I haven’t posted anything in almost a month as I have been bursting with such amazing news that I wanted to share around Christmas. As many of you know each year since I got ill in 2012 my goal has been to be able to walk by Christmas. It never mattered to me whether that was with the use of splints, walking sticks etc., as long as I was up and out of my wheelchair and back in control of my legs. Thanks to the private hospital I am under who are treating me for Chronic Neurological Lyme Disease I now know how much of my body is Lyme and how much is Dystonia. I am absolutely thrilled to say that my jaw, neck and my arm twitches/jerk spasms are all of me that is Dystonia; I could cry with happiness just writing that as I am extremely lucky that these three are controlled well by injections and medication.
I’m still having a lot of physiotherapy to help me learn to walk, and due to my EDS type 3 I have to wear a number of splints on my legs to help support my joints. I even have funky pink polka dot walking sticks. I’ve got a lot to learn still as due to my damaged ankle ligaments I fall over a lot, this recently resulted in a dislocated finger and broken tendon. However that is minor in comparison to the joy I feel. The private hospital I am under have decided to prescribe me another 3 months of medication, along with running several new tests, but that’s a separate blog post for the New Year.
My neurologist has been so supportive, when he first met me I was unable to walk and even attempting to stand was rather risky. It is great to be able to go for my injections and see how thrilled he is for me. He is pretty sure that the Chronic Lyme is what caused my Dystonia due to damage it can do to the brain. Although the spasms I am left with are painful, and my Oromandibular Dystonia can cause my jaw to dislocate, my symptoms are much more manageable now than what they were!
On that positive note I would like to wish you all a very Happy Christmas and a Fantastic New Year! I shall be back to my regular blogging self in the new year.