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

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

Father’s Day

Mother’s Day was hard… that was to be expected. But Father’s Day? I didn’t think that would really be of any significance. Turns out I was wrong.

I was just sort of going about my day earlier – standard Sunday stuff; cycle to a shop, attempt food shopping, feel proud for actually buying some salad and not adding to my ever expending washi tape collection etc. I was feeling a little more anxious than usual but wasn’t really sure why.

On my cycle home, I realised it was a Father’s Day thing. It’s not uncom218 (2016_04_23 16_52_32 UTC)memon that I dream about Dad dying, or Dad having cancer. For a long time after Mum was diagnosed I panicked at every text or call, terrified that someone else close to me was ill or had died. I’ve got a bit better at that now which is handy because I don’t think it’s healthy to panic innumerable times a day. The dreams still pop up every now and again but I don’t normally worry about it during the day any more, apart from today.

It feels odd being a daughter with only one parent. It feels odd having a Dad without a Mum. My Dad is great in pretty much every way, but it’s weird having a Father’s Day without a mother. I don’t really know what to do or say. We focussed so much on Mum while she was ill, I can remember every Mother’s Day, but I don’t remember Father’s Days, I don’t remember what we used to do…

Today has prompted lots of anxiety, a few tears, and the majority of the day spent buried under blankets, crocheting and watching various comedy programs. It caught me by surprise. I’m not alone in it, though. I’m in a Facebook group with other young people who have, or had, a terminally ill family member. I posted in there earlier today and a number of people responded with similar feelings.

Grief is a funny thing and there’s no rule book for it, no logic, no handy flow chart to guide you through. You just have to take each day as it comes, and sometimes that means spending the day buried under yarn, engrossed in TV, and I think that’s okay.

 

 

Campus Society Article: What it’s like caring for a terminally ill parent when you’re at university.

I remember the day Mum stopped being able to walk. I had to help her from her bed to her chair and wheel her to the bathroom. She could still wash herself at that point and once she’d finished I wheeled her back, found her medication and fixed her some lunch. I remember it so clearly because it was the last time I had some quality time alone with her.

I didn’t know that I was a carer until I’d been caring for over a year. Mum was diagnosed with terminal cancer during my second term of university. She died at the start of my final year.  I knew that none of my friends had a terminally ill parent, but that was about as far as my thinking went. It was only when I met someone from the charity York Carers who started asking me questions like “Do you worry about your Mum when you’re in lectures?” that I began to realise how different my student life was compared to my peers.

I didn’t think I was a carer because I still lived at university.  I hadn’t realised that a lot of things I did were things that my friends didn’t do. Like going home more a lot more often and checking in on my family every day. When going home, most of my friends would be waited on hand and foot, but even though I did still take my washing home (so much cheaper than on campus), I normally did it myself, and often ended up cleaning and cooking a fair bit too. I also didn’t appreciate the toll of emotionally supporting my family and worrying about not just Mum, but also about my Dad and brothers and how they were coping.

My caring responsibilities started slowly and increased steadily by the time Mum died, I hardly realised how far my life had shifted from that of a normal student. To begin with, it was just a matter of visiting home more often to see her. But over the course of Mum’s illness I’ve had to do many more things including visiting her in hospital, helping her drink, fetching her medication, and moving her around the house.

When she was in hospital, I occasionally missed lectures and in my second year I had to postpone my summer exam to give me enough time to catch up on all the work. I’m the eldest of three children, and the only girl, so I definitely felt some responsibility for managing the house while Dad was in hospital, transporting Mum’s family, or working.

Perhaps the biggest area of my uni life being a carer impacted was my social life. I could never commit to anything too far in advance for fear of letting people down and when I was at uni I often spent time catching up on work instead of being out with my friends. To begin with my friends were amazing. I lived in halls and we’d often crash each other’s rooms. I remember one friend arriving in my room with chocolate fingers and a film one night when I was having a particularly bad day. But in second year, as we moved out of halls and I had to go home more often, it became harder to keep those friendships up. The more time I spent at home or in hospital, the more distant I felt from uni and my friends there. I drifted from them as their lives moved on and mine stayed stuck in cancer-land. It wasn’t their fault, and whenever I do contact them or see them around they’re really supportive and still invite me to things. It’s just how it was.

Other young adult carers have shared similar experiences. Through the power of Twitter, I found two other carers with stories a bit like mine. Maariyah, a first year student at the University of Portsmouth, has been caring for her Mum for years and like me didn’t realise she was a carer for a long time, “I didn’t actually realise I was a carer until I got older and realised my role” she told me. Jane, a master’s student, has been caring for her sister for most of her life and now cares for both of her parents, too. Both Maariyah and Jane live at home and travel into university for their lectures, which in itself gives them a very different university experience from their friends, but one I instantly
recognised.

Bethany, a first year student at the University of Bedfordshire, has cared for her Mum from a young age. She lives at uni too but, like I did, travels home often.

Both Jane and Bethany mentioned how difficult it could be to socialise. Having less time to see their friends might be an obvious one, but they also spoke about not wanting to cancel plans at short notice, letting their friends down, and Bethany said “because  of my caring role I don’t like to go out much and haven’t found the confidence to have a social life at uni.”

Thankfully, all three carers receive support from their local carers organisations and Jane is also supported by her personal tutor and a lecturer. Talking about her lecturer she says “she’s been a star, I honestly believe that without her I would’ve definitely dropped out of uni. She’s been my rock throughout the last few years, she’s always there for me both academically and personally.” These supports are lifelines. Helping carers to manage the various strains on their time and providing them with occasional light relief. I can relate to this, I’ve been incredibly well supported by both my academic supervisor and my college welfare team who have constantly gone out of their way to help me out. Once I discovered I was a carer and found York Carers, I began to receive support from them too which has been invaluable.

It is estimated that there are 290,369 carers in the UK aged 16-24 but the true number is unknown because so many young adult carers may not even recognise themselves to have a caring role. Out of those who identify themselves as a young adult carer, 25% won’t tell their college or university about their caring role. It isn’t quite clear why but often it can be because they don’t know the support that could be available to them, or they are worried about the reaction of their tutors. Under the Care Act, 2014, every carer is entitled to support to help them to carry on with their life. This includes the right for every carer to receive a carer’s assessment, assessing the needs of themselves and their family to make sure that they receive the support they deserve, such as help with the caring itself, assistance with travel costs, or enabling the carer to have some time away from their caring role so that they can do something else for a while.

Despite the difficulties caring can throw up, most of us wouldn’t want our responsibilities taken away. I got a sense of pride from caring, I love my families, and would rather care for them myself than have a relative stranger do it. Being a carer, I learned a lot. I learned about the issues facing a person with limited mobility, both in their house and when trying to get out and about. I discovered how non-wheelchair-friendly many places are and found a new appreciation for anyone wheelchair-bound. I learned how to support a disabled person around their home – and about the various gadgets available to help with that. I also learned things about myself, mainly that I’m more resilient than I ever thought possible.

Every carer needs support. There’s no reason that being a carer should stop you from attending university or college, if you want to. If you think you might be entitled to carer support, go to carers.org to find your nearest carers centre.

This article originally appeared on Dorms, the online magazine of Campus Society, check it out here.

Dear Humans of Facebook

Dear Humans of Facebook.

Tonight, I noticed that my blog from last week had spiked in Facebook likes. I decided to try and find out why, so I could thank whoever had shared it.

I found the post on a Facebook page with almost 300k likes. It’s an American page and is not a charity or organisation I’ve come across before other than briefly on Twitter, but they clearly do some great work.

They’d posted it as a recommended read, and initially when I saw it, I was delighted! There are over 1200 likes and over 250 shares. I then began to read the comments, of which there were about 40. There are some people who were clearly hurt by my blog, or by life, who were angry with me, or cancer, or life (or all three) and they responded by writing their feelings (which they’re completely entitled to do) on this post.

I’m going to be honest, some of those comments really hurt me. They made me cry. They made me question myself and my writing.

Since then, I’ve had a wonderful army of friends and family message me. Some of them have responded to some of these comments, most of them have just made me laugh and cheered me up. I’ve also reasoned with the ratio of negative to positive responses. I’m fine now and I guess whenever you post things on the internet, you open yourself to criticism, but I’d like to take the time to respond to some of the sentiments expressed, because I will feel more at peace with myself once I’ve done that.

To the people telling me I’m selfish

I can totally see where you’re coming from and this is something I worry about every day. Am I being selfish? Should I give up everything I’m doing and go to stay with Mum? Should I leave uni, quit my jobs and just go home?

That was my first instinct, yes, but I’ve spoken about it with my family and we don’t believe it’s the right thing to do. We need normality. We don’t know how long Mum has left and when she was first re-diagnosed it could well have been years. I can’t spend years by her side – firstly, we’d kill each other, secondly, what good would that possibly do?! Mum is completely on board with this, one of the first things she said upon waking from the coma she was in was to tell my brother and I to go back to uni. Heck, she carried on working herself until she was in a coma. Furthermore, how are we supposed to afford to live without working? I think we’d struggle.

With regards to my writing about how I can’t plan or I can’t do certain things I might want to do, I’m not writing this to complain. I don’t feel a sense of injustice about it at all and I’m in no way angry or resentful of my Mum for being the reason I can’t do these things, I’m simply trying to explain to those who’ve not been in this situation how it impacts each area of my life.

To the people telling me I’m whining

You will find I don’t do whining. I do getting on with life. Some people actively try and get me to talk about things related to Mum and I actively don’t, unless it involves sorting something out or trying to understand something, because I’m a very solution-focused person and I don’t see the point in whinging or whining. I blog because it’s a lonely situation to be in and others are in that lonely situation to, and I have had messages from people thanking me for helping them feel less alone. I blog because there is so little out there for young adults who have parents with a terminal diagnosis, and I want to use my voice to change that. I blog because I find it cathartic.

To the person who told me I can’t spell

I’m English. We use ‘s’ rather than ‘z’ when writing the word organise. I’m sorry if that offends you too much to read my blog.

To everyone who referred to me as a caregiver

Yes, I am classed as a ‘Young Adult Carer’ according to the local carers charity, something which I’m still coming to terms with. But please remember that first and foremost, I am a daughter of an amazing woman who is dying in front of my eyes due to a really crappy disease. I am hurting, I am coping, I am trying to come to terms with things.

To everyone who told me I’m not dying

Firstly, you know nothing about my life so you don’t actually know that. That aside, I’m not dying, but my Mum is. Someone who I’ve known all my life. I’d argue that a part of me is dying because she’s been such a huge influence on me and yes, some of her will live on through me, but equally some of me will almost go with her.

To the people who told me to ‘get my priorities straight’

Mum is my #1 priority. Everything in my life is organised around that. Next week I’m working on a residential – but the staff are aware of my situation and there is a backup staff member in case I have to go home. My supervisor at uni is aware of my situation and when necessary I go home rather than staying at uni. I have missed lectures and I have had to use mitigating circumstances. I’ve had to move an exam to summer, and therefore revise all summer, because I missed some of uni to stay with Mum. I have lost touch with friends because I’ve been home rather than going out and socialising on weekends. I’ve missed their birthdays, their concerts, their celebrations and it’s amazing any of them have stuck by me to be honest! My Mum is my priority but I also have a life to live.

To the person who said they hope my Mum uses her strength to smother me while I sleep

Did you actually read what you wrote? (Also I sleep upstairs when at home and Mum can’t currently use the stairs so hopefully I’m safe for now!)

To the people who said I see my Mum’s illness as a nuisance

Yup, that’s cancer for you! It is a damn inconvenience and a pain the backside for all involved.

To the people who said I need a reality check

Every single time I see my Mum disappearing into her armchair, every time I see her knitting baby cardigans for the grandchildren she’ll never meet, every time I see the ice cream tub of medication in the bathroom, the hospital bed in the lounge, the ‘get well soon’ cards all around the house… I get a reality check. I have seen my Mum almost die and come back to life. I have fed her when she couldn’t move her arms, wiped her face when she could hardly speak, talked with her when she was seeing a dinosaur on the wall. I’ve had a lot of reality.

To the people who said ‘I’m making it all about me’

I’m writing from my point of view. I can’t write from my Mum’s point for view (or my Dad’s or my brothers). I write personally from the heart about how I’m experiencing the ups and downs of this situation. Please refer to the response about whining for why I write this blog.

To those who say they hope Mum never reads my blog

She reads whatever I post. We chat about it, we chat about a lot of things as a family. When I’m unsure about something I ask her before posting it, and I asked her before starting this blog.

To those who ask me to think how my Mum is feeling…

…having brought me up for years

My Mum is proud of me. My Mum is incredible and I hope that some of that is reflected within myself. My Mum loves spending time with me and I love spending time with her. I help around the house as much as a possibly can when I’m home (and frequently do things when I’m not, whether it be supporting other members of my family or buying suncream).

…when she doesn’t have long left

My Mum has a strong Christian faith and is incredibly peaceful. I admire her faith and her strength so much, I think it’s amazing.

Finally, to everyone who asked what it’s like being me (normally in a slightly less polite way!)

It’s damn hard a lot of the time, but also wonderfully brilliant at times because I have a loving, caring, family and some wonderful friends. I am so grateful to have so many people around me who care for me so deeply, and I never take that for granted. I am lucky that I have had time with my Mum to learn more about her, to develop our relationship, to ask her questions. Yes, I struggle and I suffer. I frequently wake through the night with thoughts, worries and flashbacks. I cry often. I get stressed. I don’t want to do into things any further then that because I select what I choose to publish online. I can assure you, though, that I am both deeply hurting, and deeply grateful for the situation I’m currently in.

I’m sorry this is so long, but I wanted to address as many points as possible. Thank you to anyone and everyone who has read it through. Thank you to all those who’ve sent me such lovely and heart-warming messages and comments. Thank you to everyone who continues to support me and thank you to everybody who has shared my writing.

Involving Young People

Involving young people is something that I get asked about a lot. People often want to know how they can involve young people in things and get them to have their say. However, sadly, although I have found that some of these people do genuinely want feedback, opinions and ideas from young people, many do not. They say that they want inclusion and that young people are ‘the future’ and ‘the decisions are going to effect them’and all of the other cliche lines that get thrown around all the time. However, how much they actually believe in these statements I’m not sure.

As young people, we are a hassle and we are annoying. This is because, we want things done, we want them done properly and we want them done quickly. We want to see a change. We have energy, and drive, but we need you to help us channel them into something productive. You can’t leave us with false promises because we will remember and we will tell you when you haven’t delivered. All of these things are annoying because it means that you actually have to do something about the issues rather then gathering data, promising changes and leaving the paperwork on a desk to gather dust.

We are also up to date with the latest technologies, generally speaking, and will expect you to be to. Facebook and Twitter are everyday communication tools. You will have to learn to use these sites, if you want to get young people involved. However much you may hate these sites or disagree with them, sometimes you just have to do something you don’t like.

We want to be listened to. Do not invite us to come and sit at one of your meetings to ‘give a young person’s perspective’ and then ignore everything we have to say. Or make us feel unwelcome. What good does that do?! In fact, it probably does more harm then good, as it’s likely to put barriers up between the two age groups rather than achieving anything. If you want a young person present at your meetings, you need to involve them, and you need to seriously listen and take on board what they have to say. Do not discount their ideas or see them as useless without giving them as much thought as you’d give to any ideas submitted by other people around the table. Furthermore, don’t have a discussion group focussing on how to get young people involved, without a young person featuring as part of the group! We are experts in knowing how young people communicate and what issues they’re facing, because we are young people. So it’s daft trying to guess from an adult perspective when you can just come and ask one of us.

Please don’t treat us like aliens. We are not strange creatures from outer space with unidentified flying hormones floating around (I know, I know, this may be a shock). We are humans too(!) and we want to feel like we’re part of your group. We want to feel like one of you, not like a zoo animal put out for observation. Treat us as one of your own, but also, remember that we are only young and sometimes this may affect our judgements on things, and in some instances we may need a bit of care and understanding as certain issues may affect us more then they affect you.

Finally, help with travel costs can go a long way (unintentional pun!). If you can cover our travel costs or offer us a lift home, it will make the world of difference and help to keep us involved. We are skint, as a rule, and travel is normally very expensive. So something that might not seem like much to you will be a massive help to us!

So, to summarise,to involve young people, you need to listen to what we have to say. When I say listen, I don’t mean in one ear and out the other listening, I mean properly listening. You have to treat us with respect (this of course does go two ways), and take us as seriously as anyone else. Once we feel that we’re being listened to, and that something is actually being done about issues that effect us, you will start to see change! One thing young people do have more of then adults, is time. So, if we want a change to occur, and you want change to occur, with the right guidance and support, young people will help you move mountains.

Homeless Not Hopeless!

So, Team V Leeds campaign 1 comes to a close. It’s been an absolute whirlwind with obstacles along the way, high points, low points and occasionally don’t-know-whether-to-laugh-or-cry points!

In numbers, we have gathered 190 signatures for the centrepoint petition to stop the government from cutting housing benefits for under 25s, we’ve had 65 sofa surfers, and raised £28.70 for Nightstop, Leeds. We organised our back up stunt in 3.5 days. We have gathered 108 followers on our Twitter and 85 on our Facebook.

So all in all, I’d say it’s been a success. But what have I learnt? What have I got out of it?

I fell into this campaign head first. When I say fell, I mean fell. I did not jump, I did not dive, it was not graceful, I tumbled and bumbled my way through, often feeling completely out of my depth, far too young, incredibly disorganised, and like I had no idea what I was doing! I found this an incredibly difficult position to be in. I am notorious for planning everything in my life to the second, yet here I was heading into 8 weeks of not knowing quite what was going to happen!

One of the first things I learnt, was that however much I glare at it, if I have a message on my phone it will not stop flashing until I deal with it! Getting used to being ‘on call’ was weird. I’ve lived in the stone age for the last 18 years of my life and all of a sudden, people were reporting to me, relying on me, looking to me for answers and expecting me to give them a sensible response! Emails stopped being the odd thing you fire off every now and again and are now a new form of oxygen. Phonecalls stopped being a once-in-a-blue-moon ocurance and started being an every day part of my life.

The second thing I learnt, is that although I may reply to emails at the speed of light, others don’t. Sometimes, you have to ring, text, email and facebook someone before your message will get through. Sometimes, even then it won’t get through (that’s when you tweet them!).

I faced so many challenges which I never dreamed I would encounter in the run-up to the stunt and event. Firstly, finding a cheap, sheltered meeting place on a weeknight in Leeds is apparently virtually impossible! Moving on, I always thought that charities would love support from a younger generation and would be grateful for any promotion that we could give them. Turns out this wasn’t true, although some were incredibly helpful, others were incredibly unhelpful and some didn’t even get back to us at all. I had to learn how to delegate. This was a huge learning curve for me, adapting my thinking accept an incredibly good result… that wasn’t quite what I’d pictured in my head!

When our first stunt had to be cut short due to weather conditions, I was absolutely gutted. We’d spent so much time and energy on everything and worked so hard. I don’t mind admitting that I got home, went to bed and cried with disappointment and frustration. We’d worked so hard, the weather had happened… and what did we have to show for it? I felt my confidence and optimism sinking. I didn’t want to reply to any emails or see what was going on online because I felt such a failure and like I’d let everyone down.

However… one of my wonderful volunteers sent round some emails and managed to book us a new pitch in a shopping centre for 4 days later! The four days were absolutely manic. We had to plan the new stunt, print new leaflets and spread the word again. We faced more obstacles that we weren’t expecting. A particularly memorable moment is when we were frantically texting, we’d finally found a sofa and could get next day delivery, but it needed signing for and we were all at work so wouldn’t be at home to sign for it! If we’d not had that sofa, our entire idea would have crashed and we’d be stuck. But Team V has taught me to think quickly and act fast. We managed to get the sofa delivered to my work place and all was well again!

The second stunt was amazing. We came into contact with a huge variety of people. I spoke to someone who’d been sofa surfing for 30 years. That just hit me so hard. 30 years with no home. What sort of a life is that?! We should not have that sort of situation in a civilised society. I heard stories of promising young talents who’d died from TB due to living on the streets. I heard from others who said that without housing benefits, they’d probably be in prison. I also heard some incredibly negative responses from people who were very set in their ways and were not listening to anyone else’s opinions. People who said that these people should ‘just get a job’ or that ‘under 25s aren’t important’. However, the thing which I think shocked me the most, was how many people told me they ‘didn’t have time’ to sign the petition or looked at us in disgust. I’m sorry, but how long does it take to write your name on a piece of paper?! Our society is so selfish and so rushed. If people don’t think that something concerns them, they often just walk on by.

The event tonight was brilliant, though not without it’s hiccups! (Don’t you just love technology!) We heard from a variety of people and saw some hopes and dreams of those who’ve experienced homelessness in the past. It was amazing for me to see that people from ‘real’ organisations had come to listen to us! It was a bit of a turning point for me, looking at what we’d managed to pull together as a team. At one point, I was looking around for someone to tell me what to do next when I realised that I was running the event! Very surreal. I hope that everyone was able to take something from sharing others stories and experiences. The feedback we got was very positive and hopefully we’ve managed to make a bit of a difference in the Leeds area!

During this campaign, I’ve learnt so many things. The practical things, such as how to add up a column on an excel document, manage a budget, write a cheque, use a phone and run a meeting, the personal things such as how to empathise with others, how to overcome disappointment and pick myself up again, and how to believe in myself enough to lead a team… and the downright bizarre things… for example, a hawaiin hula skirt quite suits me!