Bridget Jones – you have it easy!
Well my illness seems to be relatively stable at the moment as long as I’m really sensible and stay within my routine. I’ve been here too many times before and then gone back to square one so lets just see what happens. I really couldn’t take going through that again. I went to see my consultant who was pleased with my progress although he still says that when I’m passed out on the floor so I’m never quite sure whether to believe him. He agreed that I appear to be quite stable at the moment so no new medication (yay!) it’s been really nice having a break from the nasty side effects. Even my Wii fit has stopped insulting me:
I’ve finished my course of disco ball exposure – Less Staying Alive more staying upright. I went from 3 minutes and passing out to ten minutes and being able to walk around. I’m a bit concerned that I went through all that to just be better at looking at disco balls – clubbing anyone? So I’m using the same principle with daily things that effect me like patterns. So my days are spent doing physio, yoga and staring at gravel (jealous anyone?). I actually managed to watch the tennis final and I normally struggle with things like that on the TV so that’s progress. I watched the tennis in the local pub garden and managed to get the remote from the landlord – big mistake TOWIE anyone? 😉
I’ve been on a few internet dates. My God Bridget Jones thought she had it tough. Not only do I have to find a guy who wants to actually meet up – how do you put a positive spin on being ill for three years (yes I’ve had my three year anniversary – a tad depressing but let’s not dwell on that!), living with my mother, no job, no money etc etc I also have to actually deal with the obstacle of the date itself! I have to pray that I can park right outside the agreed meeting place. Then that there is no gravel in the car park and God forbid there is a patterned carpet in the pub. So once I have (hopefully) managed to sit down I’m flippin exhausted and about ready to go home! Saying that my dates have been really nice guys but just a bit not for me (I’m horrible aren’t I?). I’m not exactly a good catch at the moment I think I’m going to have to stop being so fussy?
The last guy I met was really nice but very quiet. I did feel like I was interviewing him, coming up with endless questions as I was so uncomfortable with the awkward silences. He also got my entire life story as I just couldn’t shut up it was pretty painful. I made the excuse that my Mum would have dinner ready (I sound about 13 years old I know!) so I could escape. He walked me to my car and then it got even more painful. I panicked as I couldn’t cope with an awkward cheek kiss or a conversation about whether we should meet up again so I said ‘it was lovely to meet you’ and practically ran to my car (on gravel so not easy but think of the physio benefit!). In all honestly he was probably equally relieved to get away from my questioning – I just needed to shine a light bulb into his face to make it more relaxing!
The texts from the first guy I met got a bit errrr over friendly shall we say so no second date there. Although it has been good to have a distraction from the constant effort of trying to get my life back and actually do something normal I think I will give dating a break for a while. It’s been (in hindsight) a giggle and good to get out and about but I really can’t face explaining my illness to another stranger, it’s hard. Village life it is for me for a while then. Although this looks like the village bus replacement service it’s actually the highlight of the year, the village carnival. Do you see why I need get out? 😉
Love the motivating Wii fit results! Keep looking at that gravel girl…
This post resonated with me a lot and made me laugh in our shared experiences!! I’ve just passed my 2 year anniversary with this crap, hit 30 and moved back in with my mother too. I completely feel your pain on the effort of dating and gravel- for me, I have to hope there’s no cobblestones or crazy paving- my god, that does me in! Anyway, sorry we’re in the same boat but looking forward to reading the rest of your posts… x
Hi Lou, lovely to hear from you. So sorry that you’re going through similar experiences to me but it’s so nice to hear that I’m alone in this frustrating illness. Cobblestones do it for me too, how are you with Laura Ashley type wallpaper? I think it should be banned in all houses! I hope that you are managing to get on top of things and that you have a really good specialist. Anything I can do to help you know where I am 😉
Hi Susan,
Great blog. You seem to do a hell of a lot of positive stuff with this illness thats for sure. One thing I have noticed since suffering with MAV is that I tend to focus on the negatives quite a bit more than the positives. Its a really hard cycle to break!
This crap hit me last year a couple of months after moving to Switzerland and at a point in life that was so exciting and had so much to look forward to. I am 28 now and have suffered with this now since March last year. I have managed to keep my job (although I have no idea how!) and am currently trialing propranolol. No luck yet but its early days still!
I am actually in Cornwall next week to see family and friends so I hope the weather is good in the south west, maybe you can do a sun dance for me 😉
After that I am heading up to liverpool to see a renowned neurologist called Dr Silver. I am really hoping he can put me on the path to getting better!
Anyway. I look forward to reading more of your blog posts and hope this current patch of stability lasts as long as possible. Good luck and well done! 🙂
Hi Rich, thanks so much for getting in touch!
I’m so sorry this has happened to you at such an exciting time in your life – it’s such an unfair illness I really sympathise. I think it’s really helped writing this blog as it makes me try and look back and summarise the last couple of weeks in a positive way. Somehow that makes me feel like actually things are not that bad. Maybe you should do a blog too? It’s clearly not all great, I do still spend a lot of time resting as it seems to be the only way I can manage it and I have days in bed if I overdo things.
I’m really impressed you’re still working that must be really hard? When I’m having a good patch like this I do feel like such a fraud. So far my good patches haven’t lasted too long so I haven’t had to worry about it much!I just hope I don’t get bad again as back in March I was in a bad way (see ‘Groundhog day’)it’s impossible to stay positive all the time!
Well I really hope you have a great time in Cornwall (of course I will do a little Sun dance for you!) I’m sure seeing family and friends will perk you up. I hope Dr Silver is of help to you – please let me know if he has any miricle cures!
You take care 🙂