As I “struggle to juggle” so many things this month to get ready for a major family vacation to Europe, complete three big design projects, work on my own projects that are so important to me in the studio and my business, deal with the early stages of getting our house ready to put on the market, face one last surgery upon my return as a result of the ongoing double mastectomy from breast cancer in 2011 all while dealing with lower spoons, pain, migraines and other issues than even normal I am almost glad to have the distraction of once again taking time out to write for Invisible Illness Week.
That old familiar feeling washed over me in the past few weeks of being completely overwhelmed as well as feeling judged by others, which I thought I had mostly overcome or at least the judgment part. A few years ago when I put myself out there about my illness and started this blog it was because I had reached a point of strength where what others thought about me was no longer that important. I wanted to reach out and let people like myself know they are not alone and they do not have to hide. But I think it is normal to revisit these feelings from time to time once you reach that point as I have. Especially when people make comments to me that do not sync with their previous attitude of understanding where I am coming from and it hurts or takes me by surprise. I think when people see me at times of functioning as “normal”, even if they understand and know I have such an illness, they may subconsciously forget. Perhaps they get used to what they see or feel is “my old self” and they think you are either better or getting really good at ignoring your illness so you no longer have the burdens you once did. There is nothing worse to me when I actually have to remind them that no…I really sincerely cannot do anything today. I really do have to take care of myself and I do not have a choice. This is not often but it seems since this past winter and spring it happened on more than one occasion and left me just a tad battle scarred on the heart. And that is something I obviously want to avoid because it just contributes to my health in a negative way.
I started off this late spring and summer having a few more spoons to enjoy getting together with friends and family, which was really nice. But as the summer moved along into early fall and the work and other obligations started to pile up, my spoons began to waiver in quantity. I had to cancel several plans in the past month that I was really looking forward to. But that is just how it is. Most of the time I can live with that “background noise” I mentioned in a much earlier blog from 2011. But I also know if the background noise is getting too loud meaning my pain, fatigue and other symptoms are starting to be more pronounced and I know I have to be extra careful. I have to have the energy to get through work and the basic things so that I do not become sicker and wind up in bed or not being able to do the big things my family and I have planned for so long-like this trip together. And planning such a big trip with my illness and all the responsibilities that come with it has me a bit snowed under despite months of planning, making lists and research.
So…other things are just going to have to take a back seat for a while so that I can get the most out of this trip and give myself the gift of peace of mind that hey, once again, if I am upsetting anyone due to my lack of time and participation that is just going to be the way it is. Those blogging or joining invisible illness week for the first time might be thinking…how am I doing all of this? I can tell you it is not easy. About three years ago, if you had told me I would be managing things a little better at least for now, I may have not believed you. And I still have a long way to go. So if you are joining me now please take heart…this is where I am now. Does not mean I do not still spend those days in bed or those weekends in my pj’s resting and working in my studio just to spare a few spoons. I just know well enough now what it is I absolutely have to do to participate best I can in my life. And take care of myself…without feeling selfish. Because as I originally said on this blog when I started it, if I do not, I am no good for anyone else.
I choose to: “LIVE MY LIFE”.