Do you ever just feel alone? You could have all the people in your corner, and you're still lonely. I think after a person has been chronically sick for such a long time, people just don't know how to help you anymore. Friends and family and anyone else supporting you don't understand. People will never fully understand what you are going through, unless they are going through the same thing.
I've been sick for so damn long, I'm drained, physically and mentally. I hit remission for two years, and that was so nice. A really nice break to feel so good for that period of time. It gave us a chance to have our second daughter, she was so worth waiting for, and all the pain and suffering I went though to get better. My children keep me going, I push through the days and nights that I'd rather not. It would be easy to surrender and just lay in bed and not care about what's happening around me. But that wouldn't be fair to them, and I would miss so many fantastic memories with them and my husband. But man, some days, some days are just so hard. My health is declining and I feel like it's declining more rapidly these days. I'm still able to work my job and function as a parent, but it's not easy, that's for sure. On the weekends, I'm so exhausted I just want to lounge around and veg to catch a bit of a break. Thankfully my husband is awesome and let's me sleep in, and if I nap, I'm out cold for a minimum of 4 hours. My body just needs it!
I do feel like people have given up on me, I mean in the world of the chronically ill, why would they stick around? What are they suppose to say or do for you after all that time? It's the same story, ya know?! My answer is- just be there. Keep communicating, just talk about your day, ask about ours, anything really. Just be there for them, because they need it. The longer the chronic health problems go on the more support a person needs. I think it's hard for the outside world to see, we get good at covering the pain and anything else that's going on, because we have to. It's our world, and the pain that was an 8 on the pain scale five years ago, is probably now a 4 because we adjust. If you're reading this and you have someone in your life that's chronically ill, keep checking in with them. If you're reading this and you are the chronically ill person, know that I completely get it and we can lean on each other to get through. It's hard, really hard, but the world still has a lot of beauty in it, and beautiful people on it. We just have to look a little harder some days
