illness

Have ‘a year’

~ Naomi ~ 4 Comments

2016 is ending, which many will be delighted about. There’s a weird thing that we all do where on one day out of 365, we look back at the previous 365 days and judge ourselves. Lots of people are posting achievements, happy moments, sad moments, words of wisdom, and hopes, dreams, and goals for the next 365 days.

I read somewhere that:

‘it’s okay if the only thing you did today was breathe’.

I would like to extend that to this year.

It’s okay if this year you ‘just survived’. It’s okay if you didn’t achieve your goals or complete all of your plans. It’s okay if you didn’t graduate, if you didn’t change the world, if you didn’t get the promotion you wanted or finish a race you wanted to run. You have still achieved something this year – you have smiled, laughed, and loved. You have brightened someone’s day, made someone smile, and made a difference in the lives of those around you.

If this year you have been in hospital, had a family member in hospital, received a new diagnosis, lived with an old diagnosis, taken medication, had an operation, had tests done, or put up with a mind or body which seem less than impressed with being alive, then I’m proud of you.

If you have had a baby, got a new job, graduated, moved house, passed an exam, received a promotion, got married, got engaged, learned to drive or raised money for charity, then I’m proud of you.

If you have taken a picture of a sunset, felt the wind in your hair, cuddled a puppy, taken the bins out, watched TV, read a book, hugged, text a friend… done anything at all that involves being alive, then I’m proud of you because at the times it can feel like there is hatred stirring all over the world and things can feel very bleak, and if you can continue to enjoy and appreciate the little things, and remain kind in the face of all of that, then you’re doing well.

I hope that 2017 is kind to you all. I hope that it brings you the things that you want. I hope that it provides you with family times and time with friends. I hope that you receive love and laughter and that you treat yourself with all of the kindness and compassion you deserve. I’m not going to tell people to have ‘a good year’, because I think that can feel out of reach a lot of the time. Instead I’m going to say have ‘a year’.

This is to those of you for whom Christmas doesn’t feel like Christmas.

~ Naomi ~ Leave a comment

This is to those of you for whom Christmas doesn’t feel like Christmas.

I’m sorry that you are hurting.

I know that the ‘merry’ in ‘merry Christmas’ can feel as though it is mocking you.

When the whole world feels as though it is laughing, smiling, and celebrating, but those are the last things you feel like doing.

Crowded rooms can feel the emptiest.

Hugs can feel like they’re not quite tight enough, not quite long enough; never quite reaching you.

You smile but it doesn’t reach your eyes, and your own laugh seems distant and far away.

The pressure to be perfect can press down on your chest until you can no longer breathe and the number of people around can make your head spin. Occasionally you feel your mask slipping and you have to run to a bathroom and fix it before anybody sees.

Everybody wants to know what you’ve been doing all year and what your future plans are. That can be hard to answer when you’ve spent so much of the year in doctors appointments, hospital visits, and counselling sessions. It’s hard when your test results are medical rather than academic, when so many of your peers are patients or services users not students or colleagues.

It’s okay if your biggest achievement this year is survival. Fighting against the crap in your head, the illness that is determined to infiltrate your body, or the general difficulties that life insists on constantly throwing your way, is huge. It’s hard, brave, and courageous to continue to get up and dressed every day (or most days), when circumstances seem determined to destroy you.

Maybe you’ve lost someone this year. They might have died, or might have just exited your life. Maybe you lost someone last year, or the year before. Time doesn’t heal it, it just gives you longer to attempt to get used to it. Sometimes it makes it harder because the longer they’re gone, the more they’ve missed. Christmas can feel like it’s shining a light on the space that they’ve left behind.

It’s okay to miss them. It’s okay to grieve for them. The fact that they have exited your life doesn’t mean that you have to erase their existence entirely.

Be kind to yourself this Christmas. Let yourself have some time off. It’s absolutely okay to cry if you need to. If you want to laugh, then laugh – nothing in your life cancels out your right to feel happy. Let people in; if you can, and if you want to. Let them hug you. Let them be at the end of the phone. Let them text you. Let them listen. Let them be there.

Maybe you’re feeling just fine. If so, then please: try to be considerate this Christmas. Please understand that not everyone will be happy, not everyone will want to share copious amounts of food, not everyone will be able to manage being around large groups of people.

Christmas is only one day, but it can be incredibly stressful for those of us who don’t feel able to tackle it. Mental illness, physical illness, or other things, can all affect people’s ability to ‘Christmas’, and more often than not, we’re not trying to be difficult, we just can’t do it.

I hope that you all have a peaceful Christmas this year. I hope that it’s as stress-free as possible. I hope that you get a little time with your family or friends and that it’s as enjoyable as it can be.

I’ll leave you with some Winnie the Pooh wisdom:

“It’s snowing still,” said Eeyore gloomily.
“So it is.”
“And freezing.”
“Is it?”
“Yes,” said Eeyore. “However,” he said, brightening up a little, “we haven’t had an earthquake lately.”
― A.A. Milne

Illness vs Death

~ Naomi ~ 4 Comments

People don’t realise that has horrible as Mum dying was, it’s her illness which is having such a huge effect on me at the moment.

It was seeing her slurring and seeing things on the walls, unable to eat or walk, and then getting lost in Leeds in the dark on a Friday night because I was so upset I didn’t look where I was going and before I knew it I was stuck somewhere not-so-safe. Before that I was so confident at being out and about but now if I’m out in the dark I am so anxious and it’s only made worse by noise.

It was seeing the woman I’ve always seen as so strong, capable and ‘big’ unable to even reach up to her face to scratch her cheek… having to feed her water through a sponge and wipe her face for her. Then seeing other women, who I’ve always seen as role models, crying. Leaving the room and crying. Turning away and crying. Breaking down unable to speak. Having to remain strong for them, because they needed it.

The last stages of her illness were hard, really hard… but it was the sudden deterioration 8 months prior to that which really changed everything. It was so sudden and so unexpected.

I miss my Mum a huge amount, and there is a lot to come to terms with, but it’s the illness I’m struggling to get past. I get images in my head and I can see them in front of me when I’m watching TV or walking in the street or whatever and they won’t go away. Sometimes it feels like I’m back there. I haven’t slept in my bedroom at Dad’s house since that week.

I don’t know how to deal with it or where to go with it. There are no answers or solutions. I don’t even remember it all properly (yet?) but it’s just always there.

10271626_747664941922103_6494238436515259520_nIt was seeing the woman I’ve always seen as so strong, capable and ‘big’ unable to even reach up to her face to scratch her cheek…

It’s Horrible Feeling Ill, and Worse When You Can’t Even Text Your Mum.

~ Naomi ~ Leave a comment

This weekend, I haven’t been all that well. This isn’t unheard of or anything – throughout Mum’s illness, I had a couple of periods where I fell ill. Whether it be a standard bug going round, leaving me bedbound and anti-food for a few days, an exciting late-night A&E trip with an asthma attack, or something else, I’ve become somewhat of an expert at developing odd symptoms over the past couple of years.

Whenever I was ill, I either told Mum afterwards (in the case of something short like an asthma attack), or told her but refused to let her visit. Mum’s immune system was often compromised over the course of her illness; aggressive chemotherapy does that to a person. I made sure never to do anything which could put her at risk of catching something. And even if I was ill with something that wasn’t contagious, I didn’t want to put her through the stress of seeing me ill.

This was so hard. All you want when you’re feeling rubbish is for your Mum to give you a hug and remind you there are better days ahead. To hold you together when it feels like things are falling apart… to stroke your hair, or bring you a drink, and remind you that it won’t last forever.

So keeping Mum away wasn’t ideal, but I would text her to update her on how I was doing. She was generally pretty unsympathetic, actually, unless I actually felt like I was dying (I think it’s probably a symptom of being a palliative medicine consultant). Maybe unsympathetic isn’t the right word, maybe matter-of-fact would be closer to the mark… but she would always reply, usually with kind words, happy thoughts, and often something to make me smile or laugh.

This weekend I’ve pretty much been restricted to my bed with headachey, dizzy, blergh-ness. I’ve felt pretty low in myself; I hate not being able to get out of the house, or even being able to get up and do stuff. I’ve been too exhausted to even go downstairs the majority of the time. Having wifi in bed has been a bit of a lifesaver to be honest because at least I’ve had a bit of contact with the outside world.

On Friday night I started crying because I felt so rubbish and all I wanted was Mum. I’m really lucky to have some amazing women in my life who frequently fill in as ‘stand-in Mum’ when a situation calls for it. But I think being ill is one of those times where you just want your ‘real’ Mum and no-one can fill that role, however amazing they may be and however much they might want to or try to.

I’ve stopped talking about Mum as much generally. I don’t think people want to keep hearing about it, and after a time you run out of things to say or words to explain what you’re going through. There are only so many times you can say ‘I’m hurting and it’s crap’, before even I get bored of hearing myself say it. I’m running out of words and losing the ability to express how I’m feeling, because more often than not I simply don’t know.

I know, though, that when I’m ill, all I want is Mum, and the only thing that sucks more than her not being there in person, is not even having her at the end of the phone.

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