When you become sick, you lose control of so many things in your life that used to be simple. This is frustrating and overwhelming. I was never one that needed help, support and guidance from others. I was the one people went to for these things. I am having a very hard time adjusting to being the needy one. It is the worst feeling to ask for help. It is the worst feeling to want something and not get it because it means moving. I struggle asking for help. I just keep doing things I cannot do. This gives the impression that I am fine and feeling good, even when I am not. Then I pay for days. My body cannot do what I once did before. It seems that each day it can do less and less. This makes me more needy and Dang it, I do not want to be that person.
Recently, things happened where I was forced to ask for more help. This leaves me feeling guilty. I hate that too! :( Some people really jumped in and were a great help. Of course I appreciate every bit of help. I just don't want to feel useless. I don't want to think that I cannot do the everyday things anymore. I want to be able to do them and feel good. Or even OK. People shy away from neediness. It scares people. I am figuring out how to balance it. How to be OK with it and how to ask for help when I need it. Having an invisible illness makes it more difficult. Some people say "did you take your meds" others say "take an aspirin" or "moving will ease it" and I just have to sigh, remind myself they have no idea what I feel like and move on. It is so hard to get people to understand. Any advice?
Then I have to turn around the conversation and talk about the neediness of others. While I love to be needed I feel that some have unrealistic expectations on what I can do and what I do do. (LOL I said do do) This leads to resentfulness which is not pretty! it adds to the ugliness I am trying to rid! I also need advice on how to handle this!
I appreciate your time and look forward to hearing your advice!
First, please don't feel alone, Day. Those of us with RA absolutely understand how much you hate feeling dependent upon others and asking for help. We understand how much you hate not being able to just DO things like you used to. And boy, do we understand how frustrating it is when others just don't seem to "get it;" when they suggest a Tylenol or maybe a little exercise will make us feel all better.
ReplyDeleteMostly, they mean well. But perhaps if you mention that if Tylenol would fix it, you wouldn't be taking harsh drugs specifically to treat RA, which is incurable...
Advice... What can I say? Eventually, you have to accept your new normal. You learn to be patient--with yourself and with others. You learn to give yourself credit for what you CAN do, rather than beat yourself up for what you can't do, and remember that what you can do is going to change from day to day, week to week and month to month. Accepting that your life is changing--accepting your RA--isn't giving up. Far from it. It's learning how to live your life to the fullest and meeting the challenge with grace.
There are going to be ups and downs. Times when you can deal with your RA and the constant changes easily; other times when you'll feel like you're never going to make it. You will. Believe it. Being down doesn't make you any less strong or courageous. You can always look up.
Finally, don't be shy about educating others about your RA. It's a very misunderstood condition in the general public; there has been a lot of misinformation about it. Most people confuse it with osteoarthritis, which is a very different condition. RA can affect your whole body, not just the joints. The pain, disability and fatigue it causes are real and serious. Learn everything you can about RA and then make sure your family understand how serious it is, too.
Finally, don't feel bad about asking for help. Imagine if it was your sister or friend who had RA instead of you. Wouldn't you want to do whatever you could to help her, if you could? If she asked you for help, would you think less of her, or feel good that she knew she could lean on you a little without feeling guilty? You aren't Superwoman and you shouldn't HAVE to be. Just be yourself. Be human. Quit thinking that you have to take the whole world on your shoulders. You don't.
I'm sorry I didn't see this post, or the most recent one sooner. It's no fun to feel isolated and alone. Please feel free to email me if you'd like to talk more about RA and coping. I'll be happy to help.
I'm sending peace, calm, warmth and comfort your way. Take gentle care of yourself. You're precious. And you're going to make it.
Wren, Thanks again for making me feel better! You make it seem easy which I know its not! I feel like I am more accepting, I have slowed down and am learning. Thanks for the kind words and being there!!
ReplyDeleteYou are DEFINITELY not alone! Keep writing and reaching out to us in the RA blogosphere! There is absolutely nothing better than knowing that you are surrounded and supported by a community of people who understand exactly how you feel.
ReplyDeleteI am still a student, and often have to explain to my peers/lab partners/etc that I have RA. Often, the responses I receive are, "oh my gosh, I have arthritis in my hand from taking notes in class!" or, "you should take Tylenol for that. I hear it helps with arthritis." While I understand that these are efforts to connect and sympathize, they often leave me frustrated. I have to remind myself that Rheumatoid Arthritis is such a misleading name, and of course it generates so many misconceptions! It's my job, as an RA patient, to do my best to educate those around me. My life is easier when my professors, lab partners, friends and relatives understand the changes my body goes through on a regular basis. As Wren said, don't be shy about informing others!
I have a terrible time accepting help, and realizing my own limitations. I hate struggling to get out of bed, and watching my boyfriend give up his free time to do the chores I was unable to complete. I suffer CONSTANT guilt whenever I have to ask for assistance. But this is who we are. Needing help physically or emotionally does not make you any less strong. Waking up every morning with RA, getting dressed, having some semblance of a regular day, those things make you so strong! Being a mom makes you strong! You should commend yourself for these things. Living with this disease of ours is not pleasant, and is often frustrating, but you do it every day. Bravo to you!
Every day I set small goals for myself. They aren't as grand as the ones I used to set. My daily To Do lists aren't nearly as long. But I give myself these little goals, so that when I achieve them, I feel amazing! Set yourself up to feel successful, even on your worst days. When I'm having a flare up, sometimes I just get dressed, make my breakfast, undress, and climb back into bed. But that's okay, because I accomplished what I wanted for the day.
Be kind to yourself. You are amazing!