My First Taste of Freedom

I was behind the wheel of our car, when Phil rang. We were enroute to the MOT garage in our nearest town, driving in convoy. Except he was ringing to say we weren’t. Turns out that after two months of chilling on the driveway, the campervan battery was dead. So instead, he was five miles away, drinking tea on our sofa. My stomach actually dropped. Vulnerability flooded me. Anxiety started tapping at my head. What should I do? Drive home to the security of my hubby and house? Or continue to the garage on my own?

Most people would have carried on without a second thought. But for me, it was a big dilemma. Since developing Pulmonary Hypertension, nearly nine years ago, I rarely drive. A handful of times a year, always down quiet country roads, and generally with Phil in the car or close behind. Yet, to get to the garage, I’d need to manoeuvre our estate vehicle through the town. Busy roads, honky drivers and in a car that was too big for me! Plus I hadn’t parallel parked in years!

Furthermore, since becoming ill, I rarely venture out solo. Most of the -often unpredictable- symptoms that dominate my life, leave me feeling vulnerable and exposed and unsafe. I no longer fully trust my body. I no longer feel assured that I can look after myself always. If I use too much energy, fatigue forces me to lie down, regardless of where and when. If I became breathless, or need extra oxygen, I need someone to retrieve my back up supplies. If my wheels break down, I can’t walk to get help. And if someone were to attack me, I’d be too weak to defend myself. So, outside the sanctuary of my village, I prefer to be accompanied. Normally by Phil. If I need to go to a hospital appointment, he’ll drive me there. If I want to go on a dog walk, he’ll come. If I’d like to go shopping, he’ll be by my side. Or at the end of a phone. As long as he’s within reach, and able to rescue me, I’m happy. 🙂 Except this time he wouldn’t be.

And yet, I felt confident and happy to carry on. I was having a good day, in the middle of a good turn of health. Stronger, healthier, fitter. I felt sure I’d have enough energy coins to keep me awake and safe all afternoon. I’d been practicing my walking, so could hopefully walk a couple hundred metres if needed. And as long as I didn’t venture too far from my car, I’d be within reach of spare oxygen. So I carried on.

And whilst the car was having its exhaust checked and its tyres tested, I walked -yes walked- to the Waitrose down the road (about 400m). Wandered the aisles, bought myself a magazine, and went to their cafe for lunch.

And I felt wonderful. Independent. Confident. Dare I say, normal. I remember the first time I ever rode the bus alone, enroute to my teenage Saturday job. I remember the excitement, the exhilaration, the pride of being solo in the big bad world, for the first time. It felt just like that. But more. When you’ve felt unable to do something for nearly a decade, to suddenly be able to do it again is magical.

It was just an errand that most people wouldn’t think twice about. But to me it was the first step towards more independence. 🙂

3 thoughts on “My First Taste of Freedom

  1. Well I have to be semi independent as the husband is 7 years younger not retired yet . Plus a rescue dog to look after .So sometimes I need to get to appointment s by my self
    I went to royal Papworth hospital by my self Friday . .But hubby took the dog to to day care over night and me to train . He had to work . It’s easy getting to Royal Papworth train bus . I push the oxygen on a carlett trolley . People will lift it on off train without asking . . But I used to very indentpent . I do go on the bus alone . Husband helps a lot .


  2. I feel exactly the way you do and I am only 8 months into my PAH journey. However, I have had pulmonary fibrosis for many years and oxygen dependent for nearly 10 years. I, too, am suddenly afraid to venture too far from home in case of emergency; oxygen fainting, and I take Tyvaso every four hours (I sometimes need to take that with me if I am out too long). I am happy you ventured out and did just fine. I always worry about the “what if”. Thank you for sharing. ❤️


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