1. Remember that being sick doesn't mean that person is not still a human being.
This I do struggle with often. I am so dependent on others that it is hard to think that I have an opinion, and I am guilty of not treating myself as someone that matters. Being out in the chair, people look at me, and I am still working on what kind of etiquette I am comfortable with. I appreciate being spoken to, but please try not to help by grabbing the chair unless you ask, it's just so much pain. Because I am in a chair doesn't equate to having no feeling in my body, it's quite the opposite. I do still have a working mind - usually - and yes sometimes I have to say "I need you to think for me". I'm still me even though I am broken.
2. Recognize the difference between "happy" and "healthy".
As mentioned in the last post, I'm not healthy, but I make efforts to try to do things, that make me happy. Laughing, music, friends, people that I care about and really care about me, that know me for me, and not just my illness. Many people I have lost, but others I am close to only have known me ill, but I'm still able to be happy. It doesn't take the pain away, but it helps my soul.
3. Understand that being able to stand up for ten minutes doesn't necessarily mean they can stand up for twenty minutes, or an hour.
This is something that was very hard to grasp. I was frustrated at being able to do something, then not. I cannot stand for 10 minutes consistently, and if I walk without holding onto the wall once, that is about my limit. I can stretch one day, but not after. Sometimes I have to sit while I brush my teeth, sometimes I have a hard time holding the toothbrush. There is no predictions to this, and it does require patience, including from myself. Sometimes I have forgotten how to turn on the car, others I couldn't figure out how to open the door. It's cruel, but it happens.
4. Repeat the above step substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything.
5. Realize that chronic pain is variable.
6. Know that "getting out and doing things" does not make the pain vanish and can often make it seriously worse.
Sadly true. However it helps my soul. I love when people offer to come over, it helps me be home, and is so kind for people to ask to come visit, or to help out a little bit. I love love love going out, but it's just not possible without a to-do. Going out other than to a doctor's or a hospital is wonderful and I love it, but also I have a fear or placing more burdens on people and it is taxing on the body. Luckily I have time that I have to to spend back home, in bed. It's a fine line and again hard to not just be able to go out, forget doing things.
7. Understand that if they say they have to sit down, lie down, stay in bed, or take these pills now, that probably means that they do have to do it right now, it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something.
When I hit the wall, I hit it hard. I get no warning, no migraine-like auras, it's horrible, then BOOM. Shutting down happens and I'm done. I tend to try to push it, and I know I shouldn't.
8. Don't suggest cures. I do appreciate the suggestions, but often I have done research and if I could try something I would. Usually if I haven't, there is already a reason in place, due to costs, side-effects, and I cannot take standard pharma meds. I have alot of limitations. Sure, if I could take 42 pills a day and manage 'fine', yes I probably would do so. There is a reason, please ask if I have heard of something, like the new 'miracle' Benlysta, but again, there is a reason why I can't. I'm not just being difficult.
9. Don't be put off if they seem touchy.
Pain hurts. Imagine how you feel with a headache or a flu, miserable right? I am not comparing my everyday pain to a headache or a flu, but it's the closest thing I can try to compare to. Sick, pain, miserable, frustrated...it's all serious. I do try to mask it, not bitch about it, the fact is - I am in a very severe part of the sickness, it's quite alot more advanced and happened very fast with me. Sometimes I can't get enough snuggling, sometimes, the slightest touch sends me to screaming and tears. I have no way of knowing. It just hurts - all the time. There is zero break, and zero times do I ever be pain free.
10. Be helpful.
And thank you for that. As I've said, I need help with very simple things. I want to do everything for myself, but I can't. It's very humbling and a loss of alot of dignity. Thank you for being patient and helpful, I cannot do the big deals like taking myself to the doctor. Any little bits of help, and that includes asking how I am REALLY doing, if you don't want to hear, don't ask. I am not one to bitch about it much. Yes it's overwhelming, and I want to help you, I want to help you as I used to do. I want to be independent, and more than anything, I don't want to leave it to others. I just can't.
Thank you as always, for reading, sharing and I hope there might be some gems in here to help. I'm still me, I'm just broken. It is hard to stay positive, I try my best. Feel free to ask me anything, it is a very hard and confusing struggle for everyone involved. Thank you for taking care, and being still kind to me. It helps me stay strong and try to fight.