For family and friends...

These are not my words, but they say a lot and it is so true! Found this on a support group page.


My illness is a difficult one to understand, even for me. Many of the problems it causes are invisible and difficult to anticipate. I need you to understand that my life always is subject to change because of the unpredictable nature of the illness with which I must live.  First, let me explain the depth of this illness-
1.  My joints and muscles constantly hurt, burn, ache, cramp and/or feel sore.
2.  I may need some very heavy pain killers and even then they still might not work.
3.  I never get deep sleep so I never feel rested and am always tired.
4.  I get terrible headaches, some may last days, and there is very little I can do about it.
5.  My vision, hearing, sense of smell, and sense of taste all can be affected. I may get a very dry mouth, very dry eyes and/or blurry vision, or be very sensitive to odours, noises, lights, etc.
6.  The fatigue I get can be overwhelming- and some days I cannot get out of bed no matter how I try.
7.  There are emotional side effects- like depression, memory loss, and difficulty concentrating.
8.  The medication I take has physical side effects- weight loss/gain, changes in my appearance, feeling doped up, mood changes, and problems with bowels/bladder.
9.  I may need to use walking aids, other aids like a helping hand, or sometimes even use a scooter or wheelchair. Other times I may need no help at all.
10. I might not be able to drink alcohol or eat certain foods because of my medication and illness.
11. The illness is here for the rest of my life- sometimes I will seem very well and "back to the old me"…and sometimes I may become very ill. It's unpredictable.
12. This is not contagious, and there is no evidence that it is something I have inherited or will pass down to children.   
This is all because my body has a serious fault in the way it perceives pain, and doesn't allow me to sleep in the way that gives my body the energy and time it needs to repair and rejuvenate itself.  Sometimes, I might go into remission meaning that I will do pretty well for a while- and sometimes, I will have flares, meaning that things will get very bad. I can't tell when a remission or a flare will happen, and I don't know how long either might last.  Most experts agree that if I can get good sleep, over time the pain situation will improve because overnight the brain will reset the pain receptors.  There are some things you can do which would make it much easier for everyone and I would be grateful if you would take the time to read this and try to understand.
1.  I will have good days, bad days, and many days in between. I can't always tell from one day to the next, or even sometimes from one hour to the next, how well I will be, so please be forgiving when I must change plans at the last moment. I don't mean to let you down. 
2.  Some days I will have all the energy in the world- and the next day I will be half dead. It's just the way things are- please don't say "You were okay to do this yesterday…" I can't help it.
3.  Please don't judge me as a complainer, whiner, or as a person making more of their illness than seems necessary. Many of the problems I have are invisible to other people so please be patient, understanding and compassionate. 
4.  I don't want to spend my days in misery, so even if I have pain, am very tired, or even if I am just worried, I will still try to be happy and enjoy myself. This does not mean I am physically better, it just means that I am coping with the chronic pain and fatigue pretty well that day. My health will never be "back to normal". "Healthy" and "better" will always be a relative terms for me now.
5.  I get lonesome and miss being part of the active life I once lead. Remember me- call me- visit me- don't give up on me. Please don't forget me or stop asking me to do things because I so often say no… It's not because I don't want to, it's because I can't. With a little help from you, I might be able to get more involved. I want to be part of your life.
6.  This isn't my fault and if I could I would get rid of it. It's not my fault there is no cure.  It is not all in my head! The syndrome of symptoms been discussed in medical literature since the early 1800's. Although there is no one test to prove it exists, that doesn't mean it isn't real. My pain and other symptoms are real, and result from both the chronic lack of deep sleep and the chemicals in my nervous system which triggers the pain receptors to feel terrible pain when most people would feel a lesser sensation like an ache. The body actually thinks it needs to build more pain receptors- so it does, making the pain even worse. The longer I have this illness the worse it will be.
7.  It's okay to talk about what is happening. I would rather you ask than pretend you haven't noticed how different I am or just avoid me. It's okay for us to talk about how my illness affects you, too. I won't see it as a betrayal if you talk to me about your frustrations with my illness as long as you don't blame me.
8.  It's okay to say "I know you don't feel well, but I don't want to hear about it today". Don't feel that you are obliged to listen to me … but if you ask how I am, I am going to tell you so if you don't really want to know, don't ask! I will try to remember that although my illness is a huge part of my life, you may not want it to be a part of yours.  If you find me overwhelming, tell me! Challenge me, but please do it with love and compassion. 
9.  Don't try to tell me that all I need is a little exercise, or just to get out, or try a certain pain tablet, or some new treatment, etc, because it works for you or someone you know… Please don't feel rejected if you try to offer me a solution for my problems and I don't take you up on it. I am under close medical care and am doing everything I can.
10. You may think I just need to push myself a bit harder or that I am giving in to things too easily. One of the problems with this illness is that if I try too hard, it can set me back considerably. I have to be more patient with myself and accept my limits- I don't like it this way either but I have come to realise that one day of trying too hard and doing too much could make me much more ill for weeks. I need to be slow but steady.
11. Sometimes, I need to sit down and rest, right away. When it gets like that, I can't wait… I really am at the mercy of my body and even though it may seem selfish I know that if I don't take care of my self, my body will get even with a vengeance because that is the nature of this disease. 
12. Please don't belittle my pain or fatigue. It makes me crazy when I hear "Yeah, you may think your back aches, but you just sit all day- I spent the day in the garden!" I wish I could have pain because I did something I enjoy- not just because my body is hurting itself. It is okay though to tell me how you are feeling- you may find that I am more compassionate than most when you tell me how you feel because I really do understand pain and fatigue… and you will find I may have some advice that can help you!
13. Please don't tell me I need to lose weight. I know.  I am doing the best I can. Don't criticise my eating, please. It won't help either of us.
14. I don't choose to be down and miserable but depression is part of this illness. I need you to remember that I didn't choose any of what this illness has done to me- I am struggling to learn how to manage, to cope with what it does to me, to grieve the loss of my health and to do the best I can to live the best life I can. Although I am grieving the loss of who I was before this illness struck and sometimes I get so frustrated I just can't help feeling sorry for myself, it's not just in my head- its an effect of the illness, too, that I become depressed and anxious.
15. The pain receptors in the membranes around the joints and muscles keep telling my body that it hurts even when there is no reason. This pain is real, it is perceived the same way you feel pain if you hit your finger with a hammer.
16. Sometimes I will have brain-fog. It's common in this illness to have moments when your memory is poor, or to find it difficult to think clearly. It will pass. It's not permanent- so if something is important to you please don't forget to remind me! I will be grateful. It's also ok to remind me to write something down, or to check back with me later. Please don't think I am ignoring you, being difficult, or just don't care. I feel terrible when I forget. It's because no matter how hard I try I can't sleep well, and medication doesn't help because sleep from medication is not the right kind of sleep, either.
17. I need to know if and how I can ask you for help. Sometimes, I will need more help and support than other times. Please let me know if you can help. If you can give me a lift, take me to an appointment,  help me with an errand or a task- maybe make a hot dish for me some night when I can't manage to make a meal- please let me know. When I am stuck in the house because things are bad, please come sit with me, even if there is nothing you can do. Little things like calling me every couple of days just to check in- sending a note, card, or email can make a huge difference. If you can, please reach out to me. Even if you can't do anything specific, just be my friend. Your friendship is the most important therapy I have. 
18. I can still do things for you. Please don't stop asking me to babysit, to run an errand for you, to do something I have always done before when I was well. I'll be honest if I can't- please, if it's something I did before, it's okay to ask me again. 
19. Please respect handicap parking and encourage others to do the same. Sometimes, people with illnesses like mine can't get out if they have to walk far- if everyone respected handicap parking, life would be easier for me and people like me who need those special spots. Defend handicap parking and it makes a real difference. 
All in all, I need you to realise that I am the same person I have always been- my heart, soul, hobbies, interests, sense of humour and mind are all still there- it's my body that is turning against itself. I am more desperate for your love and acceptance than I am able to tell you. Please try to understand.  Please accept me the way I am, please forgive me for the things that have changed, please forgive me and try to understand if I disappoint you, try to accept that I am not in control of what this is doing to me. Please forgive me if I let you down – I know that these changes are hard on everyone around me, too.  I wish it could be different, for all of us. With time, compassion and love, things will eventually settle and we will all adapt.