The story of Jessica
There is many simplicities in life in which we take for granted everyday, simplicities that happen to the body naturally that we never think of. Breathing, talking, walking, when those simplicities are taken away from us thats when we realise how good we have it and how much we should be appreciating every moment we are alive, I know I do.
My name is Jessica and I have Lambert-Eaton myasthenic syndrome, also known as LEMs.
LEMs is a rare autoimmune condition that occurs when the immune system attacks muscle tissue which can cause mobility issues and also in some cases fine motor skills. In the overall context, your muscles become weak, fatigued and unable to move unless with assistance. The condition has only been known in the medical field for approimatley 50 years and in Melbourne, Victoria Australia there has been approximatley 14 cases since 1975. I am one of the 14.
I was diagnosed with the condition when I was 17 years old in 2017, however I lived with the condition prior since December 2015. It’s hard to believe that I went from being a full time active and sporty person to now having to learn to live my life with a condition that has very limited knowledge. At first it started with an ache in my right hip flexor and then in my knees, I ignored it and passed it off as a sport injury and from this I sought to seeing a physiotherapist and ended up being immobiled for 6 weeks under the pretence that I had apparentky fractured my hip, making the muscle waste already occuring to make some deeper damage. After I was cleared I undertook hydrotherapy and pilates in order to build my muscle back up, but within those months I became worse. I started having falls from the weakness and could not get up without aid, I started developing a strange walking pattern, some pointing out that I looked like I had suffered a stroke. Everyday ordeals such as getting out of bed, chewing, dressing, washing, going to school started to get harder and harder as every day went by. I tried to not complain to my family about this as much as I could.
At the same time my mentality started hitting an all time low, I was diagnosed with depression and general anxiety. My anxiety is what kept me from not only going out to places with my family, friends and school, but it barricaded me in my own home and I refused to leave the house as much as I possibly could. Between my anxiety and the ongoing weakness that started to prevent me from moving my legs all together is what resulted me to being wheelchair bound which was something very hard for me to accept since I was so active and indepedent before. I started to push everyone away and barley smiled from that point.
In order for me to be able to get the answers I did in 2017 , I went through a nerve conduction test and multiple MRIs, it wasn’t until I started seeing the neurologist at my hospital now that I got answers, and after some further testings including multiple blood tests and another nerve condution tests, I was told these words:
‘Jessica you have Lambert-Eaton Syndrome’
Had no clue what it was and I spaced out for ten minutes after she told me but when I started crying it wasn’t sad tears at all, they were happy. It’s hard to explain how I felt in those three grueling years unless someone else was able to experience it, the way in which I always tried to explain is that I felt like I was trapped, I was trapped in this body that wasn’t working and it was fustrating me because I was so weak that I could barley do much on my own without assistance. In order for me to cross my legs on a chair I would have to literally grab my legs with my hands and move them because my legs couldn’t move on my own. Because I had no control when I went to sit down I would practically death drop onto that chair and couch and my head and neck would roll backwards because of how weak the muscles were. I couldn’t feed myself properly because my jaw muscles were affected and made me tried just by chewing and between that and the way my anxiety would force me to show itself I lost over 30kg in less then three months. I started to lose faith and started to not even see myself as a person anymore, that’s why I have literally no photos of me in 2016, I never looked like me.
I started treatment a week before my birthday in June 2017, and they told me I would be permantly on this medication that goes by the name 3/4 DAP. I wasnt sure how much it would allow me to get better but by the third day I was able to walk around usuing a four wheel walking frame and was able to do alot more on my own with supervision. Fast forward six months I was with a rehab physio and I was learning to move and do more with my body, like a young infant I was learning to walk all over again and it was something that I became impatient for. I had to put in alot of hard work, I would be up late to do my home exercises, I would wake up very early before school to do them and I would even do some while I was at school. I was at school on my birthday in a wheelchair and the best present I got that day was when my best friend walked into the classroom, I told her to stand at the classroom door and I got out of the chair and walked over to her and she was in tears. That was the best gift that not only I could recieve but I could give to her and others that have stuck by me and supported me through these tough timesÂ
The hardest part about the three years was schooling, my attendence was low, I made an effort to have all my work just above the passing average and I made it my mission that come November 2017 I was going to walk at my graduation without any frame support. And I did.
I would be lying if I said that it wasn’t hard, these three years were probably the hardest I as a teenager had to comprehend with and learn to take it as an adult. It was a bittersweet moment to be diagnosed but to be diagnosed with something permenent and rare. I cried more in those three years then I am sure I did as a baby, I had to put blood, sweat, tears, fustration and fatigue to be at the point I am today, 18 years old, accepted into University and walking. Unless I had my four wheel frame or my wheelchair which I only use for plasma infusuions once a month no one could tell that I have a rare disease unless I said so or they heard my story.Â
As Rocky Balboa once said “It’s not about how hard you hit, it’s about how hard you can get hit and keep moving forward, how much you can take and keep moving forwards. That’s how winning is done.” and he is right. I took alot of knocks in thise three years as much and I still kept going, I never knew three years ago I would be now at univeristy, I never knew I would be seeing a exercise physiologist instead of a rehab physiologist, I never knew three years ago that I would be able to help out others just because I was diagnosed with a chronic condition and had a trapped body I didn’t want. Does it suck to have this condition? it does, any person should never have to go through what I did. But it is what it is, I cannot change what my body now has to put up with, but I can change how I will allow this condition to affect my life.
LEMs does not control me, I control LEMs.Â
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