Hi, I’m Mcget. A 23 year old guy and I’m Sick, the thing is : NOBODY CAN SEE IT
I’m not a sick-looking person, not laying in a bed all day, sitting in a wheelchair. But I’m on medication and treatments in the hospitals and that’s the side nobody sees.
Most people say : you are young and young people are pure energy and healthy.
When I tell them I have a rare disease they say : no you are just lazy.
Well Do I look sick?
Now there is a difficult thing. There are a lot off different “Invincible Diseases “
I’m only telling my view and I will give you some information about my health issue.
(If there is someone with similar complaints and diseases, please contact me! I would love to come in contact with people with the same/sort like diseases )
When I was 15 my body was all bruised. I got in the hospital and the amount of Thrombocytes where to low (Ref. normal is 250-300 mine was 7) Blood transfusions and treatment where not working,
The body was breaking itself down, the White blood cells where overactive and seeing the body own blood as bad. When I was 18 they had it “Under control” thanks to a lot of heavy medication.
They stored it under the name of “ALPS-Like disease”. ALPS is a disease that comes in many forms, for now there are 368 different Mutations. But ‘mine’ is not in the list.
Information About ALPS
( https://en.wikipedia.org/wiki/Autoimmune_lymphoproliferative_syndrome )
When I was 20 they found something else. The liver was breaking itself down. So same problem, different place. They called it “Autoimmune Hepatitis” And that was a problem. Because. I was 20 so I should use drugs and drink a lot of alcohol. So it was my own fault. That’s what a lot of people said.
But I never used drugs, I never got drunk. I know I’m boring. Sorry! But that is something nobody wants to see.
Information about Autoimmune Hepatitis
( https://rarediseases.info.nih.gov/diseases/5871/autoimmune-hepatitis )
But, what does it with me?
Before this all gone bad I was a guy full of energy, no I have to plan everything in advance.
When I do this, I can’t do this. I need to spread my energy. Need to see everything in advance for the next 2 or 3 days. I sleep a lot, have no energy left to do a lot extra stuff.
In 2 years I have gone from a 50 Hour work week, going out and sports
to : work 2 days a week (15 hours max) and sitting in treatment.
Still I have friends that don’t want to see I’m not be able to go out all night after a day in the hospital.
“Yeah but come on, it’s just for a couple of hours.”
I know, but when I go out for 3 hours… it takes my body 6 to recover (and I don’t drink alcohol..)
When your body is sick it is constantly working on 150% to get itself better. And that takes energy.
I have periods when it is calm.. But when it all goes bad I lose weight, A LOT OF WEIGHT. Almost 7KG a week. And I do not change the diet. That’s the amount your body need to recover itself.
When my body is really messed up I sleep like 18 hours straight. Get up, shower, eat, and go back to sleep. And that’s not because we are lazy.
Because. I really want to do my passion, my job and ride my motorcycle but I just simply can’t do that..
The 2 thing I hope this MyTake will bring is:
1 . People with the same problems, the feeling people don’t understand the struggle. Will share their story. And maybe contact me.
2. to show people that you can’t see everything in a persons life. You can’t see how sick somebody is. Till you talk about it. And that is a Taboo or something. Talking to a sick person. If you really interested ASK about it. Most of us will tell you as much as we can.