Today a conversation I had with a friend made me really look at how drastically my life has been impacted by my illness.
I wrote in the past about my disease called interstitial cystitis that flared up when my best friend died. Unfortunately, it has not improved and possibly has even worsened over time. I don't plan to go into specifics but to give the audience an idea of my life it basically feels like a UTI 24/7 and it is incurable. I have to pee sometimes every 10 minutes and the pee feels like razor blades and glass. It impacts every part of person's life.
So, that's enough of the gory details what I was struck by when my friend wrote me to excitedly tell me about her plans to go to Norway with her lover this Summer is how different my life really is from another healthy person my age. Let me say first off, I am so happy for her and she really is a great person and deserves every ounce of happiness the world throws at her which is why my reaction to the news broke my own heart. I didn't react "to" her. I told her truthfully how happy I was for her and that she deserves it but I couldn't very well act like I understood or get excited about places she should visit or really live the experience with her because I had only an hour earlier been sobbing in my kitchen about how I would possibly keep paying bills when my body has betrayed me to the point that I can't work a regular job. I just felt, at that moment, like I was living in such a different world that I couldn't relate.
It is so alienating to be living in such a different world than my peers and I can feel myself slipping farther away.
When you are severely ill in a way that you can't even go outside or use your body normally it not only takes a toll on you physically but it takes a toll mentally as well, a huge one. Depression hits hard and you have to remap your entire plan for your life and lower all expectations for your future, or adapt them at the least. I can no longer plan this active future full of travel and socializing. I now have to plan everything with the knowledge that I may be primarily confined to a bedroom for most of my life. This makes it much harder to relate to other people and also obviously can make a person depressed.
People don't want depressing "stick in the mud" friends.
I try my hardest to not rain on anyone's parades to myself because I understand that people don't want to constantly hear about what I can't do when they are trying to express joy for the things they can and are doing themselves. I am sad about the hand I was dealt but I don't want this to affect my ability to feel happy for the people I love. This results in a lot of people "forgetting" I am ill at all and suggesting many things I can't physically do which can become tiresome but is better than unloading on the people I care about constantly . I just see myself becoming envious of my friends and resentful not toward them but toward the unfairness of life and society in general.
Digging deep to find the silver lining
I have really dug to try to find some silver linings in all of this and I guess I have "settled down" a bit and adapted a healthier lifestyle diet-wise. I also have much, much more time to make art. The biggest change I think is that I have become more humble and I have become a better listener. I have also worked on myself a lot internally because being isolated and having to adapt to a new life that may involve a lot of alone time means you either break down and die or you do some serious soul searching. Ultimately, I want to be happy regardless of how broken my body is and that's what I am working on. It isn't happening overnight partly because I HAD a working body and it was ripped away from me unexpectedly. So, I feel I am grieving the loss of the life I had planned.
I am not sure what the point was in writing this blog. I guess I just had been bottling a lot of feelings up and they exploded and I wanted to express them in a somewhat productive way or perhaps another chronically ill person could read it and relate and feel less alone. Who knows? I just wanted to shed a light on the serious rift that exists between the world of able-bodied people vs handicapped people and the rift widens when the handicapped person also falls into poverty and debt because they cannot work. It's something that many people don't think about because it doesn't affect them personally. I can't say I spent a lot of time thinking about how life is for seriously ill people before I slipped into that category myself so I get it.
I don't need health advice in the comments but I would graciously accept advice fro mother sufferers on how they maintain an optimistic disposition and avoid their illness negatively impacting their relationships. :) And a word of advice to other sick people would be to try to keep things in perspective and remember that other people's misfortune is entirely separate from your suffering and try your best to just be happy for your loved ones. Also, learn to adapt your lifestyle and try to find joy in new ways, even if small ways. I will probably write a more inspirational/helpful blog about how I manage my illness tomorrow because, for the most part, I maintain optimism and some level of happiness.
**all images from pixabay
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PS - I deleted my main facebook account and now just have a tiny one for keeping in touch with a few people so I will likely be steeming again regulary. :)