Trying to find comfort when illness is beating you

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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.

I’ve got 99 problems and my bladder is one

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Of all the things I ever imagined being jealous of, people with well behaved bladders wasn’t one. But I am. If you have a bladder that works in normal ways and doesn’t cause you sleepless nights, hot flushes and the need to pee into plastic tubes for your doctor regularly, I envy you deeply.

I can’t even consider counting how many UTIs I’ve had in my adult life. I know there was a period where I had over 20 in a year (or more likely several that just decided they were making a home for themselves), leading to what seemed like endless examinations and having cameras put in places you really wouldn’t want a camera. I’ve also lost count of the amount of times I’ve been asked “does it sting when it comes out?”

If you know the plight of having bladder issues, then you know how real the struggle is. My bladder took over my life for about a year and a half. Eat, sleep, cystitis, repeat. That was pretty much how I rolled. Instead of sleeping peacefully at night I could often be found slumped on the bathroom floor cradling a bottle of water and thinking about how good life can be when you don’t have burning in your urethra.

Luckily for me, one of my housemates and best friends was going through an equally terrible time with her bladder. Infections, waking up several times a night, endless trips to the doctor and a general feeling of misery. While I’ve managed to mostly escape the clutches of bladder-doom for now, I still get the odd infection or period of time where things don’t feel quite right. It’s nice having a network of people who completely understand the awfulness to rant at when it happens. All I’m missing now is a cystitis WhatsApp group. Or actual support group. There are clearly women everywhere eligible to join.

I was once a tube going to work, and I got that terrible feeling of heat creeping up your body, followed by the sudden desperate need to go to the loo mingled in with nausea and must have looked so bloody awful that a woman approached me to ask if I needed anything. Maybe it was the fact this was about the fourth time in a month this had happened, or I was just at the end of my urinary tether, but I just word vomited all about my troubles to this absolute stranger. Turns out, she was on trimethoprim for a UTI herself. We ranted for three stops before I dragged myself off at Old Street to go and have a little cry in my office. Oh life.

One of the only things that got me through the worst of times, including laying in hospital with a raging kidney infection watching Pitch Perfect on repeat on iPad, was knowing I wasn’t alone. Even among my friends, there’s at least five girls who suffer the same as me. I’ve even gotten talking to people on Twitter who have the same issues and when you begin discussing techniques to feel better including baths, barley water and hot water bottles, you feel a sort of virtual hand holding. I even felt like I was receiving a pat on the back from Caitlin Moran recently when she tweeted on International Women’s Day that her best advice to women was ‘always have a wazz after a shag’ to cut down on the cystitis risk. What a hero.

It makes me sad that I even have this much to say about how much my own bladder trolls me, but knowing I’m not the only one sort of takes the edge off. I feel your pain girls, I really do.

 

A fitness overhaul- 3 months in

  
When I moved in December last year, I was probably the fittest I’d been in years. I wasn’t running marathons or anything, but I could actually seriously exert myself without feeling like my lungs and heart were having a rave. My health problems weren’t great though, and when I started feeling more and more rubbish, I just sort of resigned myself to letting all the hard work go to waste. I didn’t join a new gym like I promised myself I would straight away, instead I started eating Lindt chocolate reindeers and using the cold as an excuse to behave like a sloth with a sweet tooth.

I saw someone post a quote on Twitter in January which said ‘The only exercise I get is running out of money.’ I think I laughed for about 40 seconds then realised it was actually me. I had transitioned from fit and well and on a roll, to lazy and uninspired. Exercise and fitness are vital for my body. I need to stay fit and strong to not end up crying in a heap of dislocated joints and painkillers, but I seemed to not really care. I blame part of this on that Christmas mentality where you eat and eat because it’s December and it’s just what people do. Twiglets for breakfast? If it’s December, then yes of course, I’ll eat the whole pack.

Anyway, eventually I did drag myself out of this winter misery and stop eating leftover quality street long enough to realise I needed my old diet back. After a month of getting back to my usual, much healthier self, I finally joined a gym and put together an exercise programme I could actually do and stick to. Turns out I need structure to function, so going to classes instead of just rocking up to a treadmill as and when I had time worked much better.

Now it’s been 12 weeks. It’s been three whole months of doing this timetable of exercise and aside from the obvious benefits like looking more toned and feeling more energetic, I’ve also started feeling more like I want to participate in life in general. I don’t think I ever actually realised that a sudden lack of physical activity and a lot of lazing around made me less inclined to join in with stuff, but it did.

Now I don’t want to go home after a long day at work and just lay in one place watching Netflix or traipsing around the kitchen throwing a meal together like it’s the hardest task ever. I want to do things, and be outside and see more people. For the most part my energy is much better. I look forward to gym days because I leave the classes feeling a lot less uptight and stressed. I’m grinding my teeth less and I’ve cut 95% of the coffee I was guzzling. It’s probably for the best I’m no longer on first term names with the staff at Waterloo Station Pret, let’s be honest.

I would be lying completely if I said for me it was all about the wellbeing and the energy, because it isn’t. The physical changes like the flatter stomach, more shapely looking thighs and stronger arms make me feel like it’s all worthwhile, but as long as something drives you, it surely doesn’t matter?

Apart from a hamstring pull where I ended up limping for a week and buying an aggressively green foam roller on Amazon, I haven’t let the momentum slip. When I went back to running this week post-hamstring, I could feel that a week away resting had jilted my fitness. In the past I probably would have let the hamstring just lead me back down the path of slothism and snacks consisting mostly of Nutella and digestive biscuits.  But even in a week I missed the structure and the social side of the classes. Turns out having a wheezy chat while you stand bent over after doing a circuit of box jumps is just as sociable as WhatsApping from bed.

I have a game plan and an aim to keep this going until the end of the year, because I’m genuinely keen to see where I can get to. I mean, there are still 6 months of the year though, so it’s a long time to stay strong, but as long as I stay well (finger, toes and legs crossed) and don’t let the inevitable winter turn me into a life Grinch, I feel like I can do it.

How social media and blogging transformed my health anxiety

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I think I probably see at least two tweets a day with links to articles or blog posts singing the praises of the digital detox. Generation Y- the people who have a smart phone in their hand while in bed, in the bath or on the toilet (you’ve all done it). We use social media too much apparently. We stare at our glowing little screens for too long. We’re obsessed with other people. It’s bad for our mental health. It’s bad for our self-esteem. Probably all true to a degree.

I use my phone too much. I went to college in the rise of Facebook. I did journalism as a degree when the digital age was starting to thrive and print magazines were starting to die. “Sign up to Twitter!” “Start a blog!” “Learn about SEO!” I did a module at uni that required everyone taking part to set up a blog. This was 2010, and the first time I delved into WordPress and started getting my head around tags and catergories or trying to think about content someone- anyone at all, would want to read. Then I graduated and forgot my password.

Fast forward two years and I was in my first permanent job after uni, doing some web stuff, learning all about diabetes and dipping my toes into digital marketing. Oh and I also had crippling pains in my shoulders when I breathed and was waiting on endless referrals and seeing endless physios and rheumatologists and puzzled cardiologists who couldn’t work out what the sudden deterioration in my physical health was.

I just assumed it was something wrong with my joints and that some physio would probably fix it, but the longer it dragged on and the more symptoms that appeared, the more confused I got. Anyway, finally, months later and after one partial hip dislocation, I got a sort of diagnosis. “You’ve got a rare disease that we don’t know much about and we haven’t got the testing right yet, but you’ll be okay for now asking as long you don’t keep dislocating things and become immobile.” Okay so I’m paraphrasing, but that was the gist of what I got told, because there really isn’t much known about JHEDS- Joint Hypermobility Ehlers Danlos, to be precise.

Jolly good, I thought. I’ll just erm, go and continue life while my joints fall apart and wait for the day some lengthy research is finished so I can Google it?

I tried to do some research, typing in random words doctors had said and even turning to those live chat forums where an alleged doctor answers you. Like, who are these people? Why do they all look like stock image models in their photos and are they really there? I have some serious doubts, plus one chat led me to being told perhaps I ate too much food colouring. Legit, I’m sure.

Around about that time, my colleagues started receiving requests from the local council for us to contribute to their blog. The task fell to me and after writing a bit and delving back into blogging, I started to wonder if there was a blog out there for everything…and every health condition. This is the internet, where you can see micro-pigs ride around on turtles, surely there was something that could help me. It took less than hour to find several blogs that told the stories of patients who’s joints were breaking, bodies were bruising and limbs were hurting. You know in films where something falls into place and a light shines down like angels are using a torch or something? That was me, right then.

There were people all over the planet, not loads but some, writing about the same sort of condition that I had. People who actually understood, who hadn’t got the right answers from doctors and who had advice I could take on board. They knew how it felt. This also led me to discover the phrase ‘not rare, but rarely diagnosed.’ I was not alone, which was nice to know.

The blog discovery flipped a switch and I started searching Twitter. I found people who tweeted about connective tissue disorders. Imagine loving reality TV and selfies and drama more than anything and discovering the Kardashians for the first time.

It became clear that I needed to join this community. I wanted to do health communications/marketing as a job, and I needed support for my own health, as anxiety and stress was making me feel even worse than the pain. I needed the virtual pat on back and look of understanding these Twitter accounts could offer me. So I started blogging. I started tracking down people who had the same condition as me, or similar, and tweeting them. I sent them, very nervously and after much deliberation and hovering, links to my first blog post.

Looking back, I got a pretty overwhelming response.  People were so kind. People offered me advice, shared their stories, read my writing, shared it on and suddenly I had more Twitter followers, people were subscribing to my blog and I felt about 99.9% less lost and scared than I had several months before, leaving hospital appointments with just words and confusion.

To this day, the online community of rare disease sufferers, chronic pain fighters and fellow connective tissue lackers make me feel better. They make me feel confident I’ll get through bad days, they educate me and they give me a connection to people who understand how I’m feeling. There’s a line though, as sometimes too much information, perhaps not specific to you, can cause more anxiety, so I try to digest just the right amount.

It might not be ideal that we have phones glued to our hands and share everything we eat and wear on Instagram, but social media and blogging helped my health in ways I can’t even measure.

Cancer- you can’t sit with us 

 

IMG_6595-0It’s World Cancer Day today. In the last 14 months cancer has tried it’s very best to mess with two of the most important, long standing people in my life. It’s unforgiving and complicated and we all have or will have a loved one who has to sit across from a doctor and hear the words we all dread.

Cancer has no agenda, it just IS. It’s just there. There’s no way to predict who will or won’t get it- but there are things we can do to try and lower our risks. I’m not one for living by strict rules and doing life in half-measures but since my mum and oldest friend had to take on the fight in the same year, I’ve become more determined to care about my body. You learn lessons the hard way when cancer is involved.

A bit of self-care goes a long way, and while you can’t eat a diet or take an exercise class that’ll make you immune, you can check yourself. You can touch your boobs, remind your boyfriends and your dads to check their bodies, pay a little attention to moles and just be aware of how you function.

We can do a little more exercise, eat a little better and care about ourselves a little more.

This is short and I wouldn’t call it sweet, the last year hasn’t been sweet, but it’s a privilege to have watched two fighters come through the storm.

If you do one extra thing today, make it about taking care of number one. It’s a good first step.

Fuck you cancer. You can’t sit with us.

Amazing moisturiser which wants to keep you cancer aware- say hello to Sniffy Wiffy

IMG_6614 I’m a massive sucker for pretty packaging, especially when it comes to beauty products. But how about packaging that looks good and looks out for you?

That’s what Sniffy Wiffy does and I love it. The packaging of these products have illustrated instructions on how to check for signs of cancer. Not only is it an amazing trigger to help us remember to check, the profits go to worthy cancer charities- Cancer Research UK and Ball Boys. I LOVE this so much. This is a cause that’s very close to my heart, so everyone I know can expect these in their Christmas gifts this year. It’s inspirational and the products are pretty lush too.

The body butter for girls comes with the option of labelling with instructions on how to check breasts for signs of breast cancer. This should be high on our ‘body admin’ to do list but it’s an easy task to forget when you’re busy, which is why I think this is genius. The simplest visual trigger to help us ladies remember something SO important.

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And it’s not just for girls! There are men’s moisturisers Available with labelling that instructs on how to check for testicular cancer.

The incentive alone was enough for me as breast cancer is most treatable when caught early, which is why we MUST check ourselves, but the products themselves will keep you re-purchasing. The coconut body butter is rich, absorbs nicely, isn’t sticky and smells divine. The products are available in loads of fragrances including chocolate, coconut, Guinness, blueberry, cherry, citrus and gingerbread, just to name a few.

You can also nab hand cream which smells just as good, lasts through hand washing and comes in the ideal handbag sized tin.

The product list includes body scrub and bath oil and pretty soon the brand will expand to cover children’s products with meningitis symptoms for parents. Just a helpful reminder and something you can use if you ever felt the need to check the symptoms of a little one.

I love this brand. I love what they stand for and I love how much engagement I’ve been able to have just from sending an email. I wasn’t sent these to review so this isn’t biased in any way, I just hugely support what they’re doing.

To give to a good cause the next time you need some moisturising goodness, head over to sniffy Wiffy and you can get 10% off by typing LAUREN in the discount code checkout section.

These came packaged beautifully so they’d make a good gift for someone else too.

GET SHOPPING.

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