I have it - rheumatoid arthritis. It's invisible - I look like a normal healthy person, it's not treatable - I will have it forever (as of now), it's common - along with a lot of other similar illnesses like firbromalgia, lupus, cancer, thyroid...the list goes on, it is debilitating in part, and yet I have learnt to manage it. It's not easy, but anyone who has any of these, learns to live with it. And before you say things like, "but you are too young to have arthritis", it has no age limit. These illnesses can happen to anyone. So I did nothing wrong, i didn't bring it upon myself, a little exercise or diet or losing weight or a positive outlook will not cure it. But this post is not about educating anyone about it. This is for those who have it. It's equally important for you to read if you know someone who has it. Because this is tough for anyone in contact with the illness, directly or indirectly.
On this one, let's talk about the ones who have it. Next week, I will write another one for those who have family & friends who have it.
If you have it or suspect that you do, please go to a doctor. And Google is not a doctor. I've never seen it's medical degree. Rely on google to find support groups (and you do need them), but do not convince yourself that you have it or can treat yourself.
When I was diagnosed with it, my 1st reaction was, "Oh crap!". Followed by "it's not possible". Then "why me." Then "what did I do wrong?" Then "My life is screwed!"
So yes! Oh crap is about right. There was a lot of disbelief and helplessness. And of course, refusal to accept it! I wouldn't tell anyone. I'd pretend I was just tired or that the twins had kept me up all night. Slowly I accepted that I did have it. And then it became easier. I changed my lifestyle (the ode to diet & exercise). I went from being a runner & gym junkie, dancing 5 nights a week in high heel, to a yoga follower. I ditched the heels, took my meds regularly and thought I'd be fine. I wasn't. The pain wouldn't go away!
I learned to live with constant pain. It's tough. My feet tell me to sit, to stop putting my weight on them. My fingers tell me to stop opening those bottles. But my kids are small, my work is physical, I need to travel a lot and spend hours on my feet, and I learned to manage.
The toughest part is the mind. The teaching yourself that bad days may be many, but there will be good days.
But even tougher are the ones who have no idea of what you have or a battling and are eager to dispense knowledge or lack thereof! (Remember the ones telling me to stop being lazy! Just do some weights everyday and your arms will be toned). You will have these ones too. Some will be close friends, some family and some well meaning random strangers you've just met! Ignore them. Smile politely and move on. It takes practice. I wanted to scream at them. But you can do it.
The positive outlook! Yes! That is important. You have to not give in! There is pain, for sure. But your mind is sharp as ever. Use it to tell yourself that you can still live your life normally. I do! I run with my kids on good days, I still dance, go on holidays and go for walks. I went paragliding, kayaking, trekking on good days. And I lay in bed and moped on bad. it's OK to do both. On bad days, I look like shit and that's OK. I found make up for those days (that's my coping mechanism. You will find yours). On good days, I'm unstoppable.
Find support. Ask for it. In my case it's my family. My in laws carried my kids for over 2 kilometers on a holiday in Bali. I would never have managed that holiday without them. I explained, they understood and supported. My parents, though they can't do much physically, are always around to make me laugh. My husband! It's probably toughest on him. Suddenly he has a wife who can't sleep, can't go on long walks with him and complains a lot. He learned to plan, adapt and change to suit my "pain of the day." It's tougher on the kids. They are 5 yrs old and can't understand why mom won't carry them or run after them. I am teaching them as best a I can. And now they give me the meds and slow down for me.
Managing it is about asking for support. Remember we are talking about an invisible illness. Which means that people can't see it. They think you are fine. So tell them (at least the ones who matter). Ask for help. Tell them how you feel. And understand that they may have had days of their own. Eat well, rest and trust that doctor.
But above all, treat yourself with a lot of kindness. You know what you are going through. Help yourself heal. It's not your fault and you don't need to be a super hero all the time.
And if you still have questions, ask me! I'm happy to answer or even let you just gripe to me. Now go. Love yourself.
On this one, let's talk about the ones who have it. Next week, I will write another one for those who have family & friends who have it.
If you have it or suspect that you do, please go to a doctor. And Google is not a doctor. I've never seen it's medical degree. Rely on google to find support groups (and you do need them), but do not convince yourself that you have it or can treat yourself.
When I was diagnosed with it, my 1st reaction was, "Oh crap!". Followed by "it's not possible". Then "why me." Then "what did I do wrong?" Then "My life is screwed!"
So yes! Oh crap is about right. There was a lot of disbelief and helplessness. And of course, refusal to accept it! I wouldn't tell anyone. I'd pretend I was just tired or that the twins had kept me up all night. Slowly I accepted that I did have it. And then it became easier. I changed my lifestyle (the ode to diet & exercise). I went from being a runner & gym junkie, dancing 5 nights a week in high heel, to a yoga follower. I ditched the heels, took my meds regularly and thought I'd be fine. I wasn't. The pain wouldn't go away!
I learned to live with constant pain. It's tough. My feet tell me to sit, to stop putting my weight on them. My fingers tell me to stop opening those bottles. But my kids are small, my work is physical, I need to travel a lot and spend hours on my feet, and I learned to manage.
The toughest part is the mind. The teaching yourself that bad days may be many, but there will be good days.
 |
| Lady Gaga has it. |
 |
| Lucille Ball had it. |
But even tougher are the ones who have no idea of what you have or a battling and are eager to dispense knowledge or lack thereof! (Remember the ones telling me to stop being lazy! Just do some weights everyday and your arms will be toned). You will have these ones too. Some will be close friends, some family and some well meaning random strangers you've just met! Ignore them. Smile politely and move on. It takes practice. I wanted to scream at them. But you can do it.
The positive outlook! Yes! That is important. You have to not give in! There is pain, for sure. But your mind is sharp as ever. Use it to tell yourself that you can still live your life normally. I do! I run with my kids on good days, I still dance, go on holidays and go for walks. I went paragliding, kayaking, trekking on good days. And I lay in bed and moped on bad. it's OK to do both. On bad days, I look like shit and that's OK. I found make up for those days (that's my coping mechanism. You will find yours). On good days, I'm unstoppable.
Find support. Ask for it. In my case it's my family. My in laws carried my kids for over 2 kilometers on a holiday in Bali. I would never have managed that holiday without them. I explained, they understood and supported. My parents, though they can't do much physically, are always around to make me laugh. My husband! It's probably toughest on him. Suddenly he has a wife who can't sleep, can't go on long walks with him and complains a lot. He learned to plan, adapt and change to suit my "pain of the day." It's tougher on the kids. They are 5 yrs old and can't understand why mom won't carry them or run after them. I am teaching them as best a I can. And now they give me the meds and slow down for me.
Managing it is about asking for support. Remember we are talking about an invisible illness. Which means that people can't see it. They think you are fine. So tell them (at least the ones who matter). Ask for help. Tell them how you feel. And understand that they may have had days of their own. Eat well, rest and trust that doctor.
But above all, treat yourself with a lot of kindness. You know what you are going through. Help yourself heal. It's not your fault and you don't need to be a super hero all the time.
And if you still have questions, ask me! I'm happy to answer or even let you just gripe to me. Now go. Love yourself.
 |
| Holiday with the crazies |
No comments:
Post a Comment