The Good Days

March 20, 2017

I often post about my bad days. It’s the way I let go of my negative feelings and come to terms with what I’m dealing with. It helps me work through my symptoms and decide what to concentrate on. When I write it down it lessens my need to talk about it, hopefully in turn diminishing the burden on my loved ones. When I write I can be honest and authentic about how tough things are. 

I also have good days, and I don’t record my feelings or musings on those days. I’m generally too busy. On my good days I make the most of them. I clean, cook (both for that day and for the days when I won’t be able to), I go outside and take in the fresh air, I play with my son, I meet friends for visits and mutual support, I shop for household goods, I make phone calls and pay bills. On my good days I’m a regular human being, functioning in society, even if I still need to lay down a few times throughout the day. 

Today was one such day. It’s the first day of Spring and the snow in the yard is beginning to melt and become one giant puddle. My 5 year old and I played in the water with his trucks, while also carving paths in the remaining snow for the water to drain. We met a friend of mine for breakfast and went grocery shopping. We filled the bird feeder. Once he was at school I tidied up the basement and primed the last teleport. With my extra energy I managed some self care and waxed my legs. 

It’s so wonderful when I get good days. My chest still hurts and my other symptoms don’t disappear completely, but they don’t rule my day. I can choose to ignore them. 
Every time I measured my heart rate today it was 80. On my bad days just doing the dishes or taking a shower raises it to 110-130. But I’ve been told I can’t have POTS because I have good days. When I asked about it the internalist said my symptoms would be bad everyday. It contradicts what I read from personal accounts online, but who am I to say? I don’t have a medical degree and personal anecdotes don’t carry any weight with doctors. 

On my good days I don’t think about these things though. The great thing about being busy is that there’s no time to dwell on the questions of what I have and what can be done about it. On my good days I simply live and be. I breathe and walk. I cook and eat. Good days are gifts that I open enthusiastically every time one is given to me. 

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She’s Living My Life

March 18, 2017

Sometimes I feel morose and jealous when I see people around me living their lives the way I wanted to. I see their smiling faces on instagram and the breath taking places they’re exploring and the sense of loss overtakes me. I see their chubby babies, the children with their siblings, their business trips and nights out and I grieve for the life that was taken from me. 

My friends are living my life. In my despair I imagine a life that would be perfect if I was healthy, a lie I know, but one that’s so easy to grasp onto. Today that feeling is hard to shake. 

I had an absolutely abysmal day yesterday, that started the previous night. I had visited a good friend in the hospital who had just birthed an adorable and healthy baby girl, her third child in 4 years. She was glowing and an incredible energy to be around. I cuddled the sleeping infant and took in that delightful new baby smell. It was a wonderful visit and I was glad I could be there to take pictures of the happy family for their scrapbooks. 

It wore me out completely however. The walk to the ward seemed particularly long even with my cane. I had to rest for 20min before I trusted myself to hold the baby, even sitting down. The walk to and from my car left me panting and sweating. When I got home I made it to the couch and stayed there until it was time to cook supper, which I never did eat. I went to bed at 6pm, and consider myself unconscious until 10. I was aware of my husband touching my forehead, which started out feverish and ended up cold and clammy, but I was unable to open my eyes or change my position. Around 10 I got up, had a bowl of cereal and an Aleve and went back to bed. 

The next day was horrid. I didn’t even finish my coffee before I went back to bed. I was extremely weak, every time I stood up my chest pounded like it was trying to break free. My son didn’t have school so he was with me throughout the day as I drifted in and out of sleep, catering only to his most basic needs when I was able. I wanted to take him to daycare so he didn’t need to witness me in that state but it was impossible. I could hardly make it to the bathroom let alone outside. 

It wasn’t until late afternoon, after hours of fitful sleep, almost 2L of V8 juice (with added salt), Gatorade and water, that I started feeling human again. My son and I went outside, I sat on the sidewalk and he did experiments with the melting Spring snow and mud. When my husband asked him about his day he somehow only had good things to say about hanging out with Mom, watching TV and playing in bed. I’m so lucky to have that wonderful boy in my life.

Today’s a better day.

Exercise

March 13, 2017

The basement was cold and dark, but I was determined. My morning had been hard but possible. My son and I made the bird feeder that he’d been asking to make for 3 weeks. We still had some deer fat from the fall so we melted it down, added seeds and stuffed it into a mesh bag. We made a big production out of going outside to choose the best spot to hang it, so the birds could find it and have easy access. We also wanted it to be somewhere we could see from inside of the house. 

Then there was all the cleanup, and since my 5 year old had been so involved in the stirring, there was deer fat and bird seed all over the kitchen. It was tiring, but I had promised. Each morning I try to do something fun with him, something that doesn’t involve screens or mass produced toys. If I was healthy I’d be taking him hiking, on nature walks, to the park, or at least somewhere out of the city. The way it is though I have to figure out activities that I can do, games that won’t make me feel like passing out. The bird feeder was a great craft for today, as tiring as it was. 

When I came back from dropping him off at school I watched a movie. It was about a woman who had been coerced by catholic nuns into giving up her son for adoption, and 50 years later she tries to find him. When it was over I gathered my resolve and went to the basement, put on my running shoes and got on the treadmill. 

I was determined to do 20min at a speed of 2mph. Winter is coming to a close and I want to feel safe walking my boy to school again. It was hard. My heart rate kept rising and my chest hurt. I tried to think of what it was like before, when I could just walk without thinking of it. In college I walked everywhere. I didn’t have a choice really, we didn’t have access to a car and the bus system was ridiculous. Walking was second nature and I never gave it a thought. When I moved to this city I walked to work everyday. It was a nice way to start my morning and I always got to work energized and in a good mood. Today on the treadmill, after 20min, I was weak and shaky. My heart rate was up to 145 and the pain was intense. As soon as I hit 20min I went upstairs, holding on to the railing in case I became too dizzy and fell down. I climbed into bed, congratulating myself for accomplishing what I set out to do, promising myself I’d do it the next day also, and slept until my husband got home.

The chest pain lasted the rest of the night. As soon as I finished cooking and eating dinner I went straight back to bed and lay down with my feet in the air, hoping for a bit of relief. 
Then I got this text. 

It hurt. I try so hard and no one understands. Every time I get out of bed I’m trying. By trial and error I’ve found out what I can and cannot do, what’s worth pushing myself for and what’s not. I’m the only one that has to live with the consequences of any exercise I do, and I’m the only one that knows how much it hurts. 

I know I’m weak. I know I’m fat. I know I’m deconditioned. I don’t need anyone else pointing it out to me. When you’re chronically ill people treat you like a child and feel entitled to tell you what to do, whether it be exercise, diet or medication. People stop framing ideas as suggestions or questions and instead give them to you as demands. Solutions that if you don’t try then you’re to blame for your situation. People can talk between themselves and make plans for you without consultation. It stems from a place of love and kindness, but overwhelming misunderstanding of what you really need, which is unconditional support and trust that you are doing what’s best. 

My Rock

March 6, 2017

I remember the first time Dr. P gave me a hug. I had been his patient for just over 2 years, and had seen him mainly to get refills for my thyroid medicine, for ongoing issues after childbirth, and a few sinus infections. That day through I was really, really sick. It was the start of the year that I would be continually ill, catching everything that went around, and then developing a sinus infection on top of it. My immune system was nonexistent that year, and it only started to get better once I was diagnosed with Addison’s disease. 

Dr P had finished examining me for my main complaints, throat and sinus, when I mentioned that I couldn’t hear out of one of my ears. A quick check and He informed me that I had a sinus infection, strep throat, and ear infections in both of my ears. The relief I feel was likely palpable. I was happy to have my suffering validated. I wasn’t a wimp, I couldn’t have pushed through it. I was truly, legitimately sick and exhausted. He wrote me a prescription for strong antibiotics with instructions to go back in three days if I wasn’t feeling better. 

Then he smiled at me, a beautiful sympathetic smile with no hint of condescension. He put his arms around me and hugged gently, just long enough for me to feel his warmth and kindness. I felt supported and somehow stronger and better. This is how I feel every time I leave his office. 

Today I went in to ask for changes to the referral he made for me to a rheumatologist, now that the gynaecologist said I have a connective tissue disorder, possibly ehlros Danlos syndrome (EDS). I had made some phone calls and learned that the wait for the rheumatologist in my city was 2-3 years, but one 2 1/2 hours away was 1-3 months. I finished explaining what I wanted and he pulled out his cell phone, called the local rheumatologists office and made my case for me. He called me a “lovely girl”, with multiple health issues. 

My 2-3 year wait is now reduced to 3 months. 

I hugged him before I left and told him what I’ve told him many times before: he’s my rock, and he’ll never know what he does for me. I can never thank him enough. 

Not Okay

March 1, 2017

I thought I was alright with the pelvic organ prolapse but I’m not. I’m upset. I’m grieving the baby girl I’ll never have. I’m afraid for my sons health. I can’t stop thinking about the fact that he had a pneumothorax at birth, or his two broken bones. I’m tired of fighting for health. 

I’m tired in general. 

My chest hurts today. I did too much yesterday. I walked too much, wandering around a store with no intentions of buying anything. I did another round of purging my possessions, getting more ruthless still. I want nothing. I want nothing to tie me down. I want cleaning to be simple, and to have minimal daily decisions. 

I want simplicity. I want an easy life. 

I feel alone and depressed.