The things I never say

I very rarely talk about my illness or disability publicly. There’ll just be the odd tweet repeating an insensitive comment from a taxi driver or about how tired I am. I also posted this back in November. Beyond that I don’t really explain what it’s like to be living with a chronic condition. I have a million different analogies for how vestibular hypersensitivity feels physically – mainly involving rocking boats and airport travellators – but nothing that conveys how this type of illness completely reshapes every second of your life.

Maybe it’s a privacy thing. Disability can feel very personal. Maybe I worry that people will think I’m looking for pity. But maybe it’s because every day is about walking the fine line between needing help but also wanting to appear brave. Too much focus on the limitations of my day can overshadow the outward appearance of normality. The normal moments feel lovely.

Lately I’ve been dipping into the Spoonie community: an online, international, social media led network of people with chronic and often invisible medical conditions. It’s nice. There’s a lot of power to “I know exactly how you feel.”  It’s good to know it’s not just happening to you. It’s also a strong reminder that things could be worse. At least my problem has the potential for recovery. Others aren’t so lucky. Chronic illness can be almost unbearably lonely; not only because few people can empathise with what you’re feeling physically, but also because the roadblocks it puts in your way can take you away from some of the activities you love. In the process, you sometimes lose people too.

During the first 18 months or so of my illness, it was all about diagnosis. What is happening to me? Why do I feel like my body never stops moving? When are they going to fix me? Do I really need to have a brain scan? It was horribly traumatic, but looking back it’s something of a fog. Actually living with the extremely slow recovery and trying to rebuild my life is a rollercoaster. My rehab appointments are several months apart now. It’s all down to me and I’m impatient.

Nobody ever tells you that every day you’re going to have to barter with your energy levels. You have to ration it. You have to plan how you’re going to spend it. For me, it can change from day-to-day just depending on how well I’ve slept or how wobbly the room temperature is making me feel. Go too far beyond my reserves and I’m left exhausted. Do too little and I’m stuck not getting better, not moving forward. Without recovery time after an out-of-the-ordinary event or even something I planned for but turned out to be tougher than I expected, it’s a battle to get things back on track. Going to the theatre this past Friday night was great. I chose a Friday so that I’d have the weekend to rest. I’ve felt like a snowglobe settling after a shake for two days.

There are two camps when it comes to the choices you have to make – the ones you actually have some control over and the ones you pretend you control but your body has already decided for you. The decisions you can influence are slightly easier to make in that you know you’re either making them for your own good and have planned for them. When Andrew and I went to Birmingham for the weekend, we chose that. We scheduled the recovery time. He let me decide when I’d been walking long enough, and regularly asked the question when he knew I was pushing too hard. When I turned down Sunday lunch with old friends because I’d had a particularly tiring week, I knew I needed to do it to make the following week feel okay.

Turning things down is hard. When I politely refuse a dinner invitation or a night out, it’s not because I don’t want to go. It’s just that I’m getting better at recognising when my energy stores have or will run dry. Simple, everyday things like going shopping or popping to the pub for lunch are really challenging. Sometimes I have to say no and people don’t always understand. They can believe you’re being deliberately anti-social. It hurts to decline an invitation more than they realise.

The choices you pretend you’re making are more frustrating. At least, they are for me. I miss travelling more than I could ever explain. I used to fly back and forth over the Atlantic numerous times a year. Most of the time the long haul travelling part was done alone. I would travel across the UK to reach the cheapest flight without a second thought. Now just walking a few streets by myself makes me really proud.

That loss of independence breaks my heart. I miss spontaneity. Not being able to hop on the train to see Andrew kills me. (He lives a few hours north). Not being able to go to a special event because it’s too far away leaves a little knot in the pit of my stomach until the event and the Twitter post-mortem full of ‘you had to be there to get the joke’ comments are over. I could pretend I’ve chosen not to go, but deep down I know it’s been chosen for me.

If you’re in this predicament I can suggest a few coping mechanisms:

  • Keep busy:  If you can manage it, occupy your mind with something else. The less time you spend thinking about where you’re not, the easier it is.
  • Put your phone down: If the event you’re missing will be discussed on Twitter or Facebook, close them while it’s going on. I am completely useless at this. I’m always torn between wanting to be involved and not upsetting myself. My curiosity always wins. If you have more willpower than I do, it really will help.
  • Ride it out: Try to remember that things pass. People forget about parties and big events within a few days. It won’t be everyone’s biggest deal forever.
  • Cry if you need to: It’s okay to be sad and angry. I have to remind myself of this regularly, but that frustration has to go somewhere. That in itself can be filled with its own problems; namely that if I’m sad I’m not at an event, I worry that crying to the people actually going will make them feel guilty and spoil their fun. You just have to have faith that they will understand. It’s hard to manage the feeling of being left out of the crowd, but also wanting the people you love to be happy.

I am terribly lucky to have Andrew. He is the most supportive partner I could ask for, and he has been supportive since my illness started over three years ago. We weren’t even a couple then. We were the best of friends. He looked after me from day one. Through sheer coincidence he has since developed Ménière’s Disease, which is far less fortunate and pleasing. But at least it means we understand what we mean when we say we’re “bouncy wobbly” rather than “spinny dizzy” on a given day. We get what the other means when we feel both hungry and nauseous. I’d take it away from him in a heartbeat, but we value not having to explain things to each other.

It’s not easy to talk about these things. Often you can feel you’re bothering people or that repeating yourself over and over isn’t worth the stress. But the thing about chronic illness is that you need daily support. Sharing lightens the load and if this helped you in any way, it was worth the nervousness I felt in writing it. I will do this again when the urge grabs me. Possibly talking more about my physical symptoms. Maybe in fewer words.

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