Help Alysse receive treatment for Lymes Disease

Our sister Alysse who is 20 years old has been battling a severe chronic illness for the past 2 years called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) which causes debilitating fatigue, chronic pain, Postural Orthostatic Tachycardia Syndrome, as well as a wide range of other life altering symptoms. She’s been out of the house 4 times in the past 12 months, for short times, with extreme pain, dizziness and fatigue as the consequence. She can’t be with her family and most of her days are spent in a dark room. She’s has many months barely being able to move or speak.

Through testing Alysse has been confirmed to have markers identifying Epstein Barr Virus, Ross River Fever, Bartonella, Mold exposure and Lymes Disease which her doctors and specialists believe to be a contributing factor to her ME/CFS. Doctors at the Sanoviv clinic have also confirmed the presence of Lymes disease from her test results. We are fundraising to help our sister get to Sanovi Medical Institute to receive treatment for Lymes disease which is currently unavailable in Australia https://www.sanoviv.com/.

Alysse is too unwell to travel at the moment but we are aiming to get her here in 6-12mths time. It is a 14 day stay at the Sanoviv Medical Institute costing 25,900 USD, 1400 USD companion fee for accommodation plus flights, at present Alysse’s treatments are averaging $500 per week and our mum as a single parent has been covering all of these costs which has already amounted to around $40,000 over the past 2 years, which makes saving for this treatment overseas very difficult. Alysse appreciates any help big or small to support her recovery so she can return to living her full life.

If Alysse remains too unwell to travel in the next 12 months as hoped, the funds will be allocated towards her ongoing medication, supplements and treatments at home.

Alysse has recently shared her story on her Social Media which you can read below:

https://youtu.be/3mV4O3suy4A

I've been distant the past two years, due to something personal and life altering which has happened to me. I've been battling a chronic illness called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). From many, many tests and specialist so far, what I know is this has come from underlying factors such as genetics, which have made me more vulnerable, viruses and diseases including, Epstein Barr Virus, Borrelia/Lymes disease, Bartonella, Ross River Virus and exposure to mold. All of these parts of the puzzle have taken a massive toll on my body and they have caused a lot of health issues, leading to me now having severe ME/CFS.

Some of the issues I face daily are a non-functioning bowel, disoriented nervous system, Postural Othostastic Tachycardia Syndrom (POTs) dizziness, high heart rate, blood circulation issues, cognitive issues, memory loss, brain fog, severe fatigue, chronic joint pain, body temperature regulation problems, severe migraines and the list goes on. It's been a horror movie, comedy movie, drama movie all in one .. and one which hasn't ended, as it is still playing. I'm unfortunately super sick.

I took time away for myself to process all of this, as I never would have imagined this time in my life, so young, would look like this. It has not been easy in the slightest. But what has helped me is taking control of my health and doing all I can to support my body to try and keep symptoms down. I go through so much and do so much to put my health first. Which means every bit of small energy I have is directed towards that. And for so long it's been only that.

Being vulnerable about something like this is not easy and is very foreign to me. I find it hard to be an open book and talk about things I struggle with. And I'm sure I'm not alone in that. But time away from my old life has been what I needed. I hold myself together extremely well and I get told exactly that all the time. But just because someone's seems together doesn't mean they are not struggling. It’s totally okay to not be okay. And I know that first hand.

It's been 2 years of testing, blood work, referrals for deeper analysis and being picked and poked all over constantly. It's been months at a time of being in the worst state, to points where I can't move my body, can't lift myself up or shower, complete sensory overload and an immense amount of pain. Pain were you lose yourself and want to give up. And a place I'm scared to ever go again. Because when you in the thick of it you don't see the end and you want to take it all away. Mentally and physically. And I struggle with the toll it takes on myself and family.

Buts it's also been 2 years of discovery, so much change and movement towards helping my health. Its been both eye opening and degrading. Dehumanising and deeply impactful. It's been everything and more and I do hope to share more about my struggles and experiences/outcomes in the future.

I had a good run of a few weeks recently .. being at a good baseline. I tested my baseline, where I saw my friends, went to the beach, cooking and a few cafe visits which resulted in a set back. Which is totally okay and normal with this illness. It's hard for sure, but just like finding out about my illness, and coping with the idea that I'm really unwell, I'm now in it and dealing with how to manage it.

Being sick isn't a walk in the park. But I'm taking steps in the right direction. And I am okay. I thank those friends who know me, want to hear from me, for the understanding that my life has changed and now I can't always be there.

Being sick is as if you're grieving the loss of someone. That loss being my myself. My body can't do what it once could or what I thought made me who I was. I can't dance, can't paint, can't cook, can't run, can't read, can't study, can't workout. I didn't know what to do with myself. But I've adapted. And I'm doing everything to get my health back and will come out of this 10 times stronger and have a whole new perception and appreciation for my health and life. All I can say is the day I can do a burpee is gonna be a great day.

I struggle with seeing myself sick. And at some points when I look in the mirror I can't recognise myself and I look like I'm slowly fading away. And that's not comforting in any way. Being limited and vulnerable is a constant struggle and sometimes letting people help me makes me feel less, even though I know I can't do it all, and I need help.

Accepting help for me is a continuous journey. Letting people in, and letting people see me, when I'm not in great shape is hard for me to do. But it also means when I'm not doing amazing my health is my main priority. And usually I just can't be there and socialise, as my body cant manage it. And I'm using my body’s little capacity just getting through my day. And whatever's left is going to appointments. If I look like I'm dying usually it's exactly what I'm feeling on the inside and the best thing for that is to rest.

It's going to take a little bit to get back to a steady baseline. But when I get there I hope to try and let you in. But for now it's managing appointments, procedures and daily practices to help my body get back there. And also giving myself time to do small things which bring me joy. And that's what it will be like until I'm well.

One thing Ive learnt is we always want more or feel like we need more, but in the process often not taking in what's in front of us, in the present moment. The smallest things make everything okay in this mess for me. Once you have been through the worst, anything, even the smallest thing, is so much more. Every time I see the beach, at the end I look back and take it all in, as I dont know when the next time will be. It’s like that for everything now, that's more than my baseline's capabilities. It sounds deep but that's the reality of it all.

I get so much more now out of seeing people, when I'm in a state where I'm doing okay health wise, and that's when I come out. I'm still unwell in these times, I have more capacity but that doesn't happen a lot and those times are so precious to me.

Looks can be deceiving though. The outside doesn't always show the inside and that's always important to keep in mind.

I am a private person but I wanted the opportunity to show a more realistic insight into my life. I hate talking about something, I’ve always been a doer, I'd rather get to the end result rather than talk about it. But that could be life long. So for now I'm sharing the start. And one day hopefully share the end.

Be patient with me I am doing the best that I can. And I never mean to hurt others in the process. I have so much support and love which is everything I need and more.

I have many health professionals and people who understand this illness. I'm so open for things to help my health and its recovery. But please note, most of the time what ever you suggest has either been researched, done, doing or not not for me and my body. Of course I appreciate help and suggestions. However a lot of the time it can get overwhelming frustrating and unhelpful for me, and everyone around me. And means I constantly use my energy explaining either again I've researched it, done it, doing it, or how it's not for me. I know you mean no harm, and might know some amazing stuff. But unless you have studied every part of this illness and are a health professional of any sort for this illness I'd prefer not to hear it. This illness is not simple and not easy to treat and there is no cure, but many people recover. I understand people want to help. But my health is being looked after. Don't worry about it . There are many other ways of helping.

Everyone experiences hard things in life and every problem, no matter how big or small, is challenging and no less difficult than others. Don't be afraid to seek help. Everyone processes things in different ways and however you are dealing right now is your way and just the beginning.

Words and photos cant describe what this is like, nor do they show the worst of it all. Many of these photos are me actually in a good spot. But that shows the whole picture. And in every photo here I am sick. However the reality is Its definitely more bad then good but there are moments of good in this all and that's what I hold onto. And how I find the courage and faith to stay strong.

I've come across people and organisations which have supported me though these times. And will leave a list below of people who have made an impact on me.

Jay Shetty

Girl who fell from the sky Em Carey

Speack and share

The good human factory

The.better today

Dog.autonomic ( specialist in pots, CFS/ME, Fibro, HEDs, & LC)

Headspace

Your mental health is the most important thing, as it impacts everything you do. Seeking professional help is okay and from personal experience life changing