A Message From Your Chronically Ill Friend

fair

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.

22279164_10155262155474531_724460314_o

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.

 

Advertisements

Unite For World Cancer Day

Today is world cancer day, a day uniting the world’s population in the fight against all types of cancer. The tagline this year is ‘We Can. I Can’ and encourages everyone in the world to get involved and take their part in reducing cancer globally.

I think Dame Helen Mirren in Calendar Girls described the importance of fighting against cancer much better than I can…

 

‘I want to raise money in memory of a man I loved, and to do that I’m prepared to take me clothes off for a WI calendar… because there are some things more important than council approval. And if it means that we get closer to killing off this shitty, cheating, sly, conniving bloody disease that cancer is, oh God, I tell you, I’d run round Skipton market naked, smeared in plum jam, wearing nothing but a knitted tea cosy on me head and singing ‘Jerusalem’.- Annie (Calendar Girls)’

 

Cancer is the most horrific illness, it steals the lives of those who have it and I’ve watched it continue to take the lives of those left to survive the loss of a loved one. It’s been many years since our family was sadly struck by cancer, but years later the impact is still there. They say that things get better, and in so many ways they really do. The sadness and feelings of loss are still there, as with the loss of any loved one, but they do feel less like they are at the centre of your mind all of the time. There is more space in your head to remember the happiness you shared with that person rather than focus on the sadness and illness.

 

But you are left with the sad memories and I think it is so important to remember this. Sometimes you can slip into thinking that everyone must be fine now, as everything happened such a long time ago, but the effects of cancer still exist many years later. So please stop and think about people who may have those difficult days and need a little extra thought and comfort.

 

Cancer can leave you with sad and painful memories, but it can also rob you of the memories and moments you were expecting to have with that person. The landmark moments in your life, where you wish they were with you or the gatherings and celebrations that feel a little emptier.

 

This world cancer day I will be uniting with the people who have suffered and beaten and survived cancer, the families who have suffered great loss and will find a way continue to live with the memories of their wonderful loved one, everyone who is fighting the battle against this shitty, cheating, sly, conniving bloody disease and all those who are waging a war against it through fundraising, research and supporting others.

 

This blog is dedicated to my Uncle Gerard and Granddads Jack and Tom; whose memory is always with me, guiding me through life; and to my wonderfully strong and resilient family who I would be completely lost without, especially my Mum, sister and Aunties (the strongest women I know).

 

img_1937

Farewell 2016!

It feels strange to be coming to the end of another year. It doesn’t feel like a whole 365 days since I was writing at the end of 2015. To be honest this year feels a little like a blur of events, all sorts of challenges hitting us one after another! 2014 was the year I began to properly recover, 2015 was the year those skills began to be put to the test and 2016 feels like the year my recovery path has been truly rocked; leaving me having to work really hard to keep myself on the straight and narrow.

My end of the year blog needs to have a special space for my wonderful Mum, who has shown so much bravery and strength, especially in the last six months. She is my rock and I want the world to know how much I love her and admire her.

2016 was my final year of University… finally! After a long 5 years, I finally graduated. It wasn’t without it’s stress but it was a milestone I was very happy, despite all odds, to have reached. I threw myself straight into work and got promoted to lead my little team, which was very exciting! It’s been a year of successes and changes as well as adventures of all sorts. I went to Paris, on my first cultural exchange, which was totally amazing and introduced me to some amazing people. And of course, the best part of the year… when Stitch finally moved in with me! Well, I think seeing my wonderful friends Sarah and Debbie finally married was pretty amazing too!

This year has reminded me of the importance of all of my people (who aren’t all pictured, but I hope you all know who you are!!); I’ve vowed to spend more time with family and friends and all of the people I love and care for. Events of this year have shown me how precious everyone is, and how you really can’t predict the future. Sometimes things come along that throw your whole world upside down; and these are the moments that remind you of the importance of spending time making memories and enjoying time you have. You never really know what might come around the corner. I am so grateful for all of the support I have had from my amazing family and friends over the year.

2016 feels like a challenging year. Both personally, within my family and in the world around us. We are in a place of change and uncertainty and these are the times when looking after yourself and those around you is of utmost importance. Life is so very precious and that’s the most important thing, especially when the world is a little unstable.

Here’s hoping for a new year filled with good health, happiness and lots of exciting adventures.

Happy new year xxx

Best-Happy-New-Year-Pictures.jpg