Last Updated on May 3, 2023 by melissanreynolds
It’s hard to explain what it is like to live with a chronic illness that impacts my life at every single moment.
To be unsure what tomorrow, next week and next year hold.
Doing 100 things every day in order to try and create some stability in the symptoms.
I wish I could be more easy going, have less needs and able to go with the flow.
How I would love to not worry about how I will get my rest, what medicine or supplement needs topping up next, whether I can physically manage the responsibilities I have tomorrow.
I’d love to dance with you late into the night and not have to pay for it for the next two days.
It’s a dream to be able to wake feeling refreshed, manage the day, and spend the evening with you, without pain and fatigue hiding in every corner.
For now, the best way to manage these conditions are simple lifestyle changes. Pacing, sleep, stress management etc. I know that these interfere with how much we can do, but they really do help.
You may not know this, but on top of the pain, fatigue, insomnia, brain fog, and other symptoms I manage every single day, I feel guilt. Guilty that I am not able to do All The Things. That I make you miss out on things you’d like to do. That I can’t work more. That I rely on you so much.
All of the research I do, all of the work I put into trying new things and being as well as possible, is for you and our children. I want to be well so I can be the best wife and mama I can be.
I do cost vs benefit analysis all the time. It’s a delicate balance, that choice between what will be worth a decrease in my quality of life and what won’t. But you’ve got to let me decide that. I need you to trust that your wellbeing is a factor in that equation.
Although I need time alone and I can get overwhelmed by a lot of noise, I always want to be with you. Spending time with you makes me happy. Even though I can’t do much in the evenings, I love spending them with you. I can’t wait for when the children require less from me so that I can give more to you.
What would I love from you?
- Take some time to learn about the conditions that I manage
- Ask me what things you can do to help
- Help me avoid stress
- Support and suggest adaptations so that I can join in
- Notice all the things I push myself to do for us and our family
- Believe me
Most of all your love and support. Your understanding.
With your support, I can live a full life. My limitations need not hinder me from achieving my goals and us achieving ours.
I promise I didn’t choose this and that I’m doing all I can to be a good wife.