What I am about to say is my own personal opinion and decision. It is not meant to be advice or recommendation for anyone else, sick or well. As I said, it is a personal account and record of my own decision and that of my husband…
Now that the formalities are over, on with the show…
Entering a new decade of living this Chronic life with several Autoimmune Illnesses (and various other issues) I decided to make a life choice about the next decade and I am feeling both excited and apprehensive at the same time.
I have decided to do a last round of the several specialists I currently visit and do my best to ‘manage’ and then I plan to execute my latest plan for ‘living off the grid!’
Living off the grid is a new catch phrase, which if you haven’t heard it by now, means you are entering a life of living self sufficiently and without use of the many resources we have all come familiar with. This might mean relocating. It generally means giving up a few luxuries and conveniences. It requires living off the readily available resources (solar power, wind power, water, growing your own crops…and so on). There are degrees by which people decide to go ‘off the grid’ from simply removing themselves from a ‘grid’ provided power source which the coal companies and electricity companies are eager for you to enjoy, to going ALL OUT and becoming completely self sufficient in a secluded and isolated area where you will have to find alternative sources for many different utilities and conveniences (including internet and phone).
The way that I intend to go off the grid is that I am going to carefully and selectively ween myself off some of the drugs, doctors, checking and constant monitoring which has only served to exacerbate my condition, weaken my spirits, and send me constantly ping ponging from one doctors appointment to anothers.
I think that the past 10 years have revealed how truly self sufficient I have been in managing my life and challenges, and it has also shown my what things have proved pointless and very underwhelming. I am no longer seeking a cure anymore, now this next phase is all about the quality of life…
This idea first took seed after a recent visit to the MS Clinic where the good doctor informed me that “…at this stage of disease progression there really is no ‘medication’ to contain or lessen the effects of the disease, now it is our focus to try and ‘manage’ the symptoms as they come and as they worsen…” I am usually quite a resilient and logical lady but that one knocked the wind out of me!
I thought of nothing else on the silent and very long trip home…
You see, I am not angry or bitter at the good doctor, just hearing the words spoken out loud made me think. It made me think HARD.
He also mentioned things like “…you have already had some very serious immune suppressant drugs which made you very sick from the side effects, but did not actually improve your overall position that much… so I am hesitant to keep throwing drugs at you in the ‘spray and pray’ approach to Autoimmune Diseases…” Again, it was harsh but logical advice.
So when I finally spoke to my husband and GP about it all I said to them, “I have lifted a lot of rocks, thrown my share of dice, and spun the wheel enough times… I am going to stop playing now and start trying to live. Finally start living more of my own choices and decisions”
How that will look and where it will lead us is all virgin territory now. It is evolving and forming along with my health ups and downs. But generally speaking I hope to.
- Self manage as best as I can.
- Continue to take the drugs that do seem to work (sadly, Pred and MTX is still on that list)
- Remove the drugs that only knock me over for indefinite periods.
- Maybe remove myself from the various activities that have kept me busy but distracted from enjoying whatever time I HAVE for me and my hubby.
- Try and remember the things I liked and redefine what I am and what I am capable of doing now…
- Stop pushing myself to be the ‘good patient’. Let the doctors and specialist prove their value to my management plan or walk away; thankfully and appreciatively of course!
- No more absolutely unnecessary tests! I am too weak!!!!
- No more trials… Someone else can be the Guinea pig.
- No more trying to satisfy others and what they think I should do… LISTEN TO ME!!
- Accept that whatever happens from here on in will play out as it does. I will accept the consequences and my part in them.
So now you know…
Hubby and I are going through the motions now of how to reach these goals and all efforts are being made to those ends.
If I disappoint others by being less accessible, less available, less cooperative and much more self directed… well so be it!
I looked at my husband the other day as he was rubbing my muscles from a nasty Spasticity flare and I realized that it is mostly because of he and I that I had made it this far… so how could going off the grid mean any less to our lives?
Again, this is MY choice and is not meant to be taken as advice or medical recommendation for anyone else.
I kind or liked writing… “MY choice!” 🙂 It felt good! And I realise I don’t say it often enough.