Yes I feel unwell a lot, but you can keep your ‘sick note’ comments to yourself thanks


When I was much younger, I didn’t mind being ill. It was never ideal, but the odd cold and a smattering of bladder infections didn’t seem so bad. I got attention, maybe got to stay home from school and lay on the sofa with a duvet, watch TV I never usually saw- hardly the dream but still not that bad. 

Fast forward 15 years and all I want is to not be ill, it’s the top of my wish list above everything else, but sometimes it feels like ill is all I am. I blame a big part of that feeling on other people. Don’t get me wrong, I’m okay and I go to work all week long and lead a normal life, but in the background there’s always a symptom. Something always hurts. There’s always something I’m worried about or feel like I need to get checked. I hate it, I try my hardest to overcome it and work on being well and making my body stronger, so there’s nothing worse than someone coming along and announcing “Oh you’re always so ill, you sick note!” Thanks so much for your wisdom pal, please go away indefinitely. 

The older I get, the more I cannot stand to be asked how I manage to be sick so often. The more I find it jaw-clenchingly frustrating to hear people suggest I should try harder to not be unwell, or ask how it’s possible I’m not feeling good again. 

Being chronically ill is hard enough without trying to make others understand. If you know someone who’s fighting a long-term condition, chances are the last thing they need is reminding about it, or to have people asking how it can be that they’re spending another day missing out. 

I choose not to tell people, even close friends, about a lot of my symptoms or consequences of having Ehlers Danlos. On the whole it doesn’t stop me having a life. I have a job, I socialise, I travel a bit and I exercise when I can. It’s the days I  have to limp, the evenings I spend aching all over, the hours I lose at night to worrying about why I’m bleeding into my skin on my legs that have an impact. When my physical symptoms were worse a few years ago I did miss out more and it drove me round the bend to be told I should eat more fruit, try getting early nights more often or the very worst: “You could just come for a bit, you might enjoy it.” YES THANKS I WOULD LOVE NOTHING MORE THAN TO ENJOY MYSELF BUT MY WHOLE BODY HURTS AND MOVING IS HARD. 

I know I’m ill, I know I might seem lazy sometimes at weekends, or be against going out, but it’s because I’m sick and the absolute last thing I want to hear is a dig, a comment or even a throwaway remark about it. I would trade many things to be normal and have good health and be living in the average body of a 26 year old, as would so many others. 

It’s really difficult to explain chronic or invisible illnesses to people. It’s hard to understand them too, so I get why people see it as a flippant thing, but it’s frustrating and grinds you down, which is the opposite of the support that’s needed. Be kind to that ‘sick note’ you know, because believe me they would much rather be out living life than stuck inside the limits of feeling unwell. 

Fitness overhaul: A year of focusing on health

IMG_9105

This time last year I was fresh from doing the Body Coach Shift, Shape and Sustain plan. I was, as he says you should be after following the diet and workouts, lean. In fact, I was probably too lean, and looked the thinnest I had been in a long time. My body struggles to build muscle due to a connective tissue disorder, so it would have taken a lot longer for me to start feeling like a Bay Watch extra. I also admit to getting tired of 6am gym sessions.

They DO make you feel good, they are a good start to the day, they do set you up well and improve concentration, but I just love sleep and I love to snooze and I like my groggy morning routine. The only morning exercise I do now are Sunday runs, and they rarely begin before 9:30. I don’t look the same as I did a year ago, but I can’t say I’m not fussed by it. This whole year of overhauling my health and fitness was about more than a flat stomach and strong looking thighs.

I wanted to turn my health around. Of all the goals you can have, I felt like this was a good one. I’ve been documenting it all on here along the way and looking back it’s been quite an achievement. I wanted to get on top of my Ehlers Danlos symptoms, I wanted to maintain my new found fitness, try out different kinds of exercise and feel generally better about my myself. It’s December this week, so the year is almost up (bye 2016 please don’t come again) and it feels like a good time to, shall we say, take stock.

Needless to say, some of my endeavours have failed. I won’t be ending the year by drinking a kale smoothie and examining my abs in front of the mirror come NYE. I might not be a fitness model, but I’ve been so much healthier this year. I’ve had less colds, I’ve had less bad pain days with sore joints, I’ve not had any issues with asthma, I’ve not spent weeks with a lingering cough and I’ve not been hammering down the door of my GP every other week. I’ve made some positive changes, some unsuccessful changes and some unexpected changes.

I gave up coffee for a while, but now I’m back on it. I’m drinking it now in fact, enjoying every last drop of it’s frothy goodness. I can’t give up caffeine, it didn’t work for me, and I don’t think I drink enough for it to be a problem these days. BUT I have succeeded in massively cutting down my sweet intake (apart from one mishap last week where I ate a whole bag of Haribo starmix after a really stressful few days) and that’s got to be a good thing. I’ve never been a chocolate person. I’m a very serious sweet eater. Pick and mix, Haribo, fizzy laces- if it’s sour and coated in sugar, I’m on board with it, but this year my teeth have had a welcome break.

In the summer I ran my first 10k, which for some may sound like a walk in the park, but for me it’s a big deal. I didn’t think I’d ever be able to run due to hip problems, but I built up some strength, worked hard on the weekends and made it all the way round the central London course as part of the Vitality London 10K. I’ve also spent the year experimenting with different gym classes- some definitely NOT for me because I cannot deal with being shouted at while I try to hoist a bar weight above my head in a squat position, and some which I’ve loved. Spinning, circuit training and step aerobics have been the winners. I do have to alter some of the stuff to suit my joints, but I’ve learnt to not be shy in the gym when in the gym.

I’ve changed up my diet, replacing even more meat with pulses and veg-based meals and I eat fruit every single day. I’ve started having a proper breakfast at work, usually just porridge, and I’ve tried (though not always succeeded at) not eating rubbish while my dinner cooks because I’m hungry and impatient. I’ve also upped my intake of all the green stuff we get told is so good for us, and I can how say that I genuinely like broccoli. Last year I merely tolerated it, crazy times.

The best thing for me though, has been the absence of illness. Anyone who knows me well knows how much I battle bad health. I have bad joints, limp a lot, get inured easily, get a lot of colds, have issues with my kidneys and I am the UTI queen (not something I want to be queen of even remotely), so this year, with less illness, less antibiotics, better health and happier insides has been so welcome.

The one thing I need to work on for next year is getting my stress levels sorted. I wrote about this last week and got quite a few tweets from people who suffer the same. If I can keep up this years health journey, or even improve on it, and make myself less stressed, I think I might actually have made it. Maybe I’ll even buy a juicer and go on a detox. (Just kidding- NEVER.)

 

Trying to find comfort when illness is beating you

img_1493

This time three years ago I was going through a truly terrible time with my health. I was ill, I was in pain, I was in and out of hospital and GP appointments, having blood taken every week, struggling to go to work and feeling completely defeated by a body I felt trapped in. This wasn’t the first time I wanted to unzip myself, chuck my body away and start again. It was just the latest bad spell, but also the worst I’ve ever had.

Dealing with long term, chronic illness can be really awful at times. It can be scary, lonely, confusing, frustrating and incredibly upsetting. That feeling of wanting to bang your head against a brick wall repeatedly is common, as is the feeling that nothing will make the situation better. Nothing. Doesn’t matter how many of your favourite things you try and cram into one day, while snuggled up in bed with supportive people and all of the carbs, nothing will help you feel like you again. This was pretty much my default feeling for six months.

Needless to say, it was bad times.

I haven’t sunk that far into a health black hole since then. I’ve managed to keep myself teetering on the edge during the worst days, but mostly I’ve been clear of feeling that only bad things can happen when it comes to wellness and my body, which is promising. It’s definitely a feeling I aim to keep up well into 2017 and beyond. The struggle still exists, like right now for example, I am at work in a lot of pain just because I went ice skating yesterday- ‘fun things can’t happen to me because I pay for them in pain.’ This is not how I want to be feeling. I need to remember there was always a small chance it wouldn’t agree with me. That doesn’t make it any easier though.

It is incredibly draining to be battling a health problem and feel like there’s no one around you that understands or who can really help or make a difference. Be it mental health or a chronic pain condition, the stress is the same. I’ve talked to many people who suffer with conditions similar to mine through taking part in online chats, networking on Twitter and reading blogs on the subject, and though I would never pretend to understand how one person feels, I know that there’s a level on which we can all relate. There are problems that crop up and again and again such as:

-Trying to explain to friends/families/colleagues why you are feeling ill but knowing they won’t be able to truly understand.

-Struggling to deal with the explanations people want when you can’t follow through with a plan, can’t attend an event, or just need to stay home because you’re having a flare.

-Dealing with how unfair it feels that people around you have good health when you are constantly dealing with symptom after symptom.

-Trying to not let health win- basically trying to make sure you can still lead a happy life and try to come out on top, even on the bad days.

-Accepting that sometimes the bad days will end bad and you can’t make them better.

-Getting setbacks when you’ve been feeling well for a while, or trying hard to make improvements to your health.

These are just a few of things I know I feel when it comes to my chronic condition, and I’ve discussed all of these with various people who struggle with health problems. From IBS to endometriosis, bad period pains every month, arthritis and even skin cancer- the diagnosis might be different, but it’s helped me a lot to remember that I’m not the only one. The universe hasn’t singled me out to suffer while everyone else has a party and a jolly good time of it. It takes a long time to take comfort in the fact that you aren’t alone in feeling ALL of the emotions and confusion, but it can help, even if just a little.

Fitness overhaul- falling into a black hole of laziness & the rest of 2016

IMG_9993
The past year has been a whirlwind. It’s felt like the quickest year of my life so far, which is partly down to lots of change and scarily, probably just an indication of how life will be from now on. I realise that it’s not over yet either, so there’s room for more to happen, which is good because I can’t decide if it’s been a successful year for my health. I wanted 2016 to be a fitness overhaul, a year where I did everything in my power to turn my bad health around, but also to just feel better.

On top of alleviating symptoms of hypermobility and EDS, I wanted to stop feeling sluggish and tired, improve my posture, get stronger, feel fitter, change my eating habits and improve what I drink on a daily basis. I don’t mean alcohol by the way- I’m not at my desk sipping gin and juice daily, I’m talking cutting back on caffeine, drinking less Diet Coke etc.

I feel like I have made a lot of progress on the fitness front, some on the food and drinks front, but not as much as I want on sleep and I’ve gone backwards on posture. I feel very much in need of a massage 99% of the time at the moment.

It’s really hard to actually take out time to deal with health when life is already so busy. Work takes up most of my time, which is hardly uncommon, and at the weekends I often find myself backed up with plans (and an overflowing washing basket) and generally bad at time management, meaning I still don’t get round to working out what appointments I need and so on. 

But having conditions to manage is just half of it. Even if I didn’t have EDS I still think I’d have the same internal battle over finding the will to to do what I so badly want with my fitness. I’m a soft touch. 

I also know how to talk myself out of doing pretty much anything. There are times when I am trying to talk myself out of running while I am already out running. I get past the hurdle of actually getting out there and I still try and stop. I’m already 1k down yet in my head I’m like “okay if you just run for another five minutes it’s okay to stop and go home because look at that cloud.” I should probably add ‘stop demotivating yourself ALL THE TIME’ to my list of things to work on.

My actual fitness levels have peaked this year thanks to having my first 10k to train for this summer, a new gym with really good classes and motivation from people around me. I have had a couple of setbacks though, and it’s been so hard to come back from them. It’s like getting out of bed when it’s freezing outside and pouring down and the duvet is the most comfortable, warmest thing you’ve ever touched. You know you need to just do it and stop hitting snooze, but it’s bloody hard. Comfortable is good. Comfortable is preferable. But comfortable seems to quickly become lying in bed fully dressed with a packet of biscuits every day after work.

I finally started exercising again and went for a few runs after a hip injury made me unable for a month, but it took so long to get to the point where I even put my running clothes on. I just stared at them in their drawer and tried to ignore them for a couple of weeks, like someone else owned them. I basically death stared them, because how dare you remind me of how much I’m failing at my 2016 fitness goal, blue lycra leggings. Getting dressed really can be half the battle. When I don’t win the battle, and the laziness wins, all the bad habits, like eating bad, getting the lift instead of the stairs, staying up late and guzzling sugary, overpriced coffee all creep back in.

I feel more like I want to eat better when I’m active. I feel more like I want to get an early night when I’m active. I feel more like I want to stretch and do my physio exercises and guzzle water and eat broccoli when I’m active. I just feel more like a successful human when I’m active, which is hard when health problems mean you just can’t be that person some days, but it is what it is. On the whole, I know what’s better for me, I just need to be better at keeping those things up.

When I stop exercising, or my health stops me exercising, I fall into some kind of black hole where I struggle to do anything that’s good for me. It spirals and it usually takes a moment of sudden extreme frustration at myself to get back out there, which results in an aggressive run where I realise how lazy I’ve been and how good it feels to be moving again, and the good habits all resurface.

This is pretty much the story of my whole adult life when it comes to health and fitness. The battle this year has really been spending more time out of the black hole than in it, because that’s always where I lose. I think I’ve managed that. I think out of the ten and a half months so far, I’ve been on the outside, feeling smug in my trainers and eating courgetti or something else equally annoying. For the rest of 2016, I need stay out of the black hole. I need to not let blue lycra leggings taunt me.

 

Waking up to health being your biggest fear and priority

IMG_9793

If someone asked me to write a list of my top life priorities five years ago, my answers would have been so predictable. I had just finished uni, I was doing that thing where you start to question what life is about because you can’t be a student anymore, and I was desperate to keep up. Whatever everyone else was doing and making seem like the right thing- I wanted that. I wanted to get a good job, earn enough money to save each month, move in with my boyfriend as soon as possible, travel as much as I could and cling on to my uni friends. That was the top tier of wants. It was like a sudden rush of ‘must do this to be happy’ and that was all my brain focused on.

These things did quite quickly change, once I got used to the shock of no longer having ‘I am a student’ as an excuse for, well, everything. One thing I had never really thought on or troubled myself much over was health. I was okay. Probably considered a bit of a ‘sick note’ by some people due to my ability to catch any cold going round and take it to next level with a kick ass chest infection and some asthma sprinkled on top. Apart from that though I was mostly fine. I didn’t have any real health worries.

Fast forward five years and my priorities are now entirely different. This is not unexpected of course, five years is half a decade. It’s a long enough time to feel a shift in your life course, and mine has been shifted, in fact flipped entirely, by health. Not just my health, which has taken me down a very confusing and sore path the last few years, but the people I love too. I lost a grandparent, dealt with a parent getting a cancer diagnosis and not long after that, my best friend got cancer too. A parent and someone my own age who I had shared everything with for almost my entire life, had to fight cancer, and it was suddenly all about health.

When I first started feeling ill aged almost 22, I did everything I could to ignore it. I tried to sleep more, eat a bit better, take vitamins, self-diagnose with all sorts of stuff that would fix itself- but to no avail. I had no idea growing up that the aches, pains and strange symptoms I felt and had grown used to were linked to a rare disease, or how much it would alter my life from the day I woke up with a sore right shoulder. I thought everyone had the same grumbles as me, the same sharp pains in hands and feet, strange cramps in my hips and feet- I just thought it was part and parcel of growing up, so I never made a huge fuss.

You don’t plan for health, not really, but we all have it, be it good or bad, losing or winning.

After the shock of my mum and oldest friend having cancer, all I wanted was to be healthy. My priorities changed from wanting to do things, achieve things and own things, to just be alright. I wanted to make myself and everyone I loved better- better from cancer, better from any little ailment they might be suffering. We just had to be healthier and that was all that mattered.

That thing where you toast with a drink and someone says ‘your good health’- that suddenly made sense. Yes please, my good health and everyone else’s.

It seems a very adult and wise thing to wish for some reason, even though it shouldn’t and even though I’m hardly a serious youngster these days at the ripe old age of 26. Health just became my number one priority over night. It topped and still tops all the lists and I can’t see it shifting.

Fitness and body image: goals for the rest of 2016 and giving up on unrealistic aims

IMG_9105

In my mind, I was going to come back from a two week holiday, have the August bank holiday weekend and then get straight back into my exercise and running routine. My hip injury healed, I got new running trainers, I was rested- it all made sense.

 What actually happened was M&S flapjacks, carbs, big homemade meals and wine and lots of staring at a screen while I caught up with work. Me and my pyjamas have really clocked up some quality time together. I also put on a pair of skinny jeans and nearly burst, which was a nice reminder of all the halloumi I ate in Cyprus.
Now I’ve been back a week though, I’m running out of excuses. I need to get back in the fitness game before I lose everything I built up. I am really motivated to do it, so I’m hoping it won’t be too hard to actually get out there and start moving. Baby steps.

I can’t believe it’s September. I’ve spent most of this year saving to move and looking forward to New York, and now that’s even two whole months in the past. My health has been really up and down lately, but I feel better on the whole so I want to make the most of the rest of the year. 2016 has turned into the year of a health transformation for me, so now I just need to make it to the end without mince pies and gingerbread defeating me. I work better when I have solid aims, but I can’t be bothered to make them farfetched and extreme, like get ripped abs by December or sign up to a marathon and run every morning or something. Never gonna happen. I want to look a certain way, but after so long of never making it happen, it’s time to readjust. It’s not happiness to constantly be feeling like you haven’t made it. Over and over again. 

Simple is better for now. Simple and realistic.

So, goals:

1) Start running 5k twice a week again. I was doing a lot more back in July but two injuries and almost a month out mean it’s back to warming up. Here’s hoping hypermobility doesn’t rear it’s ugly head again for a while. I like hips better in their sockets.

2) Keep up with physio stretches, rather than do them once, forget them, wake up in pain, repeat. It’s amazing how even though I know it does my damaged shoulders so much good, I continue to be appalling at doing them.

3) Try flotation. A friend of mine did this in Vauxhall and said it was incredibly relaxing. Essentially, you shower, then you go into a sort of giant bath in a pod and float in salty water so you feel weightless. They play music for the first part, then it drifts away and you float in silence (I love silence, so I am so up for this). The music comes back five minutes before the end of your hour session to let you know time is nearly up. I’m excited for this.

4) Perfect a foam rolling routine. If you exercise and you’ve never foam rolled, you need to get involved. It’s a way of loosening and strengthening muscles but can also be a standalone workout. It’s particularly good to make your legs feel more human and less deadweight after a heavy workout or long run. It’s painful, there’s no getting around it, but it’s definitely worthwhile trying. It’s supposedly very good for your abs too. I got my roller on Amazon for four little pounds.

5) Sign up to another 10k. Always a bit of risk for me given my unpredictable hips, but the last one felt so good. I felt like I had really achieved something solid because I had a medal and a time, which is stupid, because even the first time I ran 2k was an achievement, but it just felt so satisfying and will undoubtedly help motivate me to exercise more.

6) Get kitted up for outdoor winter exercise. The thought of running in the cold holds zero appeal to me. None. Zilch. Nada. But I have to try. If anyone has some recommendations on good winter kit, let me know, because outside of gloves and a hat, I have no idea.

7) Start making at least three dinners a week from scratch. I’m not bad at this as I love cooking but it’s not easy to be motivated after a days work to slave away in the kitchen chopping and mixing, but it’s worth it. Sauces, curries, stir fry, anything, it always tastes better when you make food from scratch. And you know, it’s healthy. Meat free Mondays was always something I tried to do before I moved out of my flat, so I want to get back into that routine.

The progress I made before my holiday was the biggest step I’ve ever taken fitness wise, with running weekly, doing a 10k, changing my diet up and gaining actual, visible muscle. It was even bigger progress considering the setbacks from Ehlers Danlos Syndrome. One last push through the last quarter of the year and I can definitely put a success tick next to my goal to transform my fitness this year.

Must. Stay. Away. From. Haribo.

 

Fitness overhaul- recharging batteries and some vitamin sea

  
After running a 10k, starting to survive circuit classes every week without almost falling over the next day and managing to do box squats, I hurt my hip. It was a pretty bad level of hurt too. It almost came out of its socket (as gross as that sounds it’s not that bad when you’re hypermobile like me) and I had to develop a new walk where I looked a bit like I was trying to be Snoop Dogg. Or Lion. Or whatever. 

I had to take two more weeks out of exercise after another previous injury (some sort of sharp leg pain every time I moved, good fun all round) so I became disillusioned again and started feeling like my bad health would win this battle.

My bad bad mood and defeatist attitude was made a little better by the osteopath I went to see for my sore lower back (a result of my new gangster walk to compensate for the hip business) who told me I looked muscular. She also told me my upper body was wonky but you can’t win them all. She told me to wait until I got back from my two week holiday before fully getting back on the wagon. A whole month out of running, classes and any form of progress after reaching my best level of fitness. Big thumbs down.

It made me dread the actual holiday because I was looking forward to feeling and looking better than ever while I pranced around beaches in bikinis, and the whole thing suddenly felt pointless (hello hormones and crying at dogs on TV). That’s a bad way to look at things, I’m aware that my bikini body isn’t the real reason for all this, but it still made me feel like I had wasted my time. 

I snapped out of that in time to go away, just about and remembered this was about the bigger picture and being well again. 

It turns out though that my constant low mood and iritability and general lack of good spirit was a lot down to being desperate for a break. Before this holiday I had reached the most tired I’ve been since I started full time work 4 years ago. I felt like every morning was climbing a mountain. I stated going to bed at 9:30 and still feeling awful the next morning. I also had some really sexy blue/purple bags hanging out under my eyes. 

I’ve definitely put weight on in the past month, I’ve definitely lost some fitness level and my toned stomach is looking less each day, but I feel a million times better. There’s nothing like beaches, sunshine, a serious vitamin D boost and some time out to watch the sea roll in at you. I haven’t been on a holiday like this in a long time but 10 days in and I’ve reflected on being a bad mood for about, erm, three months. Sorry boyfriend. 

The last seven months have been quite strange. Overhauling my entire fitness regime (which before was basically taking the stairs instead of the lift) has been more mental and a test of willpower than physical. I never realised the amount of willpower that would be required to keep up the routine- I just thought it would become habit and I would be fit enough to handle it without barely breaking a sweat after a few months. I was very wrong. My health isn’t ever going to give me an easy ride but set backs won’t win. I’m ready to get back to my routine, and probably weeping after my first circuit class in 5 weeks. 

Fitness overhaul- How much do you really want to change?

IMG_9344-0 

 Two weeks ago I was more determined than ever that my latest attempt at overhauling my health and fitness was going to last. This is the longest I’ve ever stuck to a serious exercise regime. It’s the fittest I’ve ever felt. It’s also the longest my various health problems have gone into some sort of remission,  which has let me get to this point. 

It’s just amazing how quickly it can feel like it’s slipping away. I see so many public announcements of lifestyle changes. Declarations on Facebook, Twitter, Instagram and in blogs from people who swear that this time, it’s going to last. They’re going to succeed. This time it’s for real and by posting it online it makes it official. Often though it doesn’t last, the attemp fails and the cycle is repeated few months later. I’ve been that person so many times. 

For the past couple of weeks I haven’t been able to stick to my preferred exercise/diet regime because I hurt my hip and I’ve been much busier than usual. I’ve still been able to fit some quick exercise in but it’s not been at the pace of the past five months. It’s made me so behind, so fast. 

It’s only two weeks. Two weeks doesn’t sound that long when you’re looking at the bigger picture, but this is where I fail. In fact, this is where we fail. We fall down because it’s hard to bounce back when you have a little break right?Motivation starts to wane and all the inspiration you felt just days before isn’t there anymore. It’s amazing (and bloody annoying) how quick and easy it is to slip into old habits.

The last two weeks have brought it home to me how much you need to want to change. You can’t want it a little bit. You can’t want it in waves. You have to want it to the point where there’s no alternative. I thought I’d always wanted it enough but clearly I haven’t, because I’ve never succeeded long term and now that bugs the life out of me. Why can’t I just do it? 

This irritation at myself has been stronger than ever and it’s driven me to this current attemp at reaching my goals.

I want to be physically fit- like really fit. I want it for the good of my weak body, my joints that struggle badly for my age and I want it to feel and look good. There’s no point denying the body image part- I want a flat muscly stomach, toned legs and arms and I want to feel really well and strong. I’ve wanted all of this for a long time but all the years of yearning and faddy attempts haven’t amounted to a real changes until now. 

I haven’t totally turned my life around and I’m vets inky not sporting a six pack, but I’ve never lasted this long or made this much progress- hence the frustration at feeling like I’ve taken a step back. 

I’m not going to let the past two weeks lead me down the road to failure. I refuse to lose the progress running my first 10k has made. I can’t deal with starting again, after more than five months of trying so hard, sweating so much, sacrificing so much time and overcoming many mental blocks and health barriers. 

I want this change to last. I want it to stay and to improve my life and give me the satisfaction that I’ve finally done it. It’s just taken so long to realise how much you’ve really got to want a lifestyle change to make it come about. 

Any inspiration to get me through the rest of this wobble and to keep me motivated is welcome. As are puppies, if you can arrange it. 

Twitter health communities- the negatives and making them better

home-office-336378_1280

Twitter is my one of my favourite and at times least favourite things. I look at it more than most people because I use it for work and throughout the day for my own personal benefit too. I use it for news, for laughs, for reading material, for travel and fashion inspiration and also for support or information about health issues.

A lot of the accounts I follow are owned by people who have similar health struggles to me, or accounts that support people like us. In the past few weeks I’ve seen lots of stuff about abled and disabled people, the difference between those who live with chronic illness and those who don’t and tweets about the ignorance towards mental health. I usually like seeing conversations online about this, because people with struggles such as these get to have a voice and can talk to others they would never get support from in person, because they would never have known they existed. I like seeing positive engagement and I like it that Twitter is such a good platform for allowing communities to join together and have a voice. But it’s really not been all good lately.

This is probably nothing new. I don’t have the time or the social media energy to keep up with everything on my timeline and through personal choice I don’t often join in on health debates because a recent good run in health for me has given me respite from constantly worrying and thinking about symptoms and doctors. For me, the problem with making a voice for those who have invisible conditions like I do is that it’s so hard to get people to remember, accept, believe or sympathise with something they can’t see. People need to see medication, or see that you’re bed-bound or stuck at home to accept you’re unwell.

Illness comes in many different forms- both mental and physical. Just because someone gets up and goes to work day in and day out, doesn’t mean they can’t possibly be unwell. Just because someone socialises, goes on holiday, has a social media presence and gets stuff done, doesn’t mean they aren’t unwell. I sometimes think it would be easier if I was visibly seen to be popping pills, as it’s something that people relate to illness, but I don’t need to. Of course you can’t expect everyone to understand your health issues- mine are so complicated highly qualified doctors struggle to understand them, but it’s not about accepting the medical science, it’s just about remembering that there can be stuff happening below the surface of normal looking facade.

It’s one of the biggest issues facing people who suffer with chronic conditions that leave no mark or show no obvious signs- people don’t buy it, and I see  frustration anger, and even arguments happening on Twitter  because of this . Why should someone who battles with illness have to justify the need to take a step back, miss an event or defend the fact they’re out and about getting on with life? “But you don’t look sick…” is a common theme. Newsflash- people with long term health problems can wear make up and nice clothes and hang out on beaches in bikinis. They can have lives. It’s really bloody hard to battle chronic illness. Really, really hard.

I’ve stopped expecting people to remember I’m not the same as everyone else. I don’t get angry about it, I just get tired of it mostly, because I don’t like to bring up my health issues or show signs of weakness, which isn’t how it should be. I go to work, go on holiday, go to the gym and keep up with my social life, but at a cost. I spend plenty of time nursing pain, limping, attending doctor appointments and blood tests, peeing into test tubes and having body parts scanned- mostly in the evenings, at weekends or at the crack of dawn, because I’m lucky. Not everyone has the luxury of getting appointments like these. Maybe if I advertised that a bit more, people might remember, or even ask how I am.

I’ll still always credit Twitter with being the biggest help in getting to the bottom of my health issues, and eventually getting the right care, but there’s definitely work to be done in making it a better place for these communities.

What I’ve gained from running in 2016

5 things I’ve gained from running so far (I started about 6 months ago)

1- It’s a really good way to channel my general day-to-day anger. I get annoyed by commuting and continually let down by trains and worn out by the crowds I constantly fight working in central London and while I’m not walking around seething, I do need something to work it all out on. Running has turned out to be useful for this. Pavements are good punching bags.

2- I spend more time outside, which makes me want to spend even more time outside. Being a slave to a computer all day means I don’t go outside enough and I really do love the outdoors. I spend a lot of time outside at weekends but during the week, running has given me a reason to go back out after getting home that doesn’t just involve chores like food shopping or emergency wine buying.

3- A new thing to set targets against. I like challenges. I like to surprise people. I like to do well at things and feel like I’ve fully taken them on. I started out really terrible at running, as I’m sure most people do, but training for something has made me want to do it more.

4- It’s a free hobby. I’ve needed ways to spend time for free since I started saving for a house and this has been a good one. It’s also turned into a good weekend hobby that actually puts me off getting hangovers.

5- I feel and look fitter. Looks shouldn’t matter, you might say, but I feel better for it.

I never thought I would be able to run. For a long time that was largely down to the fact that it just always looked so hard. How do people run so far without stopping? How can they be bothered? How do they not collapse with a stitch? How are they even breathing and living after 5k? I used to have many questions like these and despite the fact that I wanted to run and be like the people I saw on Sunday mornings in trendy lycra outfits ending their run in a swanky cafe and drinking a matcha something double shot whatever, I just couldn’t muster enough motivation. I also did not have any nice lycra.

I was also advised by various physios and doctors to just not bother running in case it made my join problems worse, which was an easy and good excuse to add to the list along with ‘looks like you get hot, don’t like that.’

So yeah, running, as much as the idea of it and sticking ‘runner’ in my Twitter bio appealed, was put on the back burner.

Then Christmas happened and then it flew past and suddenly January slapped me in the face with a nice little sack of misery. I felt unfit, I wasn’t happy with my body shape anymore, I had no gym membership since moving and I was feeling increasingly lethargic and indifferent to, well, everything. So one day I just went running. I think I must have played some sort of trick on my mind to get myself changed and plan a route because one moment it was a fleeting idea and the next minute I was halfway round the block, panting and realising the true extent of the cold.

It did not go well the first time. I couldn’t run for more than a minute and I tripped over some uneven paving. The second and third times also weren’t amazing, but eventually, perseverance and a bit of self-bullying saw improvements. I started to be able to run and I suddenly wanted to get better at it more than anything else. I didn’t have much of a plan or any idea of what to do next on the ‘training’ front, so an email asking if I wanted to the Vitality London 10k came along at the ideal time. I signed up, googled ‘help me I am running my first 10k’ and bought some new headphones.

Apart from one pulled hamstring which was immensely painful for a couple of days ad led to me buying a foam roller which my dog tried to eat, the 10k training was really good. If you’re on the lookout for a 10k I really recommend doing this one next year, even if just for the beautiful central London route. I also recommend that if you’ve ever been tempted to join the running rates, even if you can’t run for a bus right now, give it a go. Just dive in and try it out. I didn’t ever think I’d look forward to a run, but the clear-headed and accomplished feeling I get post-run is not something I want to lose.