We only live once

 The Victorian Government has lifted some of the travelling bans here and so we decided to go for a long drive today. We were so glad to be able to go visit our daughter who also lives in Gippsland. 

We were overjoyed to see a double rainbow on our way home. It was so vivid and we felt like we were actually driving through it. 

Yesterday was a day of severe fibromyalgia pain, but I decided to try to focus on positives and I didn't have to look far. The same daughter we visited today has had leukaemia and she had a phone consult yesterday from her haemotologist, who informed her that she was still in remission.  

Laying in bed last night, I tried to ignore the aching muscles, stiff neck and back and I decided to dwell on the many ways I have been blessed daily. Certainly the blood results were praiseworthy. I fell asleep praising and thanking God for the miracle of her life. 

I woke up still in pain, as the weather was inclement, but I needed to go to the chemist, so I forced myself to get dressed and go. We then proceeded to see our daughter, glad to be able to at last visit someone and drive in the car! 

I know I will most likely wake up in pain tomorrow, but I weighed it up and decided that seeing my girl and going for a drive would be worth it. So I will plan the next few days accordingly.

I will be preparing an easy stew in the slow cooker tomorrow.  I will be doing just the essentials in the house- for me that is putting clean washing away and doing tonight's dishes. With my arms tingling and feeling like my muscles and tendons are tearing, I won't be doing them tonight. They will be there in the morning...

Life with fibromyalgia is a juggling act and a life of constantly meting out spoons and rest breaks. Every day one has to decide if a certain activity is worth the pain to follow it. Sometimes it is.

We have to weigh up the satisfaction and pleasure of today against the certain knowledge of a painful tomorrow. We often have to choose to live and we suffer physically for it.

Fibromites have to plan to live or we will die inside through boredom, loneliness and regret. We must know that we could cocoon ourselves today only to find we suffer tomorrow anyway.

Along with the pain of overprotecting ourselves, comes the feeling of regret. Choose carefully and try to find joy every day. We only live once.

You can't have one without the other!

Having to pace myself yesterday, I woke with some spoons which was just as well as we had to take our daughter to the Alfred Hospital in Melbourne. She is a survivor of APML leukaemia and she needed her six monthly blood tests in preparation for her visit with her haematologist next month.

As we had to be in Melbourne early, we had an early start from home. We virtually just had breakfast, dressed and ran out the door. So no lists or housework plans were made. That will have to be tomorrow.

The trip was 400kms all told and it was very tiring. For all of us. We all had a nana nap when we got home.  We got some fish and chips on the way home as we just wanted to eat and crash.

In this picture of the Alfred, you can see the room I was in when I had my 3 stents put in in 2007. It's the third level, last window on the right. Chris and I would watch the helicopters come in on the heliport just in front of the hospital. It is built over the road and leads directly to the Trauma Centre.

So, housework wise, it was a dud of a day, but we were able to help our daughter with her cancer journey, fulfilling our promise to her the day she was diagnosed. 

In chronic illness you sometimes have to push yourself to live the life you want. It isn't easy: in fact it takes a lot of determination and prayer.  Lots of both. I don't think you can have one without the other!