The other day I was sitting in my chair with my feet up thinking about all the realities of being chronically ill. Truthfully I was sitting in my chair feeling sick as hell and all the realities of this illness crap began running through my head so I jotted them down for a blog post. Here you go:
1. I don't want to be sick. With all the realities I could start my list with I feel this is the most important and real one of all. When it comes right down to it who would want to be sick? Does anyone? Dealing with it everyday sucks plain and simple. I would never choose a life with illness but then again I remind myself we all get what we get and do the best we can.
2. To go along with the first reality is the reality of how hard it is to live in the healthy world. When the chronically ill are out in the world it somehow makes us feel bad about the reality that we aren't like everyone else. We are good at pretending we are but our reality is much different. The amount of energy it takes to survive out in the real world when you are feeling sick is a hard one to explain. I like staying home and can always find something to do and when I can't that's okay too.
3. Mind games. The worst part about illness is you have to deal with the realities of what you think you can still do vs what you actually can do. In your head you can do anything but when you actually start doing something your body tells you otherwise. This is probably one of the if not the most frustrating parts of being sick. It's sad. It's hard cutting your losses when you don't want to. An example would be the other day when we decided to go for a walk. I knew it wasn't going to be easy but I thought to myself how do you know if you don't try. We got a little ways down the road and I told Rich I had to go back. It's so hard admitting to others, even Rich, that you can't do something. It was fine because when we got back we tried our bikes out and that was much easier for me than walking was that day. Who knows next week it might be the reverse I can walk but the bike kills me. The point is I didn't give up on getting out. Success!
4. Over time chronic illness changes you. In the beginning you fight to be the same person you have always been but after years of suffering you finally throw in the towel and begin to accept the new you. Although I wonder if we really ever accept the new person 100%. Probably not. Longing for the old you never goes away no matter how far you get in accepting this hell. You do the best you can.
5. Sadly illness causes me to be angry, at times. This in turn causes me to be angry at other people. I can be a crabby bitch at times. I want to run away at times and never return but then what would that solve? I would be running from the illness? I doubt that would work because the illness would follow me so running would accomplish absolutely nothing. By the way I hate this suffering. It isn't fair. Well except on my good days then it's fine. So hard to put into words. My blessings wash over my anger. I am blessed in so many ways when I think of how different life could be for me I know I am blessed in so many ways.
6. There are the times being ill makes it hard to be around people. Watching everyone have fun without having to deal with all the messages being ill sent to their heads. For me I hear people talk and engage in conversation the best I can but at the same time I am in the conversation but other conversations are happening in my head as well. I hear, "Move your legs they are stiff. Get off your left hip it hurts. Turn your neck the other way that's painful. Get up and walk around to stretch out your stiff body. Get home and get to bed." Need I go on? No wonder I'm so exhausted when I get home from any type of outing. You could never understand it if you never experienced it. My hope in my blog posts is to bring some reality of living with chronic illness not to complain. I hope it helps others understand all that goes on behind the outward appearance.
7. Mornings suck plain and simple. Some days it takes three hours to really get moving. Some days not as long. It's funny how you wake up in the morning and the minute you open your eyes it's either, yes this is going to be an okay day or nope this day isn't going to be good. But then there are the days you start out good and by noon you feel like crap or vise versa. You honestly just never know what you're going to wake up to which makes it very hard to make plans. You might make plans to go out two weeks from now when you are feeling ok but the day comes and ugh you wake up and find you are just not up to going. Or the many times you force yourself to go to things when you really don't want to. Like I said above socializing is difficult. Short visits with people work best and the earlier the better.
8. It's no secret I am an emotional eater. It's obvious by my photos my weight goes up and down faster than a hooker on Friday night. Sorry but you laughed right? That's good! Do I dare say when I feel down from being sick I eat? The comfort of food that really isn't a comfort at all. I'm always struggling with this and probably will until the day I die from my obesity. I really hate how I use my illness as an excuse at times but there are times it's not an excuse at all just a reality. This goes along with exercise. It isn't that I use excuses just the realities of keeping up a house and keeping in contact with family takes a lot of my physical energy. I try to walk but not enough. I'm too weak to do areobic exercise at least right now. I did sign up for a arthritis exercise pool class that starts next week so I am excited to start that. I am hoping this will be the right fit for my needs. They say the headed pool is the best exercise for people with arthritis so I will let you know in a future blog. I tried a new yoga class closer to where we moved but had terrible pain that continued to get worse the longer I went. I decided it just wasn't worth it so I quit. Oh ya chronic illnes makes you a quitter at time.
Bottom line: I do the best I can with nutrition and exercise but I know I can do better. I also know it is okay to be where I am and I have accepted it, not totally but to some degrees. It's all a balance I guess.
9. My support system is small. I know people mean well but people just want you to be well. It takes the pressure off them. I never expect people to make what I have been given any better. I just wish there wasn't always an elephant in the room. I am still a person. Stupid comments like it could always be worse or so and so has it worse off do not help me at all. Keep stupid comments to yourself. Just think of when you are ill like a cold or the flu do you want people to tell you that you are fine? No! You feel like shit. Now imagine that pretty much every single day. Can you? Just try. Be compassionate to others always.
10. Managing doctors appointments, blood tests, side effects from meds, etc is a full time job by itself. Add it all together and it's exhausting to stay organized. I want to throw in the towel on so many days but it just doesn't work like that.
11. Rules. I have so many ridiculous rules I try to live by. The biggest rule I follow is: get out of bed everyday and only use the bed for sleep and sex. I refuse to get back in bed no matter how bad I feel. Does that mean I never rest in my recliner? No! Actually I rest a lot. Do something and rest is pretty much how my day goes but no bed! Yes, I said sex because that is another rule: never give up the things you enjoy, never! I can add family, art, cooking, etc. the big rule is to live as normal of a life as I possibly can. Normal for me. Another huge rule for me is I no longer allow myself to ask why? The why and trying to make sense of chronic illness will never happen plus I did this for so many years And enough is enough. My rules could go on. I believe it is important for everyone with chronic illness to have rules. Rules keep you focused on what matters and keep your mind from constantly dwelling on the illness.
12. The reality of trying to live everyday life is hard. Example: I need groceries so I make a list get ready to go and I might be way to exhausted from preparing that I can't even go. Yes that is true. Hard to believe to the real world I know. Lucky for me I have a saint for a husband who loves grocery shopping. A text to him and a quick answer back that it is no problem and he will go is like hitting the lottery for me.
13. Learning to say no. Huge reality. The cool part of this one is once you begin to say no it gets much easier. Then people start to understand and they quit asking. It is a relief not to be depended on for everyone's happiness. Of course that is my own fault since I allowed it for so long. Over time of living with chronic illness you form a very hard outer shell because you just don't have the energy anymore to over do it. It's freeing to be okay with saying no if it makes life easier for you.
14. I might be physically weak but mentally I am very strong. Funny how that happens. In fact I think I am mentally stronger now than I have ever been. Fighting illness and living while you suffer makes you stronger. Chronically ill people are my heroes.
15. I like having a clean house. I use to clean every single day but now I clean when I can physically handle it. That means there might be a week or two of dust built up on the end tables but truthfully I really don't care anymore. I'm pretty sure if I died tomorrow no one will remember how clean my house was. If people come over to see my dust than they don't need to come over. You learn what matters and what doesn't that's for sure.
16. The reality of over doing it is one I need to work on still after all these years. When I do have a really good day I over due it and then some. What happens? I pay dearly and many times for days. Pacing is hard to learn while you live with chronic illness. I hope one day to figure this out. This may be somewhat of a repeat of the above but it is so important it cannot be said enough. Maybe it is the reality of accepting where you are at the present time.
In closing it is my hope that reading this helps the world to understand just a little what it is like to live this way. Most importantly I hope it gives my fellow chronically ill friends hope in knowing they are not alone. Stand tall. Show people that even though you suffer you are the winner in the end. No one can ever that that away from you. Keep pushing on by doing the best you can. You don't have to answer to anyone. I believe in you just as I believe in myself. Together we are the faces of chronic illness so live it the best you can!