Peek-a-boo, I see you..

Life with RA is a constant game of peek-a-boo the only difference is the tears that fall are not from laughter. Hard truth of chronic illness baby.

Some days everything seems so good with my immune system taking a day off and leaving my joints and me alone. On those days wherever I look I see beauty, happiness and joy. World full of happy go people , feasibility of things I can do, experiencing joy in the laughter of kids, finding contentment in the confines of hubby’s embrace it looks as if i’m living in a fairy tale. And those days are what keeps me going and those days are what define the actual me, what I aspire in my life

Some days its simply doomsday. Nothing works , everything aches, even the smallest of small task feels impossible making me feel hopeless and helpless, I feel jealous of everything and everyone its a direct switch from a good witch to bad witch, a fairy tale to a horror movie. But these days are what makes the good days even more special. All the things that I took for granted in the past I cherish them now. I am thankful for all the things that I experience on my good days making them more sweeter (I know I should avoid sweets/sugar).

I would say RA is a strict rule enforcer whenever I deviate from the path or start taking it for granted it knocks on the door to say “Miss me, Baby ?”, “I’m always around the corner waiting to say Hi” . God knows I do need such an enforcer to keep me on track. So today is the day it finally made the decision that i’m off track for sometime now and in dire need of a reminder so it made its grand entry to make me howl in pain.

Howl, I do and Pain, I feel. Time to buckle up and take the ride to remission (that’s exaggeration) or some pain free days…

 

 

 

 

 

 

 

Waking up from my slumber…

After hibernating for more than a year i’m just waking up from my slumber or just wiggling my joints in RA terminology hopefully I stay awake for sometime now.

This past year has been a roller coaster ride with so many changes occurring in the family, RA wise and on career front. Not a single day passed which was dull maybe that is how it has been from the time my dear husband entered my life. This year marks 10 years of our companionship. What a decade it has been with so much joy and tears, ups and downs, so much learnt and experienced, gained a lot and lost a lot every moment to cherish and count on.

First half of the year in the new house was filled with contentment albeit some stress, happiness with some hiccups. Me settling in as a stay-at-home mom. Fighting the fatigue , pain, depression and helplessness but making it up with kids having bonded with them was the highlight. With my father-in-law staying with us in this half also helped to know him better and developing that new companionship which even though short-lived secured a permanent spot in my sweet memories. My short stint of car driving which came to a halt as usual. Socializing with community ladies attending or at least making an attempt to attend all the gatherings. There are some good days and some bad but overall it was good.

As all good things come to an end the sudden demise of my father-in-law brought a storm of pain and sadness in the family. The pain of missing a family member is heart wrenching but when it is unexpected its a blow to our equilibrium. We matured overnight from being still kids (even though we had our own) to the responsible members of the family. I guess until you loose some one we will not understand the prominence of their role and wisdom in our lives. From simple followers we grew to be the decision makers and we sailed or still sailing through the testing waters with the strength of the family bond which held everyone together. Life moved on…

I would say my RA or my body co-operated extra-ordinarily during these testing times. I was able to fulfill my role without holding back. Thank god for that strength. New dynamics in the family but as always life goes on..

 

 

Self destruction or self preservation , cowardice or ambitious…

After 45 days of following holistic way of reversing RA I’m giving up or taking a break. It’s not that it didn’t work for me actually it did it gave me a short glimpse (15 days) of bubbling energy and happiness but it waned of after that. My hormones took a toll in turn my menustral cycle and my mental health. I’m losing sleep in turn my energy and the ultimate a deep dive to abyss of my RA. I have learnt that our ears also have soft bones and small joints are you kidding me 😉 can’t we have a single place in our body without joints. God you are not a very good designer in my opinion 😎.

   This is my perspective but others may have a different opinion like I’m succumbing to the disease or just being a coward or plain and simple selfish. But finally I’m able to embrace my inner intuition and ignore everything and everyone else after all its my life my body and my journey. I want to be the one who drives it decides what is good for it. I want to decide what to eat and what to do based on my bodys response not because something is proven and meant to work. 

   Again in my opinion this is self preserving and being ambitious. Ambitious to nurture myself and my body to achieve what I want. If I fail and end up worse let it be. There is risk in every corner of life and this is mine to take which I’m willing to. Even though it’s a little bit disheartening to see people around me have so less confidence in me its ok. It’s my pain and also it’s my gain.

     Mental illness is more gruesome than any physical ailments . What’s the use of a healthy body without a happy soul. So I’ll work on my mind first and body next.

The saga continues…

Will a good girl always remain good…

How do people measure one’s character? How will someone become good, respectable and responsible person? Will a good person always remain good? How does one become good ? By not getting any rebellious thoughts or being able to control that rebellious thoughts and not acting on it?

   Is someone who is selfish and self-centered considered bad? What matters more being good in front of society, family and friends or being good to our self. What gives us peace, contentment and what makes us un desirable, unsuitable and irresponsible? 

   All these crazy questions are plaguing my mind. ( Obviously when the world around me is asleep and I’m left with my hyper active and over rested brain in a dark room.) So as usual my pains are back making me crazy but now with all the time in my hands (ranout of interesting books to read for now) and being bed ridden is giving me new ideas. So far I’m a good girl who is responsible blah blah as far as my relatives and friends are concerned. It’s a whole different story if you ask my husband or my mom.

   So will my character rating get degraded if I act on my rebellious, crazy ideas is the point of debate. Ofcourse all my ideas revolve around absconding duration and destination to be considered later. Can I take the risk or chance to act on it? Can I for once in my life take a spontaneous action without thinking about its repercussions? Can I let go? Isn’t it a selfish act from me? Doesn’t that make me irresponsible? Why should I even bother about what others think ? 

  Maybe this is why I have RA in the first place I over think about everything and act on nothing making my life stressful, boring and predictable

What goes comes back … 😎

Looks like I’m going back by few years in my life. When I lost my excess weight and went back to my college days weight I was elated to get my size back but God did I ever imagine to get back the other dreaded things I lost 😂 i.e, my myopia aka eye sight aka spectacles.

  While my husband is happy to have my studious look back me not so much. After going through the hell of LASIK treatment and all the horrendous waiting in LV prasad eye hospital for the tests and procedures I never expected to have them back. 

I hope this eye sight remains at this basic point and doesn’t increase as earlier. I can’t tolerate all those near blind days I still remember the day of my LASIK operation the way I was reading anything and everything with my eyes as if a blind person got new eyes in a way I was blind without my specs. Most days I used to sleep with my specs on and I used to have my specs on before opening my eyes.

Fingers crossed and welcome back my specs…

I wish human body also has a reset button..😎

If I find a magic lamp which will give me 3 wishes my first wish will be for a body reset button just like our windows machines. When things are going out of control or when you don’t know what the hell is happening you just do a force restart boom it starts fresh again. How alluring my insane idea sounds !!.

  All this awful medicines that I’m taking for the past two years are doing a number on my body. I just don’t know how it is going to react to some things or when I’m going to be super fine or worst. I forget taking my steroid one day that’s it boom I’ll become a night owl for two days without sleep dry eyes and irritating. 

Either that or a magic potion or a fairy like our disney fairy tales which will convert us back to our newself. Life is so beautiful when seen through disney lens. Happy and beautiful princess with happily ever after. 

Sleep.. my Achilles heel 😥

I love to sleep yes through morning, during day anytime. I can’t blame RA for this unfortunately it’s totally on me. I always loved to sleep. I always put sleep above everything like eating (this is just bad I can’t even count the number of times I skipped eating just to get that extra minutes of sleep), watching TV, going to movies any fun activity for that matter, going to temple ( I can imagine all the times my mom was furious) , skipped office to sleep, play with kids, spending time with my husband anything and everything. If there is anything that can push away my sleep is a good novel and also my mother in law ( She doesn’t say anything but I’m naturally scared of her) and also the initial months after my kids birth to feed them. Insert Ranjith’s angry face here.

  As I grew up my addiction towards my sleep also grew thanks to my lenient husband and guilt driven mom. There are many incidents where Ranjith was mad at me due to this. I feel bad that day and decide it’s high time I should be more responsible and change but that never happened so far. When the morning comes I just think it’s ok to sleep little more damn the consequences.

    Irrespective of the time I go to sleep during night I don’t want to wake up in the morning. This just can’t go on as Ranjith is realizing lately that I’m blackmailing him emotionally in order to sleep and he is following the same route. Passing on statements like I’m setting bad example for kids, I’m ignoring my duties blah blah. Oh please i don’t remember any one these when I sleep.

   Responsibilities and humans suck big time. I wish I was born as a animal and can hibernate months together and no bothering about health, socialising or grooming or anything just lying around and sleeping off. God it’s so tempting.

 Give me some food … Give me some sleep… Give me another chance I wanna nod off once again… Nah nah na … Na na na nah naaa…

Pulled up the badass socks on.. got a tattoo..

Getting a tattoo was always my dream maybe it shows my badass attitude or it brings out rebel in me which was always suppressed by my act of a good girl.
During the tumour scare I realised if something were to happen to me I had so many things to do before I die and prepared a bucket list. Getting a tattoo was one of them. I never wanted to let people know that I am sick. But lately I realised it’s ok to be sick. So I decided to get rhuematoid disease ribbon as my tattoo.

Lot of people were surprised and disappointed with my tattoo. They are asking what is the need of having that ribbon permanently etched on me. Some people simply don’t understand why I went for a tattoo. I’m ok with comments and criticism because I know the importance of this disease in my life tattoo or not it is permanent in my life.

I wanted to have this tattoo as a reminder that life can take a u turn anytime and you will be nothing but a spectator. I want this tattoo as my inspiration that it’s my fight and I can be the one in control of it. I want this tattoo to be a mark to ground me and warn me when I’m pain free to make most of today as you never know what is in store for tomorrow. I want this tattoo as a guide for the healthy and active lifestyle which should be my motto from now on.

I’m happy that I could go through my wish with as usual a little nudge from my husband to push me over the edge when I hesitated​ My partner in the true sense.

When RA makes you feel helpless and hopeless…

Sometimes I feel more than the physical pain and damage caused by chronic illnesses like RA emotional damage is more intense. The sense of helplessness caused due to the morning stiffness or pain or fatigue of RA is unbearable. When our loved ones are taking a toll of this it becomes even more tougher to accept our illness as our fate.

Did I ask for this? Did I do something wrong in the past which is making me go through this? Is this the so called karma? Why should my family suffer because of me? Why should my kids compromise? Just because they are born to a mother who is sick they are compromising on their play their routine their friends. How do I prioritize? How to supress this guilt and move forward? Will it get better going forward? Will I learn to move on from this?

The moments when I cant raise concerns or argue because I’m not fit enough to look after my kids alone are so depressing I just want to bang my head. The natural aggression in me doesn’t want me to accept defeat. I don’t want them to suffer but what good will I do to them if they are left alone with me. When they look back later on to their childhood maybe all they see will be a sick mother who could not play with them or entertain them and a father running behind them to meet their needs. This is the moment of decision between fight or flight. As flight is not an option fight it is.

I’ll fight with myself, with my body to the last point of my willpower to do justice to my kids and husband to fulfil my duty as a parent and spouse. I’ll fight to come out of this dark clutches which makes me not only physically but also emotionally and psychologically weak and impaired.

Hair everywhere…

Its been just 3 weeks now I have re-started taking the methotrexate and already it is showing up its side effects. I have nausea and lightheadedness on the next day I take this tablet which is a side effect I’m well versed with. The most heart wrenching part is I see hair everywhere in my dressing area, my bathroom, on my comb, on my pillows and god on my chair at my office too.. eww… very embarrassing guys.

Hair is very precious for women and I already have less hair thanks to my laziness, pollution, stress and hormonal imbalance and to add to my woes this monstrous methotrexate is making me loose hair at a scary rate. The rate at which I’m currently loosing my hair I’m sure to become bald very soon in the future. When I raised this concern with my husband he gave me a funny look as if to say I’m crazy that I’m bothered about my hair when there are other major parts of me that are at risk. But buddy those are not visible.

But guys are guys they don’t understand how de-regarding it is for a woman. I should work on getting rid of this methotrexate to save my dignity aka my hair. Fingers crossed. May this journey to recovery recover my hair losses as well.