Please Don't Ask Me 'Why' I Had a Flare-Up

I am 67. My husband and I had a great life. We have three sons, 11 grandchildren whom we would see heaps of the time and a foster daughter with three children to add to the grandchildren number. We saw all these family members regularly and felt so blessed that they all enjoyed spending time with us. Our life was busy and we were physically fairly active with swimming and bushwalking.

Then, in the same month as my husband had brachytherapy surgery for prostate cancer, I got the flu. Now, I had been immunized, but this flu was a different strain. Nine months later I finally got to see the lung specialist. I had fluid still in my lungs, some scarring, asthma, an under-active thyroid and sleep apnea! Five trips to hospital in three months indicated that the asthma was a rather serious problem. I was so short of breath that walking for more than 10 minutes was beyond me. If I had a shower, I had to lie down afterward for about half an hour. And I spent many nights sitting up in a chair as I couldn’t sleep if I was lying down.

We went north to a warmer climate for a holiday and I could breathe! So we have ended up having to move 1200 kilometers (about 746 miles) away from our cold climate and our family so I can breathe. At least here in the warm climate, I have not had an asthma attack that has sent me to the hospital! But, my breathing is very rarely in the “OK range.”

Asthma has upended my life. No more bushwalking, no more time with my family, no energy, constant exhaustion, not being able to follow through with commitments to do things and the unpredictability of how I’ll feel day to day are just some of the impacts. I also experienced huge weight gain from steroids and definitely from being more sedentary. Then, whammy – the medication caused type 2 diabetes.

Being in your 60s and chronically ill in a new community is hard. You don’t have your network of friends to support you. You don’t have family to be present or to help out. I don’t have the energy to get out and about as I used to. It is hard to establish friendships. I have changed from an active, independent person to one who is dependent and not very active in the community at all. The chronic nature of this illness brings a special sort of loneliness.

My husband has been wonderful. He was prepared to move more than 700 miles from our home. He checks how I am every day and has taken over most of the household duties. He does the cleaning, washing and most of the cooking. Sometimes I can’t even drive any more and he takes me to medical appointments and the shops. We have definitely become much closer as we have had to come to terms with all the changes that chronic illness has brought.

The one thing that still distresses me though is his constant desire to have me answer his “why” questions. “Why do you get so tired?” ” Why are you having a flare-up?” ” Why don’t you rest more?” “Why have you had this attack?” “Why? Why? Why?”

The answer is: “I don’t know!” I can be fine one day and then bad the next. I just can’t work out what all the triggers are. Some I have identified, but the lung specialist and my doctor can’t tell me “why.” They can’t tell me if it will get any better either. It has been implied that this will just be how I will be from now on. I am at the maximum dose of medications for asthma and I still have bad times. Then, after a flare-up, I have to go though the minute details of every moment of the preceding few days as he searches for an answer to “Why?”

This actually really distresses and frustrates me! I have sort of accepted that this is just how my body is now. I do not make too many commitments anymore as I know I will often have to abandon them. My life is quite unpredictable and I think I can more readily accept this than he can. Perhaps this is because I have such a good medical support team around me and he doesn’t get this type of help. Perhaps he worries and gets scared when he sees me struggling to breathe or sees me sitting in the hospital with an oxygen mask or sees me gasping for breath with tears pouring down my face.

I do wish though that I wasn’t constantly being asked to explain “why.” I can’t answer that! The question doesn’t really help me at all. Lots of other people also ask me “Why?” It would be really helpful if instead I was asked, “What can I do to help you?” Now that question I can answer!