I JUST WANT TO BE OKAY

“Someone asked me what are my “Favorite/most useful coping skills – for pain, depression, and all the silly side effects that come with having chronic illness?””

Hmmmm?  Do I have any coping skills, or do I just roll with the flow?  My first thought is that I am only able to cope with my illnesses with the help from my medications.  Other than that, I don’t handle this “chronic illness stuff” well at all. But, I have made it  through many a bad day by remembering some basic things:

  • Accept what you have and don’t argue with God anymore…I don’t mean give up…just accept it

  • Accept help from the people who love you

  • Accept that your HUSBAND and kids are as frightened as you are about this new thing called “chronic illness”

  • Help your family understand what you need…I don’t mean a glass of cold pop or a sandwich…You need to tell them you need rest, understanding , companionship, and sometimes you need to be alone just to be mad at this rude intrusion of illness

  • Help yourself by keeping a journal or blog to express your feelings that you don’t want to share with anyone

I had to accept that I couldn’t drive.

I had to accept that I had to leave my job.

I had to accept that my social life was extinct.

I had to accept that many people just would never understand my illnesses.

i had to accept that my family would not become malnourished because I CAN’T cook every night.

i had to accept that my house would never be clean again.

So, I adapted and tried to do what I could to make my life a little more comfortable without feeling guilty.

My bedroom is beautiful and an oasis for me.  Fleece sheets when it’s cold, crisp cotton sheets when it’s not.  Ridiculously expensive down pillows that are worth every penny I spent on them.

 At times, when I feel bad days a’coming,  I will keep healthy snacks and drinks in my room so I won’t have to go downstairs.

I let my dog and cat sleep with me when I am feeling especially sorry for myself.

I am not embarrassed to ride in those cute little scooters they have at some stores.                                                  

 I am not embarrassed to sit on whatever I can find if I get tired when I am out…and that includes the floor.

 I am not embarrassed to go out without makeup…something I would never have done before I got sick.  I will stay in my jammies all day if I need to.

Sometimes I won’t take a shower until someone comes home because I am afraid I will fall.

 I finally admitted I needed a handicapped tag for my car.

 I let myself cry if I want to.

down_in_dumps

ALL I WANT IS TO BE OKAY

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21 thoughts on “I JUST WANT TO BE OKAY

    • Oh! Our dear Laurie! I can see why she felt happy reading this post. So did I. I like the part about communicating our needs to the people who love us. Companionship. I’ve never thought to ask for that as I relied on my dog so much for friendship. Wow! I miss my dog and our friend. I’m going to think about this post though. Thank you for sharing this and although much time has passed since you wrote this, the message is right on.

  1. It amazes me how much this sounds exactly like something I would say.
    except I have decided to take a chair with me everywhere. I have a walker now….that is super cool…and it has a comfy seat. So when I get tired, I just sit down. That happens a lot.
    Now with the hip problem, I think I might have to use a cart more. I know I will be using a wheelchair more at hospitals and stuff. Walking right now is so over rated.
    Getting a handicapped placard, was no biggie for me, I wanted it bad by the time we got it. Oh please, I just can’t walk that far!

    Not being able to drive is hard. But I’ve had to stop driving a couple of times now. The last time was hardest, since I got the ability back.
    I do miss that. and now since Stuart works out of the house, it is even harder.

    so…to make a long comment shorter…haha
    I love this!
    smooches.
    wendy

  2. I’m very famous for sitting on things at the store. Bags of dog food, empty shelves….anything. Lucky for me I kind of look like an unattended child (if I’m sick I wear goofy bright baggy clothes) so I don’t get much flack for it. 😉

    • People just look at me and go down a different aisle. Once I was actually laying on the ground at Home Depot, my sister asked an employee who was nearby and could see me, if the store had a wheelchair or electric cart. He pointed toward the front of the store indicating that is where they were kept. Unreal.

  3. It was very hard for me to get my papers signed for the handicap license for the first time. (Had to do it twice since I moved states). But it has made my life so much easier. My husband talked me into it, I didn’t want to admit it was a need. The second time I got the paperwork done I actually had my urologist do it, and he didn’t blink an eye. Guess it is common for those with bathroom disorders to get this, I did because of both back pain that comes and goes from fibro, but mainly so I can get in and go when needed. I will also sit anywhere, including the floor, when I need to! I would love to be ok, but I learned a long time ago that just wasn’t going to happen and I needed to be ok with that. Some days I am, some days I am not.

    • Thanks for your comment and I am going to check out your blog. That handicapped parking pass is wonderful when there is a lot of snow on the ground. I just cannot walk straight enough to do it without falling face first.

  4. Hi Mo, You have a wonderful attitude. Yes, life with a chronic illness is a roller-coaster ride. I hope you have some Merry Go Round days. Hugs, Lisa aka HypoGal

  5. I have an idea about how you feel. I have been disabled most of my life. I am definitely sick and tired of being sick and tired! If you get a chance, check out my blog. Thanks for your blog post. Even though I am sorry we are both in the same chronic illness “club”, it’s nice to know there are others who understand.

  6. So sorry for what you are going through. I have MG for just about a year now and I have many of days when I tell my friends and family that all I want is to be okay. Sending good thoughts your way. Take care.

  7. I don’t know what Addison’s is but I’ve got three friend with MS – one is deteriorating quickly and she’s only 42. One is getting worse – slowly – she’s 49 and one is holding her own – she’s 52. I’ve come to realize that while I’m diabetic and it can be debilitating, I’m grateful that I can say “I JUST have diabetes…”
    I watch these three women gallantly struggle to maintain normalcy in their life. The irksome thing for me is when they struggle SO hard to maintain that sense of life being normal and so steadfastly refuse to ask for help when they’re so tired or exhausted one can see they can’t do much of anything… I admire their strength and courage but it makes me feel so helpless and scared… And being the person I am, I’ve been taught in the past two years that sometimes you just have to ask… It’s a very humbling and sometimes humiliating experience.
    Your blog entry gives me hope that some day my friends will allow me the privilege of being there for them – if nothing else just someone to sit with in silence.
    Thank you and I wish the best to you, your family and your friends.

  8. We rally ’round you, Maureen. As you so wisely stated, acceptance doesn’t necessarily mean embracing your condition with open arms. Being “ok” is like taking small bites…..spitting out the bitter when necessary and savoring the good moments as they come with relish. Being open and honest is what makes life a window into your inner being. You do this far better than the average bear.
    So I clink my Twinkie to yours (Would they make a sound in the forest?) and cheer for the feisty redhead inside of you! I would recognize her any day of the week no matter.
    Bravo to you for being the voice that can stir something within us all, Maureen.

  9. This is exactly right, I have Graves Disease, Myasthenia Gravis, fibromyalgia, and its hard not do get down, especially when it feels like my body is not my own anymore. We have to remember (and remind others!) we are the same person inside, and sometimes we need to be encouraged!

  10. Excellent post! I’m and MG patient who also has Addison’s and other “health issues” – I can definitely identify!!

  11. I think you are more than OK, Mo. I think you are awesome.
    I know you have some serious struggles, but it’s the way that you handle them and you continue to move forward in life, even being a friend and support to others along the way, that makes you awesome. And I love ya!

    I also love this post. It’s a great post. (((hugs)))

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