It's been long time since i wrote anything...as i thought everything is alright now and I'm absolutely fine...have escaped from "Polymyositisis" but, no i was wrong,I'm still being truanted by"It".
I was so happy when Doctor told me that there's no need to continue with the medicines as there's no more sign of PM.I was relieved to hear that.....wow finally I'm out of steroids and that horrible methotrexate.....But there it goes again....after giving me normal 4 months it's back with all that unexplainable pains,feeling of exhaustion & weakness....
so after being down with fever for 3 Weeks i finally went to the Doctor....she suggested some routine checkups to see if there's any infections ....luckily there isn't any....so what is it that is making me sick again & again.according to my doctor it is my weak immune system....it has become so slow that it can't fight with any foreign particles even if they are as light as of cold....
nothing can be done as for now as the Doctor is on leave and I've to wait for her for 2 weeks.
I don't know why inside me i can see myself getting in "it's "grip again.I'm trying to ignore that negative feeling but this time I'm failing to do so....i never felt so negative before...i hope it's just because of my previous experience that suddenly I'm panicking and nothing serious....
Every morning i wake up with the same lethargic body,exhaustion.I'm not even able to do my Yoga..and other basic house chores.It's getting frustrating now...giving explanations to peoples that why I'm falling sick all the time....i don't know whether their concern is genuine or they are just thinking, "look at this girl"....always telling I'm not good.What's wrong with her she looks absolutely fine...yes, "absolutely fine " that is what my problem is...i look completely alright and everyone thinks that it just in my mind that I'm sick.This is the reason why i sometime wants to avoid all relatives and friends as no one seems to know exactly what i feel...so to avoid the embarrassment of being sick all the time most of the time i just end up by trying to be a "super woman" who can do everything....run around after her son,do all the house chores,entertain the guests and do everything on her own(i know how simple these tasks can sound to anyone except those who are fighting with Polymysotisis).as a result i end up with over-exertion and finally on bed again.I don't know how long this process will keep going on....
It feels so miserable specially when you are so young...there's so much i want to do.I just want to live my life to the fullest but feel like being trapped in this body...the heart wants to run and explore everything but the body doesn't listen....
I'm so confused,don't know what's happening, me overreacting and becoming paranoid of PM or something is seriously wrong with me.I don't know whether this is my past experience with PM which is making me so anxious and paranoid or I'm really going to get that horrible thing again....whatever let's hope for the best and i better should keep my calm.
I know I've always thanked GOD for giving me such a wonderful life but i don't know why today i feel like asking him why you just missed that one thing called good health in my life.I know it's not fair from my part from questioning him for what he has not given me but really sorry GOD today I'm just missing that missed thing iii so much.
UFFFFFFFFFF i better should just stop this depressing post and just take it as one of those days when you feel really low and nothing seems working for you....
just hoping to wake up tomorrow with a healthy day and positive thoughts....GOD BLESS ME....i need it 2day and every other day coming in my life.....indeed
Saturday, 5 June 2010
Tuesday, 25 August 2009
recovering through family support
RECOVERY TIME:
Getting back to life wasn't a easy start but with the loving family it wasn't that tough either.i remember each and everyday...i was struggling to get up and sit,lying their dreaming for the days when I'll b able to sit,stand and live normally......i was on 40 mg of predisolone and started gaining weight.....but thanks to my genes i didn't gain much,otherwise that would have been another fight as getting fat was and is still my biggest fear.
FAMILY SUPPORT
My mom was taking such a good care of my diet.....she was feeding me every 2 hrs...homemade juices,milks,dryfruits...........ufff ! what ever she could think off.My dad was my support....he was so positive he never for a minute thought that I'm never going to b alright and i believed him.........My Mom and Dad was my power specially their positive attitudes.Never once in the whole period of PM they thought that i'm not going to b alright.They were so so and so positive and their hope gave me hope and spirit to fight.Specially my dad,he was like an instructor or u can say a trainer checking me and my progress daily.I remember him coming everyday straight from work and asking me what i did today,that is how far could i stretch my arm and how high could i lift my legs........that gave me the spirit to move on and to keep challenging myself so that i can show him something when he comes back from office.Dad really used to get irritated, if he used to find out that any one has tried to neglect me,which actually no one was doing intentionally but somehow because of the workload and responsibilites everone got,. it used to become unavoidable to fulfil my demands.There were peoples coming to visit me all the time and just to serve them tea and water was a hell of job..........the one who was really affected with my PM was my sister....she was studying her fashion designing in Delhi and she had to come bk to c me...whole time poor girl was busy in the kitchen making tea and juices and then in the mid- night i used to trouble her by asking can i've a glass of water please....as i couldn't get up and then i used to wonder who shall the God pitty me or my sister.................
I wrote this because i know that being sick is hard but having a sick in Ur family is much harder for the family members 'coz at least the sick person is getting the sympathy but the family members,their life is so miserable and they can't even tell anyone.They have to take care of the sick member,the guests plus have to carry off their lives normally and that too without any complains....it's really tough and from my this post I'd really want to thank my family in fact to all the families of the sick peoples because it's only them,who makes a sick person feel better and gives them the hope that every thing is going to b fine....so thank you mom and dad,thanks neetu my dear sister, all the friends and my naughty naughty brother monu because his mischievous acts kept me smiling in fact it was him who made my life so lighter with his silly- silly jokes He never took me and my PM seriously.He realized it the day ,I called him for help......... i wanted to to get up from a chair, he gave his hand but just left me in between thinking that he did his job but was shocked when he saw me on the ground......first he laughed and then when he realized what happened he felt so sorry..........but seriously no complains at least his inseriousness towards life made everything so light.
when i look back i feel kind of nostalgic and think the credit to my recovery and positivity goes to my family.....they were there all the time,each and every member of the family was doing their best to make me happy and better.In their own little ways they made the long and painful period of recovery a memorable life experience..........
Getting back to life wasn't a easy start but with the loving family it wasn't that tough either.i remember each and everyday...i was struggling to get up and sit,lying their dreaming for the days when I'll b able to sit,stand and live normally......i was on 40 mg of predisolone and started gaining weight.....but thanks to my genes i didn't gain much,otherwise that would have been another fight as getting fat was and is still my biggest fear.
FAMILY SUPPORT
My mom was taking such a good care of my diet.....she was feeding me every 2 hrs...homemade juices,milks,dryfruits...........ufff ! what ever she could think off.My dad was my support....he was so positive he never for a minute thought that I'm never going to b alright and i believed him.........My Mom and Dad was my power specially their positive attitudes.Never once in the whole period of PM they thought that i'm not going to b alright.They were so so and so positive and their hope gave me hope and spirit to fight.Specially my dad,he was like an instructor or u can say a trainer checking me and my progress daily.I remember him coming everyday straight from work and asking me what i did today,that is how far could i stretch my arm and how high could i lift my legs........that gave me the spirit to move on and to keep challenging myself so that i can show him something when he comes back from office.Dad really used to get irritated, if he used to find out that any one has tried to neglect me,which actually no one was doing intentionally but somehow because of the workload and responsibilites everone got,. it used to become unavoidable to fulfil my demands.There were peoples coming to visit me all the time and just to serve them tea and water was a hell of job..........the one who was really affected with my PM was my sister....she was studying her fashion designing in Delhi and she had to come bk to c me...whole time poor girl was busy in the kitchen making tea and juices and then in the mid- night i used to trouble her by asking can i've a glass of water please....as i couldn't get up and then i used to wonder who shall the God pitty me or my sister.................
I wrote this because i know that being sick is hard but having a sick in Ur family is much harder for the family members 'coz at least the sick person is getting the sympathy but the family members,their life is so miserable and they can't even tell anyone.They have to take care of the sick member,the guests plus have to carry off their lives normally and that too without any complains....it's really tough and from my this post I'd really want to thank my family in fact to all the families of the sick peoples because it's only them,who makes a sick person feel better and gives them the hope that every thing is going to b fine....so thank you mom and dad,thanks neetu my dear sister, all the friends and my naughty naughty brother monu because his mischievous acts kept me smiling in fact it was him who made my life so lighter with his silly- silly jokes He never took me and my PM seriously.He realized it the day ,I called him for help......... i wanted to to get up from a chair, he gave his hand but just left me in between thinking that he did his job but was shocked when he saw me on the ground......first he laughed and then when he realized what happened he felt so sorry..........but seriously no complains at least his inseriousness towards life made everything so light.
when i look back i feel kind of nostalgic and think the credit to my recovery and positivity goes to my family.....they were there all the time,each and every member of the family was doing their best to make me happy and better.In their own little ways they made the long and painful period of recovery a memorable life experience..........
THE PROGRESS:
My health progress was slow but at least me and my Doctors were quite happy with that.After 6 months on 40 mg i was reduced to 35 mg and like that every 3 months 5 mg was getting reduced.I remember one day my dad came back from office and i was so exited....the reason was after being sick for almost 6-8 months that was the first time i got up from the bed....i couldn't wait to show him that..........i laid on the bed and started showing him off .......it was kind of funny(i was wriggling like a worm and was struggling to keep my legs down on the floor) which i realised later as my brother started laughing and said is this u call getting up and tears started rolling off my dad's eyes but he said good job anu u can do it......and i knew in my heart that he was right i can do it doesn't matter how tough and long it's going to be,I'm going to b alright one day and will be able to defeat my brother again while having a pillow fight.................
After good 8 months i finally started walking.........they were very small steps but at least they were my steps toward a new life.........As the months started passing by my life became closer to normal,i missed one whole year of my post graduation and didn't get good marks but i studied harder and really got distinction in my second year of post graduation.
LESSONS:
It's been 10 years and I'm still on medication.The journey was quite long and i know i still have to walk a long way but no regrets and no complains as this part of my life has taught me several lessons.........and the most important one is to be happy and thankful to the God for whatever he has given us, as there are thousands who are not that blessed as we are.So please,please and please never crib and always try to appreciate what u r and what u have.........and trust me u will never feel sad in ur life and will realise that life is not that bad as some peoples call it, it's just how u take it............by smiling or by cribbing,i took the first one and feel so blessed ............so let's thanks together to that God for giving us more than we can carry off..........
Wednesday, 15 July 2009
Diagnosis and Treatment
DIAGNOSIS:
8 June 1999,I reached the hospital and from there my journey towards a better health life began.I entered the Doctors room.He examined me and asked me how and when it all started.I told him the whole story the pains,the swellings.........After examining for 45 min he took me to his senior Dr. whose name was Dr. UK Mishra and explained my case and when the Dr. asked what does he thinks of this case he said i think it's a case of Polymyositis.I heard a name which i never heard earlier to b very true it took me a while to remember it's spelling.
Anyway my dad was been told that they've to admit me.......
EXAMINATION:
On examination they found Periobital and facial puffiness,Heliotrope skin rash above eyelids,bulbar weakness,sternooestand and trapezias weakness.....all this meant that I've PM with Dermatomysotisis.Muscular as well as skin infection.
OBSERVATION:
From that day to another 15 days i was on some kind of observation.On my very first day in the hospital i was given injection Solumediol 0.5gm x 5 days.Within 5 days my swelling disappeared and and what was visible now was a skeleton of me.Everyday some tests and for a time being i thought is their any test left which has not been done?Well they confirmed that it's a case of Polymyositis after doing my Biopsy.We were so happy at last i was diagnosed and my treatment can start and i can live normally...... i was so happy even in that horrible stage 'coz i knew I'm going to get up now.I can walk,run and dance.I started visualising myself doing all these things.........OH God! how excited i was.
EXPERIENCES:
Life in a hospital teaches you so much.........Every other bed next to you belongs to someone suffering with some disease.Everybody seems to be in so much pain.The hospital bed make you think that it's not only you who's suffering or is in pain .The world is full of Peoples who are suffering.There are cases worst then you.Some of them are so bad that it hurts to watch them and then at that time you feel so thankful to God that at least your case is not that worst theirs still hope in it.Only thing you pray to God at that time is that He gives you the strength, so that you can fight this time and come out of it as a winner.I realized how lucky I'm to live.Doesn't matter even if it's painful and miserable at least their is a chance of getting better and to live normally.There were peoples all around the country and all different kind of problems...some were small kids,some were Fathers and some were Mothers.....there were some who couldn't even talk.Their family needed them.The pain they were going through was visible on their faces.And when somebody fall sick it's not the person who gets affected but the whole family and the peoples attached to them get affected.I realized that there and It was really sad to watch all of them.......
MEDICATION:
After 15 days i was discharged from the hospital with some medicines and instructions......
i was advised to take 60 mg of predisolone and 500 mg of calcium+some vitaminsbut 'coz my weight was just 40 kg they settled me on 40 mg of predisolone and told me that I have to keep visiting the hospitals every 3 months and have to be on medicines through out my life.....I was happy in one way that at least I'm been diagnosed and will be alright very soon but the thing to be on medicine on whole life was too much to digest.... the doctors told me that with in 6 months I'll gain back some of my strength and will be able to walk and live a normal life.........
8 June 1999,I reached the hospital and from there my journey towards a better health life began.I entered the Doctors room.He examined me and asked me how and when it all started.I told him the whole story the pains,the swellings.........After examining for 45 min he took me to his senior Dr. whose name was Dr. UK Mishra and explained my case and when the Dr. asked what does he thinks of this case he said i think it's a case of Polymyositis.I heard a name which i never heard earlier to b very true it took me a while to remember it's spelling.
Anyway my dad was been told that they've to admit me.......
EXAMINATION:
On examination they found Periobital and facial puffiness,Heliotrope skin rash above eyelids,bulbar weakness,sternooestand and trapezias weakness.....all this meant that I've PM with Dermatomysotisis.Muscular as well as skin infection.
OBSERVATION:
From that day to another 15 days i was on some kind of observation.On my very first day in the hospital i was given injection Solumediol 0.5gm x 5 days.Within 5 days my swelling disappeared and and what was visible now was a skeleton of me.Everyday some tests and for a time being i thought is their any test left which has not been done?Well they confirmed that it's a case of Polymyositis after doing my Biopsy.We were so happy at last i was diagnosed and my treatment can start and i can live normally...... i was so happy even in that horrible stage 'coz i knew I'm going to get up now.I can walk,run and dance.I started visualising myself doing all these things.........OH God! how excited i was.
EXPERIENCES:
Life in a hospital teaches you so much.........Every other bed next to you belongs to someone suffering with some disease.Everybody seems to be in so much pain.The hospital bed make you think that it's not only you who's suffering or is in pain .The world is full of Peoples who are suffering.There are cases worst then you.Some of them are so bad that it hurts to watch them and then at that time you feel so thankful to God that at least your case is not that worst theirs still hope in it.Only thing you pray to God at that time is that He gives you the strength, so that you can fight this time and come out of it as a winner.I realized how lucky I'm to live.Doesn't matter even if it's painful and miserable at least their is a chance of getting better and to live normally.There were peoples all around the country and all different kind of problems...some were small kids,some were Fathers and some were Mothers.....there were some who couldn't even talk.Their family needed them.The pain they were going through was visible on their faces.And when somebody fall sick it's not the person who gets affected but the whole family and the peoples attached to them get affected.I realized that there and It was really sad to watch all of them.......
MEDICATION:
After 15 days i was discharged from the hospital with some medicines and instructions......
i was advised to take 60 mg of predisolone and 500 mg of calcium+some vitaminsbut 'coz my weight was just 40 kg they settled me on 40 mg of predisolone and told me that I have to keep visiting the hospitals every 3 months and have to be on medicines through out my life.....I was happy in one way that at least I'm been diagnosed and will be alright very soon but the thing to be on medicine on whole life was too much to digest.... the doctors told me that with in 6 months I'll gain back some of my strength and will be able to walk and live a normal life.........
23 June i reached back to my home......i wasn't able to get up still but at least there wasn't any swelling and the pain was also bearable.Everyone was so happy...all my friends and neighbours came to visit me.......it all looked like as I'm born again.To be honest it was like that only as I was like a child totally dependent on my parents for gettingup,eating,bathing,changing,walking,sitting....every little thing........and i knew in my heart that again like a child i've to learn everything.
Monday, 13 July 2009
My early days of Polymyositis
1 – 1 of 1 It's been 10 years I'm a patient of Polymyositis and today i just felt like writing something about it.It not as i never felt like telling or writing it before.....but it's just never happened.10 years ago When i was 21 i never thought my life is going to be affected so much with just falling sick.I was always a very active girl,always interested in doing outdoor activities,had such a good flexibility and was so proud of it.And then in Feb 1999 I was preparing for my B.Com final year exams and i realized I'm getting tired so easily,climbing the stairs,running was becoming difficult for me.I didn't take it that seriously as we all do feel tired and exhausted,(specially during our exam times).But i didn't get better....as the days started passing by and my exams too i realized something is really wrong with my body but i was too late to realize that......i still remember the date it was 5 April my cousin's birthday and i was having some gap between my last two exams.I reached her house all by walking it's about 2 miles......every step was so difficult.I reached her house and just asked for the bed.....i lay ed thinking will get up in 10 min....but that 10 min took so long to come.That was the day i got stuck with the bed and was with till another 6 months.......nobody knew what happened to me........I was in so much pain as like some 100 kilos of stuff has been put on my each part of body.In spite of trying my best i couldn't move myself...the pain was unbearable.I had no idea what was happening to me ...i was so tensed for my last 2 exams.Anyway we went to the Doctors...and in spite of me telling them that I'm getting swelling in my arms nobody noticed(i used to be very skinny 39 kg....)a cm or 2 of swelling was not visible to anyone.......we kept changing the Doctors...but of no use.My situation got worst and worst.The day i had to write my exam my friend lifted my feet so that i can step inside the car...somehow i reached and tried to write something....but i couldn't...i just cried and cried.....wrote a line or two and just came back telling my situation to the headteacher......
My situation was becoming worse and worse.It became completely impossible for me to lift my arms or legs.I was totally paralysed.Clenching fingers was also so difficult.I had to call someone if i wanted to get up.I was in unbearable pain...even if somebody used to touch me to feel my swelling it used to hurt.I was so shocked by seeing myself in that situation.Lying down whole day and feeling sick ,how difficult is that was realized by me then only.
We kept changing Doctors as none seems to diagnose my condition making us more miserable.One day we(me and my Dad) went to our GP.That was the day when my GP told my dad that if he wants to see me alive,he should take me to PGI-Lucknow(INDIA)immediately.Without wasting time my dad took me to PGI with a hope in his eyes........WE reached the Hospital next day early morning and my journey towards a better health life began from there...........draft 11/07/09 by Anita Delete
My situation was becoming worse and worse.It became completely impossible for me to lift my arms or legs.I was totally paralysed.Clenching fingers was also so difficult.I had to call someone if i wanted to get up.I was in unbearable pain...even if somebody used to touch me to feel my swelling it used to hurt.I was so shocked by seeing myself in that situation.Lying down whole day and feeling sick ,how difficult is that was realized by me then only.
We kept changing Doctors as none seems to diagnose my condition making us more miserable.One day we(me and my Dad) went to our GP.That was the day when my GP told my dad that if he wants to see me alive,he should take me to PGI-Lucknow(INDIA)immediately.Without wasting time my dad took me to PGI with a hope in his eyes........WE reached the Hospital next day early morning and my journey towards a better health life began from there...........draft 11/07/09 by Anita Delete
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