This year I have devised a new plan with my husband. I have been developing this idea for weeks now and it is taking form now in my mind. I want to try a change of tactic this year – as it is now a decade since illness overran my life and changed us forever.
I guess this the ten year anniversary for it all.
I had decided I want to try and economize on doctors/specialists appointments (unless there is something critically wrong or changed) and I would like to have all the specialists in one area/hospital and visit some of them on the same day, yet sparingly.
I intend to cut back on any unnecessary medications or meds that I am not sure if they are making a real difference or not.
I plan to slowly wean myself of some of them and see if it makes any real change to my general health, and if it doesn’t then I intend to slowly stop them entirely.
# Before I get comments about this … yes I have indeed shared this with my GP. We informed her on Friday.
I simply don’t want this year, or the next ten years, to be more med trials. More pain and side effects. More questions and no real answers. More merry go round. I do not intend to spend the rest of my life pinballing between doctors, tests, scans and specialists… so my plan is to self manage even more!
I think I have seen and experienced most of the scariest and most painful things by now. I don’t believe it gets more scarier than not seeing, not being able to balance, not breathing easily, not feeling your limbs and feeling like your bowel will explode!
I am pretty shock proof these days … And so is my husband.
I have accepted that I must live with a lot of pain and struggle for the rest of my life and that was probably the hardest conclusion of all to reach.
You see I have been trying to lessen these burdens over the past ten years, but no matter what I do I can’t seem to live without pain and a mass of other issues and symptoms anymore. I just have to accept this.
so now I want to focus my attentions on my husband, my furries and other interests for awhile. Focus on giving them more of my life when I can.
With everyone in my life we have settled into a state of ‘it they don’t ask then I don’t tell’.
People seem far more preoccupied in their own lives these days and I now have whole conversations devoted entirely to others. This is generally how all my conversations are now and I have become very used to it. I have become strangely comfortable about it now.
I have retreated from a lot of the online groups where I tried to spend time in and support others… a lot of my energy has been spent by over committing myself to all these groups and leaving me very tired and unable to do anything else.
I am at a point where I no longer care what the world thinks I should be doing. I am nearing a peace with who I am now. I no longer belong to the world of the busy, able bodied, go getters and regular people… and I am starting to feel ok with that now.
I know some will read this and find it strange or some might feel I am giving up. They will form their own opinions but ultimately it’s me who has to be happy with the life that I will have, not others.
For a long time now I have been desperately looking for ways and drugs that will allow me to re-enter everyone’s world. To fit in with themagain. To be what I was again… I realize now that this is what I must stop doing.
Because this life requires that I devote my time managing my life and my challenges … and yet still try to take opportunities to enjoy some of what life has to offer; if and when I can.
This means I can’t be trying to fulfill others expectations of me or keep trying to be the person that I was. Not now. And perhaps never again.
To our credit, for all these years we have asked very little of others and have not expected help from anyone that didn’t offer it freely. This means that we have been on our own now for a decade. The only people who have assisted us are those we pay to do so.
We should give ourselves full credit for coping all these years… More credit than we do anyway.
Over these past years we have changed our lives entirely. I no longer have a career, my husband had to retire to be my full time carer, and we have made many changes and modifications to our lives (and home) so that they are almost unrecognizable compared to what they were. We are unrecognizable now. Our character and personalities have changed dramatically too.
It seems strange to me how most able bodied people assume that the chronically ill and disabled are burdensome and an annoyance. Always complaining and embarrassing. This is nothing like the reality we have witnessed time and time again. With very few exceptions, most chronically ill and disabled are the ones who are silent. They are the ones not complaining about the minor annoyances of life. They are the ones who keep their pain and their challenges to themselves, despite the daily struggles just to survive… All the while showing a brave and unfaltering face to the world. Unlike many others out there with fully functioning bodies and lives.
It is this resilient and unrelenting spirit that makes the chronically ill and disabled some of the most remarkable people in this world. More remarkable than those that dominate the media and the social landscape.
I have committed 100% to this new plan and I am hoping that there will be some peace and different opportunities inside it. Although there may potentially be more hurdles ahead, I feel a sense of assurance knowing that, once again, I am willing to try anything and everything in order to enjoy this one life I have to live.