Level-Up: Part 60

Now that I don’t write about my vestibular disorder and living with chronic illness on a weekly basis, it’s easy to let achievements or difficult weeks slip away without really processing them and I miss that. If only for myself, I’m going to run through the past few weeks, but I’m adding a few tips at the end of each section which you may be able to apply to something you’re dealing with.

The Week the Weather Changed

The weather had been cold but clear for what felt like several weeks. The kind of Scandinavian weather I dream about. There was no heavy air pressure making my head feel squeezed and, while I still had the persistent disequilibrium to deal with, the weather definitely helped. Then it changed. The cloud was low and having had a good week or so where it felt lighter, the return of the oppressive air made the added dizziness even more difficult to deal with. The problem with all chronic illnesses is that once one thing gets worse, dealing with it inevitably makes you more tired. Once you’re tired your stamina in dealing with it as a whole depletes and you’re too wiped out to keep all the other symptoms on an even keel. It’s like spinning plates. I lost a lot of sleep to dizziness waking me up at night that week, so by Friday I had to give myself the day off work, put on some comfy clothes and try to recoup the lost energy. I read, I watched TV, just relaxed. I felt better for resting, no matter how frustrating it was that I had to take the day off. I’m pleased I was able to recognise that I needed the break. That’s not something I’ve always been able to do. On Saturday I spent some time negotiating down all the things I wanted to do to just one task and asked for some help with the rest. I had to sit on the library floor to keep myself from falling over, but if you can’t sit on the ground in a library, where can you?

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TIP: Listen to your body and be kind to yourself when you know you need a break. Nobody gives you any medals for powering on and ignoring how you’re feeling. If you don’t make looking after yourself your main priority you can’t do anything for anyone else and that impresses nobody. You won’t even impress yourself because you’ll still be too tired to enjoy it.

The Week I Sank

I was feeling very pleased with myself for managing and negotiating the previous week so well. I got plenty of work done on the Monday and felt like it was going to be a much better week. Then on Tuesday I felt terrible. Overnight it was like the plug had been pulled yet again on my energy levels and this time it dropped even lower. I was so frustrated that despite my best efforts my body just decided to chuck all this extra dizziness and fatigue at me for no reason. In terms of keeping my emotional reactions to these times and to the illness in general in check, I do so much better now that sometimes I forget how paralysed by my struggling mental health I used to be. During that week, disability attacked my self-esteem and confidence all over again. I felt so pinned down by it and useless that the feeling all I had to offer was illness crept in again. I was so dizzy I was struggling to stand at the oven and cook. I felt like I was letting everyone down again. It was the most lonely feeling in the world. The only things that kept me going were a few hugs and experience. Experience has taught me that my body would recover enough to get back to a workable level of energy and that my head would follow where my body took me. I had to trust my knowledge over my desire to give up. I was absolutely right.

TIP: It’s not easy, but try not to panic when you sink. As long as you don’t want to, you won’t stay there for long. Ride it out and be nice to the people who want to help. There may not be anything they can do, but having people around you who care is a blessing many others don’t have. A hug makes a massive difference, so accept them and ask for them. Don’t make others the victim of how you’re feeling and they’ll still be there when you come out the other side.

The Five-Year Anniversary

As experience had suggested, my energy gradually returned, my wobbliness and dizziness came back to a level that was normal for me and, as I suspected, my mood improved. Thankfully, this happened just in time for my fifth anniversary of dealing with my illness. I’ll be honest, I was dreading it. Five seemed like such a big number and such a huge chunk of my life that had been coloured and limited by feeling like I was falling over every day. Exactly 1825 days of feeling just… bleurgh, without a single break. I had no idea how I was going to feel when I woke up that day, whether I was going to be unbearably sad or feel empowered for having kept going. As it turned out, it was a little of both. I was sad. It had never occurred to me on the day it all started that the biggest challenges of my life to date were just around the corner, or that five years later it would still be something that dictates how I spend each day. But I was also immensely proud of myself for never giving up and doing all I can to build a new life around it. I cried a bit and, feeling okay physically, I decided to do something I couldn’t do a year ago to prove to myself that even though I’m still dealing with a lot, I’m fighting it.

I took the day off work, allowed myself a fairly leisurely couple of hours in my pyjamas, then started getting ready to go out. Red lipstick a must, obviously.

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I took a taxi into the city centre and went slowly about trying to do some shopping. It was lunch time so town was busy, but not the kind of chaos that seems to descend upon it at the weekend. After one shop I found myself facing the branch of Boots where it had all started five years ago. I wanted to go in, stand back on the spot where my world fell apart and show the illness that I was in charge now. That I was stronger now than I’d been since it literally knocked me off my feet.

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I couldn’t quite face walking in through the front door, so I slowly made my way through a few other shops to enter via the shopping centre entrance, a challenge in itself. Changing the sequence seemed to make it less like a flashback to a terrible moment. I’ll admit, my hands tingled a bit as I approached it, but I did manage to stand back in that spot by myself again, almost to the minute that the dizziness had started all those years ago. It felt pretty amazing.

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I quickly finished my shopping and headed for a bench outside the shop. The enormity of what I’d just done struck me all at once and it was touch-and-go as to whether I was about to launch into a public ugly-cry. Thankfully, I was sent a funny video and any embarrassing tears quickly turned into out-loud laughing. Incidentally, while I sat on the bench, an excellent busker was playing and singing this. The lyrics had no correlation with the moment, but it felt like a soundtrack nonetheless. I’m sorry he moved on before I could give him some money. He hadn’t realised what he was soundtracking.

From there I went into a few more shops and decided to let myself walk until I couldn’t manage any more. This isn’t my usual tactic but I was trying to allow for some spontaneity, trying just one task at a time. After a while I started feeling pretty spaced out. My body felt heavy and I was having to try even harder to focus and keep myself centred. The angle that my body sways at was becoming wider and I could feel myself bumping into things and people. It was time to have a coffee and then call a cab home. I was exhausted, but it was the good kind of exhausted. Where you feel like you’ve really achieved something special. The next day my brain felt like it was struggling to compute even simple sentences, but it had been worth it for being able to stand up to my illness the day before.

TIP: Don’t try to control your feelings on an impending scary day. They will come as they choose. Let yourself process the things you’re going through and have been through. If you discount them, you’re denying all the effort you put in to keep going. Most importantly, if you think you can’t rise above something that’s making your fingers tingle, try just once more or compromise and do it in an adjusted way. You’ll probably surprise yourself at how strong you really are.

The Sweeping Dizzies

That brings us up to last week. It’s been a while since I’ve spoken about symptoms so just as a quick recap: I have a perpetual feeling of movement. If I’m sat perfectly still, my faulty brain signals tell my body that it’s moving, so my body moves to compensate for that. Imagine living on a boat sailing choppy seas, but all the time and on dry land. When I walk, the ground beneath me feels like an airport moving walkway. This is my baseline. This is my normal day/night. On top of that I have spells of rotary vertigo. That’s the spinning feeling you get when you’re really drunk. I get this every day but often they’re just short bursts, like the feeling you get when you’re falling. Sometimes they’re much bigger dizzy spells that can make me want to hit the floor or, at the very least, sit down for a while. This is the stuff that can sometimes make everyday tasks impossible.

Last week I had a lot of these. There doesn’t always have to be a reason for them, but I suspect it’s because my ears are feeling a bit blocked. It could be the start of hayfever. I had one especially big one in a shop that was so intense I actually shouted WHOA! out loud. Nobody heard me and I got out of there as quickly as I could to sit on a wall. I had to cut short everything I wanted to do and very carefully get myself home. I was so embarrassed. Not about the dizzy spell or having to head home so quickly, but that I went out knowing I wasn’t quite up to it. I gave in to cabin fever even when I knew it was a bad idea. But all I could think was how terrible I’d feel if I felt even worse on Friday and didn’t have a birthday card for my mum on Saturday. I took a chance and got it wrong. It happens.

On Saturday I was getting increasingly annoyed that none of the tasks I was attempting seemed to be succeeding. I didn’t want to be frustrated so I called upon one of the skills I learnt in counselling: I practiced ‘reframing achievements’. I set my sights a little lower. I made a list in my head of tasks that I’d be happy to have completed. Some of them were ridiculously small, like blowdrying my hair properly, but some days tilting my head to do that is extremely uncomfortable. I promised myself that however many things I managed or didn’t, I’d be pleased with it. I got through quite a few and felt a genuine sense of achievement. Learning that skill, finding ways of feeling accomplished by doing everyday things has been so crucial in not being weighed down with feeling sorry for myself. I could keep telling myself it’s dumb that blowdrying my hair needs to be on a list, but that could only make me feel worse, and I don’t think punishing myself with self-inflicted shame is that helpful. I don’t deserve it.

TIP: When you’re struggling and have barriers holding you back from doing things you need and want to do, negotiate with yourself. You might not be able to do everything on your list, but actually, who can? Find things you can get done within the bounds of what you can manage that day and tick them off. It takes a lot of practice to truly believe you’ve accomplished something without kidding yourself, but I’m proof it can work. And trust me, I used to be the angriest person in the world at my limitations. Also, don’t be harsh on yourself for making mistakes. I’m still working on that, but everyone needs a project, right?

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