Being chronically ill can be brutal to say the least but it also has many hidden gifts that come along with it. The other night I was thinking of all the lessons, good and bad, that chronic illness has taught me over the years and decided to make a list. Once I started I couldn't stop and I am sure I could add many more. I would bet if many of my chronically ill friends sat down and did the same thing their list may look the same or they would have many things to add to their list. So here it goes what chronic illness had taught me:
1. Chronic illness has taught me I am an expert in the medical field. No I have not gone to college to obtain a degree but I can tell you just about everything there is to know about my diseases and what my body can and cannot handle. I may see doctors who are masters in their fields but have no idea what it is like to actually live the disease day to day or minute to minute. It is easy for them to say do this or do that when they have no idea what it is really like. I always say you never know what it is like to live with something, anything, until you experience it first hand. This includes death, loss, or anything people must endure through life. So yes, I have become Doctor Dianne and I do so like to be called that once in a while. I am an expert because I live it!
2. Chronic illness has taught me what works for one person may not work for another. You can take two people with the same disease, the same symptoms, and give them both the same medications or put them on the same treatment plan, it may work for one and not for the other. This is a tricky lesson. You would think by watching tv and seeing all the commercials for drugs that taking that particular drugs makes you better. This is not true. even while taking medications it is still a rough road from day to day. One day I can do a lot and other days I can just get out of bed. I have learned to except each day as it comes and live just that, one day at a time, because that is all I can do right now. I have also learned, that it is okay!
3. Chronic Illness has taught me I must respect each person I meet with whatever struggle they face. Before I might think, oh come on just get out or whatever, now that the tables are turned I get it. I now have people saying these mean and cruel phrases to me and it hurts. Not that I would have ever have said mean things to someone before I became really ill but I may just have thought it. Now that I live it I understand.
4. Chronic illness has taught me, only over the past year, that I need to let go of the people who weigh me down. The ones who treat me disrespectfully or take advantage of me. It is such a good feeling to finally be able to do this, although t is sad, it has to be done. When you get together with people and you become extremely upset after seeing them, so upset that it makes you sick for a week, you learn that you must cut them out of your life. I now focus on the good people in my life. The ones who are happy to see me, who encourage me, who lift me up, and who love me. It is a good feeling to be free of the poison that I allowed in my life for so many years. It isn't easy either as some people do not understand. You know what? I just don't care anymore. I do not have the energy to care. If I take my energy and waste it on useless situations then I am taking away from my happiness, my family, my being able to accomplish the things that I love to do. I am not willing to do that anymore.
5. Chronic illness has taught me to fight for myself when it comes to the medical field. I have some MA's that I have had to deal with who should not be working with patients. It is unacceptable. I had one a few weeks ago who was very rude and I had to be rude right back to her. I am learning to stand up for myself even more than I have in the past. Funny how when you do not allow them to talk to you rudely all of the sudden they get "nice," if that is what you want to call it. Unacceptable. I know stand up for myself more. I am a much stronger person than I ever thought I could have been.
6. Chronic illness has taught me to keep very good records of all my medial appointments, symptoms, test results, etc. I make sure I give copies to all my care team so they all know what is going on with me. I cannot assume they are all in contact with each other and believe me, they get results and many times do not read them or the MA does not give them to the doctor. You must be on top of your case because to them you are just another care. # 8749547, that is who your are to them. Take charge and once again be your own doctor. I now take a detailed list to every doctor appointment listing anything that has changed since my last visit.
7. Chronic illness has taught me to only do the things I enjoy. Illness has taught me to enjoy painting and doing little art projects. Many days I am weak so I am unable to use a lot of muscle power without becoming very weak. So if I am having one of those days I surround myself with art supplies on the couch and make something. this way I feel like I am accomplishing something even if it is a something simple and meaningless to someone else. I try to enjoy every moment that I am in instead of thinking ahead like I use to.
8. Chronic illness has taught me about loneliness. Ah yes loneliness. Chronic illness has taught me the true meaning of loneliness. Believe me I am not longing for more people to come into my life or to tell me what I can do so I am not lonely. I have people in and out of my house on a daily basis, this is a different kind of loneliness. It is a loneliness that is much deeper. The loneliness that I am the only one who can understand how I am doing at any given time of the day. I may be weak, I can tell people I am weak, but no one really understands it. I may be fatigued, tell people I am so tired, no one could ever understand it. This leads to being lonely, lonely in my disease process. People try to understand, but it is really impossible. It is hard for me to understand myself so how can I help others understand. But I have learned that it is ok to be lonely and I do the best I can everyday to stay positive and happy.
9. Chronic illness has taught me it is okay to cry, and I do. But I will say I do not cry as much as I use to now that I have better days than I did in the past but on the days that I don't feel good I cry. It is strange but when you get so weak that you can't lift your arms over your head it just makes you cry. Just like explaining the fatigue it is impossible to explain weakness like that. It just makes you very sad because you want to do so many things but on that day your body says, ah nope sorry you ain't doin that today. I have learned on those days I do look ahead. I look ahead to the next day hoping I will wake up stronger.
10. Chronic illness has taught me my faith is much stronger than I ever though possible. I have learned that God still loves me and would never make me sick like this. Why would he? I have served him my whole life I don't believe he would want to knock me down so far that I was unable to serve him. I have learned that I am one of his chosen ones. One that he knew was strong and could handle this and use it to help others, otherwise there would be no reason as to why I would have to suffer like this if not to help another. I said it before and I will continue to say it, God is good even when things are not so good!
11. Chronic illness may have taken away my physical power, but it has not taken away my creativity or my ability to love others and give love. When I hear of someone who is sick or suffering I am able to connect to them in a way that others can't. That is a gift in itself!
12. Chronic illness has taught me that on some days it is impossible to be positive the whole day. Sometimes, at least for me, I just need to have a pity party, the whole, this isn't fair thing. But then when I think about it, it seems a lot of things in life are not fair. People who are in abusive relationships, not fair! People who have lost a child, not fair. People who have lost good jobs, not fair. So I pull myself out of the pity and try to lift myself up. It isn't always easy and sometime it is ok to be sad it is just a matter of making sure the sadness doesn't stay for too long.
13. Chronic illness and has taught me who my true blue friends are. The ones who can handle the chronic illness. I am sure it isn't easy for people and that is why they stay away. I think it is because they can't "fix" you and it is just easier for them to stay away. It is ok I understand, I really do. I cherish the few who still call or send me a card or message now and then they are people who have a very special place in my heart and always will!
So as you see for all the bad chronic illness has taught me it has taught me so much more good. I have learned, I am special, I am a fighter, I am much stronger than I ever thought possible, I am here to help others who struggle, I am going to make it through this one way or another, I am grateful! Grateful to my family, grateful to be able to get out of bed each day, grateful for all of you who take the time to read my ranting and raving. It helps me more than you could ever imagine and who knows maybe you or someone you know can benefit from my ranting and raving, at least that is my hope!
May God Bless your day as much as he has blessed mine!