So I am now a married man (or as Holly keeps claiming I am now her wife!).
I think that this entire experience has shown how much my tics have improved overall since the worst of this current bad patch! On the wedding day I was very twitchy, but nowhere near how I would have been a few months ago. I had the usual bucket load of Diazepam but until recently even through that I would have been far worse. I had to keep a periodical dose going through the wedding and reception to make sure I was keeping it in line. Being in front of everybody in the Register Office was one of the most difficult things I have done – there were around one hundred people present! I actually found that part more stressful than being wheeled around Bath to get to the place. I managed to stumble, stutter and tic my way through the legally binding words and vows though and in typical Holl style as the woman pronounced us married she fist bumped me and said “BOOM!”… best wife ever.
I was worried a little about photography (most of the phone pics people got are blurred because of the tics) but thankfully our main photographer was a mate of mine who usually does sports photography, so hopefully he was in there on the fast shutter speed!
The honeymoon was the same – I was able to do things that I couldn’t have dreamed of even a couple of months ago! I was able to eat in the hotel restaurant where there were other people – although admittedly in the morning they were nice enough to give us the closed part of the restaurant and advise us on the quietest times in the evenings. I had a few points where I needed extra meds – mostly the obvious ones like being out in public and being in other crowded spaces. But the cocktail of meds kept me stable enough to enjoy myself and we had some hilarious moments like misjudging hills (me self propelling with Holl pushing at the same time) and getting sent on wild goose chases up crazy hills only to have to come down them again to go back up another one!
It felt so nice! Even though by the standards of my last calm patch I was still pretty bad – the overall frequency of the tics is considerably lessened compared with a few months back. Both me and Holl have noted that even though the tics have lowered in frequency somewhat they level of violence in the movements doesn’t seem to have changed. I seem to be having less of the dystonic tics – although that could be accounted for by the Baclofen.
The wheelchair has helped in a lot of ways, the impact is lessened when I am trying to get around inside – I don’t have to walk everywhere on my knees for a start. It’s also giving me a few more of the unexpected freedoms back, like the ability to go into the kitchen to refill a drink bottle (being on my knees before meant that not only was it hard to reach I was constantly banging my head when I arched backwards). I am really embarrassed about it though. I got repeatedly told off my Holl for it during the honeymoon because I kept apologising when she had to push me (still only had the chair for a week or so, my arms are very weak and I tore muscles slightly). I’m trying to muster up the mental strength to go down into my home town at the moment – it was one thing on our honeymoon, I will never see those people again but it’s different here. In fact it probably isn’t difficult, I think that I’m making an anxious mountain out of a molehill. Just need to suck it up and go for it!
I also am having difficulty looking at the wedding pictures because I’m in a wheelchair. As weird as it sounds in my head I was standing through the whole thing – I’m finding it really hard to get used to at the moment. I’m sure it will pass, and I’m still hoping that this is a temporary, short term measure at the moment. Just have to wait for the main two tics stopping me walking to pass – the “axial drops” and the hyper-extension.
I have had a few very depressed despondent moments though – to give it some perspective some of my fav hobbies used to be cycling, skateboarding and walking. It’s likely that I won’t be doing the first two again unless there is some sort of dark magic that a doctor can work somewhere to repair my knees.
Risking dipping into depressing territory there though, so long story short… yay! Now all I have to do is wait until the biggie next month: brain surgery ahoy! I’m refusing to think about it at the moment so as a result won’t be writing anything about it, I’ve had several mild panic attacks and a few nightmares over it so far so I’m trying to keep it pushed to the back of my mind!
So I will leave you with a variation on the standard wedding pic… the bride kissing the Diazepam soaked groom 😛