So this morning as I was in a modified “child’s pose” on the shower floor, wondering if my dizziness was from low blood sugar because I hadn’t eaten yet or low blood pressure because that’s how I tend to roll, I thought back to a conversation I had with my 14 year old son the day before.
I was feeling pretty crappy for reasons unknown because despite diet and supplements and self-care, flares happen and my son was feeling crappy because he had a head cold and his ears were hurting.
He wanted to keep telling me in great detail about how bad he was feeling as we were doing the dishes together.
After doing my usual reassurance of “you are getting better” and sympathizing, all the while wanting to do anything else but bloody dishes which had to be done before I started dinner, something inside me snapped.
And out of my mouth came this:
“Well, at least YOU will get better. I won’t!”
And a huge wave of anger and grief hit me and much of it is still with me today and I think it will be with me for a long time as I continue to process this new life I now live.
I am much better than I was.
So much better.
And some days I feel almost “normal” and normal now for me is those days or hours or moments when I feel strong and happy and full of life and I don’t have any noticeable symptoms of my Hashimoto’s and celiac disease.
Those lovely moments where it’s not brought to my conscious awareness that I am living with a chronic disease because before when I was sick, I was temporarily out of action, or in pain but I had the security of knowing that it would pass and I would be well again.
My autoimmune diseases are not going to go away and that is still something I am trying to process.
Those moments when the knowledge that this is for life, it won’t go away, it won’t totally heal, that I will need medication and monitoring and conscious self-care hits me right in the heart and when it does, it brings a massive wave of sadness and anger and helplessness.
Which got me to thinking this morning as I was on the shower floor waiting for my body to give me the green light to stand up and dry off:
“Why is this happening now when I thought I was doing so well with this?”
And then the answer came to me and perhaps this is what you need to hear as well.
You will hit the wall when a symptom you thought was gone, makes a re-appearance during a flare.
You will have moments when you forget about your condition until something happens that throws it back in your face and reminds you of your new limitations.
You will feel guilty and frustrated because you have to say “no” or feel like you are letting someone down when you don’t have the energy to do things.
You will feel frustrated and angry when people say “oh but you look so well” when you feel like shit.
You will have times when you lie awake wondering what is going to happen to you in the future or so hyper tuned to your symptoms that every little pain and twinge takes your anxiety up another notch.
You will have days or hours or moments of self-pity and not only is that ok, it’s essential.
Because grief comes in waves and new layers of grief will be triggered by different things.
For me, this was watching my two son’s go off on overseas holidays and having to turn down a conference that I was invited to speak at because at the moment, it’s not safe for me to eat anywhere but home.
It’s when I have to remind my family that just because I look well, I still have limits and I still need help.
It’s the feeling of loneliness and isolation that chronic illness brings because it can sometimes feel that you are the only person in the world who is experiencing the symptoms, the frustrations, the anxiety and the limitations.
Navigating life after getting an autoimmune disease is a voyage into the unknown, where all your former certainties are gone and you are left to try to find your own way as best you can.
Because autoimmune disease is so poorly understood, difficult to diagnose and challenging to treat with just medication alone, you also have to find the strength to be an advocate for yourself with medical professionals, a researcher to find out more of your condition and set new boundaries at work and at home with limited energy resources.
You have to find the strength to make big life-style changes like changing the foods you eat or the hours you work and doing all this while dealing with the symptoms of your disease as well as the emotional aspects like anxiety and depression that can go hand in hand with your condition.
It’s about adapting.
And adapting take time.
It’s about honoring your grief and being gentle with yourself as you do it.
It’s about doing the best you can each day and accepting that what you did, good, bad or ugly was enough.
And it has to be enough because it was all you could do.
It’s also about being real and vulnerable and honest and that can be the most scary part of all.
Because having a chronic autoimmune condition leaves you feeling vulnerable and alone and that takes time to overcome and grieve the old life that you had as you learn to explore the boundaries of your new one.
Make sure that you give yourself that time and space to ride the waves of grief and honor them as they come.
I am riding them right along with you.
Kerry.
