Today I got a memory from Facebook, showing me that I wasn't feeling well for a few weeks a year ago today. The memory made me go back, trying to remember how easy my life had been, before I got sick.
If I look at where I am right now, a lot of people tell me: 'You should be happy, because you finally know what you have'. I am not so sure about this. Yes, I am happy that I am no longer in uncertainty. Yes, I am happy there's a doctor who is trying to help me the best he can. No, I don't like my disease. No, I do not want this disease AT ALL.
I know people try to help me by saying things as: ' My ..... has it too. She/he feels great now.' / 'That's not to bad, you can cure that'. (Please let the world know how, because I don't think anyone else knows!) / 'Just don't eat ....... and you'll feel much better'. / At least it's not too bad, I mean you're not dying or anything', but that doesn't help me AT ALL.
What does help me, is simply listening to my story without giving me advice. Or help me by doing tasks that I am simply not capable of doing on certain days. I also have to get used to asking for help, since I usually was the one giving help to others.
This disease means not being in control of my own body. It means having pain every day. It means that I have to figure out which medication can help me (which might take months to years, while my body gets to deal with all these meds, and responds in various
very bad! ways and NO there is no medication that the rheumatologist can give to everyone with RA, let alone a cure. And yes, I have to try the cheap ones first, that do not respond well with my fibro, migraines or IBS), while I have more medical issues that these meds don't care about. It means figuring my new me out. It means not being there for my family, when I really do want to. It means saving my energy for the important stuff. It means putting my plans of becoming a LBS on hold, and hoping that I'll ever be capable of working full-time again.
It really is a grieving process. I am saying goodbye to the woman I was and I am trying to deal with the woman I am right now. It is hard. Denial, anger, bargaining, depression and acceptance are floating through my mind, all together, in various orders. I cry a lot lately, and that really isn't me. Not that I don't want to cry, crying is an important part of the grieving process. I am a rather calm and logical thinking person. It's hard to get me angry (if you get me angry, I won't forget easily) I am certainly not depressed though, because I still have a lot to be grateful for, and I think about that every day.
These 10 things I did today made me feel very grateful:
Although this disease is something I wouldn't wish to anyone, it also makes me see what is really important in life. I notice a change of mindset.
For example: I do not care about a lot of things people complain about in our neighborhood, although it's still a bit hard for me to not respond to those people that seem to have nothing to do but complain about others. These 'complaints' came by lately: 'all the renters in our neighborhood seem to not take care of their yards like us home-owners do'. (Please feel free to mow my lawn, since us renters haven't been able to do it ourselves, because I was trying to get used to my new meds, which went very wrong and my spouse just had two back surgeries) or 'someone called the cops because they thought the music was too loud, at 8pm' (for gods sake, let people enjoy a party!) or 'I saw kids, I think they were Middle School aged, smoke outside. It might have even been worse than just smoking' (no comment) and ' These kids were ringing my bell' (with complete video. Have they never been young themselves?) If that's what you are worried about, congrats, you have a great life (or maybe you should find something else to do?)!
I do not assume things. I try to see the person behind the story. And the story behind the person. These have always been talents of mine, but they seem to get even more developed now. There's probably a good reason for all of this. I am still convinced that everything happens for a reason and that there is no such thing as 'coincidence'.
Next time you complain about all the tasks you have to do, please be grateful that you can do them (without thinking of what you won't be able to do tomorrow, because of all you did today).
And if you see a yard that doesn't look as great as yours, maybe ask if you can help, instead of complaining about it to other people. Talk to the people it is about, not about them.
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Filed under: Rheumatoid Arthritis