|<< previous article||next article >>|
by Blue B.
My story starts at the age of 18, and I am 25 now. The issues with my body started when I got my first bar job at 18, working with my brother, just a few odd night shifts doing table service.
I used to wear skate trainers as they were soft on the inside and helped me manage my work until they started to become uncomfortable, but just on my right foot. It felt like when you get a new pair of shoes that are a bit stiff and when they first bend around the toes. On my right foot, it bent in a different place and rubbed on the ‘knuckle’ of my big toe. It was irritating, to say the least, but only the start of my problems. At that point, I couldn’t get other shoes so had to suffer from the pain.
Then my calves started to burn whenever I went to bed. I couldn’t stretch my legs without an extreme burning sensation, so bad that it woke me in the middle of the night and my entire body was almost paralyzed for a few minutes. That seemed like hours, and the seconds passed excruciatingly slowly.
I mentioned the problems to my mum who works in a hospital as a typist. The department she works for wasn’t able to help me so she referred me to a neurologist, and then, my appointments started. I was sent for blood test after blood test. I had an EEG test in my legs, I had x-rays on my right foot, and I was put on a large number of different medications to try to help the pain. None of these things worked and none of these tests revealed anything other than I’m “fine” or “normal”.
When you’re in that much pain, the word “normal” is horrible to hear, because I’m not, and I want answers as soon as possible.
After three years of different medications, starting them and weaning off of them, more blood tests, and recommendations to take vitamins, my neurologist had finally done everything she could for me. There were no more tests to perform and no more medications to experiment with. I was eventually referred to see a rheumatologist, and within ten minutes of being in the room, I had a diagnosis.
I couldn’t believe it. I burst into tears. I was so shocked and happy. I finally had a name for it. I finally had something I could get information on and I finally felt valid.
I was also referred to a podiatrist who came to the conclusion I have low arches, which affects my calves, and he advised me to get shoes with a strap and a slight heel. I now mainly wear mary jane shoes with a slight heel or flat ballet pumps, generally, anything that is ‘open’ as I still can’t wear closed shoes/trainers as they affect my ‘toe knuckle’ too much.
I still bring this issue up when I see my GP and every time I get told it’s nothing. It is such a struggle having this condition when so little is known about it, it’s not well known and it’s so difficult to explain.
I am at a point in my life now where I am nowhere near as bad as I was. I still have my bad days, days where I cannot get out of my bed, days where I have to call in sick to work because I can’t move or the pain is making me physically sick, but I am happy in my personal life, which makes it a lot easier to deal with.
Stress is a big part of the pain for me and causes major flare-ups. I had a job a few years ago that caused me so much stress that I was in the worst pain I had ever had. I had to resort to using a walking stick because it was that painful. I had to get my partner to help me in and out of the bath, or walk me a few steps down the hall to the toilet, and who was basically at my beck and call because I was incapable of doing anything for myself.
I have suffered from depression since I was 15 and still do. This condition has put me at the lowest I have ever been, with the pain and my depression.
When I finally got my diagnosis I felt almost free.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
Do you have a story to tell? Share it with us!
Categorized in: Stories