found a suitable solution to help with this condition.
As you can imagine all of this has been incredibly gutting for a young man to be faced with a life ahead of him of not seeing clearly and unable to pursue his dream of becoming a Sports Journalist compounded by the worry of how he was going to be able to support himself, particularly with us moving away. This condition does not progress to blindness however his limitations on what he can do is very difficult for someone who wants to study and live an independant life.
CFS is an illness not many people seem to be tolerant of including most general doctors. We even had a doctor look at Matt one day and outrageously claim “well you seem to look ok”. Because you cannot ‘see’ what is wrong, many people just dont seem to understand it.
When we first moved over to the west, our mission was to research more help. We found a Chiropractor in Williamstown
who treated him Chinese herbs and a new diet beginning with a detox to combat the fatigue. Matt was also on the waiting list to see a Chronic Fatigue Specialist at the CFS Discovery Centre, Donvale Melbourne
. Sadly there are at least 100 cases before him on that list and 9 months later we have not heard from them. I was told there are not enough doctors at this clinic to assist in the large numbers of patients needing help. This means that at least 100 Victorians and their families and probably a lot more are struggling with this condition on their own while they wait to be seen. If like Matt, they are unable to work many hours or support themselves and with this condition not recognised for disability support through Centrelink, I can only pray that they have financial assistance from family and friends to see them through while they are unable to work while they recover.
Recently we found another program Matt could begin and he has had two sessions so far with Toby Morrison at the CFS centre in Brighton Victoria.
Toby is a chronic fatigue survivor who’s passion is now to help other sufferers of this debilitating condition to overcome and enjoy life once more. I am hoping to compliment Toby’s ideas and philosophies and help with providing wholesome foods, organic where possible to assit in strenghtening Matt’s immune system. When we move down to our beach retreat, Matt will be living with us, until he is ready to go back to University next year. My plan is to grow vegetables we can cook with and visit farmers markets to get the best nutrients we can into his system. Bill (Matt’s dad) does a wonderful job now cooking nutritious meals for us all each week which is vital to Matt’s recovery.
We are all hoping that once Matt completes Toby’s program the fatigue will be manageable and I pray that the eye specialists of Melbourne will find a solution which to improve Matt’s quality of life. I have been invited by Toby to go to Matt’s next session to hear his philosophies and recovery plan first hand. Thanks Toby, I appreciate that, as Matt’s primary support, its been a long road…
To health and wellness; never take it for granted, keep your bodies nutritiously balanced as you never know when you could be struck down and to my son Matt, who bravely deals with these conditions every day of his life, I pray your pain will end soon and that the beginning of your new life is just around the corner…
In my eyes, Matt is already winning this battle;
“A winner is not someone who always finishes on top. A winner is someone who is knocked down but continues to get up and never gives up the fight”