1. Autoimmune disease affects your sleep no doubt as I am sitting here at 3:22 AM writing this. I laid in bed for almost an hour trying to get back to sleep when finally I had enough. It took me many years to convince myself it's fine to get up instead of laying there either in pain or mental anguish fighting with both sides of my brain as to why I couldn't fall back asleep while trying to convience myself I'm not in pain. It's a physical battle 24/7 and just because it's time for bed my body doesn't magically turn off the pain for 8 hours so I can sleep. It's quite the opposite because, for me at least, pain is worse at night than during the day when I can move around and keep my joint loosened up.
2. Acceptance. With autoimmune disease you beat yourself up constantly as you fight against it all the time. All the thoughts that run through my head on a daily basis. This isn't happening. Everyone my age has pain. You are blowing this out of proportion. Get over it. Years and years of arguing with yourself and fighting to be normal. It takes many years but once you finally get to a place of that odd sort of acceptance it becomes easier even though it never goes away. When you get to the place where you realize you don't have to prove your illness to anyone that's what I call acceptance. I use to feel bad or guilty about my illness but not anymore. If people don't want to understand bye bye I don't need them in my life. Acceptance is freeing.
3. Feeding off #2 is the sad fact that people do question your illness when they can't see it. Autoimmune disease is very a misunderstood disease because it is invisible and hard to see especially since most of us are masters at the cover up game. All the years people, family and friends included, would see me and after question that I could really be sick. With autoimmune diseases the damage is happening on the inside in many cases so it's not like seeing a broken arm or a person on chemo with no hair, many times there are no outward signs as to how much a person is suffering. Being human for some reason we always need the proof is in the pudding to believe something is true. Sadly that mindset doesn't apply for autoimmune diseases. Have compassion.
4. Autoimmune disease is lonely. Lonely but not in the sense of poor me I'm all alone blah blah blah but in a sense of the loneliness in being alone in your disease. I don't care how much someone loves you or listens to you or tries to understand there is alway that odd loneliness. Don't get me wrong I keep busy with hobbies and have a active in home life and imagination to go with it but being alone in my disease can exhausting at times. Coming to grips with the loneliness gets better as the acceptance in #2 becomes stronger.
5. Watching the world live can be challenging. I feel like l live my life in black and white and I notice it much more when I am in large groups of people my own age. I feel like I'm sitting in the black and white while I see all this vibrant color surrounding me. People laughing and sharing their busy lives while I'm over here thinking to myself, "Wow I haven't left the house in four days." There times in those situations I want to run out the door and go home to my comfort zone. You can see the struggle in this if you look close enough. It doesn't end there because many times it brings me down for a few days wondering what my life would look like if autoimmune disease hadn't enter my would and dimmed the colors.
6. Everyone has a cure for your autoimmune disease. Don't get me wrong I think it's great when people get cured or say they do. It baffles me to in some degree since there is no cure for autoimmune diseases but what works for one doesn't work for another. This must be respected by the people with and by the people without autoimmune diseases. Our immune systems are wacked. Yes you can take many measures to strengthen the system but the problem is still there. I take medications that are powerful and what people don't understand is mixing those drugs with the "new cure" can kill me. I trust my team of doctors and the research. It's my choice and only I can make my decision on treatments, not my family, not my friends, not my doctors, but me. I know my symptoms are better controlled on meds and maybe yours aren't but we all must make our own choices and live with them.
7. You lose friends with autoimmune disease. Let's get real autoimmune isn't like a broken arm or surgery. It's isn't like cancer. Autoimmune disease is forever, at least until there becomes a cure. People forget you. It's all good I'm not complaining in the least and I understand it. Who has the time or the patience for a person who use to be there for them but now isn't? People don't know what to do. They can't fix you so they bolt. I can't say I wouldn't be the same way if I was the healthy one and had a friend who has been sick for years. I sure hope not but who knows. Ain't nobody got time for that. It's funny because I have really learned to like myself in all my solitude. I've actually become my own best friend and that's a huge plus in all of this struggle.
8. Taking charge of your medical care is crucial when you have autoimmune disease. You are the boss not your doctor. You have to do the best you can to keep up on the routine blood work, appointments, medications refills and new scripts. Only you. There is no medical fairy that comes along to push you, it's up to you so you must stay on top of it all. Try to keep the best records you can. This isn't always easy. I never use to do this and then when I developed asthma and my pulmonologist asked if I ever had a chest ct scan done I said no only to find out I had. When you have test after test you forget. Do your best to try and keep dates and tests written down. I still need to work on this.
9. Diet and exercise are important. My grade for this is a D-. I could do so much better than I do. It's a vicious battle because when you are exhausted it takes so much energy to plan and take charge. I feel for myself the longer this goes on the less I care. Bad attitude = Bad habits. I know this will become easier for me as the weather gets better here in Michigan. Fresher produce and being able to walk outside helps a lot. Sunshine helps too as Michigan winters can be dark and gloomy.
10. Medication mix up. Whoops. I try to keep a system to my medications. I have a few I take when I get up because one needs an empty stomach. Then later the next handful. There are days it might be mid morning and I ask myself did I take the second mitt ful? I finally came up with a system where I take all the bottles out when I take my first dose and when I take the drug I put the bottle back in the basket. This way I know if any bottles are sitting in the counter mid morning and not in the basket I didn't take them. Problem solved. Seems so silly as I write this but for me it works. There are times the disease causes your thinking to become jumbled and getting confused becomes easy. It feels like a full time job keeping it all straight and in order at times.
11. Psychological warfare. This is my term with my own definition. It seems when you are chronically ill there is always a war going on in your head. The war of this isn't fair. How come murders and child molesters get to do awful things to others and have their health? How come those pieces of crap didn't get this? I miss volunteering and helping people so much. That was one of the hardest things in the world for me to give up but it had to be doneBecause of my health. The warfare in my head is something I have learned to mange through my art. When I feel I'm not doing anything for anyone I paint someone a picture. It has become my therapy in this psychological warfare and it works. I wish I could volunteer and keep the hope that one day I will get back to it. That being said I still wish one of those child molesters had this and not me. I'm selfish like that I guess.
12. I'm lucky. I'm blessed. I still cannot believe the man I was blessed with. I cannot imagine what this would be like if I didn't have his 100% support. I know many sufferers do not have that and my heart bleeds for them. I'm at a loss for words when it comes to this subject maybe because I wonder how he does it. I don't know how he puts up with me always having something wrong. I do my best not to complain but he is my rock when it comes to understanding. There are times my disease makes me mad and who's the easiest person to take that out on? The one you love and live with. This has gotten easier because now I tell him when I'm a crab and make sure he knows it isn't him. It can't be easy for him or any family members to watch a loved one suffer. Illness has that ripple effect.
13. Autoimmune disease is expensive even with insurance. Between doctors appointments, copay's, tests, blood work, prescriptions, and so many over the counter remedies you cannot imagine the money spent on trying to bring yourself enough relief just to live. When you are suffering you will try anything to take away the pain. Even after all this time I still struggle with this because it seems there is always some new symptom popping up out of the blue.
14. I worry constantly about the what ifs of chronic illness. What if we lose our insurance? What if I get hurt and need someone to take care of me? What if Rich can't work? What if? What if? What if? There are many times I have to pull back and put the breaks on the what ifs or I'll drive myself insane. One day at a time, one minute at a time. We will worry about the what ifs when they come. This is a constant battle.
15. I like to share my struggles in my blog. Coming here and writing is better than going to a therapist with glassed over eyes looking at me with that she looks fine look. I've never done therapy and I hope I never need to. I've never felt I needed it since I have my own therapist right inside my head who understand me best. I've learned self talk is the best therapist. Usually it's goes something like this, "Pull your head out of your ass and get it together," works for me most of the time.
16. There are days I don't get much done and that's ok. I've learned over the years it stays right where it was the day before so no worries on things growing legs and walkin away. Who cares if the laundry didn't get done today? I do cook everyday no matter what. You learn what you can and can't do with autoimmune disease and you must work on being ok with it.
17. If I had to pick the worst symptom of my autoimmune disease it is hands down the chronic fatigue. Unexplainable fatigue that causes me to be weak and many times forces me to stop what I'm doing smack dab in the middle and lay down. It isn't a I need a nap kind of plop just a rest my body plop. The best way I can describe it is if you ever has surgery and you remember how you felt for the next month or so every time you did too much. You have the agenda in your head of all you are going to do but then you start doing things and wham it hits. That's what autoimmune disease feels like except unlike surgery you never fully recover. Fatigue is a constant unexplainable battle. I hate it the most. I can deal with the pain easily, most of the time, but the fatigue is a sad symptom to me because it affects every aspect of my life. It wears you down not only physically but mentally. This is the main reason getting a job is out of the question, another sad loss for me wondering if I will ever be able to work again. The picture I had in head when the kids left home was so much different than the reality I am now living.
18. You learn to adjust your schedule according to your illness. You might make plans on a good day for next week Tuesday but next Tuesday comes and the flare that hit Monday makes you realize that Tuesday probably isn't going to happen. You become very undependable. Making plans becomes another mind game because when you make them you never know. I have finally become secure enough in my disease that when and if I make plans I always tell the person I'm planning on it but be prepared I might not be able to come. Hence the reason I don't make lots of plans. Cancelled plans happen now and I've learned to be ok when it happens. I am going on a trip soon and it scares me to death. Leaving the comfort of my own home, my illness security blanket, is very frightening. But I also think to myself I still need to try to live. Life at times feels like it is slipping away out from under my feet and if I don't take a few chances what is the point? Life is meant to enjoy so why not try to do the best I can even with autoimmune disease always on the back burner.
19. My one wish is that people could be a little more sensitive towards those with chronic illness. I write a lot in my blog but I don't open up easily to people. Why? Because most people just want to fix it. When I hear people tell me, "It could always be worse," I want to bash them in the face. Yes it could be worse but this IS my worse. It's what I live with. It's not easy. When people say stupid things like that it makes me withdraw more. Once again because of the autoimmune disease misunderstanding that is so rampant.
20. There are over 100 different autoimmune disease, no wonder the average diagnosis can take over 4 years or more. Not to mention the many doctors a person will see over that 4+ year period trying to get an answer as to why they feel sick all the time and experience all these strange symptoms that come and go. Many times symptoms are subtle with no abnormal blood tests early in the disease but the person knows something isn't right. I always say a person knows when something is wrong no matter what a doctor might tell you. You must keep up the fight which might mean many different doctors until you find the one who listens and wants to help you. A diagnosis is a relief with a whole new set of questions that follow. It is just a start. There are blood tests that are done and other tests that may be performed but many times autoimmune disease is a process of elimination diagnosis. The doctor will take all your symptoms, the physical exam, tests, and blood work and try to fit all the pieces of the puzzle in place in order to pinpoint the diagnosis. It's sounds easier said than done especially since the symptoms of different autoimmune diseases mimic each other.
21. If you are diangnosed with one autoimmune disease it sets you up to the possibility of getting another one in the future. Mine started at age 19 with hashimotos which is autoimmune thyroid. Nodules form on the thyroid and thyroid level become low. I still have 3 nodules we watch. I believe my journey began with that diagnosis but was amped up after the birth of my third child when it all began to spiral out of control. Now I watch both my daughters struggle with the hashimotos. Genetics plays a role in autoimmune disease also. The chance of developing autoimmune disease is greater if a close relative is diagnosed. I can hardly go there in my head when I think about the symptoms my daughter experience and see them struggle as I did in the beginning. I would add 5 more autoimmune diseases to my list it fit meant they didn't have to suffer. Too bad It doesn't work like that.
22. NIH estimates 23.5 million people suffer with autoimmune disease. In comparison cancer affects 9 million and heart disease affects 22 million. The saddest part for me and other sufferers is the research funds for autoimmune disease is a drop in the bucket compared to that of cancer and heart disease. I wonder why with numbers like that? You can see the misunderstanding and how autoimmune sort of gets swept under the rug so to speak when compared to other disease. I wonder why when so many suffer? I do believe it is because autoimmune disease is a mystery of sorts and the research maybe be so much more complex? I don't know but I wish it would change.
23. Laughter is the best medicine. I need to laugh like I need air. When I see my immediate family laughter is always present. I love spending time with Rich and the kids and grandkids. Who doesn't love that? I think being chronically ill helps you appreciate it a little bit more if that makes any sense. Surrounding yourself with love and really good energy is a must when you are chronically ill.
24. Self worth is a constant battle when you have autoimmune disease especially for those of us who are unable to work or participate in the real world. We all try to find meaning to our lives especially the older we get but when you are ill, a lot, it's hard to figure out what that looks like. Right now I have to believe my meaning is to share my struggles and help others realize they are not alone. Truthfully that's all I have to give at this point. We are all in this together.
25. Hope. Being chronically ill you must never give up hope because on many days hope is all you have. The hope of a brighter day. The hope of a cure. The hope of a peace. Never give up hope no matter what!
26. Entertaining is exhausting for the chronically ill. We have basically cut way back on having people over because even a simple dinner can put us down for days. I might do ok during the actual get together but people have no idea how a chronically ill person unravels after the party is over. With chronic illness there is always a pay off to everything and I mean everything you do. After every large get together I say that's the last one. A few months go by and I forget the price I paid only to do the same thing over again. It's like you never learn and in some odd sort of way you always have that hope that maybe this time the payoff won't be as bad as the last. Plus you can't stop living and family is important so you just do it.
27. One of the best parts of my day is when I get to soak my bones in a screaming hot bath. I must admit it is like heaven on earth for me. The heat from the water helps relieve pain and relax my mind in so many ways. I often think of bath time as one of my rituals. It's soothing and refreshing both at the same time. There are days I need to take a couple hot baths to make it through the day. It is almost like medicine to me. It's hard to put into words what a simple bath can do for a chronically ill body and mind.
28. Staying positive when living with autoimmune disease is critical. It is also easier said than done at times. Talking to yourself with good thoughts instead of bad thoughts keeps you going especially on those bad days. Think about how much your thoughts control your life on a daily basis in a normal life now imagine it when you fell sick all the time. You probably can't even imagine it. The more you hear the negative the more you believe it. On the flip side the more you hear the positive the more you believe it. You must choose which side you're on. Choose wisely.
29. With autoimmune disease stress can be a trigger as well as weather, overdoing it, not taking care of yourself, not eating properly, but many times there is no rhyme or reason as to why you all the sudden are in a flare. A flare is when your disease decides it needs to be more active than it usually is. The physical and mental are both very hard to deal with as you try to figure out what might have set you off and try to reverse the cause. Sadly when you are in a flare, time is all you need. You need to rest and take care of yourself while you wait for it to pass. Easier said than done.
30. When you live with autoimmune disease you learn to appreciate the smallest of things. Being able to go out to dinner is a blessing even though you usually need to go home right after because dinner is enough. Every little accomplishment becomes a big accomplishment to you. What is a nuisance or inconvience to most to you is progress and life.
31. One of the worst parts of living with chronic illness is the fear. It isn't a fear in the way most of us think of fear but a different sort of fear. The fear of the unknown. The fear of what's next and what might come tomorrow. The fear of getting a cold that leads you into a tailspin and usually antibiotics. The fear of treatments wondering if they are worth the risk. The fears are too many to list. You learn over the years how to control the fears by thinking happy thoughts and blocking out the junk that doesn't belong there. The fear never really goes away.
That is my 31 general facts or thoughts that I have when it comes to living with autoimmune disease. I'm sure if you took ten people and asked them all to write down 31 facts or thoughts on living with autoimmune disease their 31 might compare or may be different. Living with one of these diseases is all your own. As with everything in life we all experience what we are going through differently. We must learn to celebrate those differences and build one another up in our struggles. If we aren't doing so than what is the point of living, with or without autoimmune disease? Rock on my fellow chronic and never give up on yourself. I know I won't!
God Bless!
Dianne
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