Things I Wish I Told Myself When I First Got Sick
Instead of the negative stuff I thought
I was shattered when I first got sick. I felt like my whole life had crumbled to nothing. When I realized I was in this for a long while, I was destroyed. My plans and dreams had gone up in smoke. I’d been married for less than a year and my poor husband was saddled with this disaster. It was hopeless. I was hopeless.
Do you get the vibe that I was spiraling into a world of negative thought patterns?
It’s really easy to do that living with any chronic illness.
I wish I had thought a few different things. Although I’m not sure that I would have listened, I’m going to list them in case you’re not as stubborn as me.
What can I see now that I’ve slowed down?
This is a chance to see a different perspective on life. What can I see differently? Am I looking at anything and seeing more than I ever saw before? (for me, this was the tiny things in nature all around me — bugs, flowers, birds, cycles). Is there time to enjoy something I haven’t done for years? (for me, this was creative writing).
Who am I now?
Who I am always seemed to be related to roles I played. Now that I was bed/house-bound and had no role, what did that make me? For a long time I thought the answer was “hopeless” but over time I’ve begun to discover that I’m a complex person with lots of interests. I’m a constantly learning and evolving soul. I have a lot to give. Sometimes I’m strange and peculiar. A lot of the time others aren’t sure what to make of me. I love me — and that’s been one heck of a journey!
What brings me joy? What makes me happy?
I lost sight of joy and happiness as I wallowed in grief and misery and it took me a long time to find them again. But little things bring me joy — a sunset, a butterfly landing on a flower, stars shining. I’m happy when I’m in nature — sitting at the ocean, wading in water, walking or sitting among trees — and when the sun is shining.
What do I really need to do each day?
While I asked myself this question, I also took note of what I did and didn’t like doing each day and evaluated whether or not I needed to keep doing it — a few things got dropped!
Many of the CFS ‘help’ guides suggest having structure and plans to your day, yet tight structure and plans make me sweat. So, I make my plans as wishy-washy as I can. I know I need some structure, but I try to keep my day flexible.
Each day I need to eat, shower, dress, work, cook dinner, and do something I enjoy even if it’s just for a short time. Each week I need to ensure we have food (make a list and/or shop), clean, wash, go to yoga class, walk. In between those plans, I have time to enjoy life.
Some of the things I enjoy are: Photography, Reading, Sitting outside, Bird watching, Talking to friends and family, Soaking in a bath, Swimming, Visiting somewhere new, Gardening, Cooking by experimentation, Travel, Holidays.
When I have a bit of a relapse, and my energy is depleted, I can easily pare back my activities so I do the bare minimum. I know what my bare minimum is.
If I’m enjoying extra energy, and life is going well, then I can add in a few of the bigger things that I enjoy.
The things I don’t enjoy, unless they’re vital, they rarely get done. Life’s too short and my energy is too precious.
Who are the people in my life that make me happy?
I could ask this question in so many different ways — like, who keeps me positive, who brings joy, who drags me down, who exhausts me, who takes more than they give, who always wants things from me.
When I really looked at the people in my life and what role they had, or what effect on my energy they had, it was a bit of a shock. I seemed to have surrounded myself by a lot of people who drained me. Now that I had nothing to give anyone, many of these dropped away. Those who were still trying to suck blood from a stone, I had to learn to enforce a boundary and keep them from me.
Then there were the people who made me smile, kept me positive, seemed to give and take, and understood when I was unavailable. I could not live without these people. They warm my heart. They give me strength. They’ve stood by me when I struggled to like myself, some even showed me what they saw in me. True friends.
Becoming ill is a loss — of self, of dreams, of health, of career, of hopes. Mourning loss takes time. There is no time limit on grief. Healing takes as long as it takes. So be kind to yourself. Take the time you need. But if you can, at some stage, begin to look for the joy, hope, and happiness. I’ve been on this CFS trip since 2005, and I think I’d be dead if I hadn’t begun to ask these questions and turn around my thinking about life.
Life continues, even with a chronic illness. What I’ve discovered is that finding ways to enjoy this new life, even living with a chronic illness, is absolutely vital.
