Level-Up: Part 61

I hadn’t realised it had been five months since I last wrote here. Five months! It wasn’t intentional. I never made a conscious decision to stop updating Level-Up and I certainly haven’t made some miraculous recovery where my vestibular disorder has simply dispersed. It still dictates how each day plays out, though I really try my hardest not to let it have the final say on absolutely everything.

Part of it was being tired of having a microscope on myself. Chronic illness makes you have to think about yourself every day in a way you don’t when it’s not there. I missed that carelessness and writing about it started to pull me out of it. I suppose in the same way it does when you’re enjoying a film and the phone keeps ringing or someone knocks at your door to tell you about a charity they want you to donate to, or the dog barks at you for a piece of your sandwich. Those things happen with chronic illness anyway. It irritatingly pokes at everything you do to keep reminding you that you feel wholly gross the large majority of the time. I hoped that paying those jabs less attention would make them easier. At least, that was my theory for a little while.

Having said all that, that first year of writing weekly without fail no matter how I was feeling wasn’t exactly some joyous walk in the park. I rarely went a week without crying as the words poured out. It was a gruelling task, but it served an important and rewarding purpose.

Coming back to this break, the less I talked about how I was feeling, I noticed something else happening. The quieter this ‘journey’ became, the less I felt part of the chronic illness community. The journey was still going on but if I didn’t want to talk about it, neither did the people who were dealing with the same things. We never force each other to talk. This is not even a tiny criticism of the Spoonie community. It was my doing. I was the one pulling back slightly. I missed it though. I missed feeling like even on the worst days there are people who knew exactly how I felt, either physically or emotionally.

I have actually written a couple of things on my main lifestyle and entertainment site, seibiant.com, while I was away from this space. One was about how to manage playing video games when you’ve got a vestibular disorder. I don’t think I even turned my XBox on to play anything for that first year (now up to five and a half years). Over time I developed some tricks and tips so that I didn’t have to give up one of the greatest loves of my life. What’s nice is that I know people who don’t have a vestibular disorder but just generally find that video games give them motion sickness have found it helpful. If you want to read that, it’s linked here.

The second piece I wrote was longer, more serious and significantly more important. It is without doubt the most difficult piece I’ve ever written. I wanted to review Matt Haig’s book, Reasons to Stay Alive. I’ve never read anything on depression that has touched me so much while remaining so simple and unpretentious. It should be required reading for all humans. But I couldn’t really explain what made that books so wonderful without telling my own story, so I did. I talked at great length about how chronic physical illness lead me to destructive depression. I had to talk about how disgraceful my behaviour became during the lowest time. I had to apologise for how selfish depression made me and how much I hurt people who deserved the exact opposite of how depression made me treat them. I also got to talk about what it was like coming out the other side and learning to like myself again. That was much nicer.

If you only read one thing that I’ve written, read that post. I’ll link it here. It’s the most important thing I’ve written to date. There’s an audio version available on that link, too.

As well as being an incredible catharsis – saying out loud that I’d had depression as the result of chronic physical illness but was fighting back – something bigger happened. Something unexpected. Matt Haig shared my post to his thousands of followers and it got an incredible response. It was nerve-wracking, but it was completely positive. A short while later that post was shared on the Vestibular Disorder Association’s Facebook page. Targeting it down to just people who were dealing with the exact same daily trials as me made the response even more spectacular. I said things that people had wanted to say but didn’t have the words. That was a powerful and an overwhelming experience.

All of a sudden it felt like the whole world wanted to talk to me about it, ask my advice, congratulate me on being brave and beating the odds to come out the other side of the tunnel, despite no physical change. I screenshotted every single comment on that Facebook post and replied to almost all of them. Part of me loved it. Part of me was giddy with the endorphins that come with helping other people improve their lives and feel less alone. Another part was entirely freaked out by the idea that I was some kind of advocate for living well with chronic illness. What a responsibility! I cried a lot that day because I didn’t know how to handle the joy. Just too many good feelings to absorb at once and a fear that you’re responsible for maintaining that if people are looking to you for reassurance. Once I’d gotten over the shock I offered it to a much bigger chronic illness organisation to see if they wanted to share it, but they declined. Maybe that was a blessing at the time. Being in the spotlight is tougher than it sounds. I didn’t ask anyone else to share it after that but if anyone wants to, please go ahead and Tweet me so I can thank you.

I got quieter. I stopped saying how I was feeling every day, even when I felt truly terrible. I wasn’t pretending I felt awesome, just didn’t mention I felt rubbish. The thing was that the less I said, the more it felt like I was burdening people when I did talk. It made me nervous to be honest again. I felt like I was being a pest. An inconvenience. Even now I apologise for complaining and moaning online when I talk about how dreadful I’m feeling. Even though I wouldn’t dream of asking anyone else to apologise. In fact, I encourage the people who I know hold things in too much to let more out! “Nobody needs to hear this,” I said. They do though. They need to hear it and I need to say it. Not just for me to release that pressure valve but for other people to know it’s okay to do it as well. I want to lead by example. It also makes it easier for people who aren’t in the same boat to understand exactly what you’re coping with. They don’t know if you don’t tell them. The more you convince yourself dealing with things quietly and alone is the answer, the more you end up doing that. Chronic illness is lonely and isolating enough as it is. There’s no reason to exacerbate that.

One thing I have become incredibly good at though is celebrating my achievements. I very freely now say publicly that I’m proud of myself. I am dealing with a horrible illness and yet I get up every day and try to kick it back. Few people fully appreciate what a challenge seemingly small tasks are. Even buying this ice cream with just one free hand was a frustrating ordeal. Nobody gets to see that. (It was worth it, by the way.)

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 I’ve also gotten really good at taking compliments. That comes from liking myself more. If you know me personally or previously followed this series you’ll know how much I’ve wrestled with that notion of pride. In my head I was forever comparing what I achieved with the person I was before I became ill, and so everything seemed small and stupid. I learnt how to compare anything I do now with the person who couldn’t walk across the street to buy coffee. Then it feels pretty unreal and wonderful. I won’t pretend I don’t ever compare my life to the people who can do more than me and don’t feel envious of those things. Who doesn’t have people they’re envious of? I’m human. But I bring myself back quickly. I feel sorry for myself briefly, then I kick my own arse and find something I can do.

I suppose this very long post is me saying, “Hi! Can I come back now?” I want to. I’ve been trying to put all this into a video for the past week but every time I’ve sat down to do it I’ve either not known what to say or I want to cry. I’m going to spare you that on this occasion, but I do definitely want to make some more videos. Please give me your ideas.

Let’s look at what I’ve been up to…

It’s been a hard summer. Heat definitely makes me feel much worse, but what’s been so bad about this summer is that it’s been humid and heavy more than scorching hot. I’d take a bright, sunny, boiling hot day over a cooler but more humid one any day. It’s made me feel like my head’s been stuck in a sweaty vice-like headlock all summer. I’ve felt so dizzy, so sick, so sore, so restricted, so tired, so worn down by it. The past few weeks have been a massive strain and I haven’t done myself any favours by keeping so quiet about it. Again, I just haven’t wanted people to get sick of me complaining about it. Yes, this is ridiculous.

I had loads of little goals and plans this summer. Just things I wanted to do for myself. Some of them I haven’t had the energy to get to yet, but they’re still on the list and will probably be easier when the weather becomes more autumnal anyway. I’ve managed some stuff though. I went to Free Comic Book Day and managed to spend the entire day comic shopping around the city by myself and with the help of several taxis. Check out those pizza socks!

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I’ve done some more city centre shopping. I went to a sing-along showing of The Sound of Music.

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I spent some time at the museum and had a look around, which included a train journey where I was forced to stand because nobody offered me a seat. I adore museums. Standing on a moving train when I can’t stay upright on solid ground, not so much.

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I’ve carried on collecting coffee stamps. I’m up to 130 walks now.

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I’ve tried a bit more solo supermarket shopping, God, I love supermarkets. I’ve used a few local trains by myself and most importantly, I did a few cinema trips on my own.

On my birthday in June I went with my family to see Jurassic World in the cinema. I’m pretty sure one of the previous posts talked about my first trip to the cinema in a really long time to see Guardians of the Galaxy. I explained then how poetic I feel about the cinema and how happy it makes me. Right down to the overly vibrant carpets and the popcorn smell that never leaves no matter where you walk. It’s one of my happiest places. I’ve also just realised that both films starred Chris Pratt. The impetus to go back to the cinema may be fuelled by the same beautiful person. But to be serious for a moment, difficult as it was to stay in my seat during the latter part of Jurassic World, I was reminded of what I’ve been missing. I decided I was going to go back again…by myself.

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I did it! I’m so proud. More than anyone could possibly understand because only I was in my body for every moment I needed to fall out of my chair but worked hard to stop that happening. I went and saw Ant-Man and felt deliriously happy that I’d seen it in the cinema on opening weekend. A few weeks later I went to see Fantastic Four, which was a rougher ride, both as a film and physically. Still, I managed it and was proud. I’m not prepared to miss out on things I love anymore. I’d rather brace myself for falling out of my chair than miss out.

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This has been a hard summer. I’ve felt worse these past few weeks than I have in ages. I’ll try to stop being embarrassed about saying that. People care. They don’t mind that I want to talk about it. If I talk about it, other people will too and then we’ll all just be looking out for each other. A few years ago I wouldn’t have handled these few weeks too well. I’d have fallen apart and been a gibbering, sobbing wreck the entire time. That hasn’t happened. My brain may still be annoyingly broken, but my mind isn’t. It feels great to say that.

I’ll keep trying to push the boundaries of what this illness suggests I should do. It’s not the boss of me. Whether that’s still eating my Sriracha daubed beef stri-fry when I’m feeling especially queasy, or getting on a train on a better day, or sitting through an action film that sends my head spinning. Even if it doesn’t go as well as I hoped, it’s the attempt that matters.

So… Hi! I think this means I’m back.

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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?

Level-Up: Part 59

It’s been a few weeks since I’ve written a health post, and honestly, I feel it. I don’t mean that I’ve deteriorated. The hard work I’ve ploughed into improving my self-esteem and confidence, and handling the bad days has really been paying off lately. I can feel them getting more robust again. Slowly but steadily. I still have bad physical and emotional days, but I know they don’t last. I never stay down and there’s incredible comfort in both knowing and truly believing that however bad a day gets, tomorrow has the potential to be great.

But I have missed documenting these past few weeks because I’ve done some things I’m really proud of. They can slip away without me paying them enough attention if I don’t write them down. Part of it has been that I’ve been busy getting on with other things, but the other is that I worry about being repetitive. I don’t want people to get bored of hearing the same things, for better or worse, over and over again. On the other hand I also know how many people have told me that the things I write help them, so it’s probably less tedious to read than I imagine it is. I actually wrote a post a few days ago about something I saw on Instagram, but I was so tired that when I read it back it seemed like utter gibberish. I may come back to it on another day. It was an important point.

Christmas and New Year 

I was lucky in that I didn’t have too many commitments over Christmas and New Year. It was fairly quiet and, even though I worked a bit through the break, I could do it in a more casual way and relax a bit too. I spent Christmas Day at my brother and sister-in-law’s house, which was lovely. I was determined to enjoy the day, so even though I had a few big dizzy spells, I didn’t allow them to ruin the fun. I even managed to complete the short but slow walk home at the end of the night. It wasn’t easy when it had been such a long day, but seeing the roads so quiet and deserted was a pretty sight. Boxing Day was tough. I could hardly stand up nor move around the house, but it got easier with a couple of days staying sat in a comfy spot. I felt particularly exhausted over the whole of Christmas, but I don’t think that’s just a chronic illness thing. Everyone gets tired at the end of the year because it’s the only time most people get off the treadmill for a while. It just gets compounded when your baseline is a little lower.

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Clown College

I finished my university comedy class and got a first class mark. I cried a few times on the day my essay results arrived. It was great to do so well, but it meant so much more than writing a good essay. It was tough sitting through the classes and there were a few times where I either felt too unwell to go or wondered if I should leave half way through because I was basically falling off my chair, but I never left nor missed a single session. I also forced myself to take an active part in the class. It would have been so easy not to say anything, just sitting back and listening to the lectures. Some people did that. But this experience was more important than learning about the history of comedy. It was about being able to complete something by myself and not feel like I had to give up on something I really wanted to do just because I’m unwell. If anything, the fact that my tutor wrote on my feedback sheet that I was a great class contributor might have made me even more proud than the essay marks. I’ll be taking some more courses in the spring.

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 Eye Tests and Supermarkets 

It sounds silly to say that going for an eye test was a big challenge, but it’s actually one of the more difficult things I can do. I find the pre-tests where you have to watch flashing lights especially hard. When you have a clinical balance test, one of the things you can be asked to do is follow flashing lights to see how dizzy and unstable you become when your eyes are darting around. (Spoiler: I didn’t do very well in that balance test.) As I feel like I’m moving all the time, having to sit still and focus in on anything is tricky, even more so in the dark. Things move in my field of vision, but there are no glasses that can fix that. As it turned out I did need new glasses, and they’ve helped a lot since having them. The eye test left me with a massive headache from having to keep my body, head and eyes still for so long, but I felt pretty proud of myself for going along and doing it without any help.

The opticians I used is set inside a large ASDA store. I figured it would be easy to access and I knew they had some extra testing available. Supermarkets can be difficult to manage and very disorientating. The combination of bright lighting, background music, lots of people moving around and an insane amount of colour can overload my senses and make me extra dizzy. There are so many points of reference and my eyes can find it impossible to take it all in, so my balance systems short-circuit. It’s one of the things that frustrates me the most because I love shopping for food. It’s been a lifesaver to have groceries delivered, but I would love to do it myself. I could have just left straight after the test and ordering the glasses, but I let myself stay, look around for a few minutes and buy a couple of things. I did the same when I went back a few days later to collect them, and even though I nearly toppled forward and fell over standing in the queue to leave, it felt pretty exciting to be there, even just for a short time. I don’t know if I could manage a big shop by myself and I definitely wouldn’t attempt it on my own at its busiest times of day, but if it was a good day and I only needed a few things I could give it another try.

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Libraries and Coffee Cards

I’ve been knocked off my feet with some kind of cold virus thing since last Friday. What’s worse, the congestion was making me so dizzy I hardly slept for four nights. Every time I felt myself dropping off it was like being shaken awake by my own brain and body again. Thankfully it’s easing off, but yesterday I hadn’t been out of the house for a few days and was starting to feel a bit penned in. I’d wanted to head to the local library to renew my membership and borrow some comics, so I took a taxi there. As it turned out, they’d closed for the day and I couldn’t do it. I was then faced with the dilemma of heading home or taking a taxi to a different one. Being my first time out in a few days and still not feeling well I was pretty shaky, so I headed home. But I decided to do a really slow walk him instead of calling another cab, in the name of getting some fresh air. It took a lot of stopping on benches along the way and some very slow shuffling in places, but I did it.

Best of all, I stopped in the coffee shop on the way home to cash in my 10th loyalty card and cheer myself up. I can’t begin to explain what a big achievement it felt to hand it over. 10 cards means 100 walks. Wow! It took a year and about three months to do it, but it’s incredibly surreal to know that I’ve been able to push myself to do it 100 times. Especially when there are still so many days that I wake up feeling like I can’t get out of bed at all, but I always make sure I do.

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I went back, got my library card and borrowed some comics today, but I used two taxis this time. I don’t want to push my luck.

Level-Up: Part 58

This isn’t a very festive post, but I wanted to share it before I forgot the details for anyone else applying for PIP who wanted to hear about the renewal experience. It’s not terribly sad, so don’t worry. It’s just not full of jingle bells. Here’s something festive to make up for it.

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Last Wednesday I was called to my second Personal Independence Payment physical assessment. I hadn’t expected to have to go so soon after submitting the renewal paperwork. I’d actually been told I might not have to go at all, but I didn’t expect that to be the case. Still, to be called a few days after my paperwork deadline was a slight shock. Last time, several weeks after the application, I received a letter with some login details that allowed me to go online and choose a date/time that suited me. It seems they don’t do this anymore. I can only think that letting people take their time over making their own appointments must have left some empty slots, and as the whole process has come in for significant criticism over falling behind on applications, I’m guessing now they present you with whichever spaces they want to fill. It’s less convenient, but anything that cuts the waiting time has got to be better in the long run. I would have preferred to have more time to prepare myself, but at least I could get it over with before Christmas.

I was incredibly nervous and feeling pretty exhausted last week. There was a lot going on and I felt kind of beaten down by it, physically and emotionally. And I wasn’t just nervous about being interrogated, I was also worried about how I was going to feel afterwards. The last time I majorly crashed after leaving the appointment. At the time I was only a few months out of my first round of counselling and trying everything in my power to stay positive. These assessments essentially ask you not to look on the bright side and the first one really messed with my head. I felt like it was asking me to ditch everything I was trying to change about my outlook.

In some ways, not feeling your best on assessment day is good. The purpose of the exercise is to give the assessor an indication of how your illness or disability manifests itself from one day to the next, including the impact external factors can have on you. But still, the questioning is intense. You want to go in there feeling like you have the stamina to keep up and get all your points across. I certainly wasn’t feeling very robust. Beforehand I tried to avoid the whole ‘I wish I didn’t have to do this’ thing. It would only upset me and I knew that it was just something I had to do, however little I wanted to.

I took a taxi to the clinic and found a comfortable spot in the waiting room. It was insanely warm in there, which didn’t help, but thankfully the room I was in for the assessment was much cooler. I had asked on the application form for an adjustable chair so that I could feel more comfortable for the hour or so I’d be in there. That hadn’t been provided. I’m always very confident in asking for the things I need to be provided, but for some strange reason this time I felt too nervous to ask. I just used the chair provided, holding on to the arms and the desk in front of me.

The man who interviewed me was very friendly and kind. I knew from last time that it’s not in their interest to be interrogatory, but you still worry that it’ll happen once you’re in there. The questioning was a little more haphazard this time. He jumped around to different topics and often got stuck on a particular line of questioning. He spent a lot of time finding out how I use my hands to steady myself when I’m having a pee or what I do when I’m dizzy getting out of the bath, for example, but breezed quickly through other stuff that I wanted to spend more time explaining. Maybe that was deliberate, maybe not. But the last time my assessor was being supervised by her manager, so maybe she was a tad more ‘by the book’.

I can’t remember if I’ve said this before or not, but it’s a lot like going through passport control. You know you’re genuine and have nothing to hide, but when everything you say is written down and the questions keep coming, you wonder if you’re saying the right or the wrong things. You wonder how they’re interpreting what you’re saying. You’re not sure if it’s okay to make a joke to release the tension or if they’ll take it the wrong way. You hope whatever you’re saying is enough. The physical tests were more rigorous this time too. Last time I’d only had to do a handful of mobility exercises. This time the assessment involved a short eye test, both with a board on the wall and reading aloud, and more mobility tests than a year ago. There were lots of ‘touch your toes’  and ‘stand on one leg’ things. I couldn’t do the latter without reaching for the desk, and the toe touching wasn’t something I could keep up for more than a couple of seconds before getting too dizzy.

Once it was all over I was tired and a bit spaced out, but I didn’t have that crashy, sobbing feeling that I had from the first assessment. That was the biggest relief. It showed me how far I’d come in terms of accepting what’s happened to me. It’s still not easy and I still have to talk myself out of feeling sorry for myself, but to have spent an hour talking about my worst days and not need to collapse in a crying heap afterwards was one of my proudest moments. One of my biggest challenges has been allowing myself to be sad for as long as I need to without feeling like I’d stay there and not come back up again. I found a quiet corner and sat with a drink for a while to breathe and calm my head before heading home in another taxi.

I managed to stave off any collapse for a few more days, but by Sunday the week had really taken its toll. I had no energy to do anything or to even engage my brain. I had so much I wanted to do and I felt disappointed that I’d become that wiped out, but I also knew that my brain felt like bubblegum and it needed a break. I made a list of all the reasons I had to be tired and cut myself some slack. I spent the large majority of the day on the sofa with my hood up, watching lord knows how many YouTube videos. I wept a bit, I zoned out, and I felt better for letting myself have that day of nothingness. I wasn’t even sad, I had just reached a point where I’d absorbed enough. And even though it wasn’t the most fun day, I’m genuinely pleased that I realised I needed it and didn’t allow myself to be too angry about it. Along with being able to make it through the assessment without crashing, it was the second reason I had to feel proud of myself that week.

Apparently I’ll hear from the DWP some time before mid-February on whether they’re continuing, raising, reducing or completely removing my Personal Independence Payment. I know my stomach will flip when the letter arrives, because you can never be sure whether you’ve done enough to convince them of what your disabled life is like. But whatever happens, I’ll roll with it and take them on further if needed.

If anyone would like to speak with me privately about their own PIP application, especially if your application relates to a vestibular disorder, please feel free to get in touch via the email in the Contact section or via Twitter. I’m happy to share my experiences to assist others, because I know how overwhelming the whole process can be.

I wish you all a very merry Christmas and happy new year. Thank you for your support this year and beyond. I appreciate you reading these posts more than it’s possible to explain. And if you’re about to tackle Christmas with your own chronic illness, I wish you all the best. Do as much as you can manage, then head home with a big tin of Quality Street.

Level-Up: Part 57

I’m not doing very well with my scheduling at the moment. I was going to write this post tomorrow, but as I’m stuck on the sofa with a stomach bug and feeling a bit sorry for myself I thought I’d write this while I have the quiet time.

This week I finished my university comedy course, or Clown College as I’ve been calling it. Technically it’s not over for another 10 days when I submit my second essay, but the final class took place this past week. We were all a little bit sad that it was over so quickly. It seemed that as soon as we got into the swing of things it was done. But I’m so glad I signed up for it. It’s re-sparked my interest in learning and proven to me that I don’t have to be completely held back by my illness.

Much like last weekend helped me to claw back the kind and generous piece of my personality that had been distorted by the impact my physical illness had on me emotionally, this course has done more than just provide me with knowledge. It’s reminded me that I have a purpose and something to offer beyond just a person with an illness. When you’re living with something 24/7, you never get a break from it. Sometimes it’s all you get to see, often because you’re too tired for much else, and it can convince you that everyone else sees you in the same way that you see yourself. I’ve mentioned many times how chronic and invisible illness can smash your self-esteem and make you feel a little worthless. For all you can train yourself to believe you are more than just a broken body, you need the evidence that you’re interesting and that people see more in you than just the medical reports.

In this class, the tutor knew I had health issues because the university disability support office had informed her at my request. We discussed it in private, but she never made a big deal of it or mentioned it in front of the class. An adjustable chair was waiting for me every week, I always had my walking stick with me and the other students regularly stood up to help me with heavy doors etc. So they knew too that I had a few problems to deal with, but again, they never made it an issue. I realised early on that being one of the older and in some ways more experienced people in the group, I had a lot to offer. It made me push myself to answer questions and lead discussions. It felt like a long time since people were listening to the real me and not an unwell person. If you’re in my position, I absolutely encourage you to take a class in something you love. It’s nice to not feel like people are looking straight through you.

Attending classes certainly wasn’t easy. As they didn’t start until 7pm, I was often ready to put my pyjamas on before I’d even left the house. Several were quite difficult to sit through and keep myself from losing concentration during. I had to fight hard to stave off brain fog so I didn’t lose any information. It happened a few times, but hopefully enough stuck for me to do as well on my second essay as I did on the first. I remember while were watching part of a documentary and I was having an especially intense dizzy spell. I kept shifting in my chair so I didn’t fall out of it. I debated with myself whether I should just leave and stop burdening everyone else with my fidgeting. But I stuck it out. Thankfully, after the video we were put in groups to answer questions on it. The friendly chatter managed to distract me from how awful I was feeling. I was definitely glad to put my coat on at the end of that one though. One thing I’m certain of, it was definitely worth it.

Over the next week I need to properly research and write my second essay. Being a writer, that doesn’t phase me too much. But fitting it in with everything else I have to do feels a little daunting. If I have an extra-tiring week I wonder how much stamina I’ll have left. I might need to be precious about how I use my energy this week.

I knew I needed a few books from the university libraries to beef up my bibliography, so yesterday I plotted out a route that let me walk from one to the other. I made sure I took a route that had plenty of places to stop and sit along the way. The two buildings aren’t really that far apart, but I still have to plan out where I’m going. I went on the library search web pages at home and printed out everything I needed so that I didn’t have to stand at the search bars when I got there, then caught a taxi to the first library.

Moving around the building was quite tricky and, with hindsight, I should have asked for help so that I wasn’t aimlessly traipsing around different floors trying to find the right book numbers. The tall, narrow aisles were quite disorientating and in places made me feel extra dizzy. I tried to counter that by looking for the books as quickly as possible while focusing my eyes on just the numbers. The building was quite warm, which isn’t such a bad thing if you’re sat there working of an afternoon, but it definitely didn’t help me while navigating the place. The upside though was that it was obviously especially quiet and peaceful, and had plenty of places to sit down.

Once I’d found what I needed, I slowly moved off down the street. I was tempted to go straight to the second library and get it over with, especially as it was starting to get late in the day, but I decided to keep with my original plan of stopping half way for a coffee and a proper break.

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I didn’t want to be wandering through the park in the dark, so I didn’t stick around too long. I made my way over to the second building, which is actually where my classes have been taking place, so I had a rough idea how to find it. It’s a little more of a maze than the first one, so I had to do more searching when I got in there than I thought I’d have to. It was also incredibly warm. I started to get very dizzy in the final room, so I just looked quickly for what I needed, got back outside to sit down on the wall and then called my taxi home.

A part of me was frustrated that something seemingly so simple had taken such tactics and so much effort. For a while I considered how quickly and easily it could have been done without anything holding me back. But I brought myself back to feeling proud for giving it a try. I have plenty of people who could have collected those books on my behalf. I could even have walked in, sat down and asked one of the staff to bring them all to me. But I tried to do it myself, and that felt good. Now I just have to write it!

PS—> I cashed in my 9th Coffee No.1 loyalty card this week. It’s been done during a period longer than a year, but 90 walks still seems a crazy number. 100 next!

coffee number 1 card

 

Level-Up: Part 56

This post is a couple of days later than I wanted it to be because I was either incredibly tired or very busy, so I’ve been trying to fit things in where I can. Such is life.

When I last saw my rehab therapist at the hospital she told me that my next challenge was strengthening my balance functions in low light and in darkness. As my eyes do a lot of my balance work for me and pick up where my brain and inner ear fail, the lower the light, the fewer points of reference they have to inform my brain of my body position. This inevitably makes it more difficult to walk alone in the dark. In the winter when it’s often dark by 4pm, that cuts out a few hours I might have had in the summer.

On Thursday I had a late afternoon, routine doctor’s appointment. They were running late and I spent about 30 minutes past my appointment time waiting to be seen. During that time I contemplated walking home in the dark. It’s a decent walk for me in daylight, but instantly becomes more difficult without all my eye-power. I eventually decided to give it a try, figuring that if I couldn’t go any further I could just call a taxi from wherever I stopped. I’d called a taxi to take me there, so one more wouldn’t hurt.

I slowly made my way past the shops, trying to keep my steps steady, and decided to stop in the last one to get a hot chocolate to warm myself up with. It was freezing and I figured I didn’t need to shiver any more than was necessary. Also…HOT CHOCOLATE! While stood at the machine waiting for the cup to fill I was hit with a massive dizzy spell. The kind that feels like my face is draining to a kind of grey tint and makes me want to drop to my knees. It’s so scary when that happens. I feel like my body’s moving and swaying all the time, but when the big vertigo attacks layer on top of that it’s hard to keep your cool. When it first started a few years ago, the panic at what was happening to me in that moment often took over and made me cry in the street or in public. It remains distressing, but it’s really unhelpful to let that happen. It zaps all the strength you need to stay upright. So I’ve taught myself over a period of time to ride it out. It seems weird that this massive thing was happening to me but nobody around me had a clue.

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After a couple of minutes it stabilised enough for me to move out of the shop and carry on walking. It was a very wobbly, unstable walk but I eventually made it home and felt accomplished for having carried on when I didn’t know if I could. The intensity of the vertigo kept trying to wave over me again throughout the walk, but using my harshest expletives I kept telling it to pipe down until I’d made it home.

For the next few days the vertigo attacks remained as sudden and powerful. Sometimes they were short, other times they were longer and needed some very controlled breathing. On Saturday I was desperate to go out somewhere for a few hours. The weather was sunny and frosty. My favourite kind of weather. I knew, though, that my brain was asking for some rest and pushing it wouldn’t help. I compromised. I put my jacket on, took my audiobook and some tea out to the garden for a while so I didn’t have to sacrifice being outdoors on such a lovely day.

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Helloooo, eye bags.

It’s nice to have made an adjustment and enjoyed it. Yes, I wanted to go out for a walk, but to have found an alternative that didn’t feel like it was ripping me apart was a nice little moment of emotional progress. I managed a short walk on Sunday and by Monday I was feeling slightly more stable but tired by those few days of having to keep myself still so consciously.

The final moment of recognition that I was learning to cope with and around my illness came in the form of happiness for other people this past week. I don’t want to go into this in depth, because it feels a little private. But last weekend I had an opportunity to get excited about other people’s fun and the thing was, I didn’t even have to try most of the time. There was somewhere I wanted to be and people I wanted to be with. I couldn’t be there, but I was excited on their behalf and thrilled they got to have the fun they deserved. There was no self-pity, no knot in my stomach, no dread as it approached. As long as I got to hear all the brilliant stories about it afterwards, it was okay. It was so instinctive to feel happy for other people that I almost dismissed it as not being an achievement at all. But in many ways it’s the biggest. It’s a year and a half of hard work and there’s only one other person who can appreciate how much work that’s taken, because they saw the lowest moments. In a way, it felt like claiming a little piece of my personality back from the illness that stole and skewed it. It’s the piece that’s kind, caring and giving. The piece that says someone else’s happiness is a reason to smile along with them, not curse them because you’re not doing it too. That’s who I really am. Given the choice, would I have chosen to be there? God, yeah. Yes x1,000,000. But hurting other people with your own misfortune and making them feel guilty about the things that make them happy is about as destructive as life gets. I’m not saying I’m never envious. That’s human. But I promise, with hard work, it becomes something you can deal with.

Once per week I record my chronic illness achievements and discoveries here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.

Level-Up: Part 55

I’m back! What do you mean you didn’t even notice I was gone?! You know last time I said that moving to posting Level-Up fortnightly was really working for me? As the weeks went on I found it wasn’t. Two weeks is a surprisingly long time and I was starting to feel really disconnected from it. I kept forgetting things I wanted to say, but then when I came to write, I didn’t know what to say. I realised that what I’d really wanted was just a short break from it. As valuable and rewarding that first year of blogging my illness had been, it was also pretty tiring. Even when I had wonderful news to share, it was always emotional. So I’ve taken a few weeks away and I’m now ready to begin again. I’m going back to weekly posting but moving from Sunday to Monday. That way, Sundays can stay a day for relaxation but I can still have weekly updates. I want the series to continue to be honest about chronic illness, but I may also take a few more breaks when needed. I’m going to try to apply what I learn from each week to a wider setting, too. That first year was absolutely about helping myself learn to live with my own disability, but so much of what I took from it can be applied to other life situations, so I’ll do my best to cast my net a little further with this second year. With that, let’s move on to Part 55.

A couple of weeks ago I had a really bad day. Physically I felt on my last legs. I was so dizzy and so exhausted. Just when I was trying to summon some strength to have a good day, a thick envelope arrived from the DWP. Just seven months after my Personal Independence Payment appeal had been approved, it was time to start the application process all over again. It seemed like I’d only just finished my initial application, which I’d only received after appealing, and now I had to start proving that I’m a disabled person all over again. I understand why it has to be done, and after making a few calls to them I found that it shouldn’t be as arduous a task this time. They were actually making a 12-month head start on my current November 2015 end date to ensure that I don’t get cut off because they’re too slow in getting the update through. But there’s something about having to continue proving your illness when you feel so unwell that breaks your heart a little. They also only gave me three weeks to resubmit my paperwork.

I cried a bit. No, a lot. I didn’t want to have to deal with it again. I didn’t want to have to face being ill at all. I wanted it just to go away. But that’s never a useful way to think. You can’t wish it away. If I could, I would have been well again after five weeks, not wishing almost five years on. I tried to talk myself into a more positive frame of mind and focus on the good stuff. I wrote a long, ranty blog post. I wrote all about how I’d forgotten to mention I’d been collecting Coffee No1 loyalty stamps for a year and had managed to fill 8 cards; making 80 short, slow, but important walks.

Coffee No1 Card

By the time I got to the end and read it back I knew I couldn’t post it. It was an honest indication of all the emotions I was feeling that day, but it wasn’t interesting or helpful. It didn’t even feel good to be writing it all down at the time. It did, however, give me an idea for a new physical challenge.

Before I developed my vestibular disorder I used to cram as much as possible into my lunch-hour. I’d dash out of my office and into the city centre. If I had nowhere specific to be I’d run into Marks & Spencer to buy sushi, then I’d pop down the road to get a Starbucks. I’d drink the coffee on my way back to work, then eat the sushi at my desk. If I was really speedy I managed to do that in under an hour. I didn’t do it every day, but when I did, it made me happy. After I became ill I couldn’t even walk across the street to use the terrible coffee machine in one of the university cafeterias. Even if I could have got in there, just standing in a queue and carrying it back would have been impossible. I used to quietly scream with joy when someone announced they were going to the good coffee shop around the corner. It sounds dumb to say that I cried over coffee, but I suppose it wasn’t really about the coffee. It was about the fact that I was losing everything. All the things I’d taken for granted were slipping away. If I couldn’t even go and get a cup of coffee when I wanted one, what was left of me?

On that bad day recently, I ran all this through my head. I thought about how I used to sit at my old desk and stare out the window, desperate to run…anywhere. But I couldn’t even walk anywhere. The fact that in the year I’d been trying to live around my disability I’d built up the ability to carry out those walks seemed insane in comparison. Yes, I’d only been able to do it because I’d made some major changes to my everyday and working life, but I had done it. I wondered if I’d be able to do the walk from my old office, into town to M&S and Starbucks, then back to the office again. It seemed like a big task and probably beyond me without some help. But if I was going to do it, I needed to do it alone. I kept waiting for a good physical day, but they were pretty hard to come by over the past few weeks, so it never seemed like a good idea.

Yesterday, I decided I needed to do something, even if I modified the challenge. Instead of starting at the office I got a taxi to the museum, about two-thirds the way down the long street into the city centre. It cut out the bulk of the walking. And as an aside, it made me smile that as I got out the taxi, Katy Perry’s Roar was booming from the nearby Winter Wonderland. I kind of needed some celestial encouragement at that moment. With a few stops to sit down along the way, I slowly made my way down the remainder of Park Place. I went into Marks & Spencer and bought some sushi. I then made my way toward Starbucks. I ogled the Italian food stall on Queen Street before finally getting into Starbucks and sitting down with my drink. I was feeling a bit shaky at this point, so the wait there was needed. When I felt ready to move off again I picked up a couple of bits on my way back past the Italian food stall and headed back toward the museum steps to call another cab home.

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What used to take me 30 minutes took two hours, but I didn’t let that dampen the satisfaction of what I’d done. I hadn’t completed the whole, original trip. I certainly hadn’t done it in under an hour, but on a day where I knew I didn’t have the stamina for that, the modification felt okay. There may still be so much wrong, plenty of days where I don’t feel like fighting and the frustration of being faced with the things I can’t do pokes at me, but I no longer have to stare out the window unable to cross the street every single day. In that moment, I couldn’t picture what breaking through that wall would look like, but life has a way of leading you somewhere better even if you can’t quite believe it at the time.

THREE SIMPLE TIPS FOR DEALING WITH A BAD DAY

  1. Let it out and let yourself be sad. Denying you’re struggling can sometimes make it worse. It might not feel like it’s doing any good at the time, but venting, either to a friend or just writing it down, can stop it fizzing up like a shaken bottle of pop. Writing that blog post and speaking with sister-in-law helped me air out how bad I was feeling.
  2. Once you’re done with the bad part, try to think of something that’ll make you feel better. Something relaxing can help, but even better is to find something that’ll make you feel good about yourself again and give your ego a boost. It might have taken a while to find the right day, but I kept focussing on my little trip yesterday and I felt accomplished by the end of it. 
  3. Put your trust in the future. Blind faith is almost impossible. At a low moment, you can so easily convince yourself that what’s bad now will always be that way. I know how difficult it is to believe in things you can’t see yet, but I’ve seen proof that things I didn’t think would ever be possible again can happen. And if you think your hand might slip while you’re hanging on, let someone else hold it for a while. 

Initially every Sunday and now every Monday, I record my chronic illness achievements and discoveries here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.

Level-Up: Part 54

Since posting Part 53 of Level-Up I’ve also written a separate but related post that you may wish to read if you missed it. It’s about kindness, how not to reject it when it feels overwhelming and how other people’s compliments on my own illness journey shocked me, in the nicest way, into recognising how far I’ve come. If you’d like to read that I’ll link it here.

Physically, the past couple of weeks have been pretty tough. I’ve tried not to complain too much and I probably kept it to myself more than I should have, but sometimes making a big deal of it actually makes it a bigger deal than you want it to be, if that makes any sense at all. Sometimes you don’t want to pay it too much attention or give yourself time to feel sorry for yourself.

It could just be the gradual change in seasons and temperature, my vestibular system is sensitive to even the smallest changes, or it could just be one of those bad spells, but I’ve been feeling extra dizzy and as a result more nauseous than my usual baseline. The dizzier I am, the more pain I end up in. When your body’s constantly trying to move to react to that falling feeling, your muscles get tight, particularly around the neck, face and eyes. I’ve got quite weak jaw muscles too (I had surgery a few years ago) so it doesn’t take much to send them into spasm. The middle of last week was incredibly painful. It hurt enough to make me cry. Of course, all this extra-everything has been interrupting my sleep which, in turn, leaves you with less energy during the day, less strength to stay upright etc. So you end up getting on a bit of a hamster wheel of feeling dreadful and not being able to break the cycle.

By the middle of last week I was being reminded how physical illness can wear you down mentally. I didn’t get struck with another big bout of brain fog, thankfully. Although that can drift in and out for a few minutes every day to a certain point. But over a few days I could feel my mood dropping as I got more tired and couldn’t stop the pain in my neck. It can be hard to stay cheerful. What I was most proud of though, was that even when my spirit felt crushed, I knew it wasn’t going to last. I could so easily have let it keep pressing me down, but I knew from experience that it could only keep me down if I allowed it to. I don’t know if I fully knew that, maybe even six months ago. I put out a hopeful call to the universe for a nicer day, reminded myself that I was allowed to be unhappy about being unwell, then started looking for some positives. It didn’t make the physical stuff any easier, but it stopped me sinking further. I let myself have a day off work on Friday to enjoy Halloween. That helped in regaining some energy.

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The other thing I’ve been pleased about is that I haven’t skipped any classes from my university course yet. I’ve noticed that at least half the other students have missed at least one, for one reason or another, but I’ve made it through without having to duck out so far. During the first hour of the class two weeks ago I felt so incredibly dizzy that I was mentally flipping a coin to decide whether to leave early or not. It was bad enough that I could feel the colour draining out of my face and I needed to count myself through blocks of 10 minutes at a time. Thankfully, it eased off enough during the second hour for me to stay. I was so pleased. I love the topic and didn’t want to miss anything.

I also employed the same sort of stamina the following Saturday. It struck me that I hadn’t been on the train since going to Plymouth, which had been about a month. I’d made plans to take two one-stop train journeys on that Saturday, but I’d woken up feeling exhausted and thought I might have to scrap the idea entirely. After spending all morning flipping the same mental coin trying to decide what would be best, I got a taxi to the university, where I needed to go to collect my ID card. I slowly walked across the bridge, bought myself a drink, sat down for a short time to consider whether I could make it the four minutes home on the train and manage the walk from the station to my house, then decided to go for it. Here follows the most boring picture ever taken on a train.

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Learning how to work with my body, make adjustments and accept them as achievements even when they’re not what I originally wanted to do is still a tricky concept to wrap my head around, but I’m getting better at it. The temptation to berate yourself for a change of plans is always there, even when it wasn’t something you could control. But to put it into perspective, on a day when I felt like I was more dragging myself around than walking, I still pushed myself to complete one train journey. That’s big.

Initially every Sunday and now every second Sunday (I know this is Monday) I record my health achievements and discoveries for that period here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.

Some reflection

First of all, if you’ve left a comment for me or sent me a message over the past 24 hours because you found me through VEDA, thank you so much. I promise you haven’t been ignored or forgotten. I’ll be in touch directly by the end of tomorrow.

Yesterday the Vestibular Disorders Association shared my Level-Up: Part 52 video on their Facebook page. They’re probably the biggest charity and leaders of community information for those living with balance disorders around the world, so it’s a big deal that they shared it to a few thousand people. I didn’t know about it. My face just popped up on my Facebook feed late in the afternoon. Even though I thought it was nice and a bit exciting that they’d shared it, I didn’t expect it to have much in the way of impact. I was wrong.

People who’d watched the video started leaving comments in various places and began emailing me with thanks for sharing my experiences, in turn helping them gain some perspective on theirs. Someone told me today that because of my video she now believed there was hope that she could live with what had happened to her. I was stunned. I don’t expect to inspire anyone. I always say, “Maybe what I’m doing will help someone else in the same boat.” but I never expect it to happen. How could something I’d started doing for myself have an effect on anyone else? I don’t think I’m remarkable, I don’t think I get noticed that often, I don’t think the universe pays me that much attention. That’s not me being falsely coy or humble, just past experience.

The praise and thanks felt… overwhelming. I started denying it and thinking of reasons why they must be mistaken. But I thought about it some more and realised that nobody gives kindness away for free. Nobody has time for that. Most people only do it when they mean it. When someone steps up to tell you something good about yourself, to be kind to you, they’re taking the time to give you a present. It’s nerve-wracking to contact a stranger. It’s scary to pay someone a compliment when you feel like they might reject it. When you don’t accept the compliment, or worse, choose not to acknowledge it at all, however much you’re inclined to think you don’t deserve it, you’re taking the present, putting it on the floor and stamping all over it. You’re left without the good feeling of having been given the present and the person who took the time to be nice to you feels like their kindness is worthless. Two people are left rejected. I don’t want that.  So thank you to everyone who contacted me. I’ll try to explain in my replies how much I appreciate it and will offer any further advice I can.

compliments

The other reason the messages were overwhelming is that it showed me just how incredibly far I’ve come. It’s shocked me. A lot. Sometimes you don’t notice progress on a daily basis. I’ve said before that I was never diagnosed with depression, but I think I did have a form of situational depression. I was just so afraid that looking at it that way would sink me deeper that I kept pushing it down and letting it come out in other ways. I hurt people close to me with the anger and frustration that repeatedly bubbled up. I was selfish. I made everything about me. I cried a lot. It wasn’t deliberate, but I pushed a lot of people away before they’d even had chance to help because I assumed they wouldn’t understand what I was feeling. Physically I was so broken, so dizzy, so constantly sick, and the majority of my life had slipped away from me. If this also meant I was depressed on top of my physical limitations, which were extreme at the time, I didn’t know what that meant. Not without consequences, I reached the point where I got some help. I don’t think that first course of counselling saved my life in that I’d wanted to die. I never did. But it set me on a long path of accepting my life for what it had become and it showed me that it was possible to live again.

It’s been a long road, but looking at the person who made that last video and the way it’s helped other people, then comparing myself to the person who walked into a counsellor’s office 16 months ago and worried her because I was too closed off to even connect to her initially, there’s a massive difference. That’s why this 24 hours is overwhelming. I couldn’t have made that video last year. I didn’t know where to start. I am a much better, stronger, nicer to be around version of me now.

I think I’m being a bit annoying online and with friends at the moment. Maybe pushing the whole ‘life is short, let’s make the best of it’ thing a bit too often. It’s not my baseline to be a happy-clappy, sunshine and rainbows kind of person. I’m a bit of a grump really. I ask a lot of questions. It’s part of being a writer to hold people accountable, make observations, expose yourself to all the bad things in life and not keep yourself in a frothy bubble. But the reason I try to keep my spirits up and try to cheer people up when they’re having a bad day is that I’ve been to that really low point. I always wanted to live, but I’ve been in the place where you wake up every morning thinking, “Urgh. I don’t think I can get through the day. I’ll just survive it until I can get back to bed again. Where, of course, I won’t sleep. Again.” And I’ll tell you this, it fucking sucks, man. (Sorry, mum.)

Being angry and sad and miserable every day is the worst and it takes immense strength to break the cycle. I never want to go back there. I never want to feel that way again. And yeah, some days I really don’t want to get out of bed. Some days I could punch my physical disability in the face, if it had a face. I still have days where I struggle emotionally, because I’m human and we’re all allowed to have bad, sad days. But I always pull myself back to the middle. And now there are other people looking to me to help them, I’m all the more inclined to try even harder. So in helping myself I helped other people, and helping other people has now bounced back to me again. It’s a lovely cycle. I love when people lean on me, ask for my advice and let me lift them up. So jump in any time. I’ll catch you. It’s hard making it to the other side, but it feels great when you do. I promise you’re worth the effort.

Level-Up: Part 53

First of all, I have to say thank you to everyone who was so kind and supportive after I posted my video to mark one year of this blog series. When I hit the publish button, my hand was genuinely shaking a little. I just didn’t know how it would be received. I thought it might be too long, too boring, too saccharine or a combination of all three. But it got shared a lot and the feedback was all good. Invisible illness is, understandably, a difficult concept to understand when it’s not happening to you. So to have people who suffer with similar illnesses tell me that I’d got it right and it had helped them articulate their feelings felt pretty amazing. Certainly worth the (almost) tears.

The second thing to note is that making this series fortnightly seems to have been the right decision. It’s nice to have that longer break in between posts, to not feel like I’m putting myself constantly under a microscope. But I’m glad to still have this here to record some of the good and bad things this past couple of weeks has presented. I’ll break the two main factors into sections to make them easier to discuss.

Two and a half weeks ago I started a university class about comedy and how it fits into our culture. I love comedy and love learning, so it was the first one that jumped out at me when I looked through the list. I was a little apprehensive about signing up. The class runs late in the evening and by the time I’ve cooked the tea I’m pretty much ready to put my pyjamas on and collapse in front of the TV or my XBox. In fact, I often end up cooking in my PJs. When you have a chronic illness that impacts upon your energy levels, you get a bit precious about what you commit your time to. Particularly when that’s a regular commitment, such as this class. But I also felt that to not do it at all simply because I might have to skip one or two due to illness would be letting illness control me, so I made the jump and signed up anyway.

The university has a robust disability support unit and on my application I was able to state that I might need some special assistance and made suggestions as to how the class might be made more manageable for me. I asked if I could have an adjustable, office-style chair to help me be more comfortable during those two hours. As I have a feeling of movement in my body all the time, a chair that moves a little helps me to slightly fool my brain into thinking the movement is deliberate. In a static chair it feels all the more obvious that I shouldn’t feel like I’m moving, which ends up making me feel dizzier. Before I could even say hello on walking into the room the chair was presented to me, which put me at ease straight away. It was already waiting for me when I arrived this week too. So that’s my first tip, if you’re worried about being physically uncomfortable, check out if there are facilities available to make things easier. They’re not always simple to find but they do exist.

Concentrating on media theory and history for two hours is tricky. It’s not like watching a film where you can drift away for a few minutes and come back to it or even pause for breather. You have to focus on what’s being said so you don’t miss anything. I soon realised that as a lot of the students in the class were from overseas and in some cases quite young, I seemed to be one of the older, more informed people in the room. Particularly when it came to the cultural references in the comedy clips we were watching. So that gave me an opportunity to talk more and answer questions. This helped me stay engaged and not drift away. If anything, I had to stop myself from being a Lisa Simpson and putting my hand up for everything. But it felt great to be doing something I love and actually be getting university credits for it. Ripping things apart to see how and why they work is what I do in my head involuntarily anyway. This just gives me a chance to do it more formally and not feel held back. So that’s my second tip: don’t let illness or disability keep you away from things you’ll enjoy because you may have to dip out from time-to-time. The enjoyment you get from the times you’re able to participate will outweigh them entirely.

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That first week, not just because of the class but in general, was busy and pretty tiring. By last weekend I was already feeling like I was worn out and getting a cold, and it didn’t get any better as the week went on. Actually, a terrible bout of brain fog started setting in and it’s only now just starting to clear out a bit. It was a lot worse than I let on, because I hoped that if I ignored it, it might just go away. It didn’t. I’ve described before how brain fog feels, so I’ll try not to repeat myself. It can hit anyone who’s fallen into a period of fatigue hard. New parents get it a lot. In terms of having a vestibular disorder and for me it’s usually when my brain is exhausted and can’t process properly. With balance disorders your brain is having to think consciously about keeping your body upright and stable. When energy is scant, that means just being able to type a text message clearly becomes a challenge. This week the weather was extremely heavy and damp, so as well as this cloud of tiredness I also felt like my head was being squeezed by the air pressure. So on top of the exhaustion was extra dizziness and nausea.

Brain fog is truly horrible. For me it means I can’t concentrate, can’t read properly and like I said, I find it hard to type, speak or articulate things clearly. You make ditsy mistakes. When you fire off an email or a message and get no reply you go back and read it again to make sure it actually made sense. Then you wonder if you made some error of judgement or have said something inappropriate. You feel utterly stupid and like you must be just awful company. That, in turn, impacts upon your self-esteem. That’s frustrating because since finishing my last batch of counselling, my self-esteem has improved a lot. You know logically that you’re not an idiot, but it’s hard to believe it when you can’t even construct a sentence in a coherent way. It’s a big occupational hazard for a writer. It took me two days to write something I would normally have been able to complete in an afternoon. I still don’t know if it was any good or not. Don’t get me wrong, my default setting is ‘massive dork’. If you’re trying to be cool you’re not cool, so I just be my dorky self and cross my fingers that people actually like it. But trying to function in the mist of brain fog can make you feel like you’re failing at everything and it’s scary when it takes its time about leaving again. On the day of my college class I didn’t work. I tried to, but nothing was happening, so I stayed in pyjama bottoms, made myself presentable in the evening and pooled all the concentrating I had left into absorbing those two hours.

Thankfully, today the fog is just starting to clear. I’m crazy-dizzy and nauseous, but at least speaking and writing don’t feel quite so much like walking through mud and chewing toffee. Big apologies and thanks to everyone who put up with any inconvenience or irritation I was to them this last week and especially to those who helped me out when I was being silly. It’s highly appreciated and never forgotten. My only advice coming out of this episode of brain fog is to try and remember that it will pass and being upset about your (temporary) forgetfulness and idiocy actually makes you feel worse. That’s very easy to say when you’re on the other side of it though.

See you in two weeks with hopefully a slightly less fuzzy head to report.

Initially every Sunday and now every second 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.