I’m 36. An adult. A grown up. Yet I won’t stray far from my village if I’m on my own!
Rewind to life before my illness, and it was very different. I’d catch buses and trains and planes alone. I’d explore cities and towns and villages alone. I’d visit people and places and parties alone. I was independent, and confident to be out exploring and experiencing life. Yet just a mere year after travelling the world… I became someone who wouldn’t go anywhere without Phil.
For the first year, my condition seemed unpredictable. I would become unwell suddenly, randomly, out of the blue. One minute I would be chatting to Phil, then the next I’d be completely overwhelmed with illness. Absolute exhaustion, weakness, breathless with every movement. The only solution, the only way to recover; was to give my lungs and body complete rest. I needed somewhere to close my eyes and let my limbs go floppy. I needed somewhere to lie down or lie back for at least an hour. So wherever I was, whatever I was doing, I would stop and immediately find a place to retreat. I’ve curled up in my wheelchair in a hospital waiting room, lounged out along the back seat of our car, laid on the floor of a busy ferry. I’ve stretched out on the grass in a park, slumped back in a chair at the doctors reception, laid on friends’ beds. And this seemingly random exhaustion would happen a lot. At points daily.
I felt safe if it happened at home (and it did for the majority), as I could stretch out undisturbed on our sofa. No one would enter the room. But out in the big bad world, it was frightening to suddenly feel so ill. It was scary to be too weak and too exhausted and too breathless to move. If anyone tried to talk to me, or pester me during this time, it would exasperate my symptoms and delay the recovery. If anyone had tried to attack me, or steal my purse during this time, I’d be unable to stop them. So I felt vulnerable. Very vulnerable. And that is a horrid feeling. Luckily out of the house, I always had an amazing bodyguard with me- my strong and fit husband. It was a wonderful reassurance. Even if I needed to close my eyes and lie down, he’d be next to me. And so he made me feel secure during those scary episodes.
For the first year it felt like those bouts of extreme illness were happening randomly, unpredictably. But in retrospect, my body was giving me signs, but at that stage in my journey, I wasn’t self-aware enough to notice them. I didn’t have enough experience of my new ill body to recognise the clues. So when I felt the first wave of tiredness, or the first sign of weakness in my hands, or the first breath that is a struggle… I ignored it. I would continue talking or playing, (unbeknown to me then) tiring my body more and more. Until it could not continue without a rest.. now.. immediately. I kept pushing my body to it’s limits- and then becoming helpless as it tried desperately to recover. Although the episodes thankfully decreased from daily to weekly as I became more knowledgeable of my body, they returned with increased frequency when I deteriorated. In the last year there have been many occasions where I have been caught out, my body requiring an immediate rest before I’d have expected it. Illness, stress, weather, tiredness- all affect how much my lungs can cope with. So the fear of being unexpectedly ill, makes me apprehensive about being alone out of the home. Furthermore as I’m reliant upon oxygen and a mobility scooter, I also fear being stranded, or with an empty oxygen canister, when on my own. Phil has rescued me a number of times when my scooter battery has unexpectedly died. And regularly fetches extra oxygen when I’ve run out. What would I do in those situations if alone?
So due to those fears, in the last four years I have never been alone and far from my home. I’m happy to scoot around our village solo. And I’m happy to visit places in the local towns solo, if Phil is somewhere in the vicinity with his mobile. But I never go anywhere on my own, without help close to hand. Luckily I’m not well enough to drive far, so always have someone with me anyway! 😉
For the last few years, 99% of the time, Phil has been that person by my side. Although family and friends have volunteered to take me places without him, I am often nervous to accept their offers. What if we get split up, just as exhaustion overwhelms me? What if they want to carry on shopping, when I need a rest? What if my scooter breaks and they can’t get me to the car? Imagine the embarrassment if they see me so ill! Imagine the guilt if I ask to be taken home before they’re ready to go! I’ve always been reluctant to go out without Phil.
But last year, I realised that by declining non-hubby invites… I was missing out on experiences and memory making. Not to mention shopping trips! (Phil hates shopping). So I put on my big brave face. Initially it was excursions for a couple of hours local to our area- a pub meal, a shopping trip. Then full day trips further afield- The Chelsea Flower Show, Afternoon tea in London. Later overnight girlie trips, but with him still within an hours drive. Over the past year, I’ve gradually got braver, and learnt to trust friends and family to be by my side. The number of people who I now feel comfortable being with outside has increased from one, to a handful.
A fortnight ago, I took the next big step. An overnight trip where Phil was completely unable to rescue me… as he wasn’t even in the country! I had to put my complete faith in my wonderful school friends for 24 hours. I love and trust these girls; we’ve been friends since we were five. But I was nervous to be going away with them, especially as it was our first holiday together since my illness. I shouldn’t have worried, my fabulous friends were super. I was picked up and driven home (an hours detour for the driver!). They carried my hoards of luggage and oxygen! In my own room, I could rest whenever I needed to. At breakfast they helped carry food and oxygen. And they regularly checked up on me. We had a fantastic weekend together. Catching up, eating too much, celebrating Louise’s growing bump. But best of all, I felt safe with them. I knew they’d look after me if I wasn’t well, or needed help.
So one of my personal battles this past year has been to let others be by my side. It’s hard to move away from the security of always being with the tried-and-tested Phil. But by facing my fear, I’ve had fabulous experiences that I’d have missed out on otherwise. The next challenge will be to do more activities on my own, without someone always by my side.