accept my chronic illness

I have this done. At least, for a while because I guess it’s a cycle and I can see where that’d be true. So, we’ll say “initially accepted”.

Falling chronically ill has taught me a lot about myself and about life. I heard a lecture once that said that chronic pain turns you into a monk (or nun) if it’s bad enough, and forces you to turn inward. I’ve found this to be true- once you fall ill like this, you have to listen to your body. You have to learn what is important to you, what your priorities are because you might not be able to do a lot of superfluous things along with what is dear to you or that need done. And when you turn inward, you might find things that need working on- and what else can you do besides work on yourself and the most needful outside tasks? In my experience, not very much. But that’s ok.

I’ve learned to be more accepting of what I can and cannot do but also to be more accepting of what others can and cannot do. It has taught me that I deserve to be supported and treated with kindness and that I need to try to find more compassion for others. Basically, when you hit rock bottom, it lets you implement a lot of changes that you otherwise wouldn’t do- because what have you got to lose?

For me, the hardest things to accept were: The unwillingness of my doctors to help me manage my pain and the almost total lack of compassion they have when you don’t respond to treatment. I’m not saying all doctors are that way but all of mine are/were. The second thing, and the one I think that hurt me the most, was the severe breakdown in my support system. There are/were two people in my life who I was hoping to be able to count on for some support- one was/is too uncomfortable to talk much about it at all and the other was callous about my feelings and didn’t even try to be compassionate when I told them about my thoughts of suicide. It was a blow that I’m still not over but if I can accept this illness, I can accept anything- given enough time.

This has taught me that I’m stronger than I thought. It has gotten me to begin to stand up for myself. It has made me address some of my bad points but it has made me see my good points as well.

I am wondering if I can call this one finished or not.

I am no longer mad at being ill but then again, I am no longer in excrutiating pain often, if at all. I have accepted that I have to live with another illness, that it’s not going away, and I’ve changed my life so that it works better or around my new limitations. However, I worry every now and then that perhaps I have not really accepted it and that I’m only cool now because I’ve found a way to significantly lessen my pain. I can truthfully say that though I was at peace there finally even though I was in pain, it’s easier now because I’m not in as much pain.

I’ve accepted that there are people who are going to be asshats about my illness whether I educate them or not. It doesn’t mean I like that they’re going to cling to their ignorance but I acknowledge it and can keep away from unsupportive people.

I’m doing what I can to minimize the symptoms of the illness, which makes things easier to accept. So have I actually accepted the illness? I think I have but I don’t know if I trust myself enough to be sure.

I’m hoping that someone will read this because they might find it helpful- Right now I am using this meditation and lecture I downloaded from audible.com:

Break Through Pain

It is helping me to see my pain in a different way. In the very brief- the speaker is a Buddhist monk and also a professor of mathematics and physics who came up with this practice because of the aches and pains associated with long periods of sitting meditation. He teaches that even though we experience pain, we can break through the suffering by being mindful of the pain cycles and going into meditation when we have pain. He also teaches that once we can pay attention to the cycles of our pain, that we can use it to become more mindful and that it also clears karma.

I was sceptical about the practice at first but after trying to view pain in the way he suggests, I find that I can handle my chronic pain a little better and I try meditating before reaching for my prescriptions. I’m not advocating refraining from taking one’s meds if one needs them- he specifically says that you should listen to your pain and medicate as needed- and not to feel guilty about needing medication.

If you get a free trial of audible.com, it is worth looking into. I have not completed the lecture yet, so I can’t say if I would have gotten it if I had had to pay for it ;) I had three credits from a card I got with my MP3 player

I’ve found myself getting less bitter. I’ve been actively meditating on the anger I’ve felt as a result of this illness and questioning myself as to why I feel this way.

I’ve come to two realisations: I’m pretty much at peace with this whether it is cured or not, even when I’m in a crapload of pain. Why? Because it’s part of me now whether I like it or not. The second realisation is: I’m only honked off now when people make hurtful comments about my condition. Unfortunately at this point, one of these people is a good friend. I’ve asked for clarification on this.

Right now I’m thinking that it is perfectly natural to be upset when people say stupid things (not uneducated or ignorant things, I can handle the uneducated) about my illness or the way I’m handling it. Such as- ‘Get some antibiotics and get over it,’ or ‘It’s not exactly rare, what you have, so you should be able to deal’. I don’t like to be told how to deal with my illness- mentally- I don’t want to be told to roll over and play dead when people are being hurtful. That’s not healing.

I’m learning right now to stand up for myself. I’m learning to keep from dwelling on past insults. I’m learning not to be moved by others tripe.

So. I have Interstitial Cystitis.

I am very angry at this point because I believe that if my pain were better managed, I would be better able to come to terms with this illness. I know that I need to come to terms with it but I am tired of people telling me that I already should have accepted it by now. There is no time line for accepting a chronic illness, only stages.

I am in the anger stage right now and I am tired of people telling me I shouldn’t be angry- especially relatively-healthy people. How should I feel to have lost my job of 5 years? How else should I feel that I have lost a lot of the freedom I once enjoyed to become a slave to my toilet? It is not a fun, mellow, or enlightening experience to lost a good part of the things people use to define themselves. I am in the anger stage. I am going to be upset. I am tired of people telling me I have no right to be upset when they have little clue of what it means to have to totally redefine yourself and to restructure your life.

I am getting therapy but it irks me that people who have never gone through this think I should just fall into acceptance without mourning or raging about what has happened. I’ve only been in a terrible amount of pain since June but they think I should have resolved it by now. I repeat- there is NO TIME LINE only STAGES. And acceptance is a day to day thing.