Although these have been some very taxing few years it has also been some of my most productive times in this past decade. I have really been incredibly surprised by these two almost opposite emotions. Some days I feel them both simultaneously and on a huge scale.
I am amazed how different facets of our lives can go in almost completely different directions at exactly the same time. It doesn’t seem possible, but it is. We can feel our physical worst and yet be emotionally strong and stable. And visa versa.
Whilst healthwise these years have been a painful decline, however, on the productivity and accomplishments side, I have surprised myself at how much I have been able to achieve under these harsh circumstances… It goes without saying that none of this would have been possible without the stoic devotion and efforts of my husband. We have had to be a powerhouse at times. In all that we do and all that we have done over the past decade, we have done it completely alone.
The greatest lesson that I have been reminded through all of this is that everything always has a price, and often the very real cost is even more valuable than mere money.
There is nothing that I do that doesn’t come at an excruciating price. If I draw or sketch for friends (and the upcoming art exhibition) I must pay for it with months of hot, stiff and aching hands; I will struggle to lift things and even struggle to feed myself. That’s the price of enjoying my art.
If I sit up planning the renovations and overseeing some of the designs I will pay with the most severe exhaustion imaginable. I can even find it hard to breath and move.
Yesterday I wanted to enjoy some sunshine while we are experiencing some sunny days and today I am bedridden as a result. My moments in the sun carry a very real price tag. My husband pays them with me with his care and nursing.
During this past year I been amazed by the transformations that have taken place and the projects that have been started, ongoing, and even some that are completed. It has felt like such a real sense of purpose and I am able to see something tangible for all my efforts and struggles; and of course my pain.
Sometimes I question whether I have done the right thing in taking on so much, but for so long now I have felt a strong urge to make some changes and break away from the normal struggles of each year. I hoped the house renovations would bring change and renewal to the constant routine that has been my life for the past decade or so.
Living in the same environment and seeing the same things day in and out has felt like an endless repetition. I needed change.
We have been unable to travel or holiday due to real health restraints, even driving locally has been difficult these past years, so change and experiences have been difficult to come by. This is so painfully overlooked and under appreciated when we consider the lives of those who are house bound and bedridden! It is a cruel and heavy burden to endure. I have long craved some novelty and feel connected to this world. The world has felt as though it happens outside my gate, which is a mixed blessing in itself! What protects me also confines me. A real dichotomy.
Trying to breath some life back into my daily routine has been both punishing and rewarding. My mind has been developing and refining ideas for many years now. Putting those ideas into some physical manifestation has been a real accomplishment and there are times I look back and think how on earth has this been possible? At the same time I have also thought why on earth have I attempted such immense challenges?
This year has flown and although I am nowhere near where I had hoped to be and things have been fraught with problems and setbacks, I have tried to focus my mind to getting to the end and reaching some of those precious milestones, eventually. I can’t afford to give up now!
My body is showing the effects of all that I have undertaken and as I write this I am in the midst of yet another flare; painful and debilitating.
The added pressure has also strained my husband and I and our relationship at times, and that has been the most disturbing factor of all. I can only hope that it will be worth it in the end, for us both.Unlike the slow and frustrating decline of my health, these projects have offered my life some real outputs for all my pain and suffering and it is therefore so valuable to me at this time. We all want something to show for all that we go through, the chronically ill are no different, we just have incredible obstacles for all that we do everyday. It is assumed that the chronically ill fit well into the lifestyle of being home and not able to achieve as much as they did, as though our lives were some extended holiday and sleep in. Milestones and accomplishments are of no importance to us… I can’t speak for others but I can say without hesitation that nothing could be further from the truth for many of us. It is more like sheer hell to those of us who loved the active and dynamic lives we once had. No crueler prison could be built than the bodies of the chronically ill!!
Which is why I now look forward to that wonderful day when many of these projects are finalized and I can enjoy the fruits of all the hard work, effort, tears and pain, however something tells me that despite everything I will have gone through and suffered, for every moment of pain I lived through… I will want to do it all again!