Update on me/ back from travelling
 

Hiya

Well I'm back!!

It was a great trip... we went to Amsterdam... great place! really love it there... loads of canals and it's really beautiful also went to Ann Franks house (well looked at it, saw the queue and thought yeh right are we queuing!). I will definetly go back there again!

Then on to Berlin. Met my new step mother who is russian with one leg, and saw my dad (VERY bizzare!) he is now Islamic and was threatening to turn up in his head dress and white dasha (spelling) which is sort of like a white dress thing. Luckily he didn't! went all over Berlin and saw the Brandernberg gate etc, was great to be doing berlin with people who knew it! Lana lives there which helped! Fell headfirst off a bus and screwed up my shoulder really badly which didn't help! and broke my wheelchair (snapped the handles off it!). Went to the most amazing place for breakfast - in the middle of an opera house in East Berlin... it was unique!

Then on to Munich which was an utter hole.

Went to Salzburg which was amazing! I really really loved it! it was so beautiful. Then went to Vienna which was horrible, rainy etc. When it stopped raining you got the impression it might be a lovely place but.. I don't know! when its raining you just don't feel it really!

Was hoping to go onto Slovenia but accidently booked flights home from Slovakia! but couldn't manage the journey so flew home from Salzburg.. so Slovenia will have to be another time...

Sorry I haven't been around... but my RSD has kicked in so badly that I have just spent from Sunday in tears in bed. I have Becks (one of my regular carers) who just doesn't know what to do as she hasn't seen me this ill in months which really sucks. Also the spasms have dislocated my left shoulder and the alloydinia is really bad. My legs look like corpses they are so black and we have had to start with major desense again. The community physio came out to see me.. and as it's about 2 years since I was last seen she couldn't believe how much I had gone downhill. Last time I saw them I was similar to a paraplegic and could be put into a standing frame with help from 2 people whereas now they don't think I will even be able to use a tilt frame. I also now have a new wheelchair as my electric wheelchair exploded in the middle of a road when I was walking Booboo... It exploded with flames and sparks... and I nearly got runover... oh well! but new wheelchair is abit better as am actually in it today!! It's a manual one that tilts and reclines. My spine is alot alot worse and even being turned has me in tears but oh well. I suppose it's just part of life with RSD. It's just frustrating as it's obvious to everyone that this isn't really a flare but more of a deterioation and flare.. as in my spine was getting worse anyway but now it is pretty bad. We are going to try a spinal brace and see if that helps it at all because I have to be back to sitting up by the time I go back to uni. Basically my spine is twisting aggressively towards my left, my head is now pointed upwards and hard to the left. My pelvis and hips have twisted towards the left and my ribcage is about 20 degrees round to the left. It's frustrating me so much because it looks like I may have to give up driving as I can't see on my right side and we drive right hand drive cars. But oh well it will get sorted out eventually! it's just so frustrating. My eyes appear to be getting alot worse as well.. can spasticity effect the eyes? mine keep being pulled up... yep you guessed it.. to the left! what is it with my left side??? guess it just wants more attention or something!!! However I do feel really lucky that someone was kind enough to give me the new chair as it does mean I can be out of bed

Ok I realise this might sound abit miserable - but the trip was so awesome and I am SO glad I did it... what do you think of my new idea for next summer? (other than ness visiting me!) thinking of going round Australia! Also planning on going to South Africa at Easter fingers crossed!. I didn't realise how much I enjoy travelling.. Will add more but not feeling wonderfully positive today so it's probaly not my most positive post!!

Love ya all!!!

Rosie xxxxxxxxxxxxxxxxxxx

So so sorry to hear that things aren't going so well, but great to see you are home! I missed you muchly, you are so fun to have as a friend!

I hope and pray you will see an improvement soon. Tons of ((pain free hugs)) :hug::hug: being sent your way!

Hey Rosie,

I do not know how you do it. I'm facing a 300 mile round-trip ordeal next week and I dread the thought. I can't imagine doing what you accomplished.

I can't think of anything else to say except to repeat that I am in awe of your courage...Vic

rosie,

you've been missed!

glad the trip was such a success, but sorry to hear that u r not doing well now.

it's good to have u back!

liz

Dang RSD Monster!
 

I agree with everyone here that you are truely an inspiration! You have given me the courage to try an extended trip here in the states. I was wondering about how hard it is traveling in a wheelchair, like taking the tube. Is it possible for a person in a chair to ride the tube?

I watch the travel channel all the time, and noticed there is zero info on travels in a chair. I think someone needs to create a show just for those that dare to travel in a wheelchair. Just might be a project I attempt in the future.

The prayers for you are going to increase, and I am having more people add you to there daily prayers ;) Wish there was more that could be done, as it really gets me mad at what this monster is doing to you.

I love ya much, and hope you start feeelin better soon :hug:

So glad you did waht you wanted to do and had a great time. you can reat and heal now with wonderful memories.
welcome home. joan

Welcome back Rosie
 

You certainly get a ribbon for courage. I shy away from taking a road trip of just a few hours in fear of the backlash :yikes: pain that will follow, and here you are being a world traveler. Great for you!
:You-Rock:

I regret that you are in a flare now, but at least you enjoyed a wonderful trip. Take care of yourself and concentrate on getting better. You are in my prayers.

:welcome_sign: back.

Best regards,

:cool: EJ

Allen - I think that you should contact the travel channel and suggest that they do a program on handicap friendly destinations. What a cool idea!

:cool: EJ

Hiya,

Thanks everyone!! It was a great trip and it was brilliant to be able to just go away - I just think that level of travel was just abit too extreme for RSD! and even enthusiasm and me generally can't beat that level of pain or at least not for long enough! (I find I can push myself to keep going but suffer big time for it afterwards).

Vicc - I find car journeys really daunting.. more daunting than train journeys or even flying sometimes!!

Liz - great to be back - it was a great trip it's just... I think I over estimated how much I can palm off RSD.

Hey All. Great I inspired you!! where are you going? depending on where it is you can use the tube - I can't use it in London but I can in Berlin or Vienna. Bizzare hey! But go for it and have a try. I'd love to do something like the travel programmes for wheelchair users - it would be so interesting. Because they also don't focus on accessible venues, accessible hotels etc. It would be interesting to do something like that! if you do it can I join in! could be fun! Oh I also take the bus and wheelchair accessible taxis and the trains. I was lucky to have Bec with me because she can lift me as otherwise we wouldn't have managed in some places.. I know she's not supposed to pick me up but we didn't really have a choice as we couldn't fit the hoist in her back pack! lol!!! As long as you do the research travel isn't too bad with the wheelchair - oh and take someone that is strong with you!! love ya xxx

Hey Joan - I defiently have some great memories from it! we had a real blast... I remember particularly going to a very posh cake shop and eating this amazing cake in Salzburg right in the plaza with the Motzart statue - when everyone turned silent when they saw becs feeding me. We found it so funny that the pair of us started dribbling just to see what people would do.. it was great! It was a great great trip apart from the rain and RSD!!

Hey EJ - I so agree!! that would be great

I am really not good at the moment. I don't know how many of you have spinal RSD but do you find that it twists your spine out? I am currently really really suffering from it. I have had to be sedated for the last 2 nights because my fits have become very long and dramatic spasm/ fits lasting hours and are really really painful. We are finding I'm twisting more and more. We start with my spinal brace this week. I don't want to wear it but I know if I don't start then I won't be back to sitting by the time I go back to uni and I know I have to be able to sit upright or at least sit in my electric wheelchair before I go back to uni as otherwise I will have some major major problems! I can't go back and stay in bed all day - I have to be able to be upright for several hours a day, or at least sitting in my electric chair. My new manual is good and I can currently sit for about 20 minutes before it gets too much, and can do that about 3 times a day when forced.

Agh ! it's so frustrating... I also can't move at all and am scared about going back to uni like this. Oh well.

Love ya

Frogga xxxxxx