A Message From Your Chronically Ill Friend

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I’m the friend who has to cancel at the last minute, the friend who’s always ill and often not very specific about the exact reason I’ve had to cancel… so I thought I ought to provide a bit of an explanation! 

22251271_10155262155554531_1328950934_oWe’re due to be meeting up, I’m excited, we’ve made plans… it’s going to be awesome. But at the last moment, probably become quite predictably, I’ve sent you a message to cancel… again! It’s not ok, I should have given you more notice or not even made plans if I wasn’t going to be able to keep them. The truth is, I was ready to go. I’d showered and dried and straightened my hair; spent ages picking out something to wear, got excited about seeing you but then my insides rebelled and I was suddenly too sick to come and see you. I’ve ended up spending the rest of the morning sat on the bathroom floor being sick/trying not to be sick. It’s nothing you’ve done wrong. My body just has the most awful timing.

It’s now 3:45am and I’m wide awake. It seemed like the perfect time to write about chronic illness, when it was once again impacting on my sleep. My physical health has been really kicking my butt recently. But it’s hard, when it’s been flaring up for a while, because I worry that people will get sick of hearing that I’m sick. I’m equally sick of FEELING sick too! But unfortunately it’s what’s happening right now and I have had to adapt my life to fit around my broken body until it’s feeling a little better. Being chronically ill isn’t what it looks like in films; people aren’t able to drop everything to come and look after you and the reality is that my Mumma is over 200 miles away… so when I threw up all over my own socks at the weekend, all I could do was cry a little and man up to clean everything up whilst all I wanted to do was curl up on the sofa with a sick bowl and Mum hugs.

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Despite being poorly, I have a job! Working from home is a godsend at the moment and I would have probably needed to take sick leave if I didn’t. Again, despite the common misconception that working from home means you lounge around in bed watching tv all day; I’ve still got to go to meetings, meet deadlines and manage my wonderful team of four. It’s been flexible so I can work my hours around when I’ve got the most energy or feel the least poorly, but it’s still really hard. I have to put on a brave face and nap in my break or collapse at the end of the day needing to go to bed at 6pm… only to wake at about 2am everyday when the pain and antiemetic meds wear off, until the next dose kicks in and I can get a couple more hours sleep before I need to get up for work again. It’s exhausting and sometimes work is pretty much all I have the energy for. Plus, my week is full of regular medical appointments which can increase when I’m not very well.

Thankfully, it’s not all bad. There are days when I don’t feel so poorly and times when I am not having a flare up, that I can be a relatively normal human… even if I do have the hobbies of a 90 year old. I’m used to being poorly now and am good at adapting and listening to my body (occasionally). I have a brilliant supportive army of friends, professionals and cats of course. And life is always good when you’re under a pile of blankets, with a cat and surrounded by wool or paint.

Things I’d love to be able to tell people when I’m struggling with my chronic illness:22217831_10155262157739531_533723081_o

  1. I’m not unreliable, my health is. Yes, this can mean that I AM unreliable, but I feel as awful about it as you feel frustrated with me. I am beating myself up about it already and have been worrying about having to cancel and hoping it doesn’t mean you hate me!
  2. I really wouldn’t cancel unless I had to and it’s probably better than me throwing up on you or having to spend the whole time leaving you to run to the bathroom or being unable to do anything because I feel so unwell.
  3. Please don’t stop inviting me, I feel so lonely with my chronic illness a lot of the time. Even though I often won’t be able to come or commit to seeing you. When I do see you, it means the world to me and I have the best time ever!
  4. I still really love you! Having to cancel plans is no reflection of how much I care about you. It’s really easy for friends to drift away from me because of how pants I am, but it’s really isolating and I miss you.
  5. Please be patient with me! 
  6. I want to be normal. I would give anything to not have to have the problems I am struggling with. It massively sucks for me as well as those around me. I would definitely prefer to be spending time with the people I love than having to be at appointments, being poorly or even in hospital (as happened recently).
  7. My health is unpredictable. So I may have to cancel on you one day, but feel a little better the next and be able to see someone. I have to take opportunities when they arise, it doesn’t mean I like someone better than you, often it’s just that there’s been a little respite from being ill so I have taken the opportunity to try and have a life!
  8. Social media doesn’t always reflect how I am! Sometimes my social media can show me having a relatively normal and fun life, I don’t often post about being poorly because I don’t want to bore people or seem like I’m fishing for sympathy. I’m not the type of person who’s likely to post ‘hospital selfies’ as I often feel ashamed of being ill or embarrassed. On days where I spend 50% of the time hanging out in the bathroom or curled up sleeping, I’m unlikely to post pictures or let everyone know (unless you’re my Mum, then you tend to get a play-by-play account of my misery and sadness 😉 ). I also don’t always post pictures on the day I take them, I might be reflecting on something nice that has happened recently but not necessarily post day-to-day pictures… or I just post pictures of cats, crochet and art journalling.
  9. I’m sorry if I don’t reply! I’m a bit useless at replying to messages on a good day, but on a bad day, it can be impossible. I appreciate people contacting me and it brightens my day so much, but sometimes I’m just focusing on not throwing up on myself… so I might be a little delayed in replying to you!
  10. My illness is pretty invisible! Sometimes I might look fine, but inside I’m really feeling unwell or my mental health is difficult. Please don’t judge me by my outside appearance. Plus… makeup is a mighty fine cover up!!
  11. Let’s alter our plans so we can still meet up! Sometimes, I might still be able to see you if we can change our plans. Coming over to mine is often much easier for me. It means I don’t have to worry about driving and if I suddenly feel unwell, I’m in my own home and it’s easier to manage compared to being out and about. If I’m not well, a crochet and coffee date can be a lot easier than meeting somewhere or walking for a long time. I get really fatigued when I’m poorly and sometimes I can manage going out for the day, but it wipes me out for a few days afterwards. So, talk to me and see if we can arrange something smaller and easier, so I can still have hugs and company!

It’s now 4.45am. I’m still fairly awake, but my insides are starting to settle a little. I’m fairly sure my bloodstream must be about 50% antiemetics by now. Hopefully I’ll get another hour or so asleep before I start it all again tomorrow. It’s hard being ill. I’m sorry for being unreliable. I’m sorry I’m not better by now too. I’m sorry I don’t look ill enough… but most of all, I’m sorry I have to be sorry all of the time. I’ve not asked for this and I would give it away in a heartbeat. I’m not asking for pity or sympathy. I just hope reading this helps with some understanding that I’m being crap for a reason, and I am trying my hardest not to be.

Shoutout to all my badass chronically sick friends, especially my Mumma, who’s the baddest badass of them all.

 

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40 Things To do When You Feel Dark And Twisty

So you’re in the dark place, but what can you do to pass the time while you’re there and ultimately help you to get out of it and back to an adequate level of humaning? I’ve come up with my go-to list of dark and twisty activities, that can be used at varying levels of commitment, motivation, energy and willingness to participate in any form of life. 

The feeling of ‘dark and twistiness’ was brought to us by the incredible Shonda Rhimes, the amazing creator of Grey’s Anatomy, who has also been described as a ‘life ruiner’ for her heartbreakingly wonderful yet emotionally wrecking writing. I’m a bit obsessed with Grey’s Anatomy, partly because I generally love most medical dramas, but also because the lead character Meredith Grey seems to channel a lot of the inner turmoil and deal with a whole lot of life shit that connects with me on a spiritual level.

The idea of dark and twistiness came to the world from Grey’s and explained the type of person in life who is generally dark and pessimistic but also has the ability to perceive a situation to be the worst it possibly can be. The reason for becoming ‘dark and twisted’ is having lived through difficult times that have in fact prepared you for the world, rather than being someone who is bubbly and positive and therefore clearly doomed to hit unhappiness and reality out of the blue. Ok, it may seem like it’s negative to be ‘dark and twisty’ but I see it as quite the opposite, it’s a kind of understanding that life is shit but actually you can be ok with that and sometimes allowing yourself to be in the ‘dark and twisty’ place means you can hit those feelings head on and deal the crap out of them!

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So, often it seems, I reach my dark and twisty max level and want to grab Stitch and spoon under my duvet until the end of time. Whilst this is a totally good use of time to just sit with the feelings, it can also be less than ideal when you are required to be an actual human. It’s important to remember that it really is ok to have real dark and twisty moments, real life is full of difficult times and the key is to be able to get through them rather than pretend they’re not real or try to do everything you can to never have them.

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So you’re in the dark place, but what can you do to pass the time while you’re there and ultimately help you to get out of it and back to an adequate level of humaning? I’ve come up with my go-to list of dark and twisty activities, that can be used at varying levels of commitment, motivation, energy and willingness to participate in any form of life.

  1. Open the curtains– if you can’t go out, let some of the world in. Sunshine can help you feel a little more like you can do some of life and if the weather is miserable it can help give you a good reason to hibernate and focus on self-care for the day. Open them a little way if you can’t face the whole word at once. Sitting in the dark isn’t good for your mood, let in some light and see if it helps you feel a little better.
  2. Call in sick– just because the feeling is in your head, it doesn’t mean it’s not an acceptable reason to take some time off to feel better. Sometimes it’s better to give in and accept you’re feeling dark and twisty than keep pushing through until you crash. If you had flu, you would take time to recover and mental health shouldn’t be different just because you can’t see it… well I mean if you’re only able to lie like a starfish on your bed, it’s pretty obvious you’re not doing all that great!
  3. Lie like a starfish on your bed– for me, starfishing is very therapeutic. Sometimes I will set an alarm and allow myself a period of time to just feel sad, angry, frustrated… whatever it is and take up the position of starfish face down on my bed while I feel those feelings. It doesn’t have to be done in starfish form, but giving yourself a set time to be sad can be so helpful as you give yourself permission to do it, let it out, and then in some mental way can often move on from that feeling and allow yourself the brain space to do something else.
  4. Find a new project or learn something– I’ve recently taken up crocScreen Shot 2017-02-14 at 19.01.11.pnghet. Being a massive perfectionist, I tend to hate the beginning of new hobby as I dislike being ‘rubbish’ at something intensely. Thankfully a patient friend persisted with me and taught me the basics of crochet… I’m now officially hooked! The benefit of crochet is I can do it when I am lacking in brain power. It doesn’t matter if I’m not feeling great, I can get a really satisfying feeling of making progress with a project, as well as it being fantastic as a distraction from the way I’m feeling.
  5. Watch a whole lot of Netflix-of course, other streaming platforms are available! Netflix is full of all sorts of films and tv shows etc; that can be a real escape from a difficult mood or stressful feelings or emotions. Netflix can make it easy by playing the next episode automatically for you to save brain power!
  6. Spend time on Pinterest– Pinterest can be really useful if you’re struggling. It’s full of positive inspiration, interesting ideas and tutorials and general distraction. I have created different boards to suit different purposes and emotions. Pinterest is one of my go-to distractions.
  7. Turn off your phone– when the world is overwhelming, the constant ‘on call’ nature of modern technology can be exhausting. Whilst it can be great to be available, the presence of read receipts and notifications that you’re online can mean you don’t get a break from people. If you’re feeling a little peopled out, take some time with your phone turned off, or at least in another room. It can be really freeing to not feel the need to check it all the time.
  8. Avoid social media– similarly, it can be really soothing to have a social media free day. Social media is an amazing way to connect with people, but it can also be a real stress if you’re not feeling great. Feeling the need to keep up with everyone else’s perfect lives is not only exhausting, but it’s not necessarily real! People often present their lives on social media as ‘instagram perfect’ when they may not really be as happy and perfect as they seem. Taking a social media break can help you focus on you and also help you stop comparing yourself to other people.
  9. Keep hydrated– dehydration can have an impact on mental health as well as physical health; such as causing anxiety, difficulties in focus and concentration and generally cause lethargy which can lower your mood. Keeping hydrated can help you feel a little more energetic and if nothing else, may stop you feeling worse!
  10. Morning pages-a fantastic ED nurse Screen Shot 2017-03-27 at 10.30.51.pngintroduce myself and a friend to
    morning pages. I’d never heard of them before, but now I’m an avid morning page convert! It’s a really simple process. All you need is a blank notebook or sketchbook and some pens or pencils. The idea is to write or draw whatever is in your head first thing in the morning before you do anything else. The benefit of getting ‘out’ what’s in your head, is it can help you to realise what you’re thinking and act as a healthy way to let out difficult emotions etc. Morning pages can be a really good addition to your routine or something you use when you’re feeling dark and twisty. The key is to not look back over the pages. Once the thought it out, it doesn’t need to be revisited as this can cause you to feel the same emotion again if you’re reminded of it.
  11. Blog or journal-another way to try and get out difficult feelings is to write in a journal or write a blog post. There are lots of journalling prompts on Pinterest and other sites, or you could free write to get whatever you’re struggling with ‘out’ on paper.
  12. Crafting– one of my favourite self-care acScreen Shot 2017-03-27 at 11.00.57.pngtivities is craft. Whether it’s
    drawing, painting, sewing, crocheting or anything that allows me a little bit of downtime, craft is so essential to maintaining good mental health. Craft can be something that’s really personal to you. You don’t need to show anyone or need it to be perfect. It can just fulfill a purpose; whether it’s as a distraction, as something you enjoy or as an outlet for the way you’re feeling.
  13. Sleep or rest– sometimes, all you can do is rest and build up your strength to fight on another day. It’s important to keep an eye on your sleeping patterns, in case you are using sleep as a way of avoiding rather than in a more positive way. Listen to your body, it’s so wise and will let you know if you need to have some rest. When you’re struggling with your mental health, you will probably feel it physically too. Listen to what you’re body tells you it needs and think about resting as a bit of self-care.
  14. Try and read something– even if you lack concentration and can only read a page (or the same page about a million times), a little escape into a book can be a way to help lift your mood or distract you from the way you are feeling. Children’s books, poetry or your favourite classics can be easier if you’re lacking concentration and still feel like an achievement when you complete them.
  15. Surround yourself with comfy blankets/cushions/snuggly things– self soothing is a key part of distress tolerance techniques. Finding things that help you to feel safe, calm and comfortable; can really help you to feel a little better or more grounded. Experiment and find the things that help the most.
  16. Put up some happy pictures on the wall– again, pictures can really promote wellbeing and remind you of the reasons you’re getting through the hard days. Photos are also a brilliant way to feel closer to people who you’re away from, such as family and friends.
  17. Get out feelings with paint– recently my life has been all about art journalling! Art journalling is a great way to express yourself, get out difficult feelings or emotions, motivate or inspire yourself… and all the while be really creative and experimental.
  18. Throw something at the wall (ping pong balls are good)– sometimes you just need to get an emotion out quickly. Often this can lead to unhelpful or harming behaviours. But a similar effect can be gained from doing something that can feel destructive but is essentially a safe activity! For example throwing a ball at a wall, shredding newspaper or screaming into a pillow.
  19. Have a mega clear out– spring cleaning and getting rid of clutter can feel really productive and help you feel like you are doing something beneficial. Getting rid of things you don’t want or need anymore can help the space around feel more calm and help centre or ground you a little.
  20. Reorganise your room– creating a nice clear space to think in can be so helpful if you’re not feeling great, once you’ve got rid of any excess clutter, perhaps have a move around and try and find a little Hygge or Feng Sui.
  21. Go back to the films and TV that give you most comfort– most people have a film or tv program that makes you feel happier; whether it’s a classic from your childhood or a series you’ve seen so many times, you know all of the words. Revisiting something that reminds you of good times, helps you to feel calmer and more content, or acts as a bit of background noise to keep out the dark and twisty thoughts can be really helpful.
  22. Listen to music– music that reflects how you’re feeling or tries to get you into a different mind frame is another way to either get the dark and twisties out, or help you feel a little better. Creating a playlist of songs for different moods can be a great bit of distress tolerance distraction and once you have them, they can be really accessible when you need a bit of a musical interlude. Explore other people’s playlist for different moods if you want to see what other people have found helpful, that might suit you too.
  23. Eat what you fancy– sometimes a little comfort food is just what you need to nurture yourself when you’re not feeling great. Tasty food that you really fancy can be really helpful for your wellbeing and giving in to a craving can feel like a real treat.
  24. Take vitamins– when you’re not feeling great, a boost of vitamins can help you feel less run down and stave off any illness when your immunity might be low. Vitamin deficiencies can cause mental health issues or exacerbate them and poor mental health can similarly cause deficiencies. The likelihood is that difficult patches with your mental health could leave your body needing a bit of help, so taking vitamins could help shorten the difficult patches or even prevent them in the first place.
  25. Spend time with your pets or with animals– Animals can be really soothing and the links between animals and improved mental health and wellbeing are widely discussed.  It can be helpful to observe that animals live in the moment, they don’t worry about yesterday or tomorrow, they are content with the here and now, perhaps showing us a different way of being. Pets can reduce stress and anxiety as well as be a comfort on a difficult day. They can be a real motivation to get up and look after them and them are good reminders of the simple things that are required in life such as food and water.
  26. Have a shower and get dressed– when you’re struggling to find motivation, self-care can fall by the wayside. Sometimes having a nice relaxing shower or bath can be another way to soothe your dark and twistiness.
  27. Take a trip in your mind– your imagination is a really powerful thing. When your head is in a difficult or negative place, doing a little mindfulness or using your brain in a more creative way can be really helpful. Take a trip in your mind to a place that feels safe or special to you, or even choose somewhere you would like to go to. Remember or imagine as much as you can using all of your senses. The more detailed the image, the more distracted or calm you could feel.
  28. Spend some time in nature– finding a way to connect with nature around you can help you find some stillness and beauty within a difficult day. Find spaces of natural beauty around you and enjoy the smells, sight and feel of the nature around you. Screen Shot 2017-04-02 at 11.18.37
  29. Look for inspirational quotes, literature or poetry– looking for some inspiration from others can help you feel more positive or help you find some motivation. Collect positive quotes etc in a journal or on your phone so you can refer back to them at times of need.
  30. Do some yoga– the process of learning and practicing yoga has lots of benefits for mental and physical wellbeing. The idea is to do what you can and not push yourself past your limit. A big part of yoga is focusing on breathing, which can really help if you are feeling anxious.
  31. Take a gentle walk– A nice calm walk to see something nice, visiting someone you care for or doing something like feeding the ducks can give you some respite from the difficulties you’re facing. Take a friend or go alone with your camera and make sure you notice the little things as you go along.
  32. Have long gaming sessions– whether you’re a seasoned gamer or have a copy of the Sims from when you were a teenager; gaming sessions can act as a real escape from difficult times. Getting stuck into building the best Sims palace you can, you might find you get sucked into playing which gives you a break from your head.
  33. Treat yourself– a little treat can help to pick up your mood, or act as a tool to manage your struggles.
  34. Allow yourself to not be human for a while without feeling guilty about it– it’s ok to not feel ok. Some days are a real challenge and can feel impossible to get through. It can be helpful to allow you to feel the way you feel without trying to fight it. Curling up on the sofa for the day and watching reruns of your favourite tv is often as good as a proper break. You don’t have to feel guilty about it, if you had flu you would take a day off work. Mental health struggles are still illnesses, just invisible ones.
  35. Reach out to friends who can support you- friends can be a really useful support network who can provide company, advice, distraction and understanding. It can be hard to explain the way you’re feeling to friends. But once they know what you’re going through, they are a great source of love and hugs which can help you feel better.
  36. Get some fresh air– even if it’s just sitting in the garden doing nothing, fresh air and a little change of scenery can help you feel a little better than staying cooped up at home.
  37. Make something with your hands to get out of your head– like baking, knitting or colouring. Keeping yourself busy can give your head a different focus. It can be really distracting to learn something new to keep you head extra occupied.Screen Shot 2017-04-02 at 12.37.25
  38. Eat something really nourishing and tasty– A simple recipe with some mundane chopping will give you a good meal and help you feel like you’ve done something for yourself.
  39. Invite over some company– sometimes being alone when you’re not feeling great is not the most helpful thing to do. Time alone can be good, but isolating yourself can make ruminating on the thoughts and way you are feeling worse. Finding friends who understand what’s going on for you can be really helpful, but sometimes just having someone with you as a distraction is enough.
  40. Ask for some more support– it’s ok to not feel ok. Sometimes you need a helping hand from someone who cares about you and can support you. Support can come from friends or family members, but sometimes you need a little more than friendly people around you. Your GP can be a good start to getting more help, they can prescribe medication or refer you to secondary mental health professionals. Sometimes it can be hard to communicate the way you’re feeling, writing it down or using a different medium such as art can help you to explain.

 

The irony is, this blog took me a number of weeks to complete because of my own dark and twistiness. My way of managing it was to think of some of the ideas within this blog as well as reaching out to those around me to help. The feeling of overcoming a patch of greyness is amazing. It’s hard to imagine getting through it, but when life begins to brighten around you, you may not even remember the depths of where you have climbed from. 

To All Those Who Are Healing

31b326dafa59bf97092951714a140a14If there’s anything that being in recovery from a mental illness has taught me, it’s that recovery (probably of any sort) is not a linear process.

I feel like the world of popular culture (films, tv and books) kind of oversimplify the process. Of course it would make for pretty monotonous viewing if we were faced with the ups and downs of the process, but to be shown that people get sick… find something to help and get better… kind of leaves us to expect it to be easier than perhaps it might be. The other important thing I begrudgingly note, is that actually, the blips and dips are the struggles that enable us to recover! If recovery were to be the picture perfect ideal we perhaps would prefer it to be, we wouldn’t develop the skills, strength and resilience to get better!

I guess the issue is, it’s all good and well trying to hold on to the fact that the dips in recovery are beneficial… but it can be hard to remember that when it feels like you’re not making progress or for the ten steps forward you make, you take a few back. But finding ways to remember you’re still making progress, even if it doesn’t feel completely linear, is so important.

Some of the ways I’ve tried to keep motivated is by thinking about the longer term achievements I’ve made and the big things I’ve done as well as looking at my overall progress. Where it can sometimes be hard to compare yourself to where you were a year ago, I’ve found it to be really motivating and helpful. I’ve also broken down some of my bigger goals into the smaller bite sized achievements that are ultimately getting me towards the bigger goal. Last but not least, talking about the ups and downs has also been really helpful. Having a compassionate awareness that this process is not linear has really helped me to keep my eye on the prize.

I’m attempting to blog every day this month for NaBloPoMo… follow me for daily ramblings throughout November…

NaBloPoMo November 2016

Things To Avoid Saying To People With Mental Health Problems

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Recovery from a mental health condition is a complex and difficult journey that can be a full time endeavour. It’s not a a linear process; but full of blips and struggles as well as triumph and success. Recovery can be hard enough without unhelpful (even if well meaning) comments or conversations. Here is a collection of the types of things people in recovery wish you wouldn’t say to them! This list was compiled initially thinking about recovery from an eating disorder, but a lot of the comments apply to other conditions as well.

  1. Aren’t you better now?– Recovery isn’t a simple process with a clear beginning, middle and end. Unfortunately a course of therapy doesn’t mean you’re fixed and it can often be hard to tell where a person is in their journey by just looking at them. Recovery takes time, try not to assume that because someone has been doing better for a while, it doesn’t mean they’re ‘fixed’ now.
  2. You don’t look like you have an eating disorder (insert other condition here too!)- mental health conditions come in a variety of shapes/sizes and presentations. Try not to invalidate someone by telling them they don’t look like they have that condition. It’s just a bit offensive!
  3. You look fine/healthy/well– telling someone they look fine can be a real challenge to someone in recovery who is battling to come to terms with a new recovering body. It can be a really distressing comment that is often used through habit without any real thought or meaning behind it.
  4. OMG my cousin/aunt/hairdresser/a lady down the road had an eating disorder/the same condition as you– a list of all the people you’ve ever know with a mental health condition can feel a little insensitive. It’s human nature to make comparisons and find similarities in conversation but it can also feel a little invalidating to for the person who has felt able to talk about their own experiences.
  5. General morbid curiosity- sometimes there can be a sense of feeling like a bit of a spectacle with some of the types of questions you’re asked about your illness. My personal favourite was being asked what I ate and if I ate anything when I was unwell. The intimate details of eating disorders are kind of like sexy underwear… We all know it’s and it’s great for anyone who needs to know about it and be involved with it…. But at the same time, you don’t need to discuss it/flash it around. There is a time and a place for intimate details… Perhaps leave it to the person with the condition to guide you on their level of comfort when discussing it.
  6. I totally know what you’re going through, I had depression (insert time since/duration)– mental illnesses are really complex. It can be comforting to know that someone has an idea of the type of situation you’re in, but there’s a difference between empathy and complete understanding. People are all really different so try let the person with the condition explain their situation rather than your experiences getting too involved!
  7. I’ve been in hospital 50 million times more than you– perhaps 50 million is a slight exaggeration but mental illness isn’t a competition to see who’s’ been more unwell. Inpatient stays aren’t a badge of honour that demonstrates to the world that you were the most unwell. Often people suffer from eating disorders in the community and lose their lives, demonstrating that those in hospital aren’t always the sickest.
  8. I have a stomach ache… well I have reflux… well I have IBS… well I have gastro paresis… OH well I have had my bowel removed… WELL I was pronounced dead!… Well I AM ACTUALLY DEAD/chronically and severely dead. Did you have a glucose level of 0.00000001 and get resuscitated?!- again perhaps a slight exaggeration… But battles of the sickest can also take place through unhelpful oneupmanship, where it can feel competitive to have received the most dramatic treatment or diagnosis. In reality, it’s probably not helpful for anyone… So could be another good area to avoid!
  9. Start exercising… it’s healthy for you– for people in recovery, diet as well as exercise is normally controlled and managed in terms of what is appropriate for that individual. Diet and exercise advice is probably left for the professionals to deal with. You never know, you might be suggesting exercise to someone who is not physically well enough to take part in it or could make someone in recovery feel really guilty about their exercise regime and potentially trigger them to feel compelled to do more.
  10. Be naughty, have a slice of cake or saying ‘OMG we’re so fat’ whilst eating something ‘unhealthy’– now… Repeat after me… There is NOTHING naughty or bad about cake or foods that are deemed less healthy than others. Thee secret to a health diet is to have a balance of food groups including those that have fat in them. Cake is good and tasty and something to be celebrated, if you think it’s naughty then perhaps you need to think about your own relationship with it!!
  11. People telling you about their diet and then remembering and saying… oh but not you– diet talk is really challenging. In my experience my ability to cope with that conversation depends on how I’m feeling at the time; generally it doesn’t bother me. The thing that does is people following it on with judgements about my body or whether I should or shouldn’t be dieting. When my eating disorder is strong or my perception of my body a little out of whack, the last thing I want to hear is people telling me I don’t need to diet whilst telling me about all the dieting they’re doing. Think about your audience.
  12. People stopping to ask if you’re ok because you look healthy or assumptions that eating=healthy- sometimes the hardest part of recovery is the point where you look a lot more ‘fine’. Recovery starts the moment you’re free in the real world with real world problems and stresses… that’s the point true recovery starts. Just because people look healthier, it doesn’t mean that everything on the inside is hunky dory and it’s quite sad to feel like you got more support when you were the most unwell… it kind of perpetuates some of the underlying issues with different disorders.
  13. Saying ‘you’re fine now right’?– fine is a really tricky word! What even is fine?
  14. People saying ‘I’m glad you eat now’ I know for a fact, my family were very relieved to see me eating more normally and healthily. But constant reminders that I was eating ‘now’ were excruciatingly difficult and had the potential to make my head go wobbly. It was just easier to change the topic away from the food. Food and eating is just a symptom of an eating disorder, it’s much nicer to talk about normal mundane things around meal times rather than dwelling on the thing I found tricky!
  15. Telling you an ED is just about eating– the above leads on to this suggestion too… in recovery, you are told often, that eating disorders aren’t simply about food or eating. They are complex and challenging mental health conditions and moving the focus away from the food can allow the real psychological work to begin. Reinforcing unhelpful stereotypes of eating disorders isn’t the most helpful way to approach them.
  16. ‘Just eat healthily’ or ‘just get over it’ or ‘it’s all in your head’– of course… if recovery was as simple as just getting better or just being healthy, a lot of people wouldn’t get so stuck within the cycles of eating disorders… much the same as pulling yourself together or just getting over it, it’s much easier said than done.
  17. It’s ok to lose a bit of weight as long as you control it/stay within your healthy BMI/just a little– This is another example of leaving the judgements to the professionals. Any form of weight-loss for someone who is in recovery from an eating disorder needs to be managed really carefully as it can be a strong potential relapse trigger.
  18. When you eat in front of someone and they instantly think you’re fine now or you refuse something as you genuinely don’t want it and they act like you’re dying– it’s normal to have a differing appetite at different times, whilst keeping an eye on someone recovering from an eating disorder and supporting them with their intake is really helpful, jumping to conclusions can cause stress and tension in your relationship. Rather than casting a judgement, perhaps be curious about what’s going on and check they’re doing ok.
  19. When you genuinely have allergies and people think its just an excuse to not eat or not being able to eat certain things because of health issues and people think you’re not doing too well at the moment– this kind of statement belongs with other aforementioned comments that should be left to professionals to discuss. It can be easy to jump to conclusions about choices a person is making and whether or not they are eating disordered… but it’s definitely better to be curious and ask rather than assuming.
  20. Saying “no she wont eat this” without evening offering–  these kind of comments or situations can make it obvious to a group that you have problems around eating; not only can it  be embarrassing, it also sets up a perfect opportunity for eating disorders to take advantage of the situation. It’s much better to offer anyway, you never know, ‘she’ might decide to be brave and participate in whatever is being shared and will feel more included at being able to have a choice.
  21. When someone says “I haven’t had an appetite so I haven’t been eating much, but at least I’m losing some weight”– weight-loss conversations are often best avoided with someone who is in recovery, as it can feel quite upsetting. If it does feel ok to talk about weight-loss, it’s perhaps better to stick to healthy methods rather than taking pride in having lost weight through illness.
  22. Pointing out people around you and commenting on how small they are– comparisons are often a big fear of people with issues around body image… if you’re pointing out other people and making judgements about them, imagine how that could be impacting on a friend who assumes everyone does it about their weight or body!
  23. Saying”you’re eating french fries?!” “You should eliminate X from your diet”– whilst fad dieting tips and ideas are common in conversations, it’s not healthy to eliminate entire food groups from your diet. It’s especially unhelpful to suggest this to someone with an eating disorder as it can really give their illness room to get creative!
  24. ‘You are useless’ or ‘no wonder your manager doesn’t like you if you act like this’– mental health conditions aren’t a measure of your worth as a person… and it’s really unfair of someone else to comment on you in this way. Telling someone who is struggling with a mental health condition that they’re useless is often reinforcing the way they already see themselves and really isn’t helpful… to then apply these unhelpful judgements to other people… well that just feels pretty out of order regardless of your mental health!
  25. ‘Grow up’– Unfortunately eating disorders and other mental health conditions aren’t a sign of immaturity and don’t just disappear as you reach a certain birthday… maybe if you feel like saying this, you could do with a little growing up yourself!
  26. ‘Everyone finds things hard, you just give in’– life and being a human is really complicated. Unfortunately combinations of events, feelings and other elements such as illness or even the weather; can impact on our ability to cope with what’s happening. We all have those days where you end up in tears because you dropped a plate and it was just the final straw to a bad patch! Having a mental health condition isn’t a sign of giving in, often it’s a mark of someone trying to stay strong on their own and not asking for support from those around them!
  27. ‘Those pills are fake’– generally people don’t take medication without a good reason for it, especially for mental health conditions; it can feel embarrassing or shameful to admit to having medicinal help for a condition… but you wouldn’t question someone with a physical health condition taking prescribed medication for it!
  28. ‘It’s sad you need to write things down to realise what’s going on’– if someone has a coping method, try not to destroy it with your words. If it’s working… then does it matter if it seems ‘sad’ or ‘silly’… I like to blow bubbles when I’m stressed. It harms no-one and immediately reduces my anxiety… taking the place of unhelpful eating disorder behaviours. Don’t judge and perhaps give it a go yourself, you never know it might help!!
  29. ‘You don’t look anorexic’– If I had a penny for every time someone has said this to me! Coupled with ‘you look fine now’, it probably tops my list of the most unhelpful thing someone can say to someone who is in recovery from an eating disorder. Firstly, eating disorders come in all sorts of shapes and sizes… but secondly, the goal of recovery is to not look skeletal but to restore a healthy weight. Being told you don’t ‘look’ like you have an eating disorder can be highly triggering and stressful, it’s just additional unnecessary fuel for a nasty ED!
  30. ‘You’re eating loads’– In recovery, prescriptive meal plans are given for a reason. They’re worked out on the basis of the amount of food the person needs. It’s really hard to have that questioned by other people… it’s the amount it is for a reason!
  31. ‘Your problem is that you’re just over-sensitive’– being sensitive is such a positive quality… but over-sensitivity isn’t really a DSM-V criteria for a mental health condition. Often people with eating disorders have very selfless personalities and worry about impacting on others… but it isn’t a single reason for their difficulties.

Sometimes what people do say isn’t the difficulty. Mental illness is complicated enough but often it becomes a barrier meaning people avoid saying something or doing something but the person with the mental illness or difficulty wishes they hadn’t.

One way of tackling difficult conversations is to take a lead from the person with the mental health condition. They can guide you to the right balance and level of discussion. If you are able to promote open conversation that’s respectful and compassionate, they’re more likely to feel more able to be honest with you whilst feeling safe to do so. The moral of the story is… don’t NOT speak to someone with a mental health condition, but perhaps think before you speak and take a little time to judge whether what you’re saying is appropriate.

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Thank you so much to all of the wonderful contributors who made this blog possible and not a rambling list of purely my own experiences!

For All Those Who Are Struggling

A Message For People Struggling With Mental Health Problems

Mental illnesses are horribly isolating at times, this is a message for all those who are struggling right now. Whether you are someone I know or a stranger far away, this applies to you. Heck, this isn’t purely for people who are finding their mental health a challenge right now, but includes all those who are struggling with life or situations being put their way. 

 

Dear wonderful person;

Yes you, if you’re reading this letter then the first thing I want to say… is that you are worthy to be doing so. The way you’re feeling right now, you probably don’t think you deserve any extra love, kindness or compassion. But the truth is you do. In fact right now you deserve it even more than usual, because the fact that you’re feeling back is reason enough. I can imagine right now, you’re wanting to give up at times, throw in the towel and stop trying to get through the day. A blanket fort probably feels like a safer alternative to life… and for now, perhaps it is and that’s totally ok.

You’d probably quite like someone to come along with a magic wand and make everything feel ok again. I really wish I could be that person, the one to take away the sadness or the struggles and make it all better. Unfortunately I can’t do it right now as much as I would like to. All I can say, is that it’s not going to feel exactly like this forever. Of course there might be days when you feel worse, but I believe and hope that better days will come too. They might not be the recovered all singing and dancing days you might anticipate or wish for, but they could be days where it hurts a tiny bit less or the sun just seems a little bit brighter. The thing is, even when everything seems completely hopeless, if you keep a look out you can find or spot the tiny bits of goodness in the world. It might be hard to find them at first, but I assure you, if you keep practicing and noticing… you’ll be amazed at what is out there for you to see.

Your problems are valid. Yes there are people in the world who are experiencing different struggles to you, but it doesn’t make what you’re feeling or they are more or less important. You problems are your own, it’s ok to identify them and take ownership of them. But at the same time, if you just want to put them aside for this moment and take your mind off them. That’s ok too!

Your moment will come. Right now might not be the time that you do the most exciting and groundbreaking moments of your life happen. But that’s ok. You will get through this challenging time and great things will come to you. Take this time to get through this moment, but try not to focus on needing to make it completely better and fixed immediately. It will come.

Life is like an amazing novel. If someone asks you to summarise a book you’ve just finished… I’m fairly certain you will remember the basic storyline and plot but not all of the intricacies that came together to form it. You won’t remember which chapters made you particularly happy or sad, but have a more general idea of the whole story. That novel is like your life. There may be chapters that are hard to get through, or feel like they will never end… but when you look back you will see them part of a rich story and not the crux of it.

I really hope you feel better soon, and if not totally better… just a little bit will do. You will get through this, it’s going to be ok. You can do this!

All my love,

Kate

I Don’t Have Time For Fun!!

After handing in my dissertation last week, I realised how little time I’d been setting aside for self care. It’s so easy when you have an upcoming deadline, an important project at work or even just other life stuff going on… to just set recovery to one side. You can do a ‘good enough’ job… and hey isn’t that what they always said to do! But you can really end up settling for a middle ground that can ultimately not be very enjoyable or helpful.

I’ve spent a few days recently, having FUN! That carrot on the stick I dangled ahead of myself as I was completing my final piece of Uni work; that THING I’d forgotten how to do. It was easy to finish my diss and get right back into exciting things at work. I’d had a bit of a debrief after my hand in, but it wasn’t much at all. As I dived straight into new projects and began picking up the slack again at work, I realised I’d really been neglecting my own self care for some time. Now the truth is, I am an A grade hypocrite at times! I work with amazing young people who inspire me so much and I frequently recommend different skills that they could utilise to help boost their mental health. They laugh at me for the number of times Mindfulness comes up in our chats, but the truth is, I know from experience that it can REALLY work! That being said, after finally stopping at the end of this week, I took stock of where I was at and all the self care things I’d neglected over the last few weeks. Self care is so easy to neglect and it can take some effort to manage to squish it back into a routine where it was so easily replaced by other ‘more important’ things to do. The number of times I tell myself or hear friends saying, they don’t have time to do the nice things they want to, is a bit ridiculous. If being in hospital for almost a year taught me anything (which of course there was lots), it was that you can take time out of life and somehow everything still happens without you giving it your full attention (thank you wise guru Gerry!).

In a sense, a little self care each day can be a sort of personal early intervention. If you top up your internal store of resilience and ‘ability to cope’, then you’ll have a good stock if something comes up in life that you need to deal with. I’m starting off slow and making sure I have at least one nice/fun thing in my day. It can be as simple as a nice bubble bath, reading a book or spending a bit of time pottering in the garden. The key is to help find my space for something good each day and firmly get it into my routine again; once it’s got a foothold and feels like the norm, perhaps I can let it blossom. I think it’s starting to help already.

 

 

But What If I Fail?

I’m staring at the screen, wishing the words would come easier. They’re there, wrapped up in some part of my head that feels a little unaccessible at the moment. The wrapping; layers of self doubt, perfectionism and pressure… winding around them tightly. Writing should come easily, I do it every day as part of my job; and yet when the pressure is on, it seems a much more difficult task.

I’m used to deadlines, it comes part and parcel of working in content and media. It’s strange that those kind of deadlines seem so run of the mill. Perhaps it’s the level of anonymity that I can hide behind when I write for the website where I can become the voice of the organisation. In reality it is still me! And of course, there are many people around me that know it’s me. The veil of anonymity a little shattered. Next explanation? Perhaps it’s because it’s expected of me, I want to do it as well; don’t get me wrong. But writing is my daily responsibility, it’s my role and job… so maybe it isn’t that!? The reality is perhaps a little more simple. This is the final piece of work I’m completing before my degree is done. There I said it. Last chance saloon, achieve now or never. This is the grade that could make all of the difference, it’s weighted more and could be the key to the degree classification I desire! The pressure is on, it’s the final countdown… you know the feeling!

It’s hard to keep reminding myself that all the work I’ve been doing has in fact led me to this place. I didn’t happen upon it by chance. I learnt the skills, practiced them and perfected them with everything that came before this stage of the course. The problem lies in being able to accept that I am capable of completing this final section and shelving the negative thoughts to enable this block to pass! It’s not a test, set to trip me up and prove that I was in fact never going to get a degree. My lecturers weren’t just being kind to me and telling me I was going to be ok for the fun of it. It is something that is completely in my power to complete and succeed in. And the reality is, even if it’s not the most amazing piece of work in the entire universe, it’s not a reflection on me as a person. And in all likelihood it’s going to be pretty alright judging on my other marks! I will pass my degree because I have worked hard to do so, of course a shiny classification at the end would be wonderful, but actually it would be a nice bonus. The past five years have, in many ways been a bit of an upward struggle with mental health problems trying to block the way every now and again. It has been a time of struggles but also achievements, the worst and the best parts of my life in a long while!

Of course, the stress I’m feeling is not uncommon. Just walking into the library, you can sense the culmination of pressure and tension radiating from a multitude of students, all doing what I am now. In the next few weeks, there are going to be plenty of blank screen moments. There’s going to be a lot of the time when perhaps it feels like we’re all on the track of an impossible task. But in a few weeks time we’ll be able to finish and look back on this time as the final push to complete Uni. It’s going to feel stressful because it matters, we all want to do well. The main thing I will be remembering is that I will probably do better if I try to look past some of the pressure and fear and just do what I’ve learnt to do!

Good luck my fellow finalists! We’re going to get there in the end!