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.

New Year, new… NOPE!

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If December is the most wonderful time of the year, then perhaps… for those who are suffering from/recovering from eating disorders, January becomes the worst! I may be being a little negative, but as the festive season comes to comes to an end it feels like the world is consumed with incessant pressure to diet. Of course, January is traditionally the time for a new you, new life, new personality… you name it, apparently it needs to be changed. I’m feeling somewhat fed up of seeing a multitude of instructions to sign up to the latest diet program, take diet pills, cut out, restrict, fix and yet I feel frustrated that I have to try and ignore it all.

I am in recovery. It’s a slightly confusing, muddly journey… but I’m hoping that my general trajectory is in the right direction, towards the life I wish to lead. A life that is free from the controls and constraints on my being. It’s not new news that I’m battling my eating disorder; I completed an inpatient program, am back to work and Uni and living independently. I am a healthy weight and have been now for a number of months. I eat normally a lot of the time. But it doesn’t mean the struggles aren’t still there and unfortunately this time of year is quite a tricky one.

After the indulgence of Christmas, there’s bound to be discussions of shifting the Christmas weight and detoxing after the merriment of the festive season. I understand that it’s impossible to avoid anything that might be triggering and that I must learn to manage those times when my eating disordered beliefs are activated… but it would be nice if the media around me wasn’t quite so reflective of some of the unhelpful beliefs that my illness clings on to. Perhaps we could think about other ways to start the new year afresh that don’t need to revolve around food, weightloss and unrealistic goals! I have a feeling I have a little more worth than the number on the scales.

It would be really helpful to avoid the topic of dieting. I’m fairly well read in all sorts of weightloss and have probably tried a majority of the different ideas that are being shared at the moment. I don’t mind if you decide to take part in them, but it’s really hard to listen to the type of talk that comes with these kind of topics… such as bodyshaming of any kind and the strong links to being a better person if you’re losing weight. As I am recovering, it’s quite important for me to try and let my body find it’s set point weight, without trying to influence it using my eating disorder. At times it feels like a scary and impossible task, but it’s something I’m trying hard to do! So for that reason I won’t be partaking in this type of talk… I will be popping on my blinkers and trying to keep my eyes on the prize that I’m heading for… the chance to live the recovered life I deserve. So perhaps we could all think about ways of loving the ‘you you’ve got’ rather than trying to find a new one this new year!