I guess that pretty much sums it up. This is where I am now, 24-7, trying to convince my body to heal on it’s own in order to avoid the surgery that I’m not a good candidate for anyway because it’s likely to cause more harm then good. Yay for me. As a very brief explanation, I have Ehlers-Danlos Syndrome, which makes me more prone to injuries and less able to heal for them. This is further complicated when such injuries are internal. Before anyone panics, I’m in pain often, but not in any horrible danger. And, I’m not really ready to go into more details then that. Why bring it up at all you may well ask? Because I have a chronic illness. More then one actually. And it impacts the way I live my life and the way my family works. This blog is a place where I document our life. Not all of it, but large parts. In the past I’ve felt really private about these things and I’ve had periods where my health issues were having a huge impact on our lifestyle but not mentioned it here and frankly it made for awkward posting, feeling like I needed to explain why I was or was not doing certain things and not really having an explanation without going into all of the details of what we were going through. So here is my compromise this time. I’m being upfront and saying it; I’ve been unwell and getting worse for a month and a half now. I’m on strict bed rest for the time being, hoping my body will pull itself together and heal itself. At the same time I’m asking everyone to respect my privacy and the fact that at the moment I’m not up for going into more details then that. Deal?
So here I am in bed. Which is honestly one of my favorite places to be, I suppose I should try to enjoy it while I’m here. I am missing being outside terribly though. Sometimes I open the window above my bed just a crack and close my eyes and drink in the crisp fresh air. My dear sister got me one of those things for under your laptop to keep it from overheating so that I can have it here with me, which is very nice. And since we still haven’t moved up into our bedroom, my bed is right next to French doors which open up to the dining room and the whole main living space, so I’m still in the middle of all the action. Yesterday I even started teaching from bed. Luckily none of the kids have discovered that all they need to do to thwart me is to pretend that they can’t find the books I need.
All of this is not particularly easy on everyone. Poor Steve especially, trying to work and run a household as well. For the kids it means more work, but so far they’ve all been eager messengers, running about the house to fetch whatever I might need. And while it’s true that they might have to fix their own breakfast or heat up some leftovers for lunch, the exchange is that I’m here all the time, not running around busy with my own stuff. Which allows for regular games and book reading and cuddles and all that good stuff. The two little ones just bring all of their play things in here and set up elaborate playscapes all around me. Camping has been the latest thing with the two of them feeding me food prepared on a make-shift block camp stove. At the end of the day we have to excavate the bed just to find places for everyone to sleep.
You would think I’d be getting a lot of knitting done, but I’ve not knitted a stitch. My head isn’t in it. When I’m well enough I’m playing with or reading to the kids and when the pain is bad I really can’t think about much of anything. In the times in between I try to rest as best as I can.
I’ve re-painted this room in my head about a hundred times now. Sometimes I’m uncomfortable and I can’t sleep and I obsess on some silly little thing that I’ll probably never go through with, like finding the perfect horse fabric for a project for Elijah or picking myself out a birthday dress that when it comes down to it I’ll never buy, or sifting through wallpaper styles for the upstairs linen closet, which will almost certainly remain painted. At those times my pinterest boards explode with seemingly random things in great abundance. Though I did make the birthday dress board a secret one because it seemed extra silly somehow.
So many things that I had planned this season didn’t turn out. The special pictures of my two birthday babies never happened. Just laying and watching them open their gifts was about all I could offer. But yesterday morning they were playing in bed next to me and I managed to get a few shots. Two days late, but it will have to do.
Iain Alexander age:13
Màiri Rose Irene age: 4
And tonight Steve promised that he would try to get their measurements up on the board in our pantry. Life goes on.
I hope so very much that you recover and don’t need surgery. Best wishes.
Here’s saying a prayer that your body will heal so you can enjoy time with your lovely family.
Christina
Hey that yellow on the walls looks great in pictures! Maybe you should leave it…hope that makes you laugh!…anyways…Keep resting! and I will come up with a way to try to make things easier on you two very soon! XXXooo
so sorry – that sounds like no fun at all – you will be in my prayers for recovery without surgery!!
well, maybe except for the possibility of extra book reading time – hope you have some good novels at hand – I just finished reading ‘The Dirty Life’ and now feel inspired to get out there and garden (in January!)
Sending happy thoughts for fast healing . . .
Wishing you well and a speedy recover.
I’m so sorry to hear you haven’t been well Melody. I pray your body heals without needing the surgery. So glad you have a caring, supportive hubby to help you out.
I loved the pictures…thanks for sharing.
Get well soon Melody! Hang in there!
I loved ‘The Dirty Life’. I’m almost done the book I’m reading now, a children’s book that I borrowed from one of the kids, but I could use some good recommendations for something after that.
Many blessings and wishes for a speedy, surgery-free recovery of at all possible. I can’t even imagine how tough it is with kids and all of the plans one’s head can think up with a body that can’t bring them to fruition.
As for books, I have been enjoying Janet Evanovich’s “Three Plums in One” which is the first three books in the series in one spot. It’s what the movie “One for the Money” was based on. A quick easy read, which to me is about what winter fiction should be like this year. It’s not the slightest bit literary, but kind of pulp-y and fun.
I’ve loved following your Pinterest boards. I’m sorry to read about your health issues. I’m amazed you’ve been able to stay so positive!
I love the photo with Mairi in her ballet slippers! So cute!
She’s obsessed with those ballet slippers. They were a birthday gift. We have more then one ballet obsessed child in this house at the moment. There will have to be a post on that sometime soon!
It’s nothing to be amazed by. We’re dealt the hand we’re dealt. Being mournful about it makes it less bearable, not more. I want to seek out any little bits of joy I can. Thankfully there is no shortage of that in this house.
Oh, and she had to take off the tutu because it was too slippery on his feet! lol
Julie- that’s the horrible orange in my future studio. I’ve been kicking myself for not painting it before now. The kids even jokingly offered to paint around (over…on top of…) me.
Thinking of you and sending you healing thoughts. Love the flying photos.
Here is to self-healing…I will keep you in my thoughts. I remember a time I was on bed-rest and facing surgery, I swear I could feel all the warm thoughts from everyone. I wish that for you. As well as strength and patience for the rest of your family. <3
Ps. Did you read the last few sentences in your post? It might make you chuckle;)
Oh goodness! I think all of the drugs are messing with me head. It’s been corrected!
Oh, dear Melody! I am so sorry to hear you are unwell! I am sorry you struggle with a chronic illness, that it has led you to be bed ridden. I do not know to the depth of what you deal with, but I was on bed rest my last pregnancy so I have some inkling as to how difficult it is at times. You are in my thoughts, I am sending you healing and peace vibes so that you can be up and around and painting and snowshoeing and not in surgery. I do wish we we were neighbors for many reasons, but right now so that I can come and sit on your bed and chat and knit and do what you can’t do around the house.
Love and hugs, Mel
Dear Melody, I am so very sorry to hear about your health! I cannot even imagine how difficult this may be for you, both physically, mentally and emotionally! I will be holding you in my thoughts and send prayers/healing vibes your way. Thank you for sharing a small part of your struggles so that others can lift you up in spirit! Hugs to you.
Oh my goodness – I’m sending you healing thoughts! How lucky you are to have such a wonderful happy spirit, even throughout the hard times.
x
Dear Mama,
I have been following your blog and loving it so very, very much. What an inspiration you have been. Thanks for sharing what’s going on for you. Phew. This sucks. There is nothing else I can say than that… My son lives with a chronic illness, which left him with a heart aneurysm… I know what a crazy feeling it is to not be able to do anything to make this go away.
Hang in there, dear one. I am sending you lots of love and light!
Oh Melody, I am so sorry to hear that your illness has led you to be on bedrest and that you are in pain. I am sending (gentle) hugs and lots of warm thoughts towards your healing. I have read some good, inspiring books lately- I’ll gather up a list for you. Love to you and your wonderful family (most especially those beautiful birthday babies!)
xoxox Taisa
So sorry to hear about your illness Melody! I can’t imagine taking care of 4 little ones while on bedrest. It must be difficult, to say the least!
I read the Tolkien trilogy recently for the first time and LOVED it. So then I started the Silmarillion and loved that too. It starts out slow but picks up around page 200. I’m sure you’ve probably read it, but that’s what I’m enjoying lately.
I hope you start feeling better soon!
No one can stand that lady who says, “oh, I know how to cure that.” I know, as a genetic issue, your condition isn’t really adjustable. I just wanted to say that I have had great success with a combination of daily juicing and nettle infusions. I was experiencing some scary symptoms last year (I have six kids and I’d really like to be here to raise them). After a while of three juices a day (even just carrot apple- gets so much raw food into your system) and the nettle infusion (susunweed.com if you don’t already go there), all my scary symptoms subsided. I’ve noticed that when I miss a day or two, some of the smaller symptoms are back in a flash. I’m sure drinking carrot juice won’t cure your genetic disease, but it sure helped me. I’m also a low-grain vegan now. AND, since you’re stuck in bed, for inspiration you should check out “moonwatcher’s” blog on fatfreevegan.com. Her life story and her story of managing her diseases (CP, MS and FM) with food. Beautiful lady, and very humbing for me. I hope you heal- chronic pain is LAME and no one can really understand it till they experience it first hand, IMHO. <3 you and your sweet family!!
I don’t mind at all. I want to be better. The more ideas I have about how to do that, the better off I will be.
Thank you for sharing your experience!