Another shot at life

Ever since I was a teenager, it's always been about surviving and getting through the day.
I should have asked for help a long time ago but as with many with uncommon and less visible conditions it was dismayed or shrugged off. I'm now at a point where there's no other option. I need help. As you can imagine it's been a rough journey, one I've been horrifyingly close to ending more than a couple of times, but I'm hanging in there and hoping for a change for the better. I'm going to cut right to the chase.

I have multiple life-altering chronic conditions.
I have Fibromyalgia, Ehlers-Danlos Syndrome (both rather severe), hypotonia, Hypoglycemia, Orthostatic Hypotension, PTSD, ADD and Asperger's syndrome. These come with a long list of comorbidities as well. On top of that I'm also transgender which have meant a whole additional exhausting story and medical care. Of course that's just long, strange words for most people but explaining them all would never fit on this page. If you'd rather have me personally explain them, feel free to message me and I'll be happy to!

I'm in constant incapacitating pain, joint instability and exhaustion which all affects my gross motor skills further. My muscles will spasm from the constant tension of having to work like an olympic athlete around the clock just to keep my joints in place. Since over 1-2 years back it's been taking an alarming turn for the worse. My tendons, especially around knees, wrists and shoulders, are incredibly damaged. I now have pretty chronic tendonitis that will set in after walking just about 10 meters (assisted with rollator). I've lost my ability to take care of myself and ADL*, move around freely in my own home, take care of the household or my dog. EDS is additionally a condition that is conditionally degenerative. This essentially means that it's going to get worse throughout the years but the amount depends on how well I protect and take care of and use my connective tissues and joints (alongside with the right physiotherapy). With  how bad it's already gotten I've reached a pretty critical stage.

What I want
I am so much more than these conditions, I have passions and desires. Aside from surviving, having an as decent as possible everyday life/managing ADL*, I truly yearn to work with these passions of mine. In short, they're art and dog training. These two subjects have been my reason to live for as long as I can remember, all the way back to kindergarten. They also seem to work very therapeutically for me. I love getting to work with my hands on any type of creative project, although specializing in drawing. And in the same way, I'm the happiest when I get to work with dogs. I'll happily spend my weekends in the woods or at the working dog club with my own four-legged best friend. Aside from training for sports he's raised and trained by me as a personal service dog. I also want to use these passions to give back to society, I hope I'm able to get to that point.

What can help me
Aside from the things I already struggle with on a daily basis in an attempt to better my condition like occupational/physical therapy and medications, something that would give me a part of my life back would be an electrical wheelchair. It would mean I'd be able to move around my tiny apartment without hurting myself (currently done with a heavy manual hospital wheelchair), take care of myself and even things like walking the dog, shopping groceries and getting my medc when I need them (been without them more times than i can count). It would also mean I don't have to miss as many hospital or rehab visits. Beyond that, if I were to dream, it could mean I'd be able to train dogs, meet with friends/family and be part of society again. After around 7 years of fighting with the medical system I simply have to accept I'll have to make it happen myself. However, as I survive on a disability income (around 1000$ a month) I won't be able to do it alone. What I'm doing myself is saving whatever i possibly can and applying for grants, although none have been accepted to date.

Anything is of help
If you feel like you can give up that coffee or have some extra to spare, absolutely anything is of help and so very appreciated. You are saving a life,quite literately. If you're struggling economically yourself but still wish to help we're very grateful for any sharing of the fundraiser as well. Thank you so much for taking your time reading this. If you donated, feel free to check back every now and then as any eventual progress will be updated here!

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Donations

  • Martin Johansson 
    • kr500 
    • 9 mos
  • Julklapp Offline 
    • kr1,600 (Offline)
    • 10 mos
  • Anonymous 
    • kr700 
    • 11 mos
  • Anonymous 
    • kr1,000 
    • 12 mos
  • Jacob Michelsen 
    • kr500 
    • 13 mos
See all

Organizer

Noah Lundberg 
Organizer
Mjölby, E, Sweden
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