I have no answers today, no deep wisdom (I don’t think), only a seeking mind on how to perceive life as it stands and on expectations for the future.
I was thinking that our hopes and dreams are built on a foundation of what we feel is possible. We do not tend to realistically hope for things that are not in the realm of possibility; I guess if we do we call them pipe dreams. But when long term illness and passing years rob you of the possibilities that are still reachable for a “normal” person, how do you dream? What does Hope look like now?
Of course the first dream for anyone that has been sick for a long time is for health, and of course health is the gateway to everything else we want in life: relationships, activities, happiness, success, travel, family…LIFE.
Now chronic illness looks a little different for every individual; For myself I am immensely blessed that I have come a long way in my (5?) years of treatment since Lyme diagnosis and there has been a lot of improvement. But the struggles continue and I may continue to struggle with autoimmune and other conditions for the rest of my life. So as my “younger” years continue to diminish like a fading horizon line, I am wondering how to rebuild hopes that are now built on a different foundation of what is possible.
I had an emotional reshaping of my hopes with this last downturn in health (Relinquishing hope), and a lot that I had been holding onto for many years got torn down. I have been living in that place of rubble for several months now and I guess I am questioning whether rebuilding the hope tower is worth it. Of course it will look very different than before and be much smaller, but right now I’m not sure what to build it with. Or should I? Is that my job or God’s? Honestly I’m at a loss. I have never stopped believing that my future and hope is in God, that He has a reason and purpose in everything He allows in my life, but what His plans are (obviously) are vastly different from anything I ever envisioned.
So here I sit on a Sunday afternoon in an empty house with a silky terrier puppy for company (who is under my care for the weekend), feeling quite lonely for some reason and pondering all of the above and maybe letting myself cry just a little. I am looking at turning 38 the last day of this year, and the years don’t slow down. Life for the chronically ill is like a treadmill; running in place and never getting anywhere but expending energy all the same and there is no end for exhaustion.
So friends, as I have said goodbye to children, to love, to independence, to fulfillment, to financial stability, to success, to travel, to normalcy, and all the perks that come with those things…. how and with what do I rebuild my hope tower? We shall see.
My Color Is Lyme 
It is only my humble opinion, but hope is seriously overrated. It can sometimes lift you to the level of unrealistic expectations, and for me unfulfilled expectations feel like a total and complete failure. I have several life experiences when I put everything I had, heart and soul, worked really very hard… and no results, or results were not what I have envisaged. It have happened with my work, with my health when I became ill many years ago and when my child grew up. It is particularly hard pill to swallow when you are active, productive and goal oriented person. For me the most difficult lesson to learn was the understanding that I can’t organise, control or master everything around, no matter how hard I tried. Having no expectations came upon me somehow, and it released me from worrying too much and feeling terrible about myself. Having failures or being sick does not change who you are deep inside. You are still the same person who has to deal with a set of very difficult circumstances. But it is your life, and as long as you can function even on a minimal level basis, it is life, where chronic illness gives you a new perspective and opens different opportunities to enjoy and savour what you have. The most profound enjoyment I still remember now was to have a nice cup of tea watching my favourite movie after recovery from another bad flare up, when you still very weak, but know that the worth is over and the reprieve is coming.
I have read once many years ago in a simple women’s magazine that all you need to have a happy and content life is to have something to do, someone to love and someone to care for. It got my attention and I thought about it many times, in essence no matter what ywe do all your lives have only these things, the rest is just wrapping.
Wise words. Thank you so much. Maybe hope can just be an open door without expectation attached and just wait and see what walls through? 😊
Completely agree, wishing you all the best Jeanvieve
Dwelling in the moment keeps me from the reality of the overall trauma of illness, should I step back with the eyes of the world. That is, feeling the sadness should I acknowledge the trauma would make my dwelling heavier. So this past weekend I handled it by grabbing a moment here or there of quasi normalcy. That gave me a little energy even though it triggered seizures. The day passed anyways. Today is a measure better. And this yellow ginger hibiscus tea is really good. I think I will dwell here for 2 moments! Love you gal. :J
Thank you Julie, love you too
Hi Julie, just to say I have lyme too and it sucks… I totally understand you. But, there is hope. I feel sooo much better now than I did a couple of years ago. For me it has been antibiotics for a while but also diet and some supplements (not loads of them, I keep trying and changing). Monolaurin I found particularly good, and also high strength Curcumin for the inflammation. Also lots of fruits and vegetables, no gluten, no milk… There is a book I really liked, Medical Medium, it is a little crazy but it’s a totally different perspective of Lyme and I think there maybe some truth to it as I had and still have EBV extremely high (I have no relation to the publisher or author whatsoever). Best wishes and good luck to you.
Thank you so much for your words of encouragement. I am actually having some better days recently, and thankfully the Lyme itself has been in remission, it’s all the autoimmune and other stuff that seems to be the final battle….
I am so glad you are doing better.
And yes, I am on a strict autoimmune paleo diet so no dairy, no gluten, no grains, no soy, no… (many other things). Also done the Monolaurin and Curcumin and a plethora of other supplements 🙂
All the best to you.
~Jennifer
Have similar struggles. I had carbon monoxide poisoning in 2003. But my health collapsed long before that final blow. My health has been a nightmare since 1983. Was a violent crime victim. Got PTSD from that. Within a year, got incredibly severe insomnia (sleeping maybe 1 – 2 hours per night). Took a year or two, but that did in my immune system. So, anyway, been in this struggle since 1983, entering my 34th year of all this. I can say a few things about goals, world view, etc., through all this stuff. Be flexible, be open. Don’t be hard on yourself. Some days, the goal is to just get through the day, somehow, any way. Doesn’t have to be bigger than that. You are writing. So, you know, that always opens up possibilities. I used to perform on the spoken word scene. Also did some stand-up. I did all that through my illness. It certainly made the work much harder, but I was able to accomplish some things. I took a shot at a novel, but my concentration was not up to it. If you can write, certainly there are a whole range of options open to you.
The second we are in the imagination (oh, you know, say, trying to create a setting for a short story), we are free. In the imagination, we are in other thoughts and the thoughts of our illness and limitations, don’t really exist, for that time.
A lot of us long term ill folks will utilize the imagination…simply as a break from the day. Others go farther, like with the Gupta Programme and try to visualize themselves as perfectly well, in order to promote positive thinking (and thus, positive brain chemistry).
So, for the writer, that certainly has promise.
Hope for the best, be prepared for the worst.
The Hindu saint, Sri Sarada Devi used to say…be like the earth, willing to bear all…
to me, my take from that..is that, if, in mind, you, like a soldier, are ready to bear whatever comes….then your don’t torment your emotions, over and over with expectations that become “failures” and then crush us. You know? That is one of the worst things, when you think things are going one way, then it turns out not to be so. So, you know, be like a solider, ready to bear whatever comes.
sorry that you have been through so much and have suffered so much.
hang in there.
take care