‘I can sum up everything I learned in life: It goes on.’
Chronically ill, or not. Chronic pain or not. It goes on.
How it goes on though is another issue altogether.
What is our quality of life? Instead of ranking our pain rank your quality of life on a scale from 1 to 10. Just to think about it. Just to see if you need improvement. And How much improvement you need.
At one time my quality of life was really low. And I was hopeless because I could not fathom a way to improve it. Neurologists were giving up on me, passing the buck to someone else who also had no clue. My doctor was disinterested in my pain, which I wasn’t coping well with. I was depressed due to the pain quite a bit and fell into a Major Depressive Disorder. I had no life. Just crawling through life by inches. Survival mode.
Clearly I needed to improve my quality of life via:
- Pain management
- Treating the depression
- Adapting my coping skills.
And in order to do so I needed to:
- Find a primary care doctor who would listen to my concerns
- Find a neurologist or pain clinic who could develop a treatment plan. In my case, a pain clinic and a neurologist.
- See a psychologist who specialized in pain patients.
All that needed to happen for my quality of life to improve, because my pain and mood improved and then as a consequence my coping skills improved. And I had a life with the pain. I had a social life. I have a work life. I was able to adapt with the pain.
So if we see major gaps, we need major solutions. And they are not easy solutions by any means. And they can take so very long to get organized and to get any progress. But anything, any direction, is better than where you are at. You feel like you are going somewhere at least. And then slowly progress happens. And you add to that progress yourself as you adjust.
Sometimes we see minor gaps in our quality of life. Like we know we are isolated and need so socialize more, but we are intimidated by the pain. So we have to figure out ways to expose ourselves to limited socializations we can handle that decrease isolation and boost mood, but do not exceed our limits. Something we know will improve our quality of life.
These are things we know we should do, are no easy feat but we can set them as slow progress goals for ourselves. It can be something like needing to change a doctor because we know we are not getting the right care. To knowing our pain management is not sufficient to function, and trying to find someone to understand in order to function properly you need effective pain management and strategies to do so. Not an easy feat this day and age. To trying alternative therapies because you want to improve one or more symptoms in addition to regular treatment. Or a new lifestyle change of some other sort, like a new health diet. Some of these goals we know could improve things slowly and surely over and above a level we are at, that isn’t quite sufficient.
And we know, life goes on.
The horrible thing about chronic illness and chronic pain is that at its worst it utterly destroys us and we cannot function. It puts a complete hold on life. And there doesn’t seem to be anyone in the medical community to understand this or really want to help us. With our immense frustration and despair. Everything crumbles. What we built gets destroyed. And life goes on, but it isn’t the same. It is a battle to exist. We have to fight for pieces of life. And I have not met a doctor yet that comprehends that. The world stand still. And stagnates. While everyone else’s world is blurring away from us. We feel mired in it. And of course, we want to particulate fully in our lives again, but that requires a massive amount of change in the right direction. And that took me 20 years to get to. Not saying others can’t get to positive changes a Lot faster than that, but some of us respond less to medication, have more indifferent doctors… and just fall through the cracks.
We have to take a damn fine look at our quality of life. Our medical professionals. What we ourselves see as goals. And attack it. Step one being finding the right primary care doctor to fight With you. You get nowhere fast with a doctor who cares little for your suffering. My list involved changes I needed to do, with the help of a good medical team. I could not have accomplished them otherwise. Not to mention proper medication. Then the rest was on me, for coping strategies and alternative pain management.
But I feel like we are so lost when our quality of life is low. We are hopeless. We are beaten down by the lack of support from the medical community. Used to getting nowhere. Expecting nothing. And so very tired of fighting. But people do get somewhere. People do have successful treatment, or better pain management, anyway. And there is a glimmer of light at the end of the tunnel for better management. It is worth pursuing because life is worth more pieces. I want us all to have more pieces. And we all deserve quality of life. A doctor that doesn’t care about that? Needs a new job. Maybe insurance?