Parenting with a chronic illness is hard.
On top of trying to manage your own symptoms and pain, you have to raise your own little human.
I am extremely lucky to have a supportive and understanding husband by my side to raise my 4 year old spirited son.
This week leading into the weekend my son, Phoenix, asked me if we could go swimming as a family. I smiled and agreed, and then started making plans with my husband, Marc.
You see, I am currently on short term disability trying to get my autoimmune disease (Sjogren's) under control. I am working part-time hours, and I struggle with symptoms of joint pain, muscle pain, muscle weakness, muscle cramps and debilitating fatigue.
I know my best times of day are the mornings between 9-11 am. So we planned to hit the pool early in the morning after breakfast.
Saturday morning came, and I woke up feeling like I had been hit by a bus. I had cold symptoms for the past several days, and they hadn't improved much. I ended up going back to bed and emerged from the sheets by noon.
That's the fun part about living with a chronic illness. You never know what you are going to get. You need to be able to roll with the punches, and make adjustments along the way.
Instead of swimming in the morning, we decided to go later in the afternoon. To some this might not seem like a big deal, but if you had pre-planned your outing with family or friends, changing plans last minute (and often), can get increasingly frustrating.
I have an invisible illness. What that means, is that by simply looking at me, you cannot immediately tell I am sick, or disabled.
While I make efforts to spend time with my family, like going swimming at the pool on the weekend, its not always the uplifting adventure people think I am taking. There are so many adjustments that have to be taken along the way.
For example, when we go to the change room, Marc and Phoenix get changed first and head out to the pool without me. I take too long to get undressed and into my swim suit, as I have major joint pain and getting dressed is like watching a sloth eat for me most days.
Once we get out to the pool, Marc usually has to take Phoenix for the majority of the time. My arms hurt to much to hold him in the water or play for too long, and since he is 4 years old, he still needs a parent nearby at arms length at the pool.
If I have the energy, I do some slides with Phoenix, but the stairs take me me a long time, and Phoenix gets sad when all the other children start passing us on the stairs.
Sometimes I'll let him go up the stairs by himself, and I'll meet him at the bottom of the slide if I don't have the energy to climb the stairs.
I spend most of my time at the pool soaking in the hot tub, since its the only place I can sit, and it takes away the pain for a bit.
However children can't stay in the hot tub long, so Marc and Phoenix go off to swim without me.
Phoenix can swim all day at the pool but I can only last about an hour before the fatigue settles in. Marc can tell I'm getting drained, as I sit on the steps leading into the pool. My head hanging in the hands and eyes dropping almost to sleep.
This is when he offers me the key to locker, so I can go back and start getting dressed without them.
They give me a 10 minute head start because, again, getting dressed out of my swimsuit into dry clothes is like running a marathon.
This time around I sat in the change room and felt an overwhelming bout of sadness, as I wished for just a minute that life wasn't so hard.
I enjoy spending time with my family, and soaking up the laughter when we are together.
Today, I wanted to share just what it's like to have to manage chronic illness alongside a family outing.
A day at the pool, is not just a day at the pool when you have a chronic illness. There is so much to manage, you can't leave your illness at the door.
There are times when I feel sad and lonely even with my family.
There are times when I want to cry even when we are together.
Living this life is just not as simple as some might think.
Do you have a similar story? I'd love to hear about it in the comments section below.
Heather 💜
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