TOS : How to cope with it everyday

I haven’t ever considered about sharing my TOS problems with anyone else, outside my family. Because  I thought it would be my weakness to talk about these things. But I was so wrong! Neither is it “nagging” nor “weakness”. Rather it takes real strength to tolerate the pain and calmly talk about it.
I came across some groups about cervical ribs and TOS in Facebook. I will attach the links below. These groups made me realize there are so many people out there suffering everyday and still living their lives with this constant pain. After I read their stories, my loneliness and detachment from outside “normal” world came to a halt. I suddenly realized,  I am not alone. I am not the only one getting depressed about it and waiting for the pain to be gone.

There was a time when I used to cry each and every night and getting disheartened about my deteriorating health. My grades were falling. Relationships were trembling. I had to struggle each and every morning to get out of bed and start my day. I could not talk to my friends about it. I was persistently feeling left out and ,sometimes, worthless!
But I gradually I have overcome it.
How?
Well, I am here to talk about it.

1. ACCEPTANCE ….

There is no other solution than accepting the fact that lots of things are going to change after you discover the cause of your sickness. You may (and often) wonder, “why me?”. There is no answer which can justify the excruciating pain and numbness. But  it is possible to have a life WITH the pain.You  just need to accept it first. Everything else becomes tolerable after that.

 

2. KNOWLEDGE…. 


Knowledge is power, the power to accept things and know our own body.  We have books, internet to know about the weirdest stuffs . I browsed internet and read many books about my condition. Talked in details with doctors, about my concerns and possibilities.  Read articles of those people who are suffering and gone through surgery  or treatment. I learned what to expect and how to deal with it.  

 


3. SHARE….

Most of the times we can’t share our problems with others because, they won’t understand and sometimes in heated situations they point it out to us. But there are many sites on internet and many groups in Facebook concerning TOS….which are really helpful. I came across a group in Facebook named “Cervical ribs” . There are 44 members in this group. Not a very impressive number, I know. But I am glad that I have found 43 members besides me who can relate to my feelings, to whom I can talk about the pain and distress. I felt MUCH better after I was able to do so. We don’t even know each other. But I know it is true in my heart when they say, “I know how you feel!

 


4. PATIENCE…

People are going to ask awkward questions, they won’t understand and ,worse, they could be skeptical about the whole pain thing. Period! At first, I used to get furious when I had to make them understand what is happening with me.  Sometimes the questions became less tolerable than the pain!

 

 

I had to face questions like, “Does it really hurt? (with skeptical look)” , “Why are you not well yet?

And after my surgery on the right shoulder, one of my friends [who didn’t know about my surgery] innocently asked me pointing at my scar; “How did you cut yourself?” (I mean, really?! Cut myself!!) .

I just smiled…..

5. MOTIVATION…

Yes I know I can’t play badminton anymore. I can’t browse the shops for a lucrative and uncommon dress for long hours. I can’t run or walk or sleep without experiencing the pain.  I can’t blow-dry my hair. I can’t bake a cake or cook for my dear ones without having the “I-am-gonna-die” kind of pain. I have to leave the career path I have worked hard to achieve.

Still I am here and I am living my life, isn’t it?
It has not finished yet.

But I have to take motivation every day of my life to go ahead. May be its your parents ,the 70 year old grandma, 6 year old nephew or public figure like Nick Vujicic– just take inspiration and get motivated. Trust me, motivation is better than any pain killers I have ever taken. It’s free and doesn’t cause stomach ulcer

Nick Vujicic


6. ENJOY….

You heard it right!
Enjoy!
Enjoy your life to the fullest. Enjoy every little things around yourself. Enjoy the fact that you can tolerate pain better than your friends. You are tough. You are strong. You can smile even you are dying inside with the pain. Life gets much easier if we just divert our focus from the pain and start looking at something else. Something beautiful, around us.
I know I am not a certified in pain management and everything else that comes with it, BUT I have written about my experience and how I AM coping with it.
I am still learning to survive and I know whoever is reading this, you will too. J
 
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Comments:

  1. Nancy Lord says:

    WOW….just wow. You write what I feel. It hurts so bad and the tears just leak out of my eyes. Yet, to look at me, I look normal, but with a limp right arm that has lost its muscle tone. Before this I was the ‘Wonder Woman – Mom and Grandma. I could do ANYTHING I put my mind to…BUT… I got hurt at work and wasn’t covered under worker’s comp…so a legal battle with an attorney happened and I am now covered under worker’s comp. However, I don’t have a job anymore, and chances are that I won’t be able to work again. I sit in bed propped up and type with my laptop on my lap desk with my arms resting. I use my wrists and fingers, and my right hand, arm, shoulder and shoulder blade and armpit burn like a fire is ignited in them. The right side of my collar bone has popped outwards from the inflammation. Painful. I have a high tolerance for pain and I live alone so I’ve learned not the rely on pain meds. I took NSAIDS and ended up with thrombocytopenia; the NSAIDS lowered the platelets in my blood severely. So, I’m taking neurontin but I am ‘titrating’ up with the dose because I have a low tolerance for medication. TOS has also invaded my mouth; my lips and tongue feel like they have been scalded with hot hot coffee all of the time except for a few minutes when I first wake up. I am now waiting on a scalene nerve injection of botox which will hopefully provide me with 2-9 months of pain free living. Worker’s Comp rejected it and my attorney has appealed it. Hopefully it will be approved; if not, we go for a hearing before a judge. Thank you for this FB page…it is sad that we have to endure this condition…but I hope to gain hope from others with TOS and hopefully find coping mechanisms…ice and heating pads are my current ‘go to’.

    • Hey Nancy! As I sit here on my couch with the “burning” pain on my left shoulder and armpit, I really appreciate that you took your time to read my article and share your thoughts. I know how lonely and frustrating it can be when you are trying to battle an invisible disease. But afraid not… we understand!

  2. Lovey encouraging post Sifa! You captured life with TOS very well and with a positive message!!

  3. Hello Candie! Thanks for being a part of my blog!
    I am positive you can also do these things. If I can do it…you can too 🙂

  4. I am so glad u reached out to e on Twitter. I only hope I can learn to live like this one day… Candie

  5. Thanks Laurie! I can understand how you feel!
    I still feel some pain on the operated side.. But I am hopeful..

  6. Thanks for the appreciation..

  7. Thank you Jane! You are a very motivational and appreciative person.. I feel good whenever i talk to you.. Take care!

  8. Nice job- you have a very positive way of thinking- I also try to look at the bright side- I have a lot to be thankful for and even if some TOS pain is still there after removing two ribs and four scalenes, it could be worse!

    -Laurie

  9. well said. good thoughts about pain tolerance too:)

  10. That was beautiful and uplifting!
    Bless you Wasifa. I am privileged to have stumbled across you!
    Keep positive Jane x (aka spareribs)

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