I am so delighted to bring you this post from Karen. IT Professional, fellow horse lover and chronic illness sufferer, Karen has a hard row to hoe. She is dealing with all the challenges Dysautonomia throws her way, largely, on her own. She does however have the wonderful company of her beautiful animal companions. Three very special horses, Meko, Oscar and Bazil, and two personable pups, Kitty and Milly.
Karen is a deeply practical person with a passion for animals and the outdoors. She lives in beautiful Tasmania. Whenever she can she spends time making the most of her stunning surroundings and the company of her faithful companions; cooking for friends when able and enjoying being part of a close knit community.
I’ve reached the point in my journey of chronic illness where suddenly all of the denial is falling away. As night ends the dawn appears and the reality of my situation arrives quietly, like an early morning winter fog. It’s a cold…desolate…an eerie place to be.
My Specialist, who has gone over and above in his efforts to help, has said there isn’t much more to try. And I have tried to keep those thoughts of reality away, hoping my current trial treatments will be enough to help me to climb out of this latest setback. And always, the hope that perhaps, there will be a magic pill that will suddenly get me back on track to better health.
Lost amongst that fog, I cannot see where my journey will take me and what the future holds for me. Feeling cold and somewhat numb, I realise I need to pull myself together, to prepare myself for when that fog eventually clears. The key words here are ‘Me’ and ‘I’. Not ‘The Specialist’ not ‘The Medication’ not ‘My Friends’. I cannot find them through this fog. So I look down at what I can see….my hands, my arms, my legs, my feet and I realise that they are all I have to help.
All the things that I either can no longer do, or which cause great expense or payback, come to mind. I think of my dreams of being healthy and active again, living life to the fullest. I think of watching it all pass by me, the whole impossibility of the situation, and a few random tears begin to fall. I’m so glad that shrouded by this fog, nobody can see me like this.
And as the fog begins to dissolve, I see clearly what matters to me the most. My beautiful animal companions who worry over me, who are there for me, the ones that offer me a hug when there are some tears or when I just need one. I can give them a better life if my health improves. Walks along the beach, rides along those bush trails, drives to mysterious destinations yet to be discovered. New experiences. This is what I have to work towards and hope for when the sun re-appears.
I muse a little more. I make some plans. I make a decision in the depths of that fog. This is my tipping point. This is where I need to take control of my own health and not expect others to fix it. It’s a wake up call. I promise myself that I will do what I can to climb out of this valley I’m in. I think about how the introspection within the fog has allowed me to centre my thoughts on me. To block the distractions out and decide on a new direction.
As that fog makes way for the bright sunlight and the brilliant day that lies ahead of me. I know I must take advantage of this day to put my plans into action. To reach my goals in life. To climb out of that valley myself. I know that next time, I will recognise that fog as something beautiful. Knowing that I am in charge of my life and that I got through it before, into the light of a sunny day.
It was all part of my Gastric Emptying Study. The radiology department laced a pancake with radioactive isotopes and gave it to me to eat. They wanted to watch how well my body made short shift of my new friend. Considering what it was made of, it didn’t taste too bad, but I wouldn’t exactly have said that I wanted to hang around with it all day. But regardless of my feelings on the matter, my new friend decided that we had a special connection. We were destined to be together, and four days later, here we still are.
Like the visitor who settles in for the duration, Radioactive Pancake wanted to stay close. It liked me. It certainly liked my stomach. I managed to get it down my throat (without any maple syrup! just dry old radioactive pancake). Food, when you are fasting, is food. Hungry Rach is not fussy Rach. So I swallowed that pancake down like a good girl. I sent it on its way. But instead of moving on through, waving good bye at my epiglotis and seeing me ’round (sometime later in the bathroom) my new friend settled in for the morning. It lay back there in my stomach, put it’s feet up and asked for a cuppa. Or five.
The idea of the test is that you swallow the pancake and they take pictures of you while you lie in a tube. Actually, you are not even in the pictures, the machine only captures the radioactive isotopes. It measures where the pancake is in a series of shots. If your gastric system is working efficiently, after 2 hours, 90% of the pancake should have passed through your stomach. If it isn’t, you have to stay for longer to get more photos taken. Time lapse digestion. Or, more accurately, time lapse non-digestion.
I can only conclude that my tummy is a lovely spot to hang if you are a pancake. That thing did not want to move. After a few hot drink inducements, and a few more hours, it eventually was persuaded to transit into the small intestines. I finally got to leave the time-lapse-tube and go home. It had taken a whole day.
Dear Radioactive pancake. I know you are still in there. I would like to suggest that perhaps you move to Russia where I believe there are all sorts of radioactive substances, somewhere in the vicinity of Chernobyl, who would happily befriend a pancake like you. It’s been a ride, getting to know you, but I’ve got other stuff to be getting on with now. ‘kay?
See ya later radioactive pancake-inator. Don’t forget the toilet paper.
I had a bit of a turn last night, which always makes me feel so wiped out. My heart rate yesterday was in the forties both times I measured it, but last night I checked it again when I was feeling really awful. It was 173. I was just lying on the sofa, trying to feel better, not moving around. I hadn’t even cooked dinner, just eaten it. It took about half an hour for the slurred words and full body shaking to abate. By the time it had passed, my whole body ached and the muscles in my arms and chest twitched randomly. In the early days, turns like this used to send us to the ER. We don’t bother anymore. I sit it out, hold on for it to pass. But what we do know, is that a turn makes for an extra challenging day the next day. So when I opened my eyes this morning, I wasn’t surprised to be feeling like I am. My body is concrete, my bladder heavy. I have a new weak-feeling/ achiness in my upper legs that I still insist on calling ‘new’, even though it has been there for at least six months. My mouth and eyes are dry as paper, I blink, reach for my glass and swallow down my morning meds. First one, and then another child slides into bed beside me. I smile. It’s part of our morning ritual and I love the snuggly loveliness of having them right there, one in each arm, talking at an alarmingly fast rate about their days ahead. They are full of potential energy, ready to spring into their uniforms, ready to run at a day of schoolyard fun and classroom activities. I envy them that energy. But I am learning to live at my own pace.
By 8am, my family have left for their respective days at school and work. My pussy cat, Ivy, always jumps on my bed as soon as the house sighs into quiet. She is my close companion. When I am feeling very bad, she stays nearer. I have come to see her as a benign confirmation of the state of things. The nearer she is to me; the worse I have been feeling. Today, she is here, right beside my laptop. Last night she slept next to my heart.
Usually, I lie here, propped up on pillows and scan the digital horizon. I look at my Facebook notifications, check on my blog, connect with other people. All this time, I am waiting for the who-knows-when; the time I will know that I can get up safely. It’s a gradual shift in my physical experience of being in this body. Until that happens I just wait here. In the meantime I’ll work on some writing. I just can’t be here without doing something. Today, I read this piece on my friend Sarah’s blog and it inspired me to follow suit. I’m going to tell you all about a day in the life of me… but I’ll split my day into two posts. I blame verbosity. So here we are: You, me and Ivy Cat. We’re in the early hours of my day. It’s a Wednesday.
I am always reluctant to be honest about the state of things here. But I am going to just suck it up and show you, because the purpose of this post is a typical day-in-the-life. Honesty is important. That pile there on the ironing board has probably been there for a week or more. The same with the wash baskets full of clean clothes that have never been put away. The stacks of medical files and paraphernalia on my dressing table are a constant frustration to my hubster. But if I put them away, bending down to reach them out from their homes may ruin an entire future day. I would rather keep them handy and save what energy it takes. But living like this is not how we want to live. I feel the need to say that!
There on the right is my nightstand. Beside it is my box of meds that need to be dispensed into my pill boxes. Beyond, you can see my son’s room. It is a huge mess and needs tidying. But I already know I don’t have what it takes for that today. He can do it, but not without encouragement, supervision and suggestions. Maybe this afternoon we will tackle it together.
It’s 8:30am. I just got a message on my computer from the lovely lady across the road. She and I used to teach at the same school. She is an outstanding teacher and a thoroughly beautiful person. She has been dealing with cancer and all that brings with it. But today, she is going to walk the short distance between our houses so we can have a cuppa and some Bliss Balls together. I am wowed by her determination to do that. It will cost her to make it over here and up the stairs just for a cuppa with me. But I am so looking forward to having some time with her. I am so glad she wants to come.
Before she does, I have to somehow manage a shower. I cannot take it out of the list of things to do today, like I did yesterday. I can’t possibly receive a guest as I am. It will be good to wash my hair. If I calculate the time right, I can get myself up by 9, shower, then lie down again. And that will give me roughly an hour and a half to rest before she gets here. I should be okay then to do all the standing and moving it will take to go down the stairs to welcome her, and back up again, make tea, sit and chat, go back down the stairs to farewell her and back up again to bed. I think I can manage it if I am strict about not fussing with other things. My hubster does a wonderful job of so many of the things that used to be my domain. But guys don’t see the things we see when it comes to houses. And the things he already does are more than he should have to do. So I fight the internal battle of looking at the state of my floors and house and forcing myself to welcome her in to this place just as it is ….of being thankful that the breakfast dishes have been put in the dishwasher and things are relatively tidy. That is my life. It is just this way and there is nothing I can do about it. I can’t afford the luxurious expenditure of energy on things that are all about pride and not practicality. My friend is kind, she will understand.
And this is me, bracing myself for the next bit of my day. I’m about to get up. I’m looking out the window I spend most of my days looking through. It’s a quiet morning out there. There is the approaching and retreating swoosh of the occasional car along our road. A cute elderly couple walk slowly past, arm in arm. A tui calls from the tree outside the window. It’s clear fluted melody competes with the canned radio hum from the kitchen. All the kids of the neighbourhood have already gone to school, the mums are busy doing chores, the career people are being industrious. It’s just me, my window and a few old souls. Peaceful. This is how most of my mornings pass. The strange juxtaposition of peace and torment, passing time and endurance. External quietude and a busy mind.
And now, to shower.
I got up then. Only to be overwhelmed by the nausea. So I am back in bed, waiting for that to ease. Maybe it will, maybe it won’t. I spend the waiting time preparing the photos I want to use for this post. I mentally set myself a goal of getting the whole post done. Then I can shower? That’s what I hope. Giving myself set targets is one way to ride through the symptoms that arise.
10.15 am My hubster came in and checked on me. He’s been working from home recently. He asked me what I had eaten and I realised that I hadn’t eaten yet at all. So he brought me a banana. Sometimes, basic, sensible things get lost in the morning fog. How could I have forgotten about food? I guess I just hadn’t been able to get up yet, so getting up for food is next on the list to that. Further down the priorities.
10:30 am I manage that shower.
11:00 my friend arrives. She’s just recently had surgery, but in spite of all her trials, I see the sparkle of her in her eyes. Last time I saw her she was so fragile. She’s doing wonderfully, an example of true grace in the midst of difficulty. We talk about illness, about teaching, about yoga. She explains that she’s been doing something called ‘relaxations’ which sound wonderful. She is going to lend me a CD to try. It sounds similar to meditation. Our conversation transports me into an enthusiastic mindset; her visit has been so good. The sun shines down and I am pulled on by a desire for the visit not to end yet. I walk with her down to her house. Two ladies. We’ve walked alongside each other to the staff room before. I shake my head with wonder as we make our way along the street. She seems so vital and strong; knowing the battles her body has been fighting I am amazed by her. She’s an extraordinary person. As I wander home, shuffling my slow, faltering steps… I notice the vivid green of the hedge plantings along our street. So vibrant and vigorous the spring foliage is. It’s a beautiful day. Bright blue skies with cotton wool clouds. That feeling in the air that says Christmas is on it’s way. I make it home and collapse again on my bed.
I pick up my laptop and finish this post. It is 12:30pm. Time for a sleep.