My body has never been perfect. I was born with the cord wrapped around my neck and I had to be resuscitated. When I was 5 years old I was struck down by a couple of severe viral infections with tempuratures of higher than 40 degrees celsius for several days. After this my immune system weakened, I became susceptible to illnesses and allergies. From the age of 8-16 I had 22 different life threatening allergy triggers. I had to carry an Epipen in case of anaphalaxis. This resulted in a few hospital stays for allergic reactions and mesenteric adenitis. This is me with the clown dotors during one of my paedatric admissions:
My reccurent sickness stopped me from continuing my passion for competitive swimming. Throughout high school I experienced joint pains, dislocations and depression. I'm the kid in the middle with the knee braces:
In 2009 I had swine flu. Between 2[phone redacted] I spent a lot of time camping with Army Cadets. This is me negotiating an obstacle during the Chief of Army Challenge in Queensland 2010.
After graduating school I was able to work, study and travel. In 2013, I volunteered teaching English in Vietnam for about 5 months and travelled solo through Vietnam and Cambodia. This is me on a boat travelling through the Mekong in Southern Vietnam.
In the years following Vietnam my symptoms gradually became worse. In 2015 I contracted EBV (aka glandular fever/mono), I felt like I was dying for weeks and afterwards the fatigue just didn't go away. I continued working and volunteering for organisations like Oxfam. This is me working as a Fundraising Promoter for World Vision Australia:
By the end of 2016, I was experiencing up to 50 symptoms every day and I became physically unable to work, volunteer or socialise. I lost over 15kgs in a couple months. I continued my university studies but my grades suffered. I saw many doctors who told me to 'exercise more' or 'try to reduce your stress with yoga' etc, none of that worked. I was desperate and it took many months and many tests to reach diagnoses but I never gave up. Tests included, bloods, urine, stool, MRI, x-rays, ultrasounds and more. This is me having the Tilt Table Test that diagnosed me with Dysautonomia:
I have been diagnosed with:
-Myalgic Encephalopathy: brain and spinal cord inflammation as a result of several severe infections that causes debilitating fatigue. It's basically like having a severe flu-like illness all the time. Watch this TED talk to learn more about M.E:
-Late Stage Neurological Lyme-like Disease: because of my low immunity I contracted borrelia, a bacteria that if left untreated, causes an illness similiar to Multiple Sclerosis that is very difficult to treat. I may have contracted this while camping in Queensland, but its difficult to know for sure. Watch this video to learn more about Lyme:
-Dysautonomia: (I have two types) 1. Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Hypotension, my Autonomic Nervous System is broken as a result of M.E. and Lyme. Watch this video to learn more about Dys, especially POTS:
-Fibromyalgia/Chronic Pain: I have pain all over my body that is worsening every day, in my joints, bones, nerves and muscles. I was originally diagnosed with Fibromyalgia but I am still being investigated for forms of Athritis like Ankylosing Spondylitis. I may also have hEDS (a genetic connective tissue disease).
-Irritable Bowel Syndrome (IBS): Several bouts of food poisoning while I was overseas caused my gut to enter a state of concussion. I have many severe intolerances and I suffered through months of malabsorbtion leading to severe vitamin deficiencies.
How I manage my chronic illnesses:
I take about 30 pills a day to manage my conditions. I also have liquid medications and as needed. Without them I would be bedridden. I am currently treating my M.E. and Lyme with a natural antibiotic. I have several specialists that perform consultations, tests and treatments that are very expensive. I use a walking stick or a walker to get around. I need help doing the smallest of tasks like showering, shopping or using stairs. My best friend works without pay as my full-time caregiver. I am not able to work and I am taking this semester off university to try and get my health back on track. This is me using my walking stick and compression socks to help me stand:
This is my walker that I take to university. I cannot carry a backpack as it leads to severe back, neck pain and migraines and I need to be able to sit down at any moment when I feel like I might pass out:
My treatments cost more than $600 a month. I need them to slow down and hopefully reverse the progression of my diseases. Some of my medications are not approved by medicare making them extra costly. Sometimes I need emergency medical care at hospital especially if my pain becomes unbearable, I contract a virus or my blood pressure drops too low. I am surviving on youth allowance of $500 a fortnight. $300 of that goes to rent and food, so I am left with $200 a fortnight for everything else. My parents also rely on welfare due to their own illnesses and workplace injuries. They are currently paying for most of my medical needs. Neither of us can afford to keep me healthy. I am applying for a disability support pension but the process is long and difficult. Lyme Disease is not recognised in Australia which complicates my situation even further. This is me recieving a saline infusion during a hospital stay for migraine, severe dehydration, low blood pressure and a bacterial infection:
One days worth of my pills:
One weeks worth of my pills:
My situation is urgent. Now that I have started treating Lyme, and killing the bacteria that is infecting my body I cannot stop. If I cease treatment prematurely the bacteria will come back stronger than ever! So I need these these funds desperately. Neurological Lyme and M.E. can be deadly if they remain untreated.
What I want to use the funds for:
-treatment: medications and things like saline infusions and Iberogast to manage my symptoms, as well as specialised treatments that kill bacteria.
-doctors: many of my doctors charge around $100 for an appointment, sometimes I cannot wait on the public waiting list for a cheaper option because my symptoms need urgent attention.
-mobility aids: I need a wheelchair! I already use a walking stick and walker to get around. My POTS leaves me unable to stand for more than a few minutes. If I had a wheelchair I would be able to get outdoors more often. This would be great for my mental health and wellbeing and make it easier for me to participate in longer outings with family and friends.
-Shower chair: I use a stool in the shower, but I need a proper chair to support my back because I have poor balance, dizziness and vertigo.
-Overseas: I am looking into treatment options in other countries like Hyperthermia in Malaysia as Lyme cannot be treated in Australia.
-Epsom Salts: I go through these like crazy! Epsom salts are an essential part of my treatment. I have a gene mutation that impairs my body's ability to detox. When I am killing bacteria I have to use Epsom Salts to detox so toxins released by dying bacteria don't cause further damage.
-Pain management: I need to see physios and exercise physios to manage pain and stop my muscles weakening due to bedrest. I take pain medications and use items like wheat bags, ice packs, braces, creams etc. I hope to try more methods like acupuncture and a TENS machine.
-Transport: I find it difficult to use public transport as I cannot be outside for too long especially when the whether is too hold or too cold. My Dysautonomia has disabled my body's ability to regulate tempurature. I need to take taxis when I am unable to drive and when I can drive parking is expensive.
Why donate to my wishing well?
My biggest wish is to be well enough to live my dreams. What are my dreams, you ask? Well, firstly I want to complete my Bachelor of International Development (with Honours, I hope) and my Diploma of Languages: Indonesian. I want to go back to study in 2018 and graduate by 2020. One of my goals is to travel to Indonesia. In January (2017) I had to turn down my dream internship in a LGBT Sexual Health Clinic in Jakarta because of my worsening condition. Ideally, I would like to conduct part of my honours research in Indonesia. After studying I want to work with LGBTQI* people and people with disabilities/ chronic illnesses in Australia and Indonesia. I hope to start my own NGO. Whatever I end up doing I know I want to make a difference in this world, but I can't do that without looking after myself first. So I really need your help! By helping me, you are enabling me to help many more people in the future. How great is that?! :)
For more information on Lyme Disease in Australia visit: http://www.lymedisease.org.au/
You can follow my health journey on my Instagram account: chronically_carmel
- Ali Nagel
- Susan Bruce
- Goran Krećinič
- Darren Mullighan
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