http://www.meaction.net
I try so hard to remain upbeat, to live a worthwhile existence regardless of my health limitations but it has just dawned on me that I will probably never have a job that gives me any satisfaction, social life, hobbies, friends etc and I may wake up for the rest of my life in pain, tired, nauseous etc.
I don't know where to turn now and I don't know how to accept this half life, this life that is often torturous and a life that has slowly but surely eroded my self esteem and worth and everything I held dear to me.
If you are healthy but not happy with your life there is so much that you can do but I feel trapped. I see life, want to grasp it with open arms and never give up trying to change things but what happens when you hit a brick wall every time? every. single. time
Hi.I'm sorry you are afflicted w/ this plague. It sucks.
I've been at a while -- going on 30 years mostly in bed, always in pain. Treated horrifically by some. Just saying so you know my experience a bit.
I don't know how long you have been ill, but it sounds like you are not coping well and could use some tools. There are many ways and many choices and it is usually a mixed soup w/ maybe one way more prominent than others.
You say that unhappy healthy people have "so much that you can do" .
So do you.
First there is the external items:
~Externally, having a good support system ( like us at PR ;-) , find some fellow suffers closer by that you can connect to and talk with. A doctors office, independent living center, a support group meeting ( for this or really for any chronic illness w/ similar challenges-- like MS or Lupus -- I find people are welcoming even if your dx is a bit different . Get a phone buddy for the days a forum or meeting is too much or not available.
~ A good medical team. Again, this may be limited by where you are at. But even if you can find a dr. who is open minded and willing to read that's a great thing. Maybe you can afford to travel to see an "expert"
~Educate yourself on this plague best you can, brain willing. If you don't care enough to learn why should anyone else. Offer to share this knowledge w/ those around you who care and are willing. They may not want to read up on studies, but the might be interested to know that there was a fantastic announcement by the NIH lately. Stuff like that.
~Consider Advocacy. You can be a patient advocate from your bed. Here, FB, Twitter.
MEAction Networkis a central place for lists of advocacy projects. Make one of your one. Put up a screening of "Forgotten Plague" documentary. The list goes on dependent on your personal abilities and desires.
~ blog or journal for you or to share.
~ a cat is a wonderful companion to care for. If you can't afford a pet, but have the space and energy to care you could foster a cat or two for your local shelter. Most adult cats need food and a safe place and a little TLC. Low key. My best friends on this journey.
~
Well I'm sure I could come up w/ others but that's all my brain will allow for external list for now. Perhaps others will add to it.
The Internal choices :
Here's some thoughts/ choices/ whatnot that helped me along the way.
I used to define myself by my work, and what I did and all that you listed above. In fact I considered "independent" to be one of my defining traits. ha. I learned to see that I was more than that. We all are. Making a choice to redefine myself was a good place to start.
And that there are things, so amazing and beautiful that they are more important to me than this disease and it's many tortures. Bounding that, "Thing of Beauty" ,as Keats would describe it,to myself. It may be different for everyone. You can make a choice to look for it, for your something more important and use it.
It's not easy to do. But for me, it has been more than worth it.
Yes, I still have bad days/weeks, but I know they are in passing. They are feelings that are normal that need to be embraced and experienced and then let go.
Some people I know try to block this out. A bit of numbing of the pain of this awful experience. If you choose this method, you should know that if you block out that bad, you will also block out the good. It can be used as a good temporary measure though. As long as you control it and it doesn't take you over.
The same w/ a bit of denial. It can be a good thing as long as it is used in small measure and you are in charge of it.
If you feel something own it. Feel it. It's ok to be sad, to cry and to be angry. Give yourself permission to feel down. To have days like you are having today. It's healthy. But don't let those feelings get you, anger is exhausting and it doesn't change anything for the better. And feeling down can start to own you.
Feel them, express them in a safe way and let them go until they come round again. And they will. But you have the knowledge that you can get through it. You have already.
Get some help on this journey. Coping is not something that you do and it's done check it off the list kind of thing. It's ongoing and dynamic. A good counselor ---yes there are those( at least here in the US) that understand this is a serious illness and will help you on your journey -- w/ coping skills , support, validation, etc..
My brain being what it is, is fried. I hope I haven't made it sound too simple. IT's not. It's hard work. All of it.
But worth it. And there are many little lights shining from the end of the tunnel right now research wise. Keep a candle nearby ( don't leave it lit when you are sleeping or at all maybe) just to remind you of that.
In fact lots of little things around you to remind you of what is important to you help.
Best,
