Thursday, July 2, 2009

An Honest Update

This has been a tough week. Monday was a pretty good day, but I've had a really rough time since then. Usually I don't tell people much about the "bad days," but Will said that people need to see the bad side, too. I'm not always sitting in my wheelchair smiling. Some days I am physically too weak and tired and brain fogged to have facial expressions. I am sometimes too weak and tired to get out of bed and sit up. The act of simply waking up is a challenge, and I fight my body to wake up and eat and drink.

This is how I have spent most of this week.

People often say to me, "I don't know how you do it." They don't understand how I can keep up with a now three year old while spending my life sitting and lying down. People want to know what my daily life is like, how I keep up, and how my son is so healthy and happy despite having such a disabled mother to care for him all day.

I had a couple of blog posts that I wanted to write this week that would describe in better detail what good day is like, what a bad day is like, and how I manage parenting from bed. If you really want to know about the good and the bad, come back next week. As long as I'm physically able to type it all up, I'll share what an average good day is like, and what an average bad day is like.


  1. I'm sorry to hear you're having a bad week :(. I hope this weekend brings you enough rest and rejuvenation that next week is much, much better.

    I do look forward to reading about your days, I think you are amazing. But only when you have the time and energy to type!

    Also, I love your purple bedding :). I've been trying to convince my hubby to do a purple theme in the bedroom of our new house, but I think it's a losing battle :).

    Have a great weekend and feel better!

  2. oops I just read over my comment and the wording was wrong. I think it reads as though I only think you're amazing when you have time and energy to type. Not what I meant! What I meant was that I think you're amazing and I want to read about your days when you're up for writing about them!!! :)

  3. Rachel,
    I do agree with Will about sharing your 'bad days'. It's so hard to do though. :( Sometimes the last thing we want to do is write about it, but sometimes it feels good to be honest too. I struggle a lot with how honest to be and I was really grateful you had the courage to be honest in your post today. Otherwise, I do worry that I/we give an unrealistic picture of our illness and disability you know? We smile when we can, but some days it doesn't happen and we can't always be the 'happy sick person.'
    On that note, I still think you do a really amazing job with what you deal with. And I will definitely stay tuned for your follow up posts when you are able.
    I'm sorry you've had such a wretched week.
    I did laugh at the stuff next to your bed--all of the necessities! :) That's why I got such a big nightstand! LOL. Love the purple bedding too.

  4. Jess,
    Don't worry. I knew what you meant. :)

    About all the purple - purple is my absolute favorite color. It just makes me happy. My husband is color blind, and he can't see the color purple. It usually looks blue to him, so it's a win-win situation for us. :) I do wish he could see purple, though. I like the color so much, but I am particular about my purple. I actually don't like every shade.

    In decorating, I mix the purple in with blue, green, and cream in the bedroom. In the living room and kitchen I have sage green, tan, and cream mixed in. Maybe a combination like that would make it easier for your husband to go for?

  5. Thanks, Em. You're right. It is hard to balance out the good days and bad days when talking about illness. I don't want to complain, but I don't want to give an unrealistic picture either.

    I think people see me in my wheelchair and get the impression that as long as I'm in my wheelchair I will be doing okay. But it is HARD to sit up in my wheelchair! I have to recover later from wheelchair time.

    Just wait until you see the uncropped picture next week in my "A Bad Day" post! The stuff and mess is worse than it appears in this picture!

  6. Hi Rachel,
    I'm sorry to read about your bad days, but I do agree that it's healthy to talk about it. I find writing to be extremely therapeutic.
    I hope you are feeling better, and I will be back to see how you are. Take care of yourself,

  7. Wow! I have never heard of this illness and I'm so sorry you have it!

    Hang in there! If you need to talk, I'm here. Just let me know you need an ear.

    I hope this week is filled with "good" days!

    Visiting from SITS. Happy 4th of July! I hope you have happiness fireworks often!

  8. Thanks for stopping by and entering my giveaway! I hope you have a better week this week!

  9. Ooooh I'm kinda jealous that your hubby is colour blind! Thanks for the decorating tips!! I'll be sure to post photos once our negotiations are complete and we have our new house set up and decorated :).

  10. Hi Rachel,

    I have been reading your blog for quite a while and I greatly admire your strength, courage and faithfulness to our Lord through all that you have had to endure. You truly are an inspiration. Reading all of your tips and strategies for managing this illness really gives me a lot of encouragement and hope.

    I have been struggling with Dysautonomia now for 2 years and it has been a major life altering event that has left me pretty much completely disabled. Thankfully, though, my 3 daughters are all either grown or almost grown. I can't imagine having to take care of a toddler! I am completely bedridden (well, I can usually stay in my recliner for a good portion of my day) and I must have help with almost everything that I do. I simply can not imagine having to take care of a little one at this point in my life.

    I just started my own blog. I have been working on getting it up and running for quite some time now. However, I have been in the hospital twice over the last three months with sepsis and it has just taken a long time to pull it all together. In fact, I just got out Monday from a 7 day stay. I'm hope things will settle down a little now so that I can start posting on a regular basis. I think having it up and running will really help to keep my friends and family up-to-date, especially when things like prolonged hospital stays occur.

    Anyway, I hope you will stop by sometime and check it out. I would be really be honored. There's not much there now but I hope to add more and more to it as the days go by. I have put a link to your blog there. I hope you don't mind.

    Well, I sure hope you start to feel better as the week goes by. I will keep you in my prayers.

    Many, many blessings,


  11. I'm sorry to hear your not feeling well. I will definitley be back next week to make sure you're doing better :)

    Stopping by from SITS


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