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Learning to Live With the Many Ways Chronic Illness Has Changed My Life

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I have been pondering all of the changes that have happened since I became chronically ill. I have been pondering how hard it can be to learn to live with these changes. There have obviously been physical changes. And then emotional, psychological, social and spiritual.

Spiritually I have been forced to face my mortality. I feel quite peaceful about this. I understand that my illness will progress and be the probable cause of the end of my life. I also don’t like to use euphemisms such as “my passing.” I name it what it is, “death.” I have talked about my death with my family, not a lot, but I have started.

Psychologically I have had to work through the stages of grief. Grieving for what won’t be in my life anymore. I have had to accept that I can no longer do everything myself, my independence was treasured and important to me. I no longer have that. Learning to live with this impact has had a huge psychological effect. I had to give myself permission to be dependent. Sounds a bit weird, but at times I still struggle with this. I had to learn to be OK with asking for help.

Accepting all the limitations that chronic illness brought into my life just three and a half years ago has also been like climbing a mountain but never quite reaching the top! That’s because my illness is chronic, it never goes away and flares so easily and sets me backwards again. So the limitations change all the time. I never really finish adjusting!

My social life has almost become nonexistent! I rarely go out. I no longer participate in the groups I once belonged to. Chronic illness makes every day an unknown. When I wake up in the morning I don’t know how well I will be. So planning activities in some ways is rather pointless. If I plan something and wake up too unwell to do it, then I feel disappointed and down. In some way, it is much easier to not make plans at all and just make spontaneous choices when I am well enough. I don’t have sufficient energy anymore.

Emotionally I have experienced just about everything possible! I have had some anger, not a lot. I am getting older, my body doesn’t work the way it used to, so anger wasn’t a huge issue. Nor were “why me” or self-pity or resentment real problems. But I do need lots of information about my illnesses so that I can understand why I have specific emotional responses. Type 2 diabetes is linked to depression, being aware of this helps me to deal with the down times. Some of the medications affect mood; knowing this helps when I can recognize and accommodate the feelings and moods that are linked to the medications I take. The old saying “knowledge is power” is true for me.

There is a great deal of sadness associated with my chronic illness. I am sad because so much has landed on my husband’s shoulders. I am sad for the friendships that have drifted out of my life. I am sad about no longer being able to socialize: I loved my “Aussi Masters Swimming” group, my prayer group, my choir, my sewing group, my Tai Chi group and my friends from various support groups. I cannot participate on a regular basis, these are no longer part of my life and I miss them all. These losses are good reasons for feeling sad!

The expectations I had for our future together have tripped me up too. We had made plans to caravan around our beautiful country, Australia. We hoped to visit every National Park and do lots of bushwalking! Impossible, but a great dream! We intended to go on cruises. This is all out of the question now. I need to be near medical help and we have both gone through a long period of getting used to our new normal. Just another learning needing to happen!

There are some negatives that have arisen from the impact my illness has had on the people whom I love most and am closest to. I have watched the fear on my husband’s face when I have gone off in an ambulance, or when I ended up in Intensive Care, or when we are once again, in Emergency, or when I am having a dreadful asthma attack at home. I have seen his panic. I don’t feel too good when I see this, my response is a bit akin to guilt. I feel that I am the cause of his anguish! In reality it is my illness doing this. I get lots of professional help and this support isn’t available to him. I feel responsible for causing this to happen to him. Intellectually, I know I didn’t cause my illness nor his anguish in any way, but emotions don’t always listen to the logical thinking!

For me, I have had to get professional help to make the necessary adjustments to the way chronic illness has affected every aspect of my life. I have found an excellent psychologist who helps me as I learn to live with being a chronically ill person. Recognizing the need for help was an important step, for me, in learning how to live with chronic illness.

Physically there are just so many changes! I have gone from fit and active to fat and sedentary. I am now obese. I have had to find new ways to amuse and challenge myself. Every single day, I struggle to breathe (severe asthma), I shake all the time. The medications, steroids, have caused my weight problems and my face to change shape becoming the typical steroid shape of a  “moon face” – and I have hair growing on my face that I loathe! Lack of energy and exhaustion are with me every day. My asthma relievers cause severe cramps. Not nice!

From Hashimoto’s disease, my hair has thinned out and I don’t like this look! Type 2 diabetes gives me nausea, headaches, blurry vision, leg and feet pain, if it gets out of kilter. Steroids cause diabetes to go haywire so the nausea, headaches and blurry vision, etc. happen fairly often. The priority is to keep breathing, so the steroids have to be used. It’s a cycle that happens due to the initial illness, asthma. I have learned to listen to my body and to live each day accordingly. I have learned that the consequences of pushing myself are definitely not worth it!

Every chronic illness has its own brand of consequences and impacts. I think the emotional responses are something that we spoonies, or warriors, share.

Photo by Angelina Litvin on Unsplash

Originally published: May 26, 2018
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