roller coaster
Oy. My emotions are all over the place. I feel like I am on a roller coaster, up-down, all-around. I want this ride to stop.
Yesterday we had a good learning day. I was feeling stronger and more cheerful and the kids are certainly ready for me to be learning alongside them again. Annesley and I read books, played Go To The Dump and Addition Memory, talked about her future life as a mom (hilarious by the way), and had great fun. Fisher and I did math and read and did some geography stuff – he is currently obsessed with mastering all the states, which is perfect since next week he starts taking a class at iFamily all about the fifty states. We talked about decimal points and polar bears and marine turtles. Lots of things. So fun.
Then I had Keziah pull out some of our amazing books from the book box. Throughout the fall I collected some books to spruce up our winter learning. I bought some through Jessica’s book co-op and some from Book Closeouts. I gave some for Christmas gifts, but I kept a stack of them to pull out on bleak January and February morning or to sneak them into each child’s school bin to discover all on their own. Yesterday I decided it was time to pull out the first book, We’re Sailing To Galapagos. They loved it. We all loved it. The artwork, the story, the rhyming, the animal descriptions, the detailed information in the back. All of it is fantabulous. Annesley sang the sing-songy poem for the rest of the day.
So, we read another. One Moose, Twenty Mice by one of my favorite author/illustrators, Clare Beaton. I love what this woman does with felt. We grouped by fives, we counted by twos, we giggled and discovered and had so much fun snuggled up in my bed.
So, we read another by Clare, Zoe and Her Zebra. This is an alphabet book with a child for each letter being eaten or chased or something by an animal starting with the same letter. The children were able to guess most of the animals, but some were tricky and we had to flip to the back to find out the names. Umbrella bird? Never heard of that one.
Again, so much fun. And my heart was full of gratitude for my life as a homeschooling mother. Grateful for my body that could snuggle my children and learn all about animals and islands and seven + eight. Grateful for children who love me and want to be with me. Grateful for my warm blankets. Grateful for books that open up the world to us. Grateful for Blythe’s mentors who have put an amazing play together and brought out the best in their acting students. Grateful for so many things.
Then I fell apart. Again. The falling apart is kind of long…bear with me.
Keziah reminded me that I have GOT TO BUY A PRINTER so she can get her lesson plans printed for her iFamily classes, print out the paper she wrote yesterday, print out my genealogy stuff, and I need to DO IT NOW. I agree with her. Completely agree. But I have this problem where I must know all the ins and outs and pros and cons and every minute detail about a product before I buy it. It is a good thing. It is also a bad thing. A very bad thing. I researched cloth diapers for a full six months, every single day, before I decided on a brand. Same with a car seat. Same with our recently purchased and then crashed to smithereens Subaru. So, I want to make to sure I buy the “right” printer – as if there is one right or best printer…I am deluding myself, here. So, I hopped online to make a final decision on the whole printer thing. I read. I compared. I called Brother International and sat on hold for 20 minutes. I continuously got dropped off my internet service, because we have craptastic internet service, and I got more and more frustrated. Then I decided the printer issue was going to have to wait. I was going to once and for all conquer the internet problem. So, I started searching for a reasonably priced ISP in my area. More frustration. The prices, contracts, and unhelpful customer service people were enough to make me scream.
Sidenote: On Saturday, I had also tried to solve the internet problem and decided perhaps my problem is with my router and not my ISP. Richard’s laptop and our Kindle were no longer able to connect to our wi-fi and so maybe, I thought, the router was dying. I first spent 45 minutes on the phone with Amazon and was asked a gazillion questions about my router that I couldn’t answer because I couldn’t physically get to my router or to my computer where all the information is. I kept explaining that the Kindle was connecting just fine a few weeks ago, but now it is not, but still the cheerful, but unhelpful Amazon rep was unable to help me until I answered gobs of questions I had no way of getting answers to unless I could get out of bed and into my basement. So I decided to call my router company. I got on to Netgear’s website and read all about issues with my router model and finally decided I just needed to talk to someone and explain what was going on and have them tell me if it sounded like an ISP problem or a router problem. So I called Netgear’s “World Class Gearhead Service” and received anything but world class service. I got David, a man who could barely speak English and the English he did speak was so accented I could understand hardly anything he said. David, spoke with a syrupy, condescending tone and provided no service at all. He asked for my serial number, but since I couldn’t understand him and only grasped that he was asking for a number of some kind, gave him the model number. To which he curtly responded, “SERIAL, S-E-R-I-A-L.” Restraining myself from biting his head off, I told him I would call back when I had it. I called to Keziah and explained what I needed and she went and wrote it down for me. I called back and somehow got David on the other end of the line again. I gave him the serial number. He said that wasn’t right either and told me to pick up my router and look on the bottom and find the word serial and read him the number. I explained that I couldn’t do that because I am in bed and I would have my daugher get the correct number and then call back. Once again, I explained to Keziah what I needed and she went and wrote it down for me. By this point, I was done with David. I called Richard and ranted about the whole thing and gave up on solving the router problem that day. When Richard got home, he called the absolutely-not-world-class-service center and got you know who, David, again. He gave him the correct serial number and was informed our router was past its Service Plan and that if we would like to purchase a $99 Service Plan he would be glad to answer questions.
ARGH. Of course we don’t want to buy a $99 Service Plan. We could just buy a new router for that kind of money. We just want to know if we need to buy a new router!!!
End of sidenote, back to Monday.
So, I decided to call some ISPs and get some answers. I finally talked to a lovely man in the tech division of a company that is merging with my company and he explained why my internet signal has been so horrible and gave me lots of information (which I LOVE!) about how it will be improving. He listened to the whole story of connection problems and told me how to do a factory reset on my router and how to figure out if it is a router problem or an ISP problem (I think it is some of both). I wanted to take him to dinner for all his wonderfulness.
At this point, I decided I was going to have to walk downstairs and do the factory reset on the router myself. I hobbled down the stairs and was doing pretty well. I reset the router, unplugged everything, waited 30 seconds and plugged cord one back in, waited another 30 seconds and plugged cord two back in. Tested the Kindle again. Still no connection. ARGH!
I decided since I was already in the basement, I would get onto my computer and figure out my router settings for the list of questions from Amazon. I sat on my kneeling chair and got to work figuring out MAC filtering, access points, and broadcast signals. I started feeling awful. My back started spasming, my left kidney started throbbing (it has been flaring up since the passing out began), and my head felt as if I’d been hit by a sledgehammer. I gave up on the whole fix-the-router plan and hobbled back to my bed.
Once there, I started crying at the pain. I am so, so tired of hurting. My whole body is worn out and at times like this I want to give up and never get out of bed again. Keziah came in to check on me and saw my face clenched up in pain and gave me a lecture on how I should not have gotten out of bed and I should not have tried to sit at the computer. I know she meant well, but it was the last straw. How did I become so debilitated that I cannot even sit on a specially configured kneeling chair? Why has my body betrayed me? When will I stop hurting?
Full on pity party ensued and I cried and ranted to myself and tried to relax and help my back stop spasming. I was so, so frustrated with the technical difficulties of my gadgets, the phone calls from State Farm about the accident, the fact that I only have one week to be back on my feet before iFamily starts, and the lack of money and brainpower and time and control to solve all these problems. Then I put my head back on and told myself that all those thoughts aren’t at all helpful and I am blessed and so loved and I could be much worse off and sitting isn’t all its cracked up to be anyway and surely there are powerful lessons in all of this and my job is to learn them and grow in my relationship with God and stop feeling sorry for myself.
Then I called my techie brother, Cameron, and winced in pain as I laid out the whole story. He thought it sounded like my router is dying and recommended a few options. He told me I should have called him before I did all the above nonsense and he is right. I should have and would have saved myself hours of pain last night.
I didn’t get much sleep because I hurt so bad all night long, but now it is a new day and I going to try to be cheerful and positive and calm. Fortunately for Blythe and unfortunately for me it is her first day of performance in The Canterville Ghost, the play she has been preparing for since October. Richard and the other children will go to all the performances and I am hoping to be strong enough to go by Friday. Today I will miss this important moment in her life and it is frustrating me beyond belief. Last night’s jaunt downstairs showed me I should not try to go tonight. Today I want to scream. Today I want to pound the walls. But instead, I will read to my children, teach them some math, and try to spread the love of my heart into their souls.
When will this roller coaster ride end? I want to stay in a place of peace, but I keep getting spun around into fear and pain and anger and grief and hopelessness.
I’ve ridden that roller coaster before. What can you surround yourself with that will help you stay in peace? I generally find music helps me, so if I find myself there I try to keep music on a lot. I hope you can get off the roller coaster.
I don’t know what will help. Listening to my girls practice their violins and piano does bring some solace. Listening to scriptures helps. Praying and praying and praying helps.
But I’m still on the ride. And I want off.
Keep your head up, it will get better. I know it’s hard to see that light at the end of the tunnel. When you’re scrunching your face up in pain, holding your breath, and everything appears to be falling apart, have faith in knowing it is there, and you will get to it.
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I just wrote a long post on staying positive and feeling better, resting, but really what I want to say most is, let yourself grieve. I know that’s probably how you’re feeling. To get a diagnosis is not easy, it’s like someone just sentenced you to life in prison. You feel trapped and it isn’t what you wanted; how did I get here? Someone has set these limits on you – you may have already known some of those limits, but for someone else to be telling them to you it’s like you’re losing control of your own body, mind, and soul. Give yourself that time to heal and learn about your body. Cry when you need to, grieve for things you may feel overwhelmed with or feel may not be possible now, and things you may miss out on. Don’t deny your emotions, they will help you through this so you can move on to being happy and healthy again.
Everything comes with time. You will learn to manage your time better, plan your day knowing how much you can do and can’t do, and take off days when you know you need it. You’ve probably already been doing it subconsciously, but bringing it forward to the conscious thought process will help you cope with what’s ahead. Let it come on it’s own, try not to rush yourself.
Don’t let your illness take over your life, let your life manage your illness. Remember that it doesn’t define who you are, it is simply a part of your life. Just like those dishes that never go away, or that laundry pile that sometimes disappears for a day or two, but sneaks right back in. ;)
xoxox
Jenn,
Thank you for your thoughts. I think you are right about taking some time to grieve. I think I have been thinking that grieving about it would make it real…and I don’t know if I am ready for EDS to be real to me. I keep thinking this must all be a dream (or a nightmare!) and that life will go back to normal and I will just have some loose joints that are disconcerting, but not really life changing.
On the other end of the spectrum, I long for a Tempurpedic mattress that won’t make my shoulders dislocate, am wondering if Prolozone shots in all my joints would be helpful, and am researching EDS to death.
But admitting it is super-duper, 100% real scares the daylights out of me.
Mattresses! Who knew they could be so dangerous! ;) My shoulders dislocate in the night as well, often causing my ribs to sublux at the sternum joint from poor posture. Have to say, I laid on a memory foam mattress for over an hour once in a mattress store and it still happened. If only I weren’t a side sleeper!
It is a little scary, and try not to stress too much. You can research your eyes off, but not everything you read about EDS will apply to you. I don’t have velvety skin, I have traits of vascular while being hypermobile, and compared to a few friends of mine with EDS mine seems “mild”. Every individual is affected to different degrees within each symptom.
It isn’t a terminal illness, thank goodness, and while it does change how you manage your life, it doesn’t have to change your life. I hope that makes sense.
Hang in there, with time you’ll feel more comfortable and it wont seem so scary.
xx
The memory foam didn’t help??? Ah, man. I have heard so many people with dislocating shoulders say it helped significantly. My sternum pops out of place when my husband hugs me, but not when I sleep.
Thank you for your encouraging words. It is so lovely to hear your wisdom.
It didn’t seem to help much at all. Our current mattress, which we decided on after that failed test, uses latex and memory foam. It’s an ok balance, and if I don’t toss and turn too much I don’t end up with injuries. I found the firmer mattress to be a bit better than the soft, where I sank in and had really poor posture. My left should is so loose I can dislocate it with 3 fingers, so it’s more my right that I worry about these days(in other words, left is so far gone not much will help it, wanting to preserve the right and prevent it from getting so bad). I’m hoping the left hangs in there ok, but surgery may be an option in another 5-10 years, to repair the damaged cartilage so it’s not so bone-on-bone.
Guess it just comes down to the individual! Might help you, but I know it wasn’t that helpful for me! Surrounding myself with pillows works best, to keep from having poor sleep posture and from moving around so much. Can’t say my husband is a fan of it though! Lol
If you want to pity party together, I’m totally the person at the moment. I dislocated my kneecap walking/running with my kids at a park yesterday, and managed to tear a ligament at the same time. I’m on bed-rest duty for at least a week, and seeing as it’s my left leg I can’t even manage to drive anywhere for a minimum of 3-4 days as it’s manual and there is no way I can bear weight or release and engage the clutch! (Forester, we’re a subaru-loving family too, RIP to your subie)
Yay for totally random weird injuries, said no one ever. :/
Oh dear! Your knee injury sounds painful and frustrating. I am so sorry!
Have you heard of Prolozone injections? I’m sure they would help the ligament in your knee and your shoulders as well. I am amazed at what they have done for my hip.
I dream of a mattress that won’t hurt me. I have heard good things about the latex combos. First, save up the moolah, then go test some out.
Tracy, oh my goodness, I’m so overwhelmed for you and all the thoughts and realities swirling around in your brilliant and over-analyzing mind. This must be terrifying for you. I’m sure you are thinking far into the future and all the grim possibilities and trying tp plan and organize for every scenario. Please live for right now. It sounded like such a wonderfully snugly day with your children learning by your side. I wish I could wish all things better. I wish I could hear laughter in your voice. I wish I could see health and wellness and wholeness and stability and integrity in all your joints and ligaments. I want all levels of vibrancy for you! Please don’t keep beating yourself up because you have to be strong somewhere — you have to keep your heart and soul and esteem strong in order to survive your body’s lack of strength. Every XX and OO to you!