I'm a creative, free-spirited 29 year old who loves nature, music, acting and being a little different!
For years I had dreams of running my own store, and in 2010 I made that dream a reality. Unfortunately, within a month of opening I was sick every single day, finding it almost impossible to get out of bed. I was suffering daily from joint & muscle pain, nausea and debilitating fatigue, and I had no idea what was going on with me. In July 2011 another dream came true...I got offered a part on a TV show. I had wanted to act my whole life, and even went to University for drama, so I took the part. After 6 months of shooting my body was so wrecked it took me over two months of bed rest to recover from the damage working full time had done to me, and many of the new symptoms never went away.
By March 2012 I finally got the answer, and my official diagnosis...I have a rare genetic disorder called Ehlers-Danlos Syndrome. EDS causes me to have faulty collagen, a protein found in most systems of our body. Because of this I end up with many issues including weak muscles, joints and tendons that dislocate and stretch out easily, gastrointestinal problems, severe fatigue, insomnia, as well as complications with my eyes, skin, heart, balance, memory and many other things. There is no cure for Ehlers-Danlos Syndrome. Treatment is supportive, meaning it just helps to increase my comfort level, but doesn't fix anything.
The past 10 months have been a roller-coaster ride of new symptoms. My mobility has taken a turn for the worst. Aside from the constant hip pain, I also have horribly weak ankles that twist and sprain constantly. I now wear ankle braces that prevent that, but they are hand-me-downs from a friend who also has EDS, and they were already pretty worn out when she gave them to me. At this point they are literally falling apart, so I need new ones, which is going to run me $200.
Walking is very hard. Although my legs work, I have a very hard time remaining upright for more than a couple minutes, due to severe fatigue and muscle weakness. Unfortunately so far there's no medication that can help me with this. It makes going out and doing regular things, like grocery shopping, very stressful, upsetting and on bad days, impossible. There are many things I just can't do anymore because it would require me to stand. I tried using a cane for extra stability, but it was causing damage to my shoulder and wrist so I had to give it up. One day, while going shopping with my hubby, I finally gave in and used one of the store's courtesy wheelchairs. I couldn't believe how helpful this was! I finally had a shopping trip where I wasn't panicked looking for a place to sit down, and I wasn't exhausted from just walking around a store for 15 minutes. Besides we were able to shop much faster with him pushing me in the chair, instead of me slowly limping around, and I had a lot less pain. Usually after a shopping trip I'm so exhausted I need to rest, or nap. When I use the chair I still have energy to do more later in the day. So I've come to accept I really need my own chair, one I can have handy anytime I need it, especially on days where my symptoms are really bad. I always felt that if I ended up using a wheelchair my freedom would be gone, but I'm realizing that the chair can give me back my mobility, which is my freedom!
Unfortunately with me being unable to work, and my amazing partner working to support both of us, I am unable to afford a wheelchair and new ankle braces. I looked into cheaper, used chairs, but to prevent damage to my lax joints and ligaments I need to get a specially made chair, and it has to be ultra lightweight. These chairs can cost anywhere from $1500 to $2500.
So that's why I'm asking you guys for help.
I need to get this chair so I can start feeling confident that no matter where I go, I won't have to fret, and no matter how bad my symptoms get, I will still be able to go out places and enjoy life!
UPDATE: Thanks to many generous donations, and a huge donation from the Kiwanis Club of Orleans (Ottawa) I reached my original goal of $1500!
I then realized that after GoFundMe and Paypal took their cut from donations, I didn't have enough for my chair.
I also found out the chair is going to cost me approx. $2000.
So I have raised my goal to $2300, as that will hopefully give me enough for my chair, and braces!