I have learned that this journey through chronic pain and illness is a bumpy one. It isn’t a process where you learn something, and then you never have to address that part again…. As time goes by and my illness evolves, so does the process…. and I find myself having to re-address things over and over again while trying to look at things from a different perspective each time. What have I missed? What did I not learn the first time? Has my illness progressed since the last time I had to face this particular issue? Have I matured since the last time I faced this particular issue, so maybe there is something different to learn this time?……. It sure isn’t like riding a bike. You don’t get back on and just know how to pedal…. it is different every time.
These past few years have been really difficult for me, and my pain has slowly gotten worse and worse. Every medication I have been on has either stopped working, or just never worked to begin with. Emotionally, I have gained many tools to deal with living this life, but physically a body can only take so much…. I was really fighting that point, and thinking that I could take it all on, but the proof is in the pudding so to speak. I have back-slid. And requiring extra help was something I didn’t think I would have to think about…. until now….
When I first became really ill, it changed life completely. And not just mine, it effected my whole family. After being misdiagnosed for close to 2 years, having exploratory surgical procedures, being bed ridden, I finally got into a place where I live called the Chronic Pain Centre. It is a government-funded, multimodal clinic for people who suffer from severe pain. The day I walked into the clinic for the first time changed my life. I walked in as a desperate girl so badly wanting to believe there was a ‘cure’ for me, and I walked out knowing that I may have to deal with this for the rest of my life. It was completely overwhelming…..
I ended up being a patient there for 3 years. I saw pain specialists, physiotherapists, kinisiologists. I saw nutritionists, worked with the pharmacists, saw a psychotherapists, and worked hard for those 3 years to understand every aspect of illness. It was a full-time job, between the ‘group’ lectures I attended, sleep seminars, reading, weekly psychologist appointments, weekly physiotherapy appointments, and that doesn’t even include the appointments I had with my Doctors….. It was a HUGE commitment. In some ways it has been the biggest commitment I have ever made to myself.
I crawled…. and then I toddled…. and when I cold finally walk on my own, I ‘graduated’ from the program and thought I was on my way to living in SPITE of all of this…. If this was the hand I was dealt, I thought I had found as much acceptance as I ever would, and I was relieved and excited to move from that program and to live life on my own terms…..
That was close to 4 years ago, and after much time, suffering, frustration, and failed attempts to manage this on my own, I had a heart to heart conversation with my Doctor, and she has referred me BACK to the Chronic Pain Centre. And I honestly don’t know how to feel about it….
Part of my is relieved, as I know I can get help there that I cannot get on my own. I won’t have to worry about the expense of therapy, and the impact it can have financially on my family. I am in a MUCH better place emotionally now than I was when I first went through the program, which leaves me to believe that I am more ‘ready’ this time around…. But I am also really sad to find myself back at the starting gate. I was hoping I would never have to go back there. I was hoping that SOMETHING I had done or tried in the last 4 years could have been the answer… my answer… and the truth is, no matter how much it hurts to say it, I just haven’t found my answer yet.
It is going to be a big commitment to make, and no doubt it will impact my family again… but I hope that the positives will outweigh the negatives. I hope that maybe, this time, they have more answers, more solutions, and more ways to help me ‘deal’ along the way…..
Is it a step forward or two steps back to have to enter this program as a patient again? I am not sure how to answer it. I guess it depends on what day you ask me that question. I feel really conflicted….
All I know is that I don’t want to have to live like this forever. And I am not going to stop fighting….
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I think you’re taking a step forward.
You will have a better understanding of the information you’re hearing this time. Really listen and take notes. Question the crap out of your doctors. You will learn something in your time there. (BIG HUGS)
I would NOT start over again, what a waste of time in my opinion. I’ve found what works for my chronic pain though, I don’t work, spend a lot of my day in quiet, occasionally with some Yoga and slow walking. That’s what works for me, for I gave up on a cure or even being pain free, long ago, 3 years ago. I take a mood stabilizer, anxiety meds regularly, and a sleep med. Sometimes what feels like giving up, isn’t. Just another opinion, I wish you well.
Hey there, you’d probably be a little skeptical if I told you I think I know a lot of how you are feeling.
When I was 15 I was admitted to the chronic pain program at a children’s rehab center and last September I had to go back. I had to go through it all over again, and when I left the last time I was so close to pain free.
I was healthy and happy, but soon after I went home things just went downhill, first family issues then more pain, and I ended up needing another surgery.
So, fast forward a couple months–about to enter college, and I end up back there, kids rehab center, chronic pain program.
It was so hard to go back, I was relieved in a way because I knew how much they helped me the previous time, and that time I fought them every step of the way. This time I was more prepared, I knew they could help me, I was a “veteran” they said, but I so wanted to put the past behind me and just get on with life.
I would answer your question with neither, I would say it is taking a sidestep (leaning forward though). When I went there the first time they mostly got me healthy again, helped me to beat back some of the pain (one way being exercise believe it or not), and they did their best to tell me that I would probably always have to deal with pain. Of course, they may have said that, I didn’t listen.
This last time I went was an eye opener. I guess it finally sunk in, and my goal was to learn to live with the pain, to learn to cope with it. I would say that it is a side step because it isn’t really taking a full step backwards or forwards, though I imagine you are leaning more forward then anything. It will get better, eventually, it always does. As they say, if it isn’t okay, it isn’t the end.
Good luck! You are truly inspirational.
–Jane from the lighthouse