Hello all - sharing some positive news on my Centre Parcs holidayā¦
So yesterday we went for a 2.5 hour Segway/Quad bike safari here at Sherwood Forest. I can say I survived but more to the point I actually enjoyed living a little again! Someone with a dodgy balance system riding a Segway?! Surely thats unheard of?!
I will admit I felt a little spaced out initally but once I was on the ride I felt better. At xmas (time of booking it) I was having a massive relapse could barely turn my head - I remember thinking thereās no way I will be well enough by July to so all those things!!! WRONG I have mostly cycled all over the forest whilst been here too! Done lots of activities and even had a alcohol free beer! Iām back to living life on the edge!
This is all thanks to Amitriptyline!! Its given me some life back for sure!
I am due Botox in 2 days and I have to say I can barely notice its worn away right now!
For all the people MAV tries to destroy - You will get better and you can absolutely live your life again!
A segway!?!?! I mean that has to be one for the records!
Not lyingā¦ I have goosebumps right now!
You deserve this, you are such a fighter and you are so strong!
I truly cannot tell you how inspiring you are and how incredibly happy I am for you
You took the chance, you fought the fight and now you are reaping much deserved rewards. So proud of you my friend! XOXOXOXOXO
Thank you Jo!! Your lovely post has made me smile so much!!! paintballing today was very intense but so fun too! got the war wounds to prove it! hope youāre doing well lovely?! xxx
ReneĆØ I canāt quite believe what I have been able to do on this holiday! Quad biking around hairpin bendsā¦ segwaying, paintballing! Lots of cycling with next to no issues! I canāt quite believe it! I am just so glad I havenāt spoiled it for everyone else and have had a great time!
What a massive turn around my life seems to have taken! Honestly couldnāt be happier! Overjoyed! And hopeful it will last
Thank you for your wonderfully inspiring words! Your such a special lady! You guys give me the courage to keep going and thats all I can do
Thanks James! Iām not sure wether I am brave or stupid!! Haha - seriously though so glad I have been so good on this holiday! Last thing I wanted to do was let everyone down so for that I am so pleased
As a side note: I can ride my bicylcle just fine without any problems. But when I get off the bike, the swaying is right back. And I can ice skate just fine as well. And when I leave the ice and walk on the rubber mats with my skates on, Iām perfectly fine. Just when I take off the skates, the swaying is back. Nobody has been able to explain that to meā¦
āHabituationā, that is the answer. Riding a bike/icing skating/horse riding is a learned activity and the longer the period you learnt it over and the longer youāve been doing it the less your brain is likely to forget it. Somehow it exists āoutsideā your brainās balancing ability. Walking doesnāt. Donāt ask me why, no idea. The medics have no idea either far as Iām aware as yet.
I am a motion sick individual. I only travel comfortably by courtesy of habituation. The less often I travel, the worse I become. My brain/body whichever even seems to register mileage. If through the dark winter months I donāt travel more than say 30 miles each way Spring comes, travel farther by car and Iām ill at about 34 miles out every time!
The āswayingā returns because there are obviously vestibular issues from your MAV which kick back in as soon as the āhabituatedā response stops. Helen
Sorry youāre feeling a little wobbly!
I was just saying to @Onandon03 Helen that I have been travelling in the car lots recently and it really knocks my balance when I am laying in bed. It feels asif I am about to get the spins but thankfully that havenāt actually manifested into rotary vertigo
I think it is very common with MAV me even using an elevator I walk asif I am drunk as soon as I step out. The pressure increases inside my head and I start to get migraine. Not sure I could Ice skate these days!
As for āhabituationā, well, I have been walking since I was about 1 year old, so that shouldnāt be a problem. But it is. I somehow belive that this loopback cycle of brain commanding legs and feet to move and getting the feedback of the feetās nerves about what they are feeling somehow is ābrokenā. When I walk with my skates on my feet from the ice to the locker room(yes, I play hockey as a goalkeeper), the physical feeling under my feet is very different compared to regular shoes on regular surface. Must have something to do with it.
I always feel like I was walking on a moving surface, for example walking in an airplane ailse while the ride is a tiny little bit bumpy. Or like after hours on a rocking boat being back on the ground. Or like being slightly drunk.
I donāt have any problems when Iām sitting sitting or laying, just standing and walking.
However, itās been more than 10 years now and I eventually got used to it. It had initially created big anxiety in me and it took many years to get rid of it. But as there were thousands of days when I didnāt die, I now assume I wonāt die today eitherā¦
I mean that has to be one for the records!
got the war wounds to prove it!
