After another long break.

It’s been a long time since I added anything here, so here we go again.

The race with my buddy FSHD has turned into a toe to toe slugging match. He tells me what I cannot do anymore and sometimes I have to admit he is right, but poke him in the eye with a “Watch this though”. He has the upper hand in some ways, in that I cannot stop his slow gains, but we trade blows with smiles, at least sometimes with smiles sometimes with a lot of swearing, all from me.

Since the last time I wrote here, I have lost a lot of power, flexibility and some mobility. I have gained a lot of bad temperedness, if that is a word. I lose my head a lot with the frustrations caused by the lessening of my abilities. Luckily enough it is mostly with myself, but I have to be careful, because Dung, my wife, takes the anger sometimes. The same old story, “We hurt the ones we love the most”.

I have added a second banister to get up the stairs and a handrail by the bath, although that was a bit of a cock  up, but that is another story, but a quick one, so, I put it in vertically and horizontally would have been better, but it still works OK.

The walking has deteriorated so that it is no longer any fun to walk. I had a big complaint, from my buddy FSH, of foul play, when I was given some carbon fibre splints that fit inside my shoes. This made such a huge difference to my walking, it looked like I was going to start running and so FSH came out with cries of “Unfair, foul play, not allowed”. “Sod that” is my reply. These splints are something else. When I tried one at the factory, I felt as though I would be able to run in them, they gave me so much spring to my step. I had gotten carried away with myself, but they are great. I would not be doing too much walking without them, but I still cannot get a blue disabled badge, which gives my buddy a chuckle.

I find the mental struggle more difficult than the physical one, or perhaps it just seems that way to me. Both are there constantly, still no day off. I work quite hard to try to keep up my physical strength, but the levels of strength are constantly changing, so just when I think I am on terms with it, I have to give up something. I am no longer doing the aerobic exercises at the gym, well not too often. I found my legs were suffering with only 15 minutes on a machine. I have even given up the rowing, which was only 1K, which took me about 6 minutes, but I sometimes sneak a row in when I am feeling good. It makes me feel better, but I don't have to push it too much, or my legs suffer again, hence the 6 minutes. I have lost about a minute on the 1K over the last 2 years. I was doing 1.5K, but that went  out the window about 6 months ago.

I found I can build up my arms, so got onto free weights and about an hour of the weight machines in the gym, but now I am finding I get lots of aches in my arm  joints and some muscles, so I have had to tone that down a bit. This is when I lose my head. I think I am getting to a point where I am winning a battle and old FSH finds a way to muscle in on my gains. Good pun ay?

I'll post this now and try to get back shortly. As is my way, I often think about updating this blog and don't do it.

Stay strong.

2 and a half years later........

I have thought about posting on here a few times, but thinking doesn't get it done. Anyway, I am here and once again in Vietnam. I have been back to the UK for about 18 months, but between Vietnam visits I married my lovely Vietnamese wife, hence the return. The recession kicked in whilst I was away and so I could not get a decent job when I got back to the UK and the longer I was back, the fewer opportunities arose, also my walking and stature are becoming even more notably not normal. My buddy FSHD keeps getting his nose in the front of our race to stay in the lead. He has stopped my ability to take on some jobs. I filled a temporary post to build some PC's, but my idea of build wasn't the same as the good man who employed me and he is a good man. I thought it would be technical, but it was definitely manual. I was throwing PC's around, boxed and unboxed and by the end of every day, without exception, I was well and truely knackered. The job was only about 3 miles away, so initially I was going on my bike. Coming home was a bit of a struggle, but I always managed the small hill near the end and cruised the last mile with a smile, knowing I had climbed it again. The delivery got ramped up and so the numbers being hoyed around grew too and I had to start to use the car, but only for the last 2 weeks. This position showed me, for sure, that I can't do jobs that are too physical, so my job scope has been lessened a bit. I worked in an office doing data entry for a temporary post of 3 months, this was about 3 miles away too, so I hopped on the bike and it was great, the job was not so good, but some of the kids working there were good and the biking was brillliant. In 3 months I only used the car twice and this made me feel great. A couple of years ago, I could have done at least double the 3 miles each way, but now the hills become small mountains. I definitly couldn't even attempt Alp D'Huez nowadays, well perhaps not. I perhaps could do it in a day, but I doubt all the way. I definitely could and would enjoy coming down it though.

I did some trade plate driving too, delivering cars and vans all around the UK. This I really enjoyed, except for the company being the pits, Earlybird, trying to get money out of them was like the blood and stone thing. I wouldn't mind going back to this in the future, with some normal company, not some bloodsuckers. Bitter??? Me??? Never.
Any way the bottom line is that my scope of jobs is less now as my physical strength has diminished, also doing 5 days a week will be a strain, unless it is the data entry type, I would be working all week and trying to overcome the tiredness at the weekends and that is no way to live.
I will be looking for something part time or if full time, then not physically demanding,. If the not physically demanding option is taken, I will definitely have to have some exercise regime in place.
Lots of "Don't do too much" advice is given to us FSHers, but I don't completely agree with that. The muscles affected are different for each FSHer and unless you are educated in the body's muscles, it is difficult to know which ones are fading and which not, so I tend to blast them all. From this you get a feel for what to do and what not to do. Mind you it is sometimes difficult to seperate what you think you shouldn't do from what you don't want to do. It's all a game of finding out, sometimes a tiresome game. My approach, perhaps wrongly, is to do a lot if you can and take the consequences and I believe along this route, I get it more right than wrong, the downside being the wrong bits are not repairable, but I enjoy doing it and if I don't I feel less positive and lazy, generally not so pleased with life, sort of sitting back and letting it happen, rather than getting out there and making an arse of yourself, which is possibly not for the best, but certainly more f un.
I have come to believe that the cardio vascular exercises can really knacker you out, if you over do them. I like to push myself on these machines in the gym, but have come to realise, VERY SLOWLY, that these detract from strength permanently, if over done. I do the macho thing of going at it too much and often tell myself not to, but there must be some stupidity in me, as I still do over do it on occasion. I think some of it is to see if I still can do it, but the more often I do that, the fewer times I will be able to.

I was not looking forward to the winter. I was slipping and sliding and going very gingerly last year and I have lost some stability and balance since then, so when I couldn't get a good job and Dung, my wife, was getting less than minimum wage, I asked if she fancied going to Vietnam. She said yes to going for Tet, Vietnamese New Year, February 14th 2011 this time around, but I persuaded her, very easily, to go for longer and so here we are and I hear it is snowing big time in the UK, so I am happy, mostly. I like the winter, but not the short days and I love the snow, but they partially confine me to the house, or going door to door in the car and it is overall a depressing experience.
Since we have been here, the aches in the morning haven't disappeared, that may be due to the very thin mattress on very hard beds, but they disappear just as quickly as in the UK once I shift myself. The stiffness in the bones is not so often noticable. I seem to be moving easier here and feel generally more flexible, but I have noticed getting off the floor is more of an ordeal. It is something I don't do a lot in the UK, but here eating and visiting peoples houses involves a lot of sitting on the floor. The heat hasn't kicked in yet too, that knackers me, but again, if I use my head and keep out of it I won't be so knackered. Life is so easy, if you aren't so stupid, so why am I so stupid!!
On the whole, I believe I am physically happier in Vietnam, but I do love the UK. If we have the cash, then winter here and spring, summer in the UK has to be the best option, but so far we don't have that cash, but we will see, life rolls along wherever it wants to go and I am along for the ride, the more twists and turns the better, so long as they are not all for the worse.


My overall strength, compared to 2 years ago is definitely very reduced, although the percentage loss is probably decreasing at the same rate, nowadays a 1 percent loss is much more noticable than 2 years ago. Then, I wrote about my competetive golf days being over, well I was very wrong, but now I am not. I have played upto October this year, 2010, but without a buggy, I can't do a full round on a course with hills, even 18 holes on a flat course with my battery trolley is too much. I will still be able to go and play for fun, plodding around and waving people through as they catch me up, it may become a bit less enjoyable having to let people through, but if I research the clubs, I may be able to find one that has slack times that I can exploit. We will see. The diving is definitely out of the window. If I had a good buddy, who knows all about my condition and we were mates out of the water too, then we could go down, but with the best will in the world, people don't really understand the limitations FSHD imposes on me and so it would be dangerous for me to go diving, as much as I love it. I wish wish wish wish wish I had discovered it earlier, but I am happy for the times I have had since I was introduced to it and I have been very lucky with the places I have been able to dive in since that discovery.

The heat has kicked in here, so I will go for a nap and read this later and post again soon. I PROMISE.

...... 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.