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Introducing myself to my Body

Sunday, December 15, 2013

Not feeling my greatest, yesterday and today. I took my MTX (methotrexate- a chemo drug also used for autoimmune disease) yesterday and it made me SO sick...Similarly, the Actemra (and IV infused medicine for the same purpose) made me terribly sick this past time. I had taken MTX two other times in years past and it never made me sick before, although it DID make my hair fall out. So I guess I'm finally going through what so many of my friends on the RAD team have gone through. I always felt guilty for not having any side effects --so I guess I asked for it and now I"ve got it.

I will be staying close to home today...it's Sunday but we had a snowfall over night with some ice so I don't know if we will be having church. Regardless, I'm not going. I am still having diarrhea and nausea today so will just rest.

On Thursday I see the eye doctor again. He wants to do laser surgery on my eyes. I guess I will be in the ten percent of people with glaucoma who need surgery. I hope he does it this week as it will be free for me if I get it done this year. I'm kind of nervous about it. The thought of cutting into my eyes grosses me out. I"ve been told that it is no big deal and not painful. Hopefully that is accurate.

I know that I need to get my body moving again. I get so winded even after just walking up one flight of stairs. I know I need to do something easy, something that won't send me into an asthma attack or cause horrible pain. I so much wish I lived on level ground. My house is at the top of a steep hill so no matter what direction I go, I will have to end my walk by climbing up that mountain...and I know I can't do it. Besides I can't walk through the snow and ice. Probably my best bet would be to get back on that recumbent bike and see how long I can stand to do it. When your body hurts even at rest it is so hard to convince it to move. I know that is no excuse but it is true. Add to that the risk of becoming too breathless and kicking off asthma, well, exercise looks scary.

So maybe I need to start REALLY SMALL. (all this talk about "baby steps") In the week to come I will try to do five minutes on the bike three times. Does that sound manageable? It does and at the same time looks scary. I will have to do a nebulizer treatment before exercising so that the risk of an asthma attack is smaller. Yes, baby steps. When a person is ill and spends a lot of time sitting or laying down....you become a stranger to your body. Your body is the source of a lot of misery. It is hard to befriend that stranger and get it to work for you. It is hard to own it and harder yet to change it. I need to somehow do that. There were three times in my life when I was in great shape and felt good being in my body. Three times where I went from being sick and weak, to becoming strong and thin. I know it can be done and I know it eventually will feel great. But starting out is SO hard...and SO intimidating. Especially when I am unable to use my arms ( I am facing a total shoulder replacement very soon).

Well this week I will do my five minutes. And who knows maybe I can sneak it up to ten.
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Member Comments About This Blog Post
  • CLPURNELL
    emoticon
    2467 days ago
  • ANGRITTER
    It's a wonderful plan to start with 5 minutes at a time. I have one of those recumbent bikes that has a reverse-flywheel and has paths that climb mountains and it automatically gets harder to pedal. Well, I started out doing a few 10 minutes sessions. Now I do 20 minutes, burn my 558 calories and if I don' feel like walking later in the day, or the weather is poopy, I get back on the bike again to burn calories.

    And I finally managed reading while riding, which passes the time so effectively. I keep a fan blowing on me, room-temp water by my side, and a sweat towel. And I feel better for getting it done. It always makes me feel more optimistic when it's over and I feel accomplishment.

    I do hope you get to feeling better soon. Seems like this month is the WORST month to lose your Spark. So find something you love to do and stick to it. Can you walk in your back yard, or is snow sticking yet? It would be nice to be able to stroll around the yard a few times a day, and getting the fresh, but cold, air.

    Gentle hugs to you, my sister. Be careful and stay strong!
    Ang
    2469 days ago
  • ISPARKLE77
    Sorry to hear your medication is not agreeing with you. I too have been on Methotrexate and I do not believe I had a reaction to it other than it affected my liver and my kidneys so I had to go off of it. I have to agree with Linda, the best thing you can do for yourself is to keep moving. Every little bit should be a benefit for your body. Take care. You are in my thoughts and prayers.
    2469 days ago
  • MOM2ACAT
    Sending up prayers that your surgery goes well, and for everything else also. emoticon
    2469 days ago
  • PGHP31CK
    You have such a strong & amazing spirit!!! I'm so proud of you for not giving up.

    Give the bike a try -- if everything does ok, add a little more time. You've got a good plan!

    Praying for you!!!!

    emoticon
    2469 days ago
  • _LINDA
    So very sorry you are reacting to your drugs on top of everything else :-( I have been on methotrexate I think about 30 years and never had a reaction. One thing my specialist recommended was getting enough folate with it and this helps prevent the side effects. What dose were you put on?
    I don't remember what it was like to have a normal body any more. I can't even imagine it. I know it will never happen, just like you. You are doing all you can. Maybe the bike isn't the answer. Just moving, walking. Sounds like just getting around your house is a huge challenge. Move as much as you can, even if its just a little bit, throughout the day. That is all some people can do, to start. Just get around the house. Little steps. Walking shouldn't trigger the asthma.
    Keep trying, you can do it!
    emoticon emoticon emoticon
    2469 days ago
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