Sunday, 17 February 2008

So far no trip

India is not friendly to handicapped people, to travel around as I have been would not be possible in a wheelchair, I think it would have to be an investigated holiday in one or two places.
For me the biggest problems tend to come when I am on the move with my pack. The buses are difficult to get on with a backpack because the step on is to high, but I just heave myself up and the Indian people can be a bit patient, so I have had a boost from behind, unsolicited, but appreciated. A lot of the kids, teenager and a few years older are very helpful, in fact the people in general are helpful.
It is impossible to move around India without hitting a crowd at some transport terminal. That is the time I need to be patient, if possible, just let the crowd die down and then move on in a bit more room, but that is not always possible. I had my wallet pickpocketed in a crush getting off a train. It is not the done thing to let people get off first and then get on, so the pickpockets take advantage and besides being niaive and having the wallet in my front pocket, I was an easy target, as my concentration was on staying upright.
It is a lesson learned though. I set myself up with everything valuable packed away, out of reach and load my gear up as I always walk with it, rather than wait until I get off the train to do so.

As for myself and how I feel. I felt very strong after a couple of weeks walking around and being in the sun. I feel quite powerful actually, I know I am not, but it does no harm to feel good. After continued roaming around and sight seeing I become a bit weary. This is when I need to take a break and have a few days dossing, which I am getting good at.
I find though, after I have hit the weary point, when I rest up I feel I have lost a bit of my mobility or flexibility. I am almost certain that I cannot lift my legs as high as when I arrived in India.
What do you do? I can either not keep going and miss on a lot of beautiful places and experiences, or accept that it the loss may have occured anyway.
I go with the second option, I am having a good time and it if I don't do it , then it certainly wont happen in the future.
It is not always easy to accept the loss in movement, but that is just part of having fsh. I have to work on my mind as well as my physique. This trip is helping me accept the condition, something I was not doing well with at home. Now I know I am holding everyone up on the stairs to cross the bridge between platforms, but it does not get to me as it used to, now instead of feeling a bit useless I am chuffed with myself for getting to the top, not so chuffed when I go down to the platform and it is changed, but that is life.
I am learning to accept help more, when I need it and do it myself when I don't. My sister said I would have trouble accepting help, as I am too independant, but I am slowly getting there, perhaps very slowly, but now I have seen progress, perhaps it will advance faster. She was right though. It is not easy to give in and take the help, I feel I am losing something everytime I give in to help. It is a learning curve I suppose. Again this holiday is helping a great deal in the learning.
After I take a break for a few days I feel great. I get up earlier than at home and just chill, doing the odd thing, but I feel loads better than when at home. The warm weather must have a lot to do with that.
I have trogged up hill and down dale all day in some places and at the end of the day feel good and very impressed with myself. I do tend to stiffen up in the evening when I sit for my tea, or just on a bench to people watch, but that is gone by morning and back by evening, if I am on shankses pony all day.

I have hardly had a beer in the last month. It has too much of an affect on my walking if I have a few, the odd one is OK, but too many and I am wabbling all over the place. Now I will only have a few beers if I am out with someone I know, but it is not a big miss, travelling on my own.
I have had a couple of comments of "Are you sure you are British?" when I have refused a beer. That is a bad reputation we have.

Something else that has deteriorated since I have been away, is my balance. I have to steady myself from a wobble more often, but I am quite sure that started before I left home. Walking on sand accentuates it, but I will put up with that, being there compensates for it.

Some of the troubles such as the stiffness in an evening, I believe may be a general affect for all people, not just fshers, but it is not a big deal anyway. I had a niggle in my back, which I initially thought was linked to FSHD, but I think it was just one of those human things. It went after a couple of days. I started carrying my small pack on the front and think that may have caused it, but now I do it regularly I get no problem. The muscles must have built up. A nice thought.

I never thought I would hear myself say this, but the walking stick has been a godsend. I have not used it much, but when I do, it makes life easier by far.
I tend to get anxious the night before I am moving locations and have to go with my backpack, but so long as I have the stick handy, there is not much will stop me. In fact thinking about it, I never got anxious before my last change of location, so hopefully that feeling is gone. I hope so, as I would wake early and ponder the move, so getting more tired and that doesn't help.

I have only had one and a half trips in 4 weeks. I got one of those "Is he drunk" looks for the half a trip, but I was in Goa, so perhaps it was to be expected. It does hack me off when I see that look. Something I will have to work on, as people don't know I have FSH and I suppose the walk could be seen as a drunken stagger, but I have such a lovely smile, how could anyone think that?

All in all I am very pleased with how it is going. I was anxious before leaving and rightly so, this is a new experience, but now I know what I can and cannot do and go with that. I am coming to terms with the fact there are some things I cannot do, instead of losing my head with myself.
I am learning that when I am tired in the mornings and starting to feel weary, it is time for a few days easy life.
I was up the hills, where it is cooler and noticed the affect that had of making me not a supple, so the heat is a good thing for me.
One and a half trips after a month and a good few kilometers under my belt is great and that is how I feel. Great.
I hope it lasts. I'll let you know.

Saturday, 2 February 2008

How it went in Mumbai.

Wore my trippers, as my niece calls my splints, out here and on the evening when I went for a stroll around. I am getting looks from about everyone at the way I walk. It is making me smile though. I was a bit knackered when I got to the hotel. One of the lads carried my big rucksack to the annexe and up the 2 flights of stairs. I was pleased about that, I would have struggled. I would have got there, but not in a rush. There was no right hand bannister which is the side that suits me best.
I went out in shorts and sandals the next day. I don't think shorts, sandals, socks and trippers would have been a good fashion statement. Anyone who did not look at my sexy walk yesterday are looking today. It can't be my legs they are admiring.
Got back to the hotel and took my first trip of the holiday, I am sure it wont be the last. It was not a major one. I only had one hand in my pockets, so was able to stop the tumble and bounce back to my feet like a weeble, well get up as if I was drunk.
The plan is sandals during the day and trainers and trippers at night. So far so good. I have been out again all day and tonight and no stumble, in fact I stopped for a coffee and sprinted back afterwards. That was a Gil sprint by the way. I almost felt like I was walking normally, but the downward glances from the locals told me otherwise. I must have been on caffeine high.
Stairs are going to be the big bug bare in India. They are often tall steps and not too many handrails. I have brought a collapsable walking stick, which I think may be worth its weight in gold by the end of the holiday.
The sightseeing during the day does me in, so I hit the shower, out for a wander and a bit of snap and then home to bed. I have not been getting up too early either, so am feeling refreshed and ready to go again. It sounds like a good routine for the sight seeing days.
The pavements here are generally high and not many have intermediate step, so I have tended to walk along the road, which is normal here anyway and in Mumbai it avoids most of the people after your money in Colaba.
I can manage some of the steps to the pavement if I take a run at them and have learned which ones are too high, so I cannot make them.
Mumbai is not disable friendly on the whole, although around the Victoria Terminal train station there were a few ramps put onto the pavements, but not wide enough for a wheelchair. A wheelchair would be able to take the road most places, but accessing shops may be a problem. It would definitely have to have a servo-assisted horn, then you would be a local.
That's it for now. I'll be back with another feel of how India is for us wigglers.
Cheers.