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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3 thoughts on “A Message From Your Chronically Ill Friend

  1. Well I love you, whatever state you’re in and whichever form our friendship takes. I feel insanely lucky to have you in my life and will always support you. Even if I’m a bit unpredictable too. Let’s face it, non of us are perfect and if we were, life would be pretty dull!

    What a courageous post! Xxxxxxxx

    Like

  2. Just read this. What a fantastic post. Sorry, you had to be awake in the middle of the night feeling poorly to write it. All your friends love and cherish you and know that you are there for them always as they are for you. Big love and warm hugs to you. xxx

    Liked by 1 person

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