Level-Up: Part 52

It seemed fitting that I should mark the first anniversary of the Level-Up series with a video. It’s slightly longer than I’d usually make them, but it’s not all just me rambling. I thought it might be a good idea to list the five things I’ve learnt most from this year. I speak about them largely in terms of how I’ve applied them to living with illness and disability but, as I say in the video, I think a lot of them can be adapted to life in general. If you want to skip the introduction you can jump ahead to 2:16 to make it a bit shorter. By the way, it gets to a part where it looks like I might cry but (SPOILER) I don’t. Just in case that sort of thing makes you uncomfortable.

See you in two weeks!

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

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Level-Up: Part 51

I’ve been hanging off on writing this post. Initially it was because I was too tired, but also because there’s a lot to say and I wanted to arrange it neatly in my own mind before sharing it.

Last week I went on a short holiday to Devon to coincide with my dad’s PhD graduation ceremony. The first thing I have to say is that I had a great time and it felt good to have a proper break with no computer screen to stare at. The biggest thing to say though is that in terms of what I pushed my body to do it was the most accomplished thing I’ve done to date. I’ll break it down into two sections to make it easier to discuss.

THE TRAVELLING

Before last week the most train travel I’d managed to do within the last four and a half years was one hour. A single hour from Cardiff to Bristol and then the same journey back a short time after that. Exciting as that was, it left me tired afterwards. The journey had been smoother than the local trains but also faster, so it made me a little more queasy and I had to avoid looking out of the windows too much. This journey would be one local train of about 10 minutes, another hour journey to Bristol, a short break and then a little over two further hours to Plymouth. The first two sections of the trip went reasonably well, although I don’t think I’ll ever get used to how terrible the Severn Tunnel makes me feel.

IMG_6270The third and longest section was more of a challenge. I was already starting to feel tired and for the first hour of the journey I had to sit on the outside of someone I didn’t know, so had nothing to lean into. I could have switched seats, but if I wanted to stay travelling forwards I had to stay where I was. This line of track also has a lot of tilts and turns to it, as much as a train can turn. So there were several points where it felt like I was on a rollercoaster ride and became incredibly swimmy and unsteady. I just tried to focus on reading comics on my iPad, which served as some distraction, but trying to make my eyes focus on quite small print when I was already dizzy maybe didn’t help.

IMG_6272Thankfully, after a few people left the train and left some more suitable seats free I moved across. Having the wall of the train to lean into made my natural slump to the left a little easier because I didn’t have to work so hard at keeping my body upright.

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We eventually made it to the hotel. I was incredibly tired and, I’ll be honest, massively overwhelmed by what I’d done. I just cried it out for a while and tried to get some rest.

Coming home I was starting from a very low energy point and with the feeling that’s a little like a shaken snowglobe. We’d done a lot over those few days, far more than I was expecting, and there hadn’t been much time to catch up. Still, I had to go home. That’s the frustrating thing about making plans with a vestibular disorder: you just don’t know which days are going to be good and which will be bad. The simple answer is to make no plans at all, but then you don’t get to do anything. Coming home I managed to have a wall to lean into on both trains, which helped a lot. I also switched to watching some TV and films I’d downloaded rather than reading. This was a much better distraction from the window as it didn’t require much effort. By the time we got to Bristol I wondered if I might collapse because I was so worn out and hadn’t been given a chance to sit down directly after getting off the train. But I held on and bought a pasty to cheer myself up.

I’m massively proud of being able to complete both those long journeys. There were times when I compared it to the travel I used to do before I was ill and got a bit down about how different and difficult it felt. But I’ve tried to fix on how big an achievement it is as part of my life as a disabled person. In that sense it felt like a much happier thing. My next step is to try taking some longer trips by myself, but that brings up a whole new set of issues to think about. How will I get my luggage on and off the train in time before it pulls out of the station again? I get incredibly dizzy if I stand up while the train is moving. What if I need a wee and have nobody to hold on to? Which will be the best seats to book in advance? I only have one free hand. If I want to grab a coffee and pull my bag behind me, that’s going to be near impossible. What if the train is severely delayed and I’m already feeling rough? Individually they’re all small things, but put them together and there’s a lot to consider as a disabled person travelling alone. Still, it’s the next logical step and pretty exciting considering just a few months ago I just sat at the local station to remember how it felt to be there.

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THE TRIP

The trip was fun and, like I said, so good to get some proper sea air. Devon and Cornwall are some of my favourite places on the planet, so to be back there felt special. There’s no getting around it though, in fact it became a running joke, the whole of Plymouth is on a massive tilt. Nothing is flat. So for me, who struggles to walk on flat ground, this was a big challenge to say the very least. The first walk down to the waterfront after arriving was a bit of an eye-opener in that sense. Still, I managed to slowly get down there for a coffee and a sandwich and make it back to the B&B, which was about 3 streets away.

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IMG_6283Later that night it was suggested we all go out for dinner. I was pretty worn out by this point but agreed to go. Unfortunately, it wasn’t really agreed where we should go and we ended up roaming the streets looking for somewhere to eat. I just can’t do this kind of spontaneity at the end of such a big day and I was lucky not to have fallen over on our way to the burger diner that was eventually settled upon. Coordinating my legs got impossible and I was very upset by this. What’s better for me is to know where we’re going and get a taxi there. I’d love to go on a voyage of discovery, but sometimes it just can’t happen. Three of us got a taxi back.

The next day was graduation day and with it not starting until 4pm I planned on spending the morning staying horizontal, but I also really wanted a cream tea. I agreed to meet my family wherever they stopped for one in a taxi, but there was a little miscommunication. They assumed I meant wherever they stopped for a breather and I ended up walking the few streets to meet them because they were still fairly close, only to find that I still needed to walk up and down hill to get to the cream tea cafe. It wasn’t easy and I had to stop and sit a few times along the way, but I did it. What’s difficult to explain to people is how I and others with chronic illness need to pace ourselves. Everything we do has a cost along the way, so you have to selective. Looking for alternatives often comes across as fear, but fear holds me back from doing very few things these days. We have to grab energy-savers where we can so that we can enjoy other things. It would have been so much better for me to get a taxi to the cafe. It was miscommunication, but I need people to understand that when I say no to one part of something, it’s just so I can enjoy the next thing more. Let’s marvel again at the cream tea though.

IMG_6296This all left me more tired that I’d anticipated and I rested so much when we got back that I didn’t leave myself much time to get ready for the ceremony. We made it though, enjoyed the 90 minutes, stood for the photos and then went to a buffet reception afterwards.


IMG_6311From here we walked back to the B&B to drop a few things off and then went straight to a restaurant for a celebration. The food was beautiful but I was starting to feel very spaced out by this point so can’t remember too much of it. At one point I left the table for 10 minutes because the noisy atmosphere was making me feel quite disorientated. The quiet break seemed to help. Maybe I was just distracted that it was set inside a working gin distillery! I declined the offer to go to the pub and headed back to the B&B in a taxi.

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IMG_6320Wednesday morning we were heading home and as much as I wanted to stay sitting down before the train journeys home, it seemed like a waste of the last couple of hours there to sit watching TV. We went for a short walk along the waterfront (again, in something of a daze) then headed for the train station. Which brings me neatly back to the journey I’ve already told you about.

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IMG_6344It’s a little surreal looking at all this written down. Only I can really understand how unwell I felt through so much of it and how much strength it took to ignore and push through that in the name of enjoying myself. And only a handful of the people who were there at the beginning of this illness will appreciate along with me how astonishing it is that I’ve been able to push myself to do these things. It may have taken quite a few days to recover from it both physically and emotionally, but I’ve always been determined that I would eventually assert my authority over my illness so that it doesn’t dictate how I live my life. And while last week may have opened up lots of new questions needing answers, it also let me tick a few more things off my list of stuff I thought I’d never do again. Quietly, that means more than most will really understand.

Every Sunday (I know it’s Tuesday) 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.

Level-Up: Part 50

You’ll have to forgive me for the amount of reflection in these posts over the past couple of weeks and for this particular one being a bit shorter. Reflecting is exactly what I’ve been doing. I’m also extra tired and struggling with sound-induced dizziness today where even small sounds are too loud and distracting, so finding it hard to concentrate and look at the screen for too long without feeling even more dizzy. I won’t have an opportunity to write this post tomorrow, as I would usually do when I’m having trouble watching my computer monitor swaying from side to side. Not only is the first year of Level-Up getting its anniversary in a fortnight’s time and making me think about all the advances I’ve made, but tomorrow I’m embarking on what will be my biggest challenge to date. It seems a fitting way to end the year, with something that’ll open more doors for me if it goes well.

I’m going on a train journey to Devon that will take over three hours. The most I’ve done so far is one hour. Following that we have an event and dinner to attend on Tuesday, then the same journey home on Wednesday. I’m looking forward to the trip, I’m not exactly looking forward to how poorly and wiped out I’m likely to feel afterwards. I’m hoping I have the resolve to be cool about it when I’m struggling to stand and too tired to move on Thursday. Feel free to remind me of that toward the end of the week. I’m trying to remember what I said a few weeks ago: that if I have to give up a few days to exhaustion in the name of doing fun things, that’s just what I’ll have to do. I don’t want to let illness force me to miss out anymore.

In preparation for the trip I told myself that I’d give myself lots of rest this week. In practice it didn’t quite work out that way. There was a strange ‘the show must go on’ feel to the week. There was stuff to be done and I didn’t really feel comfortable with not doing it all or asking other people to do it on my behalf. I carried out all my usual work tasks and built in the walks I would normally try to do, in the name of ticking things off the to-do list. I’m not going to say it was unwise. I’ll just say that I trusted myself to get things done and deal with the consequences. But being so sleepy today, I’m hoping I can get some rest tonight and don’t start these next few days with low energy.

It struck me toward the end of the week how different it is that what’s normal for me now involves things I just couldn’t have imagined doing even a few months ago. Obviously I can’t do them every day or rely on them implicitly, but I thought a lot this week about how much I used to let sit undone or waiting for someone to do it for me; about how much that used to hurt and upset me. It’s empowering having that little piece of independence. I had to make some sacrifices and work hard to bring it about, but I’m incredibly proud of the amount of effort I’ve put into moulding unfortunate circumstances into something that works for me over the past year.

I had a repeat prescription to hand in at my doctor’s surgery this week. My online login wasn’t working and I didn’t want to burden anyone else by asking them to hand it in on my behalf, so I walked there and back by myself. I took my time about it and stopped for a while outside to give myself a break,  but looking back on Part 14 of the series where it was the most enormous struggle and felt like such a novelty, it felt great to be able to do it and not feel the need to request a round of applause or complain about it being difficult, even though it was. One of my biggest issues has always been recognising the victory in small steps. If it’s not spectacular and letting me jump to where I want to be straight away, then what’s the point? But I’m now at a juncture where all those tiny shuffles along are adding up to make something bigger, beginning to watch the persistent effort snowball.

A year from now I hope I’ll be looking back on the next few days and marvelling at how taken for granted the things I’ll be doing become. But for now, please wish me luck.

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

Level-Up: Part 49

I’ve been thinking a lot about what to do with this Level-Up series after hitting the 52 weeks mark. I’ve been wondering if I should quit it altogether. Maybe a year of recording this illness is enough, both for me and for you reading it. Not that I stop being unwell or facing new challenges because I stop recording it, of course, but I’ve been thinking that maybe people have seen enough of my journey. (I really hate saying ‘journey’.) I spoke with a few people about this and they all thought I should continue, even if I switched up the format or left a little more time between posts, but I just didn’t know.

It’s not just about not wanting to be a bore. There’s something about learning to live with and around a chronic illness that makes you not want to look at it all the time. For me, moving toward a place where I’m still disabled but trying not to let it be a barrier means not focussing on it all the time, even when every day is coloured by it in reality. When you have an invisible illness in particular, you’re forever swinging a pendulum between wanting to blend in and give the appearance of being fine but also wanting everyone to appreciate that you never feel great and it’s a big achievement for you to be there doing some kind of regular activity. How much you want to swing one way or another changes by the day, so it’s a tricky thing to navigate and still left me undecided about this blog series.

This past week I set myself a challenge. It maybe wasn’t the wisest task given how wiped out I’d been the week before, but I challenged myself to walk to the local shops and back (three streets each way, plus shop time) five days in a row. I did surprisingly well until I got to Friday. I managed nicely through to Thursday, including cashing in my 7th coffee loyalty card.

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On Friday I was out of puff, super dizzy and my throat was so sore I could barely swallow. I almost forced myself to do it for the sake of ticking the box, but I had to give it a miss. I felt bad about that. It felt like a little failure, even though I knew that just being able to capitalise on the good days was a huge improvement considering where I was a year ago. I decided to go back and read part one of this series. I very rarely read back over these posts, even though my counsellor suggested it would be a good idea on the bad days.

I didn’t really recognise the person in that post, neither emotionally nor physically. I was incredibly broken by this illness then. I’ve become so much tougher that the person in that post seems like a stranger and it wasn’t even a complete year ago. I was trying desperately to overthrow the control it had slowly taken over me for those first few years, but I was still struggling. Physically it had been the week I walked to the deli by myself for the first time. I remember that day. It felt like the most difficult thing I’d ever done and the biggest achievement. The strange thing is, walking to the deli isn’t physically much easier now. I’ve built up a little more strength from doing more walking, but in terms of how the symptoms affect me, not much has changed. I just accept that’s how I’m going to feel now and try, within reason, not to let feeling unwell stop me. I don’t give in to it. I fight back. Over the past year I’ve basically had to teach myself how to walk again, albeit slowly, with some stops, with a sway and just over short distances. Looking back put some perspective on having a week that let me do it four times in a row. Four is no less amazing just because I didn’t make it to five.

Without Level-Up I doubt I would have remembered the deli trip as well. And what, as I go on to hopefully do new things, if I forget them along the way and don’t have a record for how much more I push myself to achieve? This series has been a lynchpin in me learning to live with my disability. It hasn’t just been a reminder of the journey (there’s that word again) but it’s also encouraged me to do more because I want to be able to write about lovely things if at all possible. So I will continue to write this series, but it’ll probably become fortnightly after part 52: to give me a break from looking too closely too often, to make sure I diarise enough to look back on and to bring you along with me. If you still want to come along you’re more than welcome. And if you think a year was about enough, thanks so much for sticking around. If you read everything it meant you read about 50,000 words. You could have read a brilliant novel in that time, but you gave that time to me instead. Your support is appreciated more than you can possibly understand.

Every Sunday (I know it’s Monday) 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.

Level-Up: Part 48

I wasn’t going to write this post today. I was going to leave it until tomorrow when I’m less tired. But not everything has to be crafted and seen through the eyes of hindsight all of the time.

Before my eyes were even open on Wednesday I knew it was going to be a bad day. I already felt that the bed was moving, but not in that really fun way. It was going to be an extra dizzy day. I wish there was a better word to describe it than ‘dizzy’. Dizziness is that spinny feeling that people associate with vertigo. And I do get that, but it often appears on top of the thing that never stops. What never takes a break, even for a second, is the feeling of movement. Like lots of hands on you moving you around. Again, not in the fun way. It’s that fluid, swimmy feeling you get in your body when you’re in deep water, except you’re not in water. You’re stood in your kitchen making tea or sat watching telly or attempting to focus on the words in a book or trying to walk to the shops. It’s that stumbly feeling you get in your legs when you’ve had that one pint too many. It’s the squeezed, woozy feeling you get in your head when your sinuses are compacted with gunk.

On a good day I can try to tune it out. It doesn’t stop but it’s at a level that I can at least distract myself from the feeling. After four and a half years without a break from it, it’s almost my normal now. On a not so good day it refuses to obey when I try to tune it out. I turn down its volume and it grabs the dial to switch itself back up again. For the most part, I have learnt to accept those days. They’re never pleasant, but I just do as much as I can with the stamina I’ve got and make the best of it. I used to give in straight away. If I woke up feeling like I did on Wednesday I’d assume the day was ruined and get very upset about that fact for the entire day. Counselling has taught me to fight that impulse and fight back.

So Wednesday was one of those days where doing anything felt like traipsing through a muddy bog, but I got through it. The problem came later. Having spent so much time trying to keep myself still I was exhausted, but I couldn’t sleep for the movement. I wasn’t up horribly late, but I woke up a lot during the night to find a better sleeping position. So Thursday felt much the same as Wednesday, except now I was even more tired. I still managed to concentrate on my work, but I could only do it by turning off the radio and YouTube and Spotify so that I could get some pretty words written. It’s at this point I used to get angry. So annoyed that I was losing time to this stupid, pointless thing. But I fought that off. It’s destructive. The anger steals even more time and energy.

Come Friday I was feeling more rested and the intense movement dropped back to a slightly more manageable level. I was still tired from those few days, but I at least felt more comfortable moving around, walking and sitting at my desk. When I woke up yesterday, I wanted to do something. It was Saturday and I had a few things in town that would be handy to get out the way, but I still had the weight of those more difficult days making me feel a little weary. I knew the train was out of the question. I knew I only had a short supply of energy and it’s not just the train journey I have to consider. It’s also walking to and from the station and some sitting around waiting for it too, assuming there’s a spare seat, of course. But there I was last week touting myself as some kind of positive energy guru, with my ‘just jump and see what happens’ mantra. Maybe I shouldn’t write it off completely.

I ditched the train and ordered a cab to the city centre. I had three goals: to go to WHSmith to buy my favourite American magazine, to pop into ZARA to see if the bag I was looking at online had a long enough strap for my liking, and to go into M&S to grab a few skincare bits I’ve run out of. Technically I could order those last things online, but I’m still enjoying the novelty of being able to hold things in my hands on the day I’ve payed for them. It’s funny the things you miss when you can’t walk around a shop for a few years. Thankfully, all three of these shops are only a few steps from each other, so there wouldn’t be too much walking involved.

The magazine was easy. It was right by the door and I was able to grab it, pay and leave without too much bother. ZARA, maybe three shops down, wasn’t too busy. There was a lot of space to move around, but I was beginning to struggle already. The lifts in there had made me feel very unsteady on my feet and I forfeited heading for the third floor in favour of paying for my new bag (the strap was long enough) and sitting on one of the benches out in the street for a while. I hadn’t even been there that long.

After about 10 minutes or so I looked up at M&S, which was right next to me, and thought, “How bad could it be?” It was fine at first, the lights a touch too bright and too many people oblivious to anyone around them, but just Marks & Spencer being what it always is. After maybe 15 minutes I started the feel like someone had pulled my plug out and it was taking everything I had left to stay upright and make my way to where I needed to be via yet another lift. Upstairs it was warmer, I couldn’t find any baskets and I kept dropping my stuff. Nobody helped. It’s at this stage I’d have given up in the past. Just let it take over. But I didn’t. I sat with it, paid for my stuff and got out of there.

I eventually found my way to Starbucks (of course), got a drink and a cake and just sat. By now my body was starting to pack in. All the energy I’d funnelled into making myself walk was depleting and all those times I’d felt like I was falling had left my arms and legs shaking. It’s not an anxiety kind of shake. That’s different. This is my body saying, “Nope. Can’t do any more. Too tired. Stop now.” It’s like a form of shock. I made it around the corner to the next non-pedestrianised street and called a taxi home. I didn’t really move much for the rest of the day or the evening.

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As the clock crept closer to midnight I was still shaking. My shoulders in particular just wouldn’t stop. All day I’d been surprisingly cool about it all. It’s a nice feeling when something that used to be so distressing can now just be ‘something that happens to me’. But by now I was so tired and knew I wouldn’t be able to sleep feeling like my body was still moving so violently and it did upset me. I felt silly and a bit disappointed that it was making me cry so much, because I’d been so proud about handling myself so well for most of the day. But I just wanted it to stop so I could sleep. Thank you to the friend who answered my call for company and helped to distract me from it. I know it was late and I know you were tired, but I really appreciated the chat and the textual hug.

It was some time between 2am and 3am that I eventually dropped off, so I’m still sleepy and a touch weepy today. But the shaking is easing off now. It’s mainly just in my hands and my neck/head. A quiet day today should bring the dizziness, for want of a better word for it, back to something a little more normal by tomorrow. Then I’ll be on to another week.

This hasn’t been the most interesting story to read, I’m sure. Well done if you made it to the end. But I think it’s alright sometimes to record this illness for what it’s really like, without all the rubbish stuff blurred away. If only for myself, to remind me of all the bad days I quietly talk myself through. Because there aren’t many people who properly realise how big a jump that is from where I used to be.

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

Level-Up: Part 47

I tend to know what I’m going to write about here before I get to Sunday. Every week has a theme or an event where I’ve learnt something, good or bad, and presents itself as the obvious topic of this post. This morning I didn’t really know what I was going to say about this week. I spent most of what was a very long shower running through the days and some of the previous weeks’ activities. This past month or so has been quite the ride, hasn’t it? A couple of trips to the city centre by myself, returning to the spot where I first became ill alone for the first time, using the local train on my own on those same occasions, ending counselling on a high, going on my first cinema visit in a couple of years and not ending up on the floor and, of course, last week’s mainline train journey to Bristol where I tested how my vestibular system might react to high speeds, travelling backwards and underwater tunnels. It was tiring just typing that, let alone recalling all the strength it took to not only get through them, but also to find the energy to enjoy them. And that’s just a list of the positives! The negatives are equally exhausting.

I don’t have a triumphant story to share this week, I’m afraid. I don’t have a sad story either, it’s just been a quiet, head down, working, trying to sleep kind of week. I know people love those tales where I’ve overcome some element of my illness that holds me back. I do too. They’re as pleasing to share as they are for others to read. Your airpunches are definitely felt from here. But some weeks are less eventful and I don’t want to manufacture things so that I have a glorious victory to share. The quiet weeks don’t just happen that way, I have to make a conscious effort to allow for rest time so that I don’t burn out. I don’t always relish the prospect of having to stop to catch my breath, but I’m learning. And in all honesty, I’m a lover of comfort anyway: soft new pyjamas, comfy beds with lots of pillows, oversized mugs of tea, delicious comfort food, expensive candles, a stack of shiny magazines, good books, my XBox controller, my iPad and Netflix. Bliss.

In reliving this past month though, I’ve thought about how much I’ve had to push myself beyond my comfort zone and sometimes put myself in awkward, uncomfortable situations in the name of getting something good out of it. I thought about how many times I’d faced the bad stuff: I can’t do this. This is going to stretch me to my limits. I’m too tired to walk these last few streets. People will laugh at me if I’m too poorly to stay. Will I let everyone down if I don’t make it through this? Will I be letting myself down? What if it all goes wrong? As the garbled quote that often pops up on Instagram says, ah but what if it all goes right?

None of the more positive things I’ve done over the past few weeks, or the past four and a half years really, have happened by chance. Maybe some of them have been a nice bit of serendipity, but in general they happened because I saw all the pitfalls and felt terrified but I did them anyway because I knew there had to be something good on the other side. I know most of us tend to switch off when we read stuff like this. If I’m not in the mood I’ll keep scrolling past it or close the page too. But it’s becoming clearer to me through my recent experiences that the more you push through the bad stuff the quicker you get to the good bits. They’re there, but you have to go out and find them. I get it. Sometimes there just isn’t the will or the energy to push. I’ve had a thousand or more days like that and will no doubt have a million more. They’re not failure, even though they can feel they are sometimes. I’m certainly not painting myself as some kind of PMA junkie. I’m really not. I’m not special. I fail a lot and I beat myself up about it every time. But I’m finding out that if I jump off the edge of the cliff, sometimes there’s a softer landing than I was expecting.

The thought of taking a chance on something you’re not sure of can be petrifying and there’ve been plenty of times where I’ve fallen flat on my face. I make a massive, embarrassed fool of myself most days. And sometimes I literally fall on my face. Homer Simpson will forever be my spirit animal in every way.

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But there are other moments where I’ve jumped off the cliff and there’s just happened to be a branch to hold on to where I’ve been strong enough to grip it for longer than I thought I could. There might be a ledge to stand on or a parachute you didn’t know you were wearing suddenly opens. Or you might find that your friends had spread out some crash mats so that it doesn’t hurt when you land.

Let’s be honest, life can be complete shit. It rewards the undeserving and holds good people down. But if you take a chance on getting something right, at least you’ve got a tiny shot at making it better. So, ask for that pay rise you’ve been mulling over that you know you deserve. Say ‘I love you’ even if you’re not sure it’ll be said back. Start that taboo debate you know people will disagree with but you really think needs an airing. Submit your work to that competition. Talk to the girl who smiles at you on the bus stop every day. Press the button on that overseas working visa application. Say yes when someone asks if you need help, even though it’s scary. Start the small business that keeps calling you. Accept the compliment when someone tells you that you’re gorgeous. Maybe they’re not trying to make you feel better. Maybe they just really really fancy you. Jump! It might go terribly wrong, but it might be amazing. By not doing it at all it’ll definitely be rubbish.

I’ll try to remind myself of all this the next time I’m questioning myself, letting my broken self-esteem beat me down or I’m absolutely convinced I can’t do something. Because in reality none of that bad stuff is ever more than a heartbeat away. I’ve already decided that you’ll all hate this post and I’ll look like an idiot. That’s probably true, but I’m hitting publish anyway.

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

Level-Up: Part 46

This past weekend I took another step forward in trying to expand my world while living with my vestibular disorder. As it involved a little (big) train journey, I’ve made a video about it. And don’t worry, there’s no crying in this one. I waited until today specifically so there wouldn’t be any cringeworthy sobbing. Enjoy!

Every Sunday (I know it’s Monday) 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.

Level-Up: Part 45

As I’m sure we all have, I’ve been thinking a lot about Robin Williams this week. I can’t remember the last time someone in the public eye passed away and it induced such genuine, heartfelt grief around the globe. He made us all laugh. He made us feel things. And yet, he had a deep sadness of his own that eventually became too much to sit with. If you’re feeling up to it, this piece from Cracked.com on how comedians are sometimes the most sad people of all is difficult but powerful reading. It gives a little insight into why making us laugh might have meant so much to Robin.

I’m not going to try and tell the story of his death or speculate on what he was thinking at the time, because I just don’t know. I’ve never been there. I’ve never reached a point where I genuinely believed the world was better off without me or that the only way out of my pain was to end my life. People close to me have and they’ve very bravely told me their stories. Some of those people still fight a daily battle with depression so heavy it makes just getting out of bed in the morning the biggest of achievements. And I’m so incredibly proud of them for taking on that challenge when all they want to do is pull their duvets over their heads and hope it all goes away. Even though they may not understand why, it means so much to me that they let me be there for them. That they talk to me about how they’re feeling. That they let me ‘build the nest’ with them. That they know I’m here whenever they need me. That they know they’re not alone.

depression_nest

If you know me personally or have followed this blog series you will understand how I’ve struggled emotionally throughout the course of this illness. I’ve had some incredibly low moments. I’ve cried. A lot. I’ve been angry. So so angry. I’ve had moments, even this week, where my self-esteem has plummeted dramatically. Even through all that, my GP and counsellors have agreed that I don’t have clinical depression. I’m just carrying a huge amount on my shoulders and needed to work out how to manage that without becoming overwhelmingly stressed. That’s not me putting myself on a pedestal. I’m not saying ‘Yay! Look at me! I won the mental illness lottery.’ It’s just luck and circumstance. Sometimes it’s just chemistry. Depression isn’t so discerning that it picks and chooses based on who you are or what you do. It can affect any of us. It impacts upon more of us than we care to admit. And it doesn’t just touch the person it’s happening to. It brushes over everyone who loves them too. It happened to one of the gentlest, kindest, funniest people we know.

The one part of Robin Williams’ tragic story I can relate to is the statement from his wife Susan that he was dealing with the early stages of Parkinson’s disease. My first thought was that maybe knowing the limits that might put upon his life were just too much given how much he had already struggled with depression and anxiety. Later press reports quoting friends who knew of his latest diagnosis suggested this was the case. He was, according to those sources, terrified that he’d no longer be able to work and couldn’t process the idea that his senses would be stripped away. The man who spoke so quickly he hardly stopped to take a breath and flung himself around in the pursuit of making us laugh may have had to face a moment where he wouldn’t be able to do that anymore. Making us happy made him happy and it was potentially being taken away.

Thankfully, I don’t have Parkinson’s disease, but as I’ve tried to explain my invisible physical illness to people I’ve sometimes described it as like having Parkinson’s on the inside. My brain perceives my body to be moving 24 hours a day, even when in fact I’m perfectly still. Unfortunately, because there is the perception of movement, my body tries reacting to it, so I can’t keep my body still or walk particularly well. Hence why it’s so exhausting. Where Parkinson’s is the body trying to control actual movement, mine is trying to control false messages from my brain telling me there’s movement.

As I’m sure Robin will have contemplated, chronic illness does put reigns on your life. It can stop you doing things you enjoy, being with people you love and take things away from you that you feel you need to be happy. Again, if you know me or if you’ve just dipped in and out of this blog series you’ll know how deeply I’ve struggled with the loss of independence and all the things I’ve had to give up throughout the course of this illness. It has been by far the most painful part of accepting the hand I’ve been dealt.

But there’s something I wish I could say to Robin and to anyone else now facing chronic illness, and that’s that it doesn’t have to be a life sentence. Chronic illness and disability doesn’t mean your life is over. It’s just an ongoing quest for adjustment and finding joy in different things. It would be the biggest lie of my life to say it’s easy. I struggle with it every day. But I’m still me, I just have to find new ways to be me. In a lot of ways, I know myself better as the result of this illness than I would have without it. But I admit that’s sometimes a big trade-off for what gets taken away.

I was thinking about all this yesterday morning. I had one of those foggy, dehydrated headaches. I hadn’t slept very well. My arms and legs were shaking because I was so wobbly and low on energy. But I also wanted to do something big. To be honest, this is how most days go – a negotiation between what I want to do and what my body can realistically handle, ending with some kind of compromise. But still, thinking about Robin Williams and wanting so much to show that you can still achieve things while living with chronic illness I got dressed and went out. I walked by myself to the train station and caught a train to Cardiff Central Station. I hadn’t done this by myself yet. Being a hub station it’s always incredibly busy. It was also Mardi Gras day and there was a Cardiff City football match a few stops down the line. The train ride was quite unpleasant too, given how unwell I was feeling.

I made it to the station and sat on two different benches, letting my balance settle before leaving.

CARDIFF CENTRAL STATION

I very slowly walked my way over to the Hayes area, where all the shops I needed were. I spent a couple of minutes chatting to the ladies in Jo Malone and then got most of what I needed from the John Lewis beauty hall before exiting to another bench. I must have sat on five or six benches while I was in town.

CARDIFF LIBRARY

The last one, which I sat on with my tea and cake deciding if I had the energy to catch the train home, had the pleasure of my bum being parked on it for some 45 minutes before I felt able to move off again. I got to the station, found my platform and let another train take me home. Just like the last time I caught the train home from the city centre, those final few streets from the station to my house felt almost impossible, but I made it home again.

TICKETS

I don’t always make the wisest choices when it comes to this illness. It certainly wouldn’t have been advisable to do what I did yesterday given how rough I was feeling. And it only really hit me later in the evening how big a deal it was that I’d been to Central Station and home again by myself. When I’m trying to do something I have to try and be cool and concentrate on walking without falling. It was only afterward that I realised what I’d done. But I needed to prove to myself as much as anyone yesterday that my life doesn’t have to be limited. I took a step forward in my own emotional struggle against being restricted. In the process and maybe if someone comes across this post while trawling the internet, I hope I’ve given someone else a little boost too.

Sweet dreams, Robin Williams. Thank you for everything you gave us, even when maybe you didn’t really feel like giving. And thank you for everything you’ve left with us. You touched more hearts than you could have ever possibly understood.

 Robin Williams

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

Level-Up: Part 44

This week I finished my second run of counselling. The last session ended on a high with a few final issues covered and her being incredibly pleased with how much I’d managed to do during the time I was under her wing, so to speak. It’s scary and hard work, but it’s definitely been worth it. She was particularly impressed with how I handled last Saturday’s outing, where I wasn’t sure how much I could realistically manage, but took my time and completed it all anyway. There is so much more I could say on the counselling and what it’s taught me, but I think I’ve said as much as I want to here. If anyone’s considering it for themselves and wants to discuss it privately, I’m happy to do so. Just send me a message in one of the usual places.

Here’s the present I bought myself for completing it, never cancelling an appointment and trying hard to get as much improvement as I could out of those couple of months.

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Because I’m a winner, see? So says the trophy, anyway.

On Thursday I went to the shops late in the day to grab a few things. It was one of those deceptively hot days where it doesn’t hit you how warm it is until you’ve been outside for a few minutes. I was struggling to walk a bit, but was determined to get to the deli. By the time I made it there I was barely able to stay upright. I started swaying, but managed to hold on long enough to buy the things I had in my hand before quickly getting myself to a bench. At that point I couldn’t really stand back up and I wondered if I’d have to call someone to take me home. I didn’t panic. I stayed there for about 15 minutes, drinking some of the fancy French lemonade I’d just bought for a sugar hit. I eventually felt able to move off again and slowly made my way home.

Last night I did something I haven’t done in absolutely ages. I went to the cinema to see Guardians of the Galaxy, in 2D not 3D. 3D would have me rocking back and forth in the corner, I’m sure. I’ve been to the cinema since I’ve been unwell, but only once and it was a fairly gentle film. There was nothing too fast for my eyes and brain to compute, but I did feel wobbly after it was over. I’ve been to the theatre once or twice, a big wrestling show and I’ve been to one major arena concert.This time I knew there was going to be a lot of action to contend with and a real assault on the senses.

There were several times during two areas in particular where I had to either look down, close my eyes or put my hand over my eyes to block how much the screen was flashing. The people around me must have thought I was crazy. It’s not just when the action is super fast either. Sometimes it’s just the camera pulling back at a certain angle or a swoop to a different part of the screen that makes me extra dizzy or spinny. Sometimes it’ll be the surround sound that does it; a sudden disorientating switch from one side of the room to the other. The seats in this particular cinema rock. So if I happened to rock myself forward just as something swept across the screen…WHOA!

None of this ruined the film for me, though. I absolutely adored it and would happily go and see it over and over again. I may already have scoped out the DVD pre-order situation. I didn’t have to leave at any point to take a break, although if it had been longer than the two hours it was, I may have needed a couple of minutes outside just to give my eyes and brain a short rest. I was starting to get uncomfortable for the last 15 minutes or so. I began today with a very sore neck, which crept up into my face and now feels like a big headache. That often happens when I’ve had to work hard on concentrating to keep my head and body still for a period of time. I would love not to have the pulsating pain in my cheekbone right now, but I just accept it as the pay-off for doing something cool.

I love the cinema. I never understand when people say, “Why would I pay £8 to sit in a room to watch a film with a load of strangers when I can watch it from the comfort of my sofa?” Don’t get me wrong, I love snuggling up in my pyjamas and watching a film with a cup of tea too. In fact, for several years that’s all I’ve had. I’ve enjoyed the ritual of it all the more for that reason. But there’s nothing quite like going to the cinema, is there? I love the popcorn smell as you walk through the heavy glass doors, the garish neon lighting, the enormous drinks you never finish, the thick psychedelic carpets, the slightly bored ticket collectors. Some people hate all that stuff, but not me.

The giddy excitement you feel when the lights go down. That little pause between the announcement that your feature presentation is about to start and it actually starting makes my heart skip just thinking about it. The simplest things bring me joy. Even though I’ve sometimes tried to convince myself that I don’t love it for the sake of sanity, I’m always quietly aware of what I’m missing. So to have done something that gives me so much happiness yesterday gave me an enormous sense of satisfaction.

I spend a lot of time having to weigh up whether I have the energy and the stamina to do things and it gets incredibly tedious. Am I steady enough on my feet to complete this task or go to this event? How realistic are the chances that I’ll fall out my seat or throw up? Can it wait until tomorrow? How will I feel afterward? Will there be something more important to do tomorrow that needs my energy more than this? Is the enjoyment going to be worth how rough I’ll feel when it’s done? I hate having to ask those questions of everything I do, but I’ve reached a point now where being kept away from the things that make me really happy isn’t acceptable anymore. If I have to sacrifice a few days to pain and having to stay sat down to do fun things, I suppose that’s what I’ll do. All while trying not to burn myself out in the process. Yikes! Who wants popcorn?

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

Level Up: Part 43

I began this week feeling sorry for myself. There is no other way to describe it. I had a cold, I was grumpy and I was starting to fall into that feeling that the world was running away without me. I was just stuck in a broken body and everyone else was having a marvellous time. At least, that’s how it feels when you get into that funk. Boo-hoo! Poor me! And so on.

I hate that trap, because I used to get caught in it all the time. Not so much anymore. Like so many of the improvements I’ve made this year, when blasts from the past try to muscle their way in again and I don’t manage to chokeslam them down swiftly, they’re even tougher because I’ve forgotten how damaging they used to be when I was entrenched in them every day. Sometimes I get bored of myself and start to feel as though all I am is a disability inhabiting a body. I inevitably start thinking that if I’m this tired of myself, everyone else must feel that way about me too. And that’s just one of the ways chronic illness can take a juicy stab at your self-esteem.

Thankfully, I managed to remind myself how far I’ve come just in the last year alone. Not even counting the three and a half frightening and confusing years that came before the time I started making the double effort to manage the illness better. So who knows how much more I’ll be able to do a year from now? Putting it into a ‘long game’ perspective made a difference. It doesn’t make the restrictions I have now any less frustrating or lonely, but looking back there is real proof that with time I can have more freedom than I have now. Telling myself that there are lots of people who have to pass on things for financial reasons or family commitments made it easier too. It tempers the envy.

Thursday I was so dizzy and wobbly I only managed to keep my evening meal in my stomach. It was one of those days where my body dictated what I did. And bloody hell did it dictate. It eased off by Friday but a day where it felt like I’d been shaken by the shoulders for 24 hours left me pretty wiped out. I did go out for a couple of things on Friday but the pavement felt like it was made of trampoline elastic, so walking wasn’t the most fun. Yesterday, I felt like I needed something to be proud of, so I made something happen to end the week on a better note.

I wanted to go into the city centre, shop in Boots (the actual store where my illness first started), slowly make my way down the street, grab a coffee and then come home on the train. This was a tall order to say the least. I was still lacking energy after Thursday’s puke-fest, it was raining heavily and the whole thing seemed out of reach. But after a little chat I realised I could break it down into pieces. Any one of them alone would be a big achievement by themselves, with any combination of two or more a nice bonus. I kept referring to them as small achievements. But I was reminded that they’re actually a big deal. I have an illness where the symptoms fluctuate day by day. Just because I managed something one day, it doesn’t mean I can do it the next. Repetition is, in fact, more impressive than doing something once and crossing it off the list as no longer important. I decided to give it a try.

I got my taxi to drop me as close as it could to the street entrance of Boots, I walked across, went in, grabbed a basket and made my way to the very spot the first big dizzy spell happened. The one that changed my life forever. I’ve been there before, but always with someone else. Never alone. I wanted to stand there by myself and say, “I can do this now. You won’t go away, but you won’t control what I do either.” Here it is. That’s the spot.

that spot - selfie

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From there I tried to do some shopping, which was pretty tricky. It was extremely busy, the lighting was making me woozy and there was so much to look at I got disorientated by the visual stimulation. I sat on make up counter stools a few times. Once I felt able to stand again I went and had a chat with one of the ladies at a make up counter I was buying something from. After a while the floor was starting to feel very uneven, so I asked her to put my shopping through the till so I could head off. I tried exiting via the indoor shopping centre, but as soon as I stepped out into the sea of Saturday shoppers someone bumped me out of their way. I decided heading back through the shop and toward the street was the better option.

I rested some more on the seats near the pharmacy counter before heading out again, then slowly made my way down the street, looking in shop windows and wondering all the way if I had the energy to shop in any of them while they were heaving with folk avoiding the rain. I eventually stopped at WHSmith. I used to go in there a few times a week to plunder their overseas magazine section. For the sake of nostalgia I popped in and grabbed a copy of American Glamour. It was just by the door near the express lane, so I knew I wouldn’t get caught out standing in any long queues. Buying it brought on a strange but lovely feeling of déjà vu.

I was starting to feel very weary at this point. I hadn’t started with much energy and it had depleted quickly. I threw myself into the Starbucks close to the train station to have a break and decide whether I had the stamina to get the train home and then walk from the station to my house.

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I stayed in there quite a while trying to decide. My arms, hands and legs were badly shaking, not in a nervous way, but when I’ve been that dizzy my body goes into a mild form of shock because I’ve repeatedly felt like I’m falling to the ground. Eventually I decided to go for it. I bought a ticket, sat waiting for 10 minutes or so, then had the train take me home.

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That final walk from the station to home was one of the more difficult walks I’ve had in some time. I didn’t have much juice left, so I just took very tiny steps all the way home. At which point I sat down and avoided standing up for the rest of the day. I did everything on the list. Considering how rough I’m feeling today, it maybe wasn’t wise to do it all when I was starting from such a low energy point, but I did it all the same. And as I was reminded yesterday, I couldn’t have done any of those things in the past. To have done them all is something to be very proud of, and I am.

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