Some harsh truths

 I wanted to do this post early on as I learnt some of the things ( and honestly still trying to imbibe them) was crucial to get me out of the hopelessness cycle I get into when things go really bad.


  • We are responsible for our condition and our life. I know we did not ask for this. It wasn't our fault. Even if it was, it doesn't matter. Here we are, right here, in this moment, we need to fully accept that this is our responsibility. If we need to get better, we have to own it. There is no other way. 
  • We will have bad days. We will feel down. It's ok to feel this way. The constant pain is hard enough, don't be too hard on yourself. This also means that we need to learn to pick ourselves after bad pain days ( which will keep happening) 
  • Treat every day as a new day. If possible ( though I haven't been able to internalize it yet), treat each day as a new game day. The way to win this game is to be in less pain compared to previous day, at the end of the day. Let us come up with strategies as its going to be a hard and long game.
  • If you are lucky, except for one or two ( and if we are really lucky, couple more), do not expect people to understand your condition. We have to let this go. I don't think even we would have understood it if we weren't going through it. 
  • This is a full time condition. It means that the other aspects of life will take a hit ( be it career, parenting, relationships, friendship, socializing). We need to be ok with this and need to learn to not be too harsh on ourselves. No doubt we need to get better at managing as time goes on. 
  • Your pain is coming from multiple sources. Tightness in your shoulder could be caused by tightness in neck, leg, issues on the opposite side of the body. Its not a OR case here. Good chance its multiple sources. This is one of the reason why some thing you try stops working after first few times. 
  • I have had 3 surgeries in last ten years for fractures in face and knee. The knee pain was caused by an undiagnosed bone growth within the the knee. The pain caused by it used to make me limp almost every day. That pain pales compare to this everyday pain all over the body. That pain got a break when I sat in some way or when I lied down. This pain doesn't. So don't let anybody make you feel you are thinking too much or its all in your head. 
  • We are in this for life. There is no way around it. Our objective should be to figure out a routine ( as complicated and messed up it may be right now), which we can keep up for rest of our life.  


Comments

Post a Comment

Popular posts from this blog

Self Care - 3

   If you haven't checked the previous  step , please do so as its important you look at all the possible options to manage your situation. This post I will talk about external factors and see if making different choice will help you in the long run. If you and your family members do different chores, try to pick up chores which has a little bit of flexibility on when you do it. This could be washing clothes if you have washing machine, washing dishes ( using dishwasher if available) etc.                   Couple of simple things you can keep in mind is, with dishes for example if you are washing before your dishwasher gets full due to running out of some utensils ( spoons, bowls, plates etc), get extra of those. Same thing applies for clothes too.   As most of us will have chronic neck pain and pain associated with neck issues, its important you start looking down with your eyes ( whenever possible) rather than ...
Read more

Hypermobility and pain

I was diagnosed with hsd last year which explained my last ten years of pain and fatigue.  All throughout I wasn’t sure why I suddenly got “lazy”, suddenly lost interest in my career, felt tired all the time. Sometimes when the pain was glaring and obvious I was blaming my knee injury for which I had to get multiple surgeries, ergo problems etc ( will write up about my medical history and path to diagnosis in a separate post). After my diagnosis, I have given my everything trying to improve my pain. I have been obsessed with all the details including every single thing I have been doing every moment of the day ( and night too, I will post about that some other time). I have worsened my pain with many of things I tired including some of the exercises I have been trying. But I can tell you one thing, I am in a much better shape then I have ever been in last decade. It doesn’t mean I am pain free ( and I don’t even know if I will ever be), but I feel I can continue this path to reduc...
Read more

Baby steps first

When I was trying to make sense of the diagnosis, I started to see how I was up screwing things up more in the last decade.  Pushing myself in the gym, pushing myself to play sports without understanding the after effects, taking yoga classes and trying to persist with it ( and there was my work life which needed me to be on laptop all the time).  When you are in pain without doing anything, these are like hammer on your body. There were brief moments when I felt I was getting better but it was always followed by things getting worse every single time. In the last couple of years I decided, I am going to try rehabilitating myself but it will be on my terms and my understanding of my own body. I decided I will explore different ways to tackle ( use internet, physiotherapy, my own versions of exercises, food habits, lifestyle , massages, braces etc). I keep repeating to myself that things will go wrong, and wrong it did, but I tried to tell myself again and again that the idea i...
Read more