Pain Fog: Living in spite of Chronic Pain
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Day 263. Take Care of Yourself and Your Caregivers. 

11/19/2015

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I'm a member of a couple of chronic pain groups and I'm seeing a very common thread. The most frequent complaint those who are in these groups have is, their families, friends and coworkers do not understand.
My response to that is, of course they don't understand. You have to live this to really get it. That is also true of emotional pain, mental health issues or a tragic life event. We never can truly put ourselves in the shoes of another. And even if we could, it still wouldn't be the same. We are all built differently, with a different set of life's circumstances to help or hinder in the dealing of it.
The argument of the alcoholic comes to mind; I drink because my father drank, says one son. The other son says, I don't drink because my father drank. Whose right about the father's influence? They both are of course, because they are individuals, and individual people respond differently to the same set of circumstances.
The same disease, condition or life event will have similarities to others who are dealing with it, but it can never be the same. We have all been raised differently to deal with adversity, and that in itself will affect the way each of us responds.
My physiotherapist was talking to me about my resilience yesterday. She complimented me on how I have the ability to keep going, to never give up. I have to say it's not the first time I have heard that. I don't give up. I have never really given up, but there have been times when I have wanted to, when I had had enough, my fight felt like it was gone. I think that scared my family more than any other thing. It seemed to be more concerning for them then the many hours I was hooked up to many machines in the I.C.U, when I couldn't walk and the many other things they have dealt with They were lost, they didn't know that person, and found it hard to help me.
My point is, you have to help yourself. You must be on your own side for others to be on your side too. That means trying things you don't want to try, doing things you don't feel like doing, and getting up and being up when you don't want to be up. Physio,exercise,chiropractor,acupuncture,osteopathy,naturopath,pain clinic,medications,meditations,massage,supplements athletic therapy,aqua therapy,laser treatments, ultrasound treatment, ice, heat, over the counter rubs and medications, and so much more. Those are the things I have tried and continue to be open to.
I have seen, a MD, Internist,endocrinologist,gynaecologist,orthopaedic surgeons, Physiatrists(rehab doctor), Respirologist, ear, nose and throat
doctor,Urologist,neurologist,neurosurgeon, cardiologist and those are the ones I remember. Our system in Canada is such that you cannot just call a specialist and go see them. It must be warranted, and usually suggested by, then referred by your family doctor.
Most of these doctors have or still do deal in one way or another my spinal cord injury. Those that don't are because of the sarcoidosis and spinal stenosis.
This is all very time consuming and usually involves travel and out of pocket expenses. The thing is, I have always felt that I had to give it my all. In some cases they have not helped much, but in others their particular expertise has been the exact thing I have needed.
I am an involved and informed patient, I listen, ask prepared questions, then decide with the doctor if a drug, treatment or new test is what's needed. Being a passive patient, leaves you feeling your life is in somebody else's hands. It already feels out of control because of pain or injury, so that's my way of being in partnership with my physicians. I have gained a lot of respect from them by doing so.
My family and friends know that I have done, and tried everything to help myself. It makes it easier for them to then help me.
My point is, if you're sitting waiting for somebody else to save you, it ain't going to happen. Save yourself, be your best self in every situation, not just when you feel good. If you do for yourself, others are more willing to do for you what is needed.
There are times in every person's life when they need others to just pick them up and do what is needed and that's okay; however if that is your everyday expectation you will be left behind.
Others become as overwhelmed as you are. They do not know what to do or how to help you. Caregiving is a draining existence if there isn't a reprieve. We need to give that reprieve even if we don't feel strong enough to do so. Be kind and respectful and most of all appreciate those who care for you.
I just watched a little clip that I think says it all, here it is.

Our greatest glory is not in never failing, but in rising up every time we fail. -Ralph Waldo Emerson.
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    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

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