Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Monday, May 6, 2013

Who Has It Rougher?

A couple of years after diagnosis, I’ve found many ways to deal with MS. I’ve accepted that I have challenges I never thought I’d have and I’ve found ways to work around them or get help when I need it. I’ve worked hard to deal with my situation and be emotionally okay with it. But my state of mind is not where the emotional turmoil of my disease ends
My Dad is owed by a little dog. My aunt got the dog because she wanted a tiny lap dog, but this dog fell ears over paws for my dad. I feel my aunt’s pain there, the cat I brought home many years ago, swearing I’d leave home if he didn’t let me keep her, fell in love with him at first sight and they bonded into mutual adoration quickly too. Animals really do love my dad. Pop also seems to have a thing for females who end up challenged. You see, the little dog, Zara, has recently become blind.

I talked to him on the phone and he told me about her retinas becoming detached. The vet asked if she played rough with their larger dog or if she might have wandered off, but the likelihood is it’s because she is of a new breed that has a number of genetic issues. Like his daughter’s MS, Zara did nothing to cause her challenge and there is nothing she could have done to prevent it. Pop says that she seems to be adjusting; learning new ways to find her way and get to the food, find him for cuddles and get where she needs to be when he takes her out for a walk. Hmm, similar to my using the cane and walkers to get around the house, strategically placed chairs in the kitchen and a wheelchair and paratransit for appointments.  We both adapted to our situations.

While Pop told me what was going on with the little dog and how she was handing it, he made a comment that really opened my eyes and gave me some understanding. He said she seemed to be getting adjusted but it was just really hard to watch her stumble and bump into things because there was nothing he could do to help her. I asked him if that was why he had a pained look when he visited and I was using the walker to answer the door when my medicine was delivered. He said “yeah.” It’s hard to watch someone you care about suffer when you can’t do anything. He’d love to wave a magic wand and make me MS free and give little Zara her sight back, but he feels helpless.

Zara is getting adjusted, the fact that she is dealing with the new blindness says she’s learning and accepting it. She has no choice and instinct stepped in. That’s like me. I’m constantly learning and dealing with the limitations MS gives me. But although I have my frustrating moments, and trust me, I have my occasional burst into uncontrolled tears moments, I am not suffering, I am adapting; It’s what I have to do to survive. The people who care about me are the ones who are suffering. They suffer because they remember when I was able to walk, dance, and clean the house. They cannot fathom what it’s like to not be able to do those things. And I don’t want them to understand because I care about them and wouldn’t want them to live with my limitations. That’s also why I understand their feelings; because I’d feel the same way if it was any of them and not me.

My own husband tells me he doesn’t think he could cope if he had my condition. But he could, if he had to. When you have a challenge, you learn how to accommodate yourself; you adjust the things you do so that you can still accomplish the tasks you really need to. That doesn’t mean it’s easy, but you understand exactly what your limitations are and just how far you can push yourself. Your loved ones can’t possibly know what you’re going through and it’s even more frustrating to them than it is to you because they can’t help you.

I’ve been much more careful in the past week since having my “hmmm” moment when talking with my dad. The toughest thing I’ve had to learn with MS is how to release a little control and let people help me, but it’s made my life much easier to accept and even ask for help. As with any aspect of life, communication is so important to understanding. Whether I ask or it’s offered, when someone helps me I try to remember to include why I’m grateful. For example when someone holds a door open I say, “thank you that keeps me from skinning my knuckles.” I add just one line that lets them know they’re not just being polite, but they’re making an actual difference. We do things to manage for ourselves to feel less helpless, but there are things we can also do to let people, relatives, friends or strangers who actually do want to help, know that what they do is an important part of helping us cope. If we work together to make it easier, none of us are helpless.

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