I was scrolling back through recent posts, looking for something, and I got drawn into reading a bit here and a bit there. And all I could think was, “For goodness sake. Out with it woman! Come on now!” How ridiculous it must be for you as the reader to be subjected to all of these posts with their little cryptic hints and glimpses. So I gave myself a stern talking to in which I told myself to either explain the situation or shut up already. In truth I didn’t mean to mention any of this here at all, it just somehow seeped into my writing unbidden.
My issues with sharing this particular subject are that I don’t think I can succinctly explain the situation. There are matters of privacy and stories that aren’t really mine to tell. And it’s just depressing, which is not what you come here for and not what I want out of this space.
The very short version is that one of our children has been quite ill, for a long time now. Over a year now struggling with various issues, with the last six months being desperately intense. Thousands upon thousands of dollars worth of tests and treatments have not yielded much in the way of answers or improvement. We know that Lyme Disease is a factor. We know that EDS is probably contributing to the situation. We know that there are some heart issues that may or may not have been triggered by Lyme. But on the over-all picture, including why the logical treatments aren’t really having the desired effects, we’re still somewhat in the dark.
In the last 14 months, quite apart from on-going EDS/POTS issues, I’ve had two cases of lyme/babesiosis myself (If you’ve not heard of it, babesiosis is tons of fun. It’s basically like having malaria). Steve who is usually a rock health-wise has been dealing with his own complicated medical issues, also still unresolved. That’s not even counting the constant barrage of minor issues that are bound to come up in a house full of seven people.
All of this comes after several years in a row of what felt like one endless health crisis after another. Just to give you a feel, some of the highlights from last year alone included a stroke scare, worries over a potential aneurysm, three herniated discs, three members of the family requiring extensive cardiac work ups, followed by a recommendation of heart surgery for one, a sleep apnea diagnosis, concerns about a potential hole developing in a major blood vessel in my brain, and grounds for a dementia screening when a particularly fierce strain of Lyme went to my brain and I had trouble remembering what a month even was, much less what month it was. Just to name a few. Folks, I’m fried. We all are. It’s just too, too much. And it’s been too, too much for too, too long.
What this means right now is that for three-four of the last six months I’ve had a child who can do next to nothing during the day and who is up literally all night, every night, in pain. And by all night I mean until 5, 6, 7 am or later. With the months on either end featuring maybe a good week or two where things seemed like they were getting back on track, followed by a decline ending right back where we started. As the sole night time parent this means I’ve been up all night on every occasion. Thankfully, Steve is able to take the early morning shift, from 3:30 or so on, on the weekends. But with four other children, I can’t exactly sleep away the weekdays. I’ve been tied to home, deprived of sleep, driven to desperation and frankly on the verge of collapse.
We’re in a “better” period just now. Where I’m getting that last child off to bed once and for all by between 12:30 and 2 most nights. With the child having a degree of wellness during the daytime that we can work with. That picture above was taken just before two in the morning, when I finally had a chance to sit down to correct the day’s school work and prepare for, well, later that same, seemingly endless, morning.
I’ve honestly been very anxious, depressed and over-whelmed within this whole situation, though I am trying hard to fight it.
All the knitting and sewing and “where does she find the time?” projects? This is what I do because I need to be near by, I need to force myself to stay awake, and I just don’t have the strength or brain power to do anything more. And while my little projects are immensely comforting to me, I assure you I would far prefer a well child, a bit ‘o peace of mind and a good night’s sleep.
Sending your family love from ours. I have bizzare medixal stuff going on scleroderma/lupus/chrons..with some of the symptoms of each but not all .so still functioning , but poorly/slowly. I have worried and loved your family as kindred spirits since hmm i think Galen was born .i rarely comment but send you energy and patience on my good days , and when im down , i tell myself that i have only one child at home who goes to public school, spends a few days a week at her dad(my friend) house…and i live in Canada where between my job and our truly unbelievable after having lived in the U.S.A medical coverage for all who live here and send some more energy to you. We have kin d of opposite health stuff. I think e.d.s is super flexy bendy body? Connective tissue?. Scleroderma is too much collegian and is turning me very unbendy flexy. Please know people are sending you and your family silent wishes of better health. Im curious, i was told by my dr that autoimmunity can be in our bodies all our lives and needs a trigger event to activate it. I had a very intense year before getting divorced and leavi g our farm for a tiny cottage than within 3 monthes we were in the hospital for crazy symptoms as the result of a charming lookibg cottage filled with unseen mould! It was 8 months later after feeli g as thoughbi had had a bad flu for all those months that blood work came vack showing autoimmunity and now all that is coming with it. A very limited specific diet helps me some but just when i get cocky and thibk i feel well i get slammed with a flare up. I admire your strength and positivity and your beautiful blog so much.thank you for sharing your story, thank you for reading mine..And thank god for kittibg ,and dreams of sewing…keeps me sane and my children will always have special things mama made.xo im sending you strength and stamina for tomorrow. Xo melissa.
My heart goes out to you and your family.
Oh my…. If I would live close by I would come by and help!!!! It’s what we do in our close knit community. My heart goes out to you. It must be so hard…
I will pray for you. And if you think that there’s something I could do from so far away to help you deal, please let me know.
Hug from a stranger, Rahel
I’m so sorry to hear of all your health problems! I’ve been off work due to illness for the past year and a half and like you I keep crafting because I have to do something even when I literally can do almost nothing else. People often ask where I find the time, or remark that it must be nice to have so much knitting time. But I’m with you – I would rather have my normal, busy, healthy life than this. I think I’m now on a path to a more managed and balanced life and I pray the same for you. You must be exhausted – I hope you have some people around you who can help share the load. If not, don’t push yourself too hard. My husband and I were talking the other night about our life and we have concluded that it feels as though we keep retreating backwards to a position we can manage from. It’s frustrating to keep giving up on things but it’s better than being defeated. I hope you find a way to retreat and rest so your family can heal.
I have always loved visiting here. You are soooooooooo talented with all you do with your
sewing and knitting and cooking and gardening and your photos and your children are
beautiful! I know illnesses and depression can really turn things dark, but someday this to shall pass.
I really appreciate your honesty in sharing when so many blogs seem like fairy tales all the time…..
everything always perfect or so it seems…..that can be depressing in and of itself. I love visiting here and
I will be praying for you and your family. I just want you to know what a blessing you are with this blog to us readers.
You are always such an inspiration and encouragement to me!
You are in my prayers, Corinne
You have huge responsibilities! Not just the normal challenges of a big family. I’m so glad you have shared this; please don’t shy away from doing so in the future. Nowadays these kind of illnesses seem to be affecting many people including myself and they are quite complicated to recognise the condition let alone solve. Like you mentioned they are very costly and mysterious. I think it is important to share them for many reasons especially as it is affecting your family life profoundly and is part of your accomplishments and challenges like sewing. I’m in such a dark period this year with my auto immune disease after suffering for many years with symptoms that have affected my quality life, education studies, relationships and employment. Oh I get annoyed when people say I don’t bake or knit etc because I don’t have the time. They choose not to have the time. You choose. They choose to do other things with their time. Perhaps watch too much telly. Who knows. Anyway I just pray that you get some relief somewhere with all of this. I just can’t wait for a new year to be honest, a new beginning leaving all the problems in the old year. I wish the same for you. Your very brave for sharing this here and please keep the faith. xx
Wow–I cannot believe what you’ve been going through. Do you have any other family close enough to help? Keeping your family in my prayers and hope that this “better period” lasts for the long haul (and you get more answers to what is going on). Lyme is no joke, and I have a friend who had many different health issues that she now attributes completely to chronic lyme (she has been unable to work for years, but was finally able to get on disability within the past two years).
xoxo Kris
I’m sorry this is going on for you right now! Maybe it will help if I tell you I thought of you today when I cleared a clog and essentially water boarded Jackson?? Laughs were had by all (mostly me tbh especially when he pulled loose and I got the dog in her face) and I hope it makes you giggle, too.
I have wanted to respond here, but I never had the head space to craft a beautiful, supportive comment to you. I wanted it to be profound, deep and encouraging.
Alas… I still don’t have the headspace (with kids wanting my attention, the goats mah-ing at me, laundry stacking up… you know), so I will write to you in the midst of showing my six-year old how to write numbers, because that’s what I got to work with.
I’m breathing with you here, feeling into the chaos and pain and heartbreak and overwhelm. I cannot imagine the strain of all this stress.
Our middle son almost died when he was five – six weeks after my first child was born and I was in the middle of terrible sleep deprivation and raging hormones. As he fought for his life in the hospital, my husband Steve and I fought for our sanity. My adrenals got deeply depleted in this stressful time, and I’m still working on healing them.
My kid survived, albeit with a heart aneurysm and all that entails. I know the feeling of constant vigilance, like you are always in fight or flight. It’s a terrible feeling, dear one.
Here’s all I can say to try to support you: the most important thing: self care. Self care. Self care. I know it’s hard and seems impossible, and you might feel guilty when you do get time to yourself and do whatever the heck you want, what feeds you, especially if it’s not “productive”. It’s why I love knitting: because I get to do what I love without feeling guilty, since I’m being productive!
I’m sending you love and light and lots of healing energy.
For what it’s worth: I healed my health issues after reading the book “Medical Medium” by Anthony William. It might not apply to you, but it was hugely helpful to me and many others.
Wishing you and your adorable family all the best !