A.S. Face 0774: Syd Chely
I’m Aymeric, Syd Chely is my musician name, I’m French and suffer from AS since 1994 (16 yo) It began with a herniated disk on the right side of my back with chronic complaints of the lumbar rachis, sciatica and radiculalgia. After a long time of suffer, I had sciaticas in both legs. I had 3 herniated disks in 2009. One on the left side, one on the right and another one in the sacrum. I couldn’t move my legs anymore, and was drugged with too much medicines. On April 2009, I’ve been operated, from these 3 herniated disks, because if not, I could loose my legs.I accepted, after signing a discharge for the surgeon, 60% that it could fail. I had nothing to loose, i just lose my legs…It couldn’t be any badder. The risk was that i had a degenerative narrowing of the lumber vertebral canal. The operation lasted 4h30 instead of 1 hour, I still felt the effects of the anaesthesia 2 weeks after.
I couldn’t move my feet in the 2 first days, so I told myself “Now, it’s done, man…” The kinesiologist make me stood the 3rd day, and after these worst days of my life, that I couldn’t wish to my worst enemy, i could feel the cold of the tiled floor on my toes… I told myself i was suffering for one thing : I could walk again. But I had a lot of complications after this. I was in a rehabilitation setting, in a hospital, I made all of my first movements here. I never made sports in my life because of my back ache all of my school years, so i had no muscles. The rythm was very speed, I was over drugged, and made sport all day long (in the morning i had swimming pool, balneotherapy and aqua gym movements, in the afternoon I had occupational therapy, sophrology, abdominal electrotherapy, and the kinesiologists were stretching my movement muscles, my bones, and then i could finish my day, eat, sleep. It was really hardcore. I spent 4 months in this hospital, as internal, and 6 month of external, where I had the same program,but I could sleep at home. I tried after this to motive myself to do sport everyday. I managed to walk, swimm, bicycling in room, and so on. I had still 30min of balneotherapy, and 2x30min physical and occupational therapy in the week. I had developped some anorexic symptoms all these years, because of French administration. I had no money at all, no job, no flat. No help, except from my parents. Thanks to God they were there. I had a lot of relational problems these days, and saw thanks to the hospital who were really my friends. I lost all of them. Anorexia made me stop sports. Too dangerous. Went to 65 kilos. For 1.81m. I’ve always been a musician, since i am 16, i made a lot of live stages and records. All these times, 2009 to 2011, i made NOTHING. Some songs here and there at my “home studio” but i coudn’t play guitar anymore, each note was a pain in my back. Especially the back pain. But I had no pain in my legs anymore. I suffered all the time from heavy and loud pains in the back, right and left, head, eyes… Felt like my skull was disintegrating in suffer. I tried to erase and reset my life. I went to see a lot of doctors, a lot of analysis, a lot of hospitals. Everybody was telling that they didn’t know what my disease was, except that it was AS, because of my molecule HLAB27, which was positive. A lot think that i have a loud fibromyalgia, and what they are all sure of, it is degenerative. I’m now in a wheel chair since last summer 2012. I wanted something which could fit with my pathologies, and it was the E-Motion system, electric wheels, a little touch on the handrims and i could do 3 meters…. It was perfect for my pains, and my pathology. It could slow down the process of the disease, because I could still be mobile and active. But the wheel chair was 12.000 euros, just the wheels 6.000, i had no money, i couldn’t pay, so all the past year i was just waiting for death in my manual wheelchair with solid rubber tyres. So I never got out. Social fundings for me just arrived, although i’m quite paralysed since last year. I will have an electric wheelchair, Wermeren Forest. This model is for paraplegics.
In July, I go to my second thalassotherapy, in Dax, south France,where treatments will be given to me for 3 weeks. It will be the first time since last July i see the sky. My life is hard and sad, here i all tried, Remicad, Embrel… Nothing worked. For the fibromyalgia symptom, the doctors just gave me AntidepressantS. I took 25 kilos in 2 years. And it’s not finished. For the moment, I’m in a constant crisis, before i had one big crisis two after a week apart. I have a lot of troubles in esophagus and stomach because of my use of tramadol since i am 16yo. There are a lots of aliments or drinks i can’t digest anymore. And a lot of pills and medications too. I feel like i’m aware but kept alive in this way by pills. Or drugs. Don’t know how to call them. My present situation, physical and in the present society is that i’m in an insecure situation, involving poverty, and really nothing positive, except my family. But the good times are ALWAYS covered by pains. The new symptoms are that my knees are tired of stand me up when i stand, cervicobrachial neuralgia, pain thoracic wall pains on each respiratory movement of the chest. I begin to loose by ankylosis my hand and feet fingers, sensibility on the feet is nope since last year. Big knifes stabbing all the time in my back, 7/7, 24/24… I only sleep thanks to the pills.I have an evolutive and degenerative ankilosis spondylarthrite, and fibromyalgic as well.
Got iron In the back, L3-L4-S1.I had everything with the possible medicine, doctors here in France, even in the big famous hospitals in Paris can do anything for me anymore.
I tried remicade, embrel, and the doctors didn’t want to go further.
I’m now in a wheelchair, and can’t do as much things as i want. And the doctors here don’t give any interest anymore.
So i don’t know if i have to stand up and rise with hope, or think about suicide.
All i know is that i suffer, and i’m really fed up.
And That is my story.
Syd Chely (Aymeric)