Oouchh .. Legs On Fire

Today had a mini adventure. After spending time with my friends for dinner at a dhaba yesterday, thought of doing something fun. So I decided to get some physio equipment. As mentioned before, this equipment was available at only one store near Marine Drive. 

So started with a train journey. Since I left at afternoon around 1:30-2, thought that it would be quite easy to travel. However getting tickets took me almost 20 mins. Now 20 mins is a very short time, but I had not anticipated the things that were in store ahead. So as usual the trains were bit crowded even in afternoon ! The train journey was about 45 mins. I got to sit for half n hour, so wasn't that sore. But when I got out of the train, I pulled my muscle and it started hurting while I was putting pressure on my right leg. Anyhow, after a short cab drive reached the place and got the things that I was looking for.

I got the following stuff -
- Thera putty (red colour - medium resistance)
- Set of 5 spring exerciser that can be used for finger exercises
- A massage ball , it is more like a pointed ball. Wonder who uses it for massages ! Its basically like a stress ball, but with loads of pointed thingies like a back of a porcupine.

Then I was off. I was really wound up, so thought I would catch an AC bus back home. Even if it took an additional half n hour than train journey. Before that, I was feeling weak and needed some coffee and sandwiches ! I just remembered that "Starbucks" had opened up some where close by near Fort area. So took a cab there. As luck would have it, there was a huge line even outside the Starbucks Cafe ! Well thats  a first. Why do people stand in such a huge line for a cuppa of coffee. I joined the crowd! and stood in line for 20 mins or so for a cup of latte & "Corn brioche with garlic corn" ! Then I took off for the bus depot.

The bus depot was at Colaba and passed through Cafe Mondegar, Leopold. I was really tempted to make a quick detour, but had coffee instead for my parched mouth ! The most boring part of the day was to stand/sit at the bus stop for 45 mins for the bus to show up. The bus journey took almost 1 1/2 hours, almost twice the time of train journey. But I felt pretty relaxed in there.

Trouble started when I reached home, as my legs were literally on fire. My legs are paining a lot. I don't have any meds to reduce the pain. Should have asked my doc for contingencies. Have been sitting at my desk ever since. Now I am feeling guilty, as I have been told not to tire myself. Will probably sleep through night and noon tomorrow. Although, must say that exercising your hands using "thera putty" is fun ! Worth the effort or not , only tomorrow will tell !

Ciao n Peace.

Clay Play

Since May my health was in a downward spiral. But I noticed that since last 1-2 months, there had been lot of muscle wasting around my hands, thighs,etc. As a result, I get muscle cramps/pulls easily. I tend to walk very fast, since I have been a habit of travelling to & fro from railway stations this past 1 1/2 years. So I often tend to pull a muscle (quadriceps) now and then when I go for evening walks. I have to really concentrate to walk slow. Also, have stopped listening to music while taking walks since I usually end up having this unconscious urge to again speed up while walking.

Well anyway what I am leading to is that I have to see my physio therapist again. I know, I mean I have been at home so why can't I exercise on my own right ? But I feel that the stretching exercises, light exercises , yoga that I am doing is not correct or something or not accomplishing the purpose. I end up feeling very stiff. So I might go for consultation. Only that my physio is out of the country. So might have to visit another one. Still not decided yet. More importantly I need some special exercises for grip / hand muscles. Since I almost drop things when I am holding with my fingers.

About hand / grip exercises, I remembered that about 15 years back when my muscle strength was at an all time low. My physio therapist had got a special clay used for grip exercises from US. It came in different colours , with each colour referring to a level of resistance. I just googled and found that it is indeed "thera putty" and might be available somewhere here in Mumbai. Will definitely try to get it this next week.

The one shop/facility I found is near Marine Drive. Marine Drive brings back lots of fond memories. Whenever we would go up to Marine Drive, we had to go to Colaba. Colaba is this awesome place, where there are many cafes where you can just relax and spend your time chilling out with your friends and drink beer, lots of it ! There is this Cafe Mondegar which has a jukebox and there is another charming cafe, Cafe Leopold (also in news coz of 26/11 terrorist attack). Further down the road, there is Gateway of India and the famous Bade Miya's & Baghdadi, both famous for awesome food - tandoori chicken, biryani ;) get it. Although I won't be doing all that stuff any time soon :)

Today was quite dull, nothing much to do in morning / afternoon. Mondays are usually better, since I have something new to watch on TV like Dexter, Homeland. So then in the evening I had gone for worship at this nearby Navratri celebration place where they have a wonderfully decorated Goddess Durga idol. Later did some guitar strumming. Well mostly exercises that help to loosen the fingers and some easy to pick tunes. Playing guitar has become much more difficult now ! Need to practise more often. Also watched a movie called "The Big Year" starring Jack Black, Owen Wilson & Steve Martin. I am a big Jack Black fan (since School of Rock ,Tenacious D,Be Kind Rewind, Kung Fu Panda). Nice movie on Birding (and I thought its called bird watching !), though rated poorly on imdb (6.1).

Ciao n Peace.

Life in a Metro - Mumbai Meri Jaan !

The hustle & bustle of life in a metro city like Mumbai is a far cry from the quiet, serene country side. Quite often people suffering from chronic ailments would prefer the quiet, serene surroundings of country life. Sometimes it just feels like running away from this maddening city life. This thought might have gone through every one's minds once in a while, chronic illness or not. But of course, the city life means access to top class medical facility & support for emergencies and a haven for career focused people. 

So here goes, some of my experiences and thoughts on living in Mumbai with chronic illness - autoimmune and another related to eyesight.

Travelling in Mumbai should be considered as a daily chore. It is an integral part and parcel of everyday life in Mumbai. Mumbai has got one of the best transport systems in  the country. It comprises of Railways (western, central, harbour lines), BEST bus service, rickshaws, taxis and coming up are the metro & mono rail services in next couple of years.

Travelling by Train : 
Picture this, if a train compartment can accomodate 60 people then here one compartment will contain 100 people. You have to count the people who have legs planted on the floor boards and rest of the body hanging outside ! So to get started you need to get your tickets, if you have a monthly pass then the time spent on long queues will be saved. Once you have your ticket / pass, get ready to walk stairs ! On an average you will have to climb about 30-50 stairs I guess. Then on an average you need to walk for at least next 10 mins through a slow moving crowd often being banged into by impatient folks. Finally you get to a railway platform, you need to get into a local train. For DM patients, this means stretch your legs and get ready to jump in to a moving train ! Well if not, like me get ready to stand for the rest of your train journey. So a train journey can be easily compared to a daily workout session at a gym for people with DM !

First thing You also need to learn while traveling is all the stations and your destination station appears on which side - left / right side. The new trains have now got a speaker system and a monitor that informs passengers about next station and sometimes even which side the next stations gonna be. Be ready to be shoved by the crowd ! Also thumb rule is to wear shoes, wear sandals/chappals at your own risk as some one might just step on you with spiked shoes ! Getting down from the train can be equally challenging task, as you have to possibly jump out of the train. As people will push you from behind and at the same time people getting into the train will push you in the opposite direction.

Anyways for my last job, I used to travel to Navi Mumbai from western suburbs so had to travel from western, central & harbour lines sometimes. That means, whatever I explained before has to be repeated 3 times ! On lucky days I used to go by a direct train to office in the mornings and got to sit, more importantly. One way journey takes about 1 hour 15 mins to my previous workplace.

Some incidents worth mentioning -
Once while getting down from the train, I kind of sat down at the door step as people were jostling to get in. One of my friends accompanying kind of freaked out since he didn't see me and thought I forgot to get down. Fortunately, I was able to leave in one piece but little roughed up. This happened when I was traveling after many years (after DM recovery) and had less experience traveling in crowded trains.
Once while getting down, the train was just slowing and some a$$*!*e pushed me from behind and I kind of jumped of a moving train. Luckily I had my cat instincts on and landed up on my two feet.

Both the incidents scared the hell out of me, but the fastest way to travel in Mumbai for long distances are trains so one has to live with it and get used to it. From all modes of transport, this one is the most challenging though.  

Travelling by Bus : 
In Mumbai, BEST bus service is present across on all main roads. If you thought the "RED DEVILS" refers to Manchested United, then think again !! Although the buses here are more like red beasts who will cut lanes at free will without being held by cops and freaking you out when driving. Along with trains, bus service is the life line of Mumbai. So when the last 20 auto rickshaws have refused for going to your destination, you can count on these red beasts (like in the beauty & the beast) to come rescue you.

I really appreciate the bus service in Mumbai. Come rain/nation wide strikes/ bandhs, they are always present on the road. Since, I have to wait endlessly during eveings/night time to catch a rickshaw, I usually prefer to go by bus. So then what's the downside ?

Well to get started, if there is a queue its not much of a problem. But people tend to just crowd on these bus stops in evening time. I usually get in, by the time all seats are full ! So have to stand for most of the journey. Most of the seats at the front are reserved for ladies/senior citizens/handicapped so rest of the few seats are on offer. I usually wear a messenger bag so thats my hands are free to hold on for dear life ! Since the bus drivers have a tendency to zip through the road. I usually get irritated by the bus conductors. Since some of them are cribbing with passengers all the time for change/to move,etc. But again can't blame them, as the bus are almost full during peak times. So usually have my ear plugs on to some music. Another problem, is that I don't see the bus number early due to eyestight. So often have to scamper to get in.

Auto Rickshws / Taxis : 
These are the best modes of transport for anyone. All the auto rickshaws/taxis are in a rush always. You don't mind it since everyone wants to reach home early ! Auto rickshw drivers tend to be smart a$$ most of the time. You have to ask atleast a couple of rickshaws till you get a ride. So evening time for me, it can be 10-20 rickshaws before some one agrees. But of late, a very cool thing of auto sharing has started, similar to a car pool. So atleast we get a ride early and at less cost.

Taxis are similar to autos, and are ready to come for long distances not for short. Since with the rising petrol prices, its not economical any more for them to go short distances. Also, air conditioned cab services are a big hit in Mumbai. Although pricey, its a life saver when you have to attend that "special" meeting at work or some place else.

Driving : 
This is my most favoured form of transport. One because I get to sit, two because I love driving. Challenges - well other than traffic that most cities are used to now, all of the above transports - bus,rickshaws mainly. They will drive you crazy as lane cutting is a comman practise here. In horrible traffic conditions, you often have to drive bumper to bumper against traffic coming from all sides at a junction to get through quickly. I drive a hatchback, which is very good choicefor Mumbai conditions.

Parking : 
Well like any other city, you need to be able to park in the shortest possible space. Also watch out for those tow trucks. I usually park very well, so this is not much a problem for me, but I am usually wary of those tow trucks now and then. Usually park illegally when I am getting those shawarmas from the deli in Bandra ! 

Weather : 
Mumbai weather is humid thats all I can say. We don't have much of winter. But its my favorite season, since on most winter days weather is pleasant not cold but not too hot. Summer is extremely difficult as energy levels tend to be at an all time low. Usually prefer to be in office during those summer months and travel mostly after its dark. So initially when I had the DM rash, it used to be very difficult to get out. Those were the school days, so mostly used to manage quite well. But now with the 2-3 hours traveling need to be much more careful. Rainy season is very messy. Rains can be unpredictable and often create a havoc for travellers. Most trains are late and get extremely crowded on harbour/central lines during rainy months.

Work : 
Work has been a mixed bag for me. During my initial days, I worked really hard for my internship. But was jolted back to earth when the failed me in the pre employment medical test. But since then, it has been pretty smooth sailing until this year when I had the relapse in May. Like in any other city, work here is not 9-6 anymore. To meet deadlines, you have to work past your shift timings. That means, often putting in 50-60 hour weeks. Last year and a half, I consistently put in 12 hours a day at work. Sometimes I feel that might have cranked up the DM inside me. But from now on, will definitely take care about it. Most office (those that don't have pre employment medical tests,etc) would often understand "invisible illness" situation if you explain them in a proper way. That means keeping a watch out about current circumstances and take a calculated guess who to explain it to. But at the end of the day, if you are leading a team or have major chunk of responsibilities for project deadlines then no one really cares about your illness and wants the work done by the end of the day. Often explaining your situation to collegaues will defintely help, as they will try their best to help you out. But while explaining it to bosses there is a fine line that you have to decide for yourself. This is one area, I have no answers yet. But I try to take things as they come and don't think too much ahead when I am working.

I find reading some blogs/websites on the internet very helpful while coping with work & chronic illness. There are some great life coaching experts out there. I mostly do reading online when I have doubts taking any particular decision.

Medical Facilities : 
Medical facilities in Mumbai are top notch I think. Although I was misdiagnosed for couple of months in '97. But then again it could happen to me if I were at any part of the world. As DM is not just another cold / cough ailment ! For eyesight, I had gone to Chennai to Shankar Netralaya hospital which is one of the best  eye hospitals in the country. But here in Mumbai, I have formed a circle of doctors, who are my go-to doctors in times of emergency. So I have my rheumatologist,  homeopathy doctor, cardiologist, physician (my family doctor), ophthalmologist (a very humble & kind man who had advised me to go to Chennai for Optic Nerve Atrophy diagnosis/treatment), ENT specialist for those cold/cough episodes that happen every season change & of course my physiotherapist (who is more of a mentor & gives great advice) !


Awareness about differently abled people : 
I think Mumbai folks are the world's most fearless people. With all the cultural / religous / ethnic diversity that we have, still manage to help total strangers when in need. So its a very comman sight to watch visually impaired people walking across Dadar station(one of the most crowded railway stations in Mumbai) ! Every person born in Mumbai, has that tenacity & will power to jump across all the hurdles and impossible situations thrown by the city. Although its not a very disabled-friendly city. Wheel chair ramps are not present in most important places. I remember when I was wheel chair bound, we had to build small ramps across all places that I used to visit. But again, people are willing to help and support total strangers here. So thats simply amazing. There are some very good NGOs working for the differently abled people here. Like when I was working at my previous company, we used to do CSR activities for a NGO that helped visually impaired children. These amazing children used screen reading software and could actually type and use the computer like any other kid. I hope more and more companies encourage their employees to do CSR activities. In fact, if I was the HR I would put it up as a KRA activitiy for the year.

Phew, so its been a long post. But these are some of the points I always wonder how people in different cities in India or other places react to ! Mumbai is one place I will always want to live at any stage of my life. The occasional road trip across country side always helps though !

Ciao n Peace.

RocknRolla

Today the weakness was little better than yesterday. To cheer up ordered a pizza from Dominos. I felt like trying something new, since I had to order from the veggie stuff. So ordered the Veg doubles online. I was assuming it would be sufficient for me, since it said serves 1. But the delivery guy surprised me, as he insisted to come in. When he started unloading those pizza boxes, I was stunned. There were 4 pizza boxes ! Anyhow I gobbled up 2 pizzas for lunch and luckily my parents had the rest in the evening. So dinner was very light, corn cob and a glass of milk.

Didn't go for a walk today due to the weakness. So finally got the guitar tuner batteries fixed. I had not played it for a while, since hardly got time this past 2 years. So was bit rusty. Might need to get it checked at a workshop or something. Got it tuned, but some tunes were coming off bit different. Will probably start the guitar lessons from tomorrow. I have a couple of video lessons that I had bought around 3-4 years back. Weird thing was that since the strings hurt my fingers, I used a guitar pick. But the pick fell couple of times as my grip needs some exercise ! Yeah need to use the grip exerciser more often. Finally ended up playing without the guitar pick, since its too boring having to play same tune number of times and the guitar pick landing inside the guitar ! I do hope that someday I can play "Hotel California" or "Wonderwall" on my guitar and sing along ! Long way to go, for now relaxing my fingers.

Also setup my work environment on PC, so might start some new demo project from tomorrow just to keep myself busy. I had got an email about training students in an institute. But turned it down. I love to teach about automation tools and such, but enjoy training only team members and corporate employees. I don't think I would be interested in training some college or post graduate students in a coaching class environment. Main reason being, I hate the commercialization of education. These institutes/classes cost a bomb and wonder how these students still spend hard earned money there. Also, these days I find students taking the easy way out and not spending enough time on doing projects that matter. Like my cousin who is learning engineering called me up the other day and informed me that he had hired a freelancer to do his project work for college. I mean WTH. If they could just find an extra hour each day, they could very well do the project themselves right. Anyhow those are just my thoughts. Would rather wait another month and try to get a full time job in what I enjoy most rather than these ad hoc teaching jobs for now.

Ciao n Peace.

Some Yoga & Panic attacks

This week had been pretty uneventful until today. So was going through the daily routine and then I had a sort of panic attack or something. I had breakfast at about 9:30-10 and hadn't eaten anything for a while. Around 3 PM, felt really weak & queasy. So then had couple glasses of Vitamin C drink for easy revival. Also ate a lot of stuff like chocolates, cookies n now feeling very guilty about it. Since the incident, was feeling pretty weak today. I was feeling really good in the morning, have no clue how things changed so fast.

I have a doc's visit to get a refill of medicines on friday. I haven't really done any productive task for last 2 1/2 months and now feeling very stupid & guilty about it. Whenever I start any activity, I just lose focus and end up watching some crap tv(even watched few episodes of Gossip Girl once :P) or listen to music. Like I setup everything to start my guitar lessons n found the tuner was low on power or something. So instead of working on getting it fixed I watched Dexter & Homeland episodes back to back !

Last week had been to a yoga session. Basically it was mostly informative lecture, followed up by consultation by doctors. So these doctors and counselor will talk to you and will write down your profile for the instructor. Like what kind of exercises you should not be permitted to do, diet to follow, practices, etc. Guess what, I got rejected. lol. I really don't know how to explain, but they took all my case history and the consultation like went on forever. Finally at 5:30 was feeling very tired since had to sit on the floor the whole time ! Yeah ! They had chairs which were filled up by some old folks and I thought it would be really embarrassing to ask some one ! Anyhow we need to do yoga on the floor, so thought it would be good practice. But my feet hurt when I tried to get up at the end.

Anyhow the good part about the yoga session was the small pep talk given by the founder's wife and some video session that they had. Some advice given to me - walks, exposure to early morning sun (vitamin d, but then i told them about the DM rash,etc... so they were non commital on it), to become less emotional and be moderate (can't help it sometimes though) and crap load on diet. Well since May, I have been a vegan and stopped all fried , fatty food. So kind of slept through the diet speech and frankly I am not going to cut down on any sweets or anything ! Also, after the rejection they actually told me to come on saturday and  attend a consultation again. Hopefully they might show some yoga exercises, can't take more lectures !

They also asked me how spiritual I am. Since prayers are  a very personal thing to me, cut them short and told that its very personal and I prefer not to attend any religious functions,etc. But since then have tried to be bit more spiritual and have been visiting a temple nearby when I go for my evening walks.

Among other things, always wondered how people in different parts of the world live with Dermatomyositis or Optic Nerve Atrophy. I mean like while traveling by bus, train or work,etc. Will probably write something about life in Mumbai while dealing with them !

Ciao n Peace.

Movie & some family time

So today I took my parents to watch the new movie "English Vinglish". It was a real nice movie and my mom loved it. The story deals with an Indian housewife who is a small time entrepreneur, selling "ladoo"s. She is a typical Indian wife who selflessly does all the cooking, looks after the kids, in laws and at the end of the day is ridiculed by her husband, daughter for her inability to speak English properly. She later goes to US to attend a wedding and learns english. A little flash of Zaban Sambhal ke / Mind your language follows and ends with a happy ending ! Loved Sridevi's performance as "Shashi", a great comeback film for her. 

So then movie was followed by lunch at my mom's favourite restaurant and her favourite Indian curry / nan & parathas had to be ordered ! I steered away from all the friend food, but a heavy late lunch nonetheless. Finished the day watching the T20 WC finals ! Really excited for the West Indies cricket team. I hope they win many such world cups, just so that we can see their celebrations ! Glad Sri Lanka / Australia didn't end up winning it. Would have missed the "gangnam" dance :)

Health wise observed there has been some muscle wasting of hands/thigh muscles. Sometimes I feel slight burning sensation when I am resting or walking and feel that some vigorous exercise might stop it. But then keep myself in check, since the fatigue that follows is really bad for me right now. But due to the muscle wasting, my hands have become extremely sensitive. My elbows are in constant pain, even while sleeping which really is irritating. Also end up cutting myself while trying to open up bottles/cans or trying to drink coconut water, just because my hands are too sensitive !

I am also trying to come up with a technology blog. Since that is an area I feel I am comfortable writing. Once I have enough blog entries related to the latest in automation tools, will try to convert it into a book or something. Day by day it is becoming clear that getting back to work might not be possible over night. It might take few months to get back to full fitness or even half. Present condition is far from it. Need to be able to work for at least 9 hours.

Ciao n Peace.

Weekend gone by

I am really missing work. Felt really bored this weekend with nothing much to do. These days mornings are mostly spent trying to get up, make breakfast. I had breakfast at 2 pm on Saturday ! Just not feeling that well for now. All the muscle pain tends to kill all the buzz. I feel better after taking a shower which happens only by late afternoon/evening. I really need to work on something from next week. Can't live of this schedule. Planning to join a yoga class maybe. Hopefully that should help me ascertain how much activity I can do before the fatigue takes over. Also have to think of getting back to work by late October / early November. 

I am also having some issue with my eyesight. I usually use some eye drops for dry eyes. But sometimes its overwhelming and I feel really tired when reading something on the computer or watching tv. Maybe just need to relax my eyes a bit off pc / tv. Also too much bright light makes me feel queasy and all weird. I will try to get an appointment with the eye doc soon.

Financially I am not doing that well. I have to make payments every month for the home loan. Never thought I would miss work for such a long time. Hopefully by December things should be much better since have some investments that I can withdraw ! Along with the disease when other things are worrying you, it can really pull you down ! Hopefully won't dwell on it too much now.

Weekend was pretty uneventful. Since I was feeling better only by evening, spent my evening watching football and T20 Cricket World Cup. Felt bad with the Arsenal loss, but Liverpool did provide some cheer and to top it India defeated Pakistan comprehensively in T20 World Cup ! Never thought India will play better again, after the terrible loss against the Aussies. I believe todays lineup should be kept unaltered for the rest of the tournament. Only then we got a chance to win the world cup !

I spent today evening searching for my antivirus license key. I somehow misplaced it and now I am not able to find it ! I need to reinstall the operating system & antivirus program. My pc is getting junkier day by day. I am not a big fan of using tablets or mobile phones for chatting / surfing net.

Ciao n Peace.