...... and there's more.

A bit more on me and my buddy. Unusually I reread the post and it was all head stuff, so here is some other stuff.
Tiredness plays a big part in how my strength is. It seems when I get tired, due to lack of sleep, the strength does not return that is lost, so if I feel a bit weaker, then that is the way it is from then on, but I reckon if I exercise correctly I will get some or all of it back.
Being on the road, I have become lazy. I think all the walking will keep up my strength, but that is not the case. Walking only keeps some muscles going, but others need exercising to get the balance right, the stomach muscles seem to be the ones to concentrate on, it may be psychological, but either way I feel better when I give them only slight exercise. It is hard to get into an exercise regime when moving around so much. It takes me a day or 2 to realise I should be exercising, once I have pulled into a place and if I stay for longer than 3 days I usually get down to doing the small exercises I do. It is only 20 minutes palates, sometimes twice, but it makes a big difference. Why the hell I don't do it more is beyond me, it is something in my character. Getting out on the bike makes me feel good too, as does swimming, but I don't enjoy the swimming so much and it is not always possible. I do miss going on the bike.

My legs have gotten weaker since leaving, I can even see the physical difference. I am heading back to Vietnam today, so I plan to get some sort of regime going and see if I can build up some muscle tone. Even my arms, the muscles I was proudest of, are shrinking, but I think I can get them back, once I settle for a while. I'll get myself a bike and I'll be like Lance Armstrong before I know it.
The walking is decidedly slower and the stairs more difficult. I don't think much of what has been lost there will come back, but you never know.
Every movement is becoming more restricted, so some stretching is called for. I MUST, I MUST IMPROVE MY BUST, well, something like that. Discipline is required, but I have always prefered to be doing something, like a sport, than just exercising. Again it is in my character. I guess I have to work on this bloody character thing. It is annoying, after being so active to be slowly restricted and it becomes more difficult to turn that annoyance into positive energy, but this may just be the tiredness from too much travelling and not enough exercise. This is not just for fshers too, I think it is a general condition of travelling. You become tired and less inclined to exercise and the downward spiral starts. It is not so easily noticed when you are off travelling and having a ball, until you sit and think. Not my strong point. The sitting is OK, it's the thinking that is the problem.

Anyway, in summary. I am losing strength and flexibility and need to get my act together to get at least some of it back. This is where my nagging sister could come in handy. I wont say which one it is, but it's not Mick.
I'm off to Vietnam, life can't be that bad then.
See you all in the gym.

More thoughts about me and my buddy.

At last and FSHD update. I don't think too deeply about it too often, it's more surface thinking.
I have never felt that my constant mate, FSHD, had the upper hand, although of late I have felt him creeping up on the inside rail, but I know how to block that way passed. If he wants to get passed me he's going to have to take the long way around. One thing about FSHD being a good unrelenting friend, he doesn't give you chance to rest on your laurels, so sitting back and switching off. That can be a bit wearing and it would be nice to have a week of so off every now and then. It can throw some negativity your way, but little of that gets passed, only on tired, bad, armageddon days does that have any effect and even then it is not for long. I just draw on the strength I get from my faith in my family, friends and myself. Being alone on this trip has helped strengthen the resolve. I sometimes think it would be good to be with someone, especially since meeting a nice young lady in Vietnam, but I also feel having someone along might lower the resolve to block that way through on the inside rail. I know all the ways through cannot be blocked forever, but it is satisfying being in the lead and I'm bolloxed if I'm going to make it easy for my buddy to get passed. I feel my golfing and diving days are close to an end, although that too may just be FSHD showing his nose on the inside rail. Those days may be over as was, but I don't have to be fleeing around the golf course trying to keep up, I enjoy just being out there, so the competetive days may be over, but the days of basking in the fresh air, amongst the trees and birds, sweating or freezing my nuts off are here for a while yet. I can stand on a golf course, take a look around and feel how good it is to be alive. That feeling isn't only restricted to the golf course either.
SO, sorry FSHD, you are a good mate, but there's now way passed for a while yet, so come along and enjoy the ride old buddy.

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.

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.

Gil's trip with his buddy FSHD

FSHD has been around all my life. He started to have an effect on my life from about 12 years old and has been an influence ever since. I never knew he was influencing my life until I was about 47, then I was diagnosed as having FSHD, his full name fascio scapulo humeral dystorphy. Since I was diagnosed we have been on first name terms. I think for me it was a good thing I did not know of his presence, as in my case it may have held me back. On a scale of 10 I would say I am about a 3 or 4, but would have to ask the experts for sure and I may do that. They are the friendliest bunch of medical experts I know. I will take 3 or 4 and am happy with it. I would not change anything major in my life, it has been a good time and only keeps on being so.
Above is just an introduction for the none FSHers out there. I decided, for my own benefit, I'd keep a log of how I get along on this travel adventure and see how me and FSHD progress together. It may be of interest to other FSHers, or it may pee them off, but either way I am doing it.
A bit more information for the noners out there. It is a muscle condition that means a persons strength get less on a gradual scale. Different FSHers are affected completely differently. A fact I never realised until this year. Anyway, if you want more info, google it.

I must confess to being a little apprehensive about setting off. Would all the women leave me alone, would I get any peace. My family put me straight on that one, so I set off. The apprehension was about my ability to get up stairs carrying weight, no bannister, no go, but I have bought a collapsable walking stick and think I will be OK. Too bloody late now. I am here and if I did not go now, then I would not be able to make it on my own in about a years time. Last year would have been better. That Mr Hindsight is a clever git.