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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Lists Against Fears

THE NEW YOU.jpgWhen you’ve been in some sort of treatment for a mental health condition for a number of years; it can be rare to be presented with a new idea that you’ve not seen before. This isn’t to sound arrogant as if I’ve had all of the treatment there ever was… not at all. But rather, there are some similar ideas and techniques that come up more often than not. Whilst a lot of these traditional, go-to ideas are great, it can feel a bit hopeless if you’re just being given the same old. I’ve always had a belief that if what you’re doing isn’t working or really helping, then you need to keep trying until you find something that works! Sometimes it feels this is a real weakness of community mental health support. There’s a limited scope for overstretched teams to provide care that’s tailored to the individual and it can feel like professionals try and shoe-horn you into their own method of working… and discharge people who don’t progress within the parameters of what’s available.

Recently, I worked with a locum practitioner who gave me some new ideas, things I’d never tried before. I was a bit dubious about some of them, as they were out of the normal CBT based ideas I’d been given in outpatient treatment. The number of times I’ve had to write a food diary, compare it to my meal plan, write down my thoughts and then counter them with alternative thoughts; is probably too many to recall now! For so long, that has been the treatment. There’s been very little creativity. I’m not criticising the professionals I’ve worked with… totally… but I am saying there could be a little more variety in the kind of work offered to outpatients regardless of the understandably challenging lack of resources. So, back to my locum practitioner. One day we were talking about the importance of having my weight monitored. It’s something I’ve always hated and battled against. Partly due to OCD rituals surrounding getting a perfectly accurate comparative weight (yes… something I know isn’t really a real thing but that’s not the focus here haha). So being a regular argument had with the team, we began for a moment to have the standard backward and forward about being weighed. I was told why I needed it done and promptly replied with all of the counter arguments I could. It wasn’t really going anywhere and it was reminiscent of conversations already had.

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So she stopped us and pulled out a piece of paper, telling me we were going to think of a different way of tackling this. I was anxious and stressed and not very receptive to a new idea. She told me that we were going to write a list of thirty reasons why it was good to be weighed by someone from the team. We titled it in a positive way, not limiting ourselves to it being ‘ok’ to be weighed but going fully for it and using ‘good’ and specifying it would be done by the team. Already my brain was feeling a little frustrated that loopholes were being firmly avoided! It was a challenge, I definitely protested that there was no way I could think of one reason let alone thirty. But gradually with a little persuasion, the list began to take shape… the options could be sensible, off the wall or completely ridiculous. Here are a few we came up with:

  • People will stop nagging me to get weighed
  • Meg and Bert (my labradors) get weighed at the vets and enjoy it, so I can too
  • I can smash my scales into a million pieces because I don’t need them now
  • It’s just measuring my relationship with gravity
  • Good to give my scales a break/holiday/weekend break
  • Maybe I’ll enjoy it

And so on…

The list turned out to be a powerful tool. By the end of thirty reasons, I had been through fits of laughter, completely relaxed and actually if I had been weighed straight away… I probably would have been fairly relaxed about the whole situation. By finding thirty reasons that it was good for it to happen, I had a whole list of evidence to counter the negative thought processes that were going on in my head. I had a list of reasons that were quite motivating and I had something that could make me laugh and remind me that perhaps the whole process wasn’t too scary after all. I’ve realised that writing a list to counter my fears can be used in any situation that I’m worrying about or anything I’m struggling to be able to do. And the best thing… if at thirty you still feel anxious, you can always write thirty more.

Finding Hope In Unexpected Places

bestHope is a strange thing. It can be the motivation to keep going when things are hard or the idea that things may one day be different or better. Hope is a hard thing to hang on to, it’s not exactly tangible and it can be easily shattered. But even the tiniest amount of hope can be a really powerful thing. I’ve frequently been told to hold on, with the hope that it will get easier. But I guess I want to be told exactly when that will be… easier said than done I guess.

Perhaps, certainly in recovery, it is much easier to identify and manage if someone has lost hope, rather than working out how much hope they have! Martin Seligman found that if animals were subjected to difficult situations that were out of their control, then became helpless and passive; not wanting to try and escape the situation they were in. Perhaps demonstrating what happens when you lose hope in a situation. For people lack of hope can manifest in many different ways such as; depression, anxiety, lack of motivation or self destructive behaviours. It can be a bit of a downward spiral where hopelessness leads to individuals not wanting to try and change, and therefore the negativity is perpetuated.

Hope is not pretending that troubles don’t exist. It is the hope that they
won’t last forever. That hurts will be healed and difficulties overcome. That we will be led out of darkness and into the sunshine.

Sometimes taking the first step, especially when you feel hopelessness, can be the hardest. If you don’t believe things can change, then it’s totally understandable that it feels impossible to get started and find some hope.

So how can you find hope and break unhelpful spirals?

  1. Break it down a little- sometimes hoping to be ‘recovered’ can be a very tall order. It can feel like you’re trying to get from A-Z without any real idea of how to get there. It’s important to try and allow yourself you work through the process, taking measurable baby steps to find your way. It’s also completely ok if your goal changes, it can be a fluid process which in itself may give you hope.
  2. Show yourself compassion- once you begin your steps, you make have to reevaluate and take a different approach if it doesn’t feel like it’s working or going smoothly. Of course, it’s not going to be a walk in the park, but if it’s too hard you won’t reach the other side anyway. You may just need to change your goal posts and aim for slightly simpler steps. A headteacher once told me that when you write a to-do list, you should start with 2-3 things you’ve already done or know you can complete straight away. Giving yourself the immediate satisfaction of completing something can then spur you on to manage the rest.
  3. Start a gratitude list- I am fairly certain you’ve already achieved a lot in your life. If might not feel it, but think about the little things you have achieved. Reminding yourself that you are in fact pretty amazing can help you to feel hopeful about the future.
  4. Find Inspiration- this could be from people you know, famous people or celebrities, quotes, stories or anything really. Surround yourself with your inspiration and re-visit it daily to help move your mindset on to one of hope.
  5. Find hope by letting go of negativity- starting to let go of negativity, anxiety or depression can set you up to find space for a little more hope in your life.
  6. Think your way to hope- think about the way your life is now and the type of person you would like to be and what kind of life you would have if you were that person.
  7. Gain support from others- if you’re feeling hopeless, sometimes you need someone to help you find hope again. This can be from friends, family or even professionals. Don’t be afraid to ask for help.
  8. Look after yourself- once again, self care is really important here. Looking after yourself can build your resilience and help you manage when you’re feeling hopeless.
  9. Help others to help yourself- sometimes getting a little perspective can help you find hope again.
  10. Be brave- ultimately, don’t give up. You’ve got this, you can do it. Maybe not right now, but you will be able to.

At the end of the day, all you need is hope and strength. Hope that it will get better and strength to hold on until it does.

Breaking The Avoidance

353aad1ef4e8029ad92a66931546e982I’ve definitely been avoiding blogging for a while. I’ve had ideas and at times even made a start on a blog; but then the avoidance breaks have jammed back on again! I don’t think it’s even been intentional, life is just very very busy at the moment.

I’ve completed my second week back at Uni and so far it’s been good… hard and weird but good. It’s funny, I was so stressed with all the what if’s of going back to studying that I lost site of all of the positives. It’s been an anxiety filled whirlwind but I *think* I’m on top of everything… I’m working part time alongside Uni, so I’ve had to juggle my workload and try and keep some time free to destress and really focus on my self-care. I was cycling home yesterday thinking that maybe… just maybe… it’s going ok! I think the negative stressy part of my head is waiting for me to start to really struggle, waiting for the inevitable time when it gets too much. But the reality is that it’s going well and I’m really enjoying it!

Perhaps I’m working towards being in a place where I can let go of that negativity or just notice it as my anxious inner self, acknowledge it’s there and let it float off in a mindful way.

Today I’m aiming to finish my first draft of my ethics form… watch this space for exciting mental health research hopefully coming soon!

I’m not sure what I was aiming to get out of blogging today… I guess I’m hoping to break the back of the writers and perfectionist block so I can get back into the swing of things.

Suicide isn’t a comfortable topic, but that’s why we need to talk about it

TW: this article discusses suicide   

This week a brave young man spoke out about his Mum’s suicide. His name is Garreth Broke, he lives in Frankfurt in Germany and he has recently lost his Mum who took her own life after battling depression for fifteen years. In his post Garreth not only speaks from the heart about his Mum and the things he loved about her but also openly about her 4 serious suicide attempts and countless other times she came close. He mentions facts; 1 in 4 UK citizens will experience a mental health problem this year and more than 6000 people killed themselves in 2013 with suicide rates climbing from 2007 according to the Mental Health Foundation. The overall message of Garreth’s post, which has now been shared over 5000 times, is that we need to be talking when things are tough. 

The scary thing about suicidal ideation is that it can really come out of the blue, people who are thinking of killing themselves are often unlikely to tell anyone that they are planning to harm themselves. I guess the answer is to try and prevent someone from reaching that point by trying to let out some of those feelings early on. 

Suicide isn’t something glamorous and pretty to talk about. It’s scary and devastating but I really don’t think it’s selfish, I think it’s a sign of someone who is so desperate and hopeless and to me needs as much help and support as possible. Please talk to your friends and loved ones about how they are feeling, you might ultimately save a life. There’s no specific ‘type of person’ who takes their own lives, there’s no foolproof way of working out if someone may be considering harming themselves but you might be able to give them the opportunity to tell someone and then be able to help them find the support they need. 

Check out The Self Esteem Team’s Switch on the Light campaign too! 

If you are struggling please seek support from one of the amazing organizations we have in this country like The SamaritansMind or Papyrus to speak to a professional who might be able to help you to see an alternative or manage what you are feeling; or tell someone you trust like a friend, family member or medical professional such as a GP or mental health nurse. 

Above all, please try to hold on to the hope that these feelings will too pass, you just have to try and hold on until the storm clears.