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I am really surprised that the operation and recovery went so smoothly. I honestly thought I would be out of action for some time. Instead I was ready to go again in four days.
There have been a few ups and downs. Having the lesion on my brain that made me instantly better was really frightening. I missed my many twitches. Before I got used to the new ‘me’, the improvements disappeared because the lesion healed. I felt sad. Now I have slowly progressed and it is easier to deal with but harder to see the improvements.
The improvements I feel are:
I can sit quieter
I can feed myself with ease
I can push myself with ease
I can pour a drink
Life is so different and although it’s exciting, it is also scary.
It has been hard to adjust to being ‘wired up’ – two weeks after my op I thought, ‘What have I done? I have foreign objects in my body!!’ – It took a good part of a year to be comfortable and confident with the wires and device and for my hair to grow back.
It’s hard not knowing what to expect and I am determined to appreciate what I’ve got and not look at what I might get, or what I haven’t got yet. It’s also hard because I do want to strive forward and try and do new things.
This past year I have really challenged my body to see how much more I can get it to do to the point of exhaustion. Physiotherapy has become an important part of my day, it takes sooo much energy, but it is rewarding and my brain is slowly learning. Learning not to twitch so much, learning to stand up straight and learning to put one foot in front of the other in a steady motion.
I have no regrets and if nothing changed from this point on I know that I am a lot better off.
My fight to get DBS into the Public hospital is important. It is important for me to see that everyone can have the opportunity to do this op, if it is a good option for them!
- Martha Siede