Today I was up in London to see my neurologist to get my six weekly injections. I was looking forward to speaking with him as this time round my botox had been 7 weeks apart. Normally this would have resulted in severe facial, neck and arm spasms but for a change I have been okay. It is only over the last few days that I have felt the familiar tugging sensation around my eyes, jaw and neck. Whilst I have had spasms in these areas it has been easy to cope with. My arm has been spasming/twitching more but still at what I consider an acceptable rate, so I was eager to discuss with him aiming for 7 weeks again. Now as luck would have it he’s not working that day in 7 weeks time, so my appointment is as usual in 6 weeks, but this something I would like to aim for.
I am not fond of needles at all. In fact watching the doctor draw the botox up each time is enough to make me want to run screaming from the room. Every 6 weeks I turn up at the hospital racked full of nerves, if the injections did not make such a big difference on my quality of life then I don’t think I’d go. I trust my neurologist completely however, and after two and a bit years of having him administer my injections I feel confident in his skill. You can imagine how sky high my nerves rocketed today when upon arrival I was informed that my neurologist was absent. The doctor filling in for him was perfectly pleasant, however having never met him before, I found it hard to sit still in the chair whilst he injected me.
Today was my first round of injections since developing Complex Regional Pain Syndrome. On my GP’s advice I tried covering the area that was going to be injected on my back with topical local anaesthetic. I find it hard just wearing clothing over my shoulder/arm at the moment so was dreading having a couple of needles being inserted. As I have mentioned before I have Ehlers Danlos Syndrome Type 3, this unfortunately means that local anaesthetic does not work for me. I had been hoping that as it was a topical one and not an injection that it would be slightly different and would work, however I discovered very quickly that this was not the case. I cannot describe what my arm has felt like over the last few hours, it has been a mix of a burning and pin and needles sensations. I am hoping that this will die down as the evening wears on.
Hopefully my neurologist will be at my next appointment and we can discuss our next steps.
I haven’t blogged in a while. When I am asked why my automatic answer is because I have had a lot on my plate with studying for my upcoming exams. However I have this nagging voice in the back of my head that’s pushing me to admit that there is more to it than exam stress. The combination of Dystonia and Complex Regional Pain Syndrome is hard to cope with. Emotionally getting my head around it has been hard. Whilst the CRPS is not as bad as when I had it in 2009, it is still able to cause enough pain to cause seizures.
I went out with a close friend to the cinema today to see The Duff ( a fantastic romantic comedy). It was the perfect medicine in more than one way. It had me laughing and finally relaxing in my own skin and switching off to the constant pain. The film enforced the message that you should accept, be happy and own yourself; that you should not change for anyone. This helped me to really wake up and realise that I had been thinking of myself as a condition not as a person and hiding away. We have no idea what way any of my conditions will go. I might deteriorate over the years, I may improve, or I continue to be on this rocking seesaw. Not knowing is ok, I have now accepted that. However I have to stop letting that hold me back from living life. For far too long now I have thought to myself I shall do that when I am a bit better. We have no idea if or when that will happen. That’s ok, I don’t mind, as long as I keep living. So it’s time to make a change and accept that I’m ill, but life goes on.
On a side note we have started planning our May tea party to raise money for The Dystonia Society. So keep a look out for updates!
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