The last three years had been devastating for me. Before those three years, despite the pain I was going through, I was this happy, hard-working individual. I went through tough times now and then but generally, I was happy. It brought me tears of joy when I inspired others. I was energized when I was around people. I remember just being able to drive or to scoot to the nearest grocery store about less than a mile away from my house to pick up a few things that I can make for dinner used to make my day ! Meeting an old co-worker for coffee even for just a few minutes or just seeing friends anywhere and have a little chat with them was magic! I brought home with it a big smile on my face that I carried for days. Also it made me feel great when I was able to do things that I want to do. I felt so proud of myself that besides having an illness that is so debilitating, I had the energy to do a few things I want to do. I always felt lucky. And there was gardening then, it was therapeutic.
I question myself now after about three years later why I haven't felt that way for a long while? I thought that I must have been more courageous if I had not lost the use of my trunk. During the first few months that this happened, I was oblivious. But when the situation became weirder as in needing to lie down during flights or laying down during car rides., I began to feel more gray. Especially when in November 2013 when an old symptom from 15 years ago came back, only it was more pronounced that it became even more difficult to be positive.
The pain in my buttocks that goes down my legs has always been there since 1998, but after a couple of lumbar injections many years ago, it was alleviated. But late last year, it came back and it was more magnified and widespread. It's attacking all of my lower extremity, including spasms and pain in my bladder, along the femoral triangle. The pain is excruciating. It's like melting my legs. It is difficult to stand up. I felt like there's no fluids running down my lower extremity. After a visit with the Gynecologist, he prescribed Premarin. I felt this problem a while back, sexual dysfunction. Now I need fluids in all the orifice of my body. My Ophthalmologist said there's a possibility that I could get blind. I have three different eye drops for my eyes and an ointment. I also have drops for my ears. Also, it's hard to sleep not only from positioning but from itchiness in different parts of my body. I have rashes everywhere especially in the back of my neck and extremities. The back of my head where I had a couple of surgeries also itches a lot. Grr..
It became more apparent that I'm now loosing the use of my legs. From being dropped off by my partner wherever we went to not wanting to go anywhere. I'm pretty sure he's disappointed. I felt stuck at home, in my bed, even avoiding to go to my doctors appointments. A couple of months ago, my bedroom was moved downstairs to make it more convenient for me. I was in it all day and not wanting to be anywhere but my bed because the degree of pain that I had to deal with when I stood up and so I avoided going places. There's not much physical activity I can do. There's not much you can do when you're in bed. It's depressing, I think. I feel rebellious at times. I don't know. It's another chapter in my life. Maybe one day I would be more accepting of my situation. Like when I had to stop working, it took me years to accept so maybe this will take years also.
Looking out from my bedroom window this morning, I was admiring the birds playing in my neighbor's roof. Maybe this is the beginning,lol! Starting to appreciate things that you see and do even if things don't go your way. I guess this is the way it has to be since we definitely don't have control over our fate, health wise especially.
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