Level-Up: Part 10

Every Sunday I record my health achievements and discoveries for the week here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.

After fighting a touch too hard to hit my constantly shifting targets last week, I decided to allow myself an easier week with no specific goals. As it turned out, I didn’t have much choice. I picked up a cold that messed with my balance even more than usual, and this weekend I’ve just felt wiped out, had a thumping headache and have been nauseous the entire time.

Life never stops, though, and I continued to work when able and popped out when needed. On Thursday I really needed to go out as I had some things to do. I wasn’t feeling great and the weather was low and heavy. The air pressure was affecting me even indoors, so I knew once I started walking I’d feel it even more.

For some unknown reason I decided to set myself a challenge before I went out. I decided that no matter how bad I felt, I wouldn’t ask anyone for help. I wouldn’t text or call anybody to say that I was struggling. I’d avoid asking anyone on Twitter for moral support. I’d just try looking after myself and getting through it alone, because there are bound to be situations in the future where I’ll have nobody and will have to rely on just myself. What if my phone died while I was out, for example? I wanted to know how I’d cope.

While I was out I felt predictably terrible. I stopped more than usual and scanned Twitter and Facebook for distractions, but never actually asked for help or said how bad I was feeling. The walk was longer than I had expected because of this and I was shattered by the time I made it home. At which point, I crumbled. To feel completely alone, albeit self-enforced, was truly frightening.

I’ve been reflecting on this for a few days and it’s taken me back to some issues I covered during my disability counselling sessions in the summer. What I experience on a daily basis is a battle of independence vs assistance. For me, losing my independence impacted upon me hugely and my instinct, however sensible or not, is to claw back as much as possible as quickly as possible. Unfortunately, my faulty brain isn’t interested in healing itself as quickly as I’d like it to and refuses to play ball when I push it too hard. The counselling helped a lot in learning to live with my condition, not merely wait to get better or wish it away. But the desire to regain as much independence as my body can manage is unlikely to ever go away. This is just one of the reasons I like to challenge myself so regularly.

Inevitably, I need help and support I wish I didn’t have to ask for. Sometimes that’s physical help like an arm to hold on to when I’m walking, or a lift somewhere so I don’t have to pay a fortune for a taxi. Sometimes it’s emotional support because I’m frustrated or feeling a little browbeaten because I’m so tired. Most of the time it’s a combination of both: a hand to hold to keep me physically steady and a presence that keeps the stress of feeling so wobbly in check.

Asking for help isn’t just difficult because it’s an admission of the lack of independence, it’s also about not wanting to feel a burden. I have had to learn over the past few months that the more you give to people and the more you share of your experiences, the more likely it is those same people will be generous with their time and compassion in return. It’s not an easy shift, especially when you’re an instinctively private person who already feels the weight of having overly burdened people with the stress or limitations of the illness.

Chronic illness of any kind comes with natural guilt. To have to deal with  your condition yourself is hard enough, to ask your friends and family to carry it with you is daunting. We ask a lot of our closest people to lift us up so often and the fear that every request for help might be just a step too far for them always niggles at the back of your mind. I fear compassion fatigue. I feel a constant need to apologise when asking for help or reviewing my old behaviour and methods of coping (or not coping as the case was at the time). Yet, without asking for help, we really are alone. And so, the see-saw keeps tipping back and forth.

I’ve got a new strategy for when I’m out alone and in need of support but don’t want to ask for it. Only one person knows what that strategy is because they came up with it. And I don’t really want to mention it at this stage as it only properly works if people don’t know about it. I may come back to it in a later post.

It’s funny how your stresses shift. I used to be frustrated because I was left out of group activities I couldn’t physically manage or travel to. I often felt so restricted and victimised by my disability that I unfairly lashed out at people who didn’t have those restrictions. Even at the time I knew these attitudes were unhealthy, but until I sought professional help in arranging my thoughts, I had no idea how to grab hold. As discussed in part six, I now genuinely take joy in seeing friends do things that make them happy. Now my worries are more about my personal fight for a slow and steady move toward independence, while minimising the damage that journey does to others. Because this disability may have defined huge chunks of my past, but I simply cannot afford to let it be the only thing that rules my future.



2 Comments on “Level-Up: Part 10

  1. Never apologise, those who love you will stay by you regardless of anything. You will always have my support and the support of so many other people who I know adore you xxx

    • Thank you, Chloe. There’s just always that niggle that if you ask for too much, they’ll run out of steam themselves. But I know most people aren’t like that 🙂 x

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