I’m not exaggerating when I say that 2018 has been really tough year. I went into the year high on the news that I have been offered my dream job and my main aim for the year was to buy my own house and live independently. The reality has been very different. By the end of January it was becoming clear that I was very unwell, meaning that I had to turn down my dream job because I simply was not well enough to even get out of bed, let alone work in social services. With my sudden unemployment, I was forced to take on the benefits system, which was utterly soul destroying. My dreams were shattered further when I realised that not only was I too unwell to move out, I also couldn’t afford it.
I know my body better than anyone. The NHS is fantastic and I wouldn’t be alive without it, but the nature of living with rare conditions and being medically complex means that I need to advocate for myself and education medical professionals, because very often, they aren’t taught about the conditions I have.
I have got to fight, even on the days when I’ve lost all hope. Don’t get me wrong, there have been days when all I’ve wanted to do is hide in bed and that is okay. But things won’t ever move forward if I don’t speak up and demand the treatment that I need.
Friendship is a two way thing. Toxic friendships aren’t helpful and I’m better off without some people, as painful as that is.
Not everyone will understand. The nature of invisible illness is that you can’t see it. A lot of the time, I look pretty healthy but that doesn’t mean I am well. People often say that I look well and therefore assume that I’m better or cured. Unfortunately, I’m never going to be cured and just because you can’t see what’s going on inside my body or the amount of pain I’m in, it doesn’t mean that I’m well. Over the years I’ve been given well-meaning, but quite frankly stupid advice about how to make myself better, ranging from eating quinoa, to drinking beer, to following a clean and plant based diet. It takes a lot of effort to not roll my eyes to these suggestions.
My hopes and dreams will change. Unlike most healthy twenty-somethings, I don’t dream of traveling the world or getting a promotion or having an amazing holiday. My hopes are simple: to stay out of hospital and for my other sick friends to be as okay as possible.
I can never have too many books. At the beginning of the year, I set myself the challenge of reading 52 books over 2018. This is one thing that I succeeded with and my book collection is slightly growing out of control.
It’s okay not to be okay
I’m allowed to be terrified. This year has thrown many new things at me, that I never expected. My new normal has taken a lot of adjusting to and I’m still not fully there. Having numerous illnesses that can’t be cured and are likely to worsen is scary.
There will still be good days.
I can’t face things alone. I need people to support me, whether they are family, friends or medical professionals. I can’t fight the shit stuff alone.
I have got to pace myself.
I’m allowed to miss being healthy and I’m allowed to be resentful.
As much as I hate it, medication keeps me alive.
Never underestimate the power of a pair of comfy pyjamas.
My body will change and I won’t always be in control of that.
Being as healthy as possible requires work.
Medical professionals who get it are incredible and I need to appreciate them.
I’m a lot stronger than I give myself credit for.
I’m hoping more than anything that 2019 is a little bit kinder to me and doesn’t throw any more illnesses at me.
Happy New Year to all, keep fighting and know that you’re not alone.
On the 5th July 2018, the NHS will be turning seventy years old: that’s seventy years of providing lifesaving healthcare to a ever growing British population.
As someone with numerous chronic and long term illnesses, I am incredibly grateful for the NHS. I’m not sure where I would be without it – probably in spiralling debt. There are, undoubtedly, criticisms regarding the NHS, but this is not down to the 1.3 million people who work for it, more down to the current state of politics, but this is not the time to talk politics and policies. So many of the people who work for the NHS go unnoticed and unthanked. They work tirelessly to keep the British population healthy. Regardless of health or wealth, we can be reassured that if we fall ill or have an accident, we will receive the treatment that we need.
NHS staff see the best and worst of people. They welcome babies in the world, sharing the joy with new parents and they administer end of life care, ensuring that people die with dignity and that the families are supported, during a time of grief, upheaval and turmoil. They are often dealing with people who are going through trauma and they do their best to relieve some of the pain and anxiety, felt by those needing medical care, as well as the people around them.
Needing medical care isn’t an alien experience for me. In fact, it’s the opposite, thanks to the fact that I am diagnosed with various long term medical conditions. But although I’m more familiar with the inside of my local A&E department and other departments in near-by hospitals, compared to most people my age, the familiarity doesn’t change the fact that it is still a frightening experience. But I can honestly say that I remember every single nurse who has looked after me on those occasions and ensured that I felt as safe and as calm as possible. This is not an easy task when you are overworked, underpaid and often unappreciated.
I can remember the nurse who held my hand during a particularly bad night, during one hospital admission. I was crying in pain, with pain relief not even beginning to lessen it and this one particular nurse sat with me until I was calm and we talked about my life, hopes and ambitions and things that I enjoyed. She told me that she had moved to England from Brazil because she was so desperate to work for the NHS.
I can remember the nurses and occasional therapists who went out of their way to ensure that I was at ease prior to me having surgery at the age of eight. They made me laugh and brought Guinea pigs into my room, as part of animal therapy. They also reassured me post-surgery when I was afraid and wanted my mum.
I can remember the health care assistant who apologised repeatedly when she had to cut me out of a Crew Clothing jumper, when I was on a spinal board, and then suggested that I wore cheaper clothes next time I ended up on a spinal board with a suspected fractured neck and bad concussion. Thankfully there hasn’t been a “next time” but the joking eased the fear.
It’s not just nurses who make the NHS as good as it is. There are so many people who do their job every single day and remain pretty much unnoticed. There are the porters walking miles every single day, making sure patients are where they need to be; from experience porters are some of the kindest and funniest people I’ve ever met. True NHS heroes.
I can’t write about the NHS without mentioning GPs, in particular, my own very wonderful GP. My GP has been my biggest supporter for over ten years. She has fought a near-constant battle for me to receive the correct treatment for my various conditions and has never once given up on me, even when I have very much given up on myself. When you are diagnosed with a rare condition, one of the biggest hurdles faced is the lack of understanding from medical professionals. Yet my GP knows my body as well as I do and has gone out of her way to research and find out more about my conditions, so that she is able to treat me in the best possible way.
So, I’d like to take this opportunity to take everyone who works for the NHS. Thank you for caring.
This post has been written in conjunction with Scope and will be appearing on their website.
This month’s guest post is written by Nattie. Nattie lives in the Midlands with her husband and two children, Grace and Amelie and her family is the perfect example of the wonder of blended families. Nattie works in with a PR company, specialising in event management. Life for Nattie’s family was turned upside down a few months ago, following Gracie being diagnosed with leukaemia.
What can I say about Gracie? She’s 10 years old, absolutely gorgeous, funny, kind, intelligent, an animal lover, a fantastic big sister and a lover of hugs and cuddles. Gracie is also a cancer patient.
Earlier this year, Grace was diagnosed with leukaemia. She had been poorly off and on since the winter and we, along with doctors, thought that it was a lingering viral infection. She was very tired, often coming home from school and falling asleep on the sofa until tea time. On top of this, she was also having a difficult time at school with friendships and she is starting to get anxious about moving to high school in September 2019. Nothing major but Gracie is sensitive and we know from past experiences that she doesn’t deal well with conflict or change, it emotionally drains her.
We were’t too worried. That is until her energy levels dropped further. Her teacher rang us to raise concerns: Grace was falling asleep in school and she wasn’t managing to take part in PE lessons, a lesson that she loved. In general, she was very wobbly and her balance was getting worse. She was sad, something very unlike Grace.
When Grace contracted her fifth cold since January, we felt that enough was enough: our previously healthy little girl was struggling and our instincts knew that something else was going on. We decided to keep her off school for a week. On day three of Grace’s week off school, she had a nose bleed, which would not stop. After the 15 minute marker, I ended up calling paramedics. Gracie was dizzy and faint and as the nose bleed continued, the colour was literally draining out of her. Deep down, I think I knew that I wasn’t calling paramedics just for a nose bleed, there was something bigger going on here.
This view was echoed by the paramedics, who told me, very kindly, that they felt that Grace needed to be in hospital now. Upon arriving, Grace had numerous blood tests and her obs and sats caused the doctors some concern.
After what can only be described as the longest wait I’ve ever endured, a paediatrition told me that I might want to consider calling my husband. I explained that he was due to pick up my younger daughter from school but would be here later. My world shattered a bit when I was told that David needed to be here now. Gracie was also asking for her daddy, in between sleeping and being confused. I rang David and told him to get to the hospital right now and then called on my fantastic friend, Essie, to ask her to collect Amelie from school and look after her until I knew more.
David arrived at the hospital and we were taken into a private room. This was the point where we were told that our beautiful little girl had cancer.
The prognosis was “good” we were told. If a child is going to get cancer, the cancer that Grace was suspected of having was the most easily treated, with high chances of going into remission.
In the space of a day, our lives went from talking about phonics and the girls’ homework, arguing over who was going to clean the guinea pig’s cages, telling the girls to eat their carrots, CBBC programmes and ballet classes to talking about chemotherapy, Hickman lines, Picc lines, steroids, bone marrow, blood transfusions and side effects.
Grace was very muddled when we told her. She understood that she was extremely poorly and would need to stay in hospital to get better. The extreme nature of her treatment plan was lost on her and we made the choice to only tell her what was completely necessary. She asked if her hair would fall out and we told her that it probably would. Grace new about the Little Princess Trust, thanks to Laura cutting her long locks a few years ago and she decided that she wanted to shave her hair ASAP and donate it. Her next question broke us, she asked in a tiny voice if she was going to die.
A ten year old child should not be having to think about their own mortality. David and I explained that all of the doctors and nurses were going to do everything possible to make her better and all she had to think about was fighting as hard as she could.
In the weeks since Grace’s diagnosis, she has had six blood transfusions and two platelet transfusions. She’s had three lots of bone marrow taken, four general anaesthetics, one of which was to place a line into her chest. She’s had more blood tests than I can count. She’s had different sorts of chemo, including having it injected into her spine, which made her very unwell. She’s been on steroids and is on a cocktail of medicines to try and fight this beast. She’s spent time in ICU with suspected sepsis and has been so so sick. She has spent most of her time in hospital, only having half days at home here and there.
Side effects have included sickness and fevers. Her month and throat have been covered in large ulcers, making eating almost impossible. Grace has had headaches which have made her scream with pain. The combination of treatment and being bed bound has caused serious muscle wastage so now our once energetic and sporty little girl is confined to a wheelchair, on the rare occasions when she manages to get out of bed. The steroids made her angry and emotional, on top of making her sleep deprived and exhausted.
Then there was the hair loss. Nothing prepared us for that, even though we knew it would happen and had talked about it. Grace dealt with it better than us, simply rolling up the hair which had come out during the night and then saying “I think we should shave it because I don’t need my hair right now.” So that’s what we did. Grace has been rocking hats since then.
Amelie is struggling. At the age of seven, it’s a huge change to get used to and due to infection risk, she’s only been able to see Grace a handful of times. Our friends and family have been taking turns to move into the house, to look after Ame, to try and maintain some normality.
Ame and Grace’s school have been wonderful, fundraising to help us out as a family. Grace’s class write a letter to Grace every week to talk about what they’ve been doing. Even though she’s not at school at the moment, they still want her to feel included. Ame’s teacher, along with teaching assistants are giving her 1-2-1 time every day, to give her the time and space to talk. The nurses at the children’s hospital, where Grace is being treated, are also helping us to support Amelie and are helping her to understand what is happening to her big sister.
I’ll be honest, my reason for writing this is to ask for help. If you can give blood, please give blood. It takes less than an hour and will literally save a life. Prior to Grace becoming ill, I hadn’t ever stopped and considered how important blood donation is. The simple fact is, Grace would not be alive right now if it wasn’t for the wonderful people how have already donated blood and I wish that I could thank every one in person for saving my little girl’s life.
As a family, we are scared right now. It physically hurts seeing Grace so unwell and it hurts seeing Amelie so sad and confused about what’s happening to her sister. Forcing your child to go through procedures which you know are going to cause pain goes against everything you believe in, as a mother. But the alternative is so much worse. I hate seeing Grace in pain and scared. I hate hearing her cries but I hope that one day, she will understand that it was all necessary to make her better. We know that we have a long journey ahead of us but our unconventional little family will only get stronger during this fight. We are Gracie’s Gladiators and we will not give up the fight.
I’ve spoken on numerous occasions about Blue Skye Thinking, a charity set up in memory of Skye Hall, who was diagnosed with a brain tumour ahed five and sadly passed away less than a year later from radio-chemo neurotoxicity. The aim of Blue Skye Thinking is to support the research and treatment of childhood brain tumours and ultimately, to give children like Skye a better chance of survival. It is also a way of ensuring that Skye and his courage is remembered; he truly was an amazing little boy.
Having got to know Skye’s family pretty well, I have become more and more passionate about raising as much money as possible for the charity. I recently promised Sally (Skye’s mum) that I wouldn’t ever stop talking about Skye or Blue Skye Thinking. The latest appeal for Blue Skye Thinking was launched a couple of weeks ago. Aim Skye High is encouraging people to come up with wacky and crazy fundraising ideas, with the goal of raising £50,000. The more wacky the better, because wacky = publicity and that is crucial in continuing with the fundamental targets of Blue Skye Thinking.
My previous fundraising efforts have seen me abseiling down the Spinnaker Tower and having eight inches of hair cut off to be made into a wig, by the Little Princess Trust, to help a child who has lost their hair through illness. People who know me won’t ever let me forget who emotionally traumatising I found having my hair cut off, the only thing that prevented a full on meltdown was knowing that my hair would be helping a poorly child and in reality, they needed my hair a lot more than I did.
So when I told Gill (hairdresser, general hero and gossip queen) that I have come up with my latest fundraising idea, I can forgive her for looking somewhat terrified. I quickly reassured her that my hair would be remaining on my head and that this idea is less traumatic for all involved.
The 5th November would be Skye’s 8th birthday and for a while, I have wanted to do something to mark this. When the Aim Skye High appeal was launched, things slowly fell into place and my latest idea came about.
To mark Skye’s 8th birthday, I will be swimming 8 kilometres, to raise money for Blue Skye Thinking. The actual time/date/location are yet to be confirmed and whilst emotionally, this isn’t such a huge challenge, my various health conditions will mean that this is going to be bloody hard work. I’m not entirely sure how well my body will cope…or if it will cope. I’m training hard and can comfortably swim 2km but I still have a long way to go.
Am I scared? Yes. Very.
However, Skye fought so damn hard against the biggest cancer killer in children so, if I can share even a tiny bit of that strength then I know that I can do this.
This is where I start begging, because I can’t do this without you. The money won’t be helping me but it will be helping children like Skye and families like the Hall family and the other families who are currently going through hell.
If you would like to donate, you can do so here or via Just Giving text, by texting LCBS48 £2 to 70070 to donate £2 (or enter whatever amount you wish). Every little helps and it will make a huge difference to the children diagnosed with brain tumours, as well as their families. Give a child a better chance of survival and continuing with their childhood, please.
If you’re unable to donate with dollar, I’m hoping to have a little cheer squad and your cheers might be the one thing that stops me from drowning.
I wrote a blog post a few weeks ago about the importance of acknowledging when things are good or when life is going well. The same can also be said about the opposite, when things aren’t going so well and when life becomes an uphill battle. In the case of acknowledging the bad times, a lot of it relates to self care and knowing how to look after yourself and if necessary ask for help.
The last couple of weeks or so have been hard. There hasn’t been a specific trigger, I was conscious that starting therapy could cause a wobble, but I have been incredibly lucky to have an understanding therapist who hasn’t pushed me into talking about things that I’m not ready to talk about, meaning there isn’t any anxiety about appointments. The first two sessions progressed in quite a clumsy way, broken up by me filling the awkward silences by saying “well this is awkward.” Any silence to my ears is awkward, simply because I don’t like it. But I’m learning to accept it.
I just feel sad. I don’t know why. I feel very anxious. I don’t know why. Things feel a bit hopeless and life is a mixture of sleeping, working and medical appointments. And by sleep I mean artificially induced sleep because I am incapable of naturally sleeping for more than two hours which certainly does not improve my mood. A few weekends ago, my artificially induced sleep extended from Friday evening to Monday lunchtime, punctuated by doing a wee, feeding my cat (only after he had woken me up by chewing my hair) and trying to stomach a meal. The most frustrating part was, I was still exhausted, mentally and physically.
Anxiety has dipped in and out of my life since I was a teenager. It appeared at all the predictable times: exams, exam results, my fear of mice, grandparents being ill and personal illness. I could deal with that, anxiety was to be expected. Anyone who can walk into an exam hall with their shit totally together and not plotting on blowing up the headquarters of AQA or Edexcell deserves a champagne toast.
More recently my anxiety has manifested in other ways and isn’t so “normal”. Leaving the house is hard, unless I’m going to work or for a medical appointment. My pulse rate shoots up, breathing becomes rapid, I get sweaty and feel dizzy. These are calmed down by driving, but on arrival at my destination, I feel like I’m going to collapse, so I have to hope for the best.
The thought of going to sleep scares me because of nightmares.
I’m having to double and triple check things at work, almost obsessively to make sure I haven’t made a mistake. I have a routine which I need to follow and when following that, my pulse rate shoots up, breathing becomes rapid, I get sweaty and feel dizzy.
I’m scared that people hate me. This ordinarily wouldn’t bother me, I can’t ever please everyone and the reality is, some people would choose not to have anything to do with me, which more often than not, is reciprocated. I’m scared that I’ve done or said something really awful and can’t remember. I’m especially scared of my mum hating me.
I’m anxious about finances.
I’m anxious about the future.
I’m anxious about my health.
I’m anxious about being anxious because it’s taking over my life. I miss my friends and I feel guilty that I don’t feel in a place to be able to go out to the pub and do the stuff that a non-anxious me would do.
Whilst I undoubtedly feel really rubbish at the moment, there are things that I can do to help myself. They can be trivial things or something with a bit more clout. A previous mental health team referred to these things as protective factors, which I guess they are, but they are also ways in just looking after myself, even when that feels impossibly tough.
Spending time with my cat makes me feel happy and safe. Watching him play makes me laugh and hearing him purr is one of my favourite noises. Cuddling up with him in bed and putting the TV one is one of my main distraction techniques. I don’t have the concentration to focus on a film (unless it’s something like Lizzie McGuire) so I’ve settled for watching all five series of Outnumbered, on a loop, or making my way through Absolutely Fabulous. I love reading and always have done, but the same applies with concentration, so I have downloaded some audiobooks and can listen to them, whilst curled up in my den-like bed. Dawn French narrations are particularly good.
I like to go swimming and rely on old fashioned endorphins to do their job and cheer me up. A post-operative infection has now cleared up so tomorrow I can have my first swim in months!
Basic self care is crucial whatever your mood, but perhaps more so when you feel shit because looking shit is not going to improve anything. It’s something that I really have to force myself to do and I won’t lie, my consumption of dry shampoo sees a dramatic increase. My legs are a bit more hairy lairy and I’m less fussy about my makeup. Fortunately I have good skin so can just about get away with only my eyebrows being sorted and some mascara slapped on.
Forcing myself to see friends, whilst initially is leads to almost unmanageable anxiety, is worth it in the long run, especially when I see friends who understand me and never fail to make me laugh. A wonderful friend is coming to stay this weekend and I’m sure there will be plenty of laughter. During times when socialising really does feel impossible, I know that I need to make an effort to maintain some form of communication with my friends going. Making phone calls is a big no for me, so I rely on texting. And who wouldn’t want to receive a text about one my students turning up to school dressed as the grim reaper on home clothes day?! Scintillating stuff.
Most of all, and this has come with time and many learning experiences, I need to know when to ask for help. I think that is the most vital part of acknowledgement. I can’t always face this alone, nor should I have to. I have people around me to make sure I’m alive, safe, coping etc. I have people who strategize with me, to help me stay above weather, or at least float in a dignified way. They can’t wave a magic wand and cure me and that is okay. Maybe not tomorrow, but it will be okay.
I’ve talked before about Blue Skye Thinking and my quest to raise £1000 for them: whilst less dramatic than abseiling down a building, here is the most recent fundraising round-up!
On Saturday 19th March, I did a joint fundraising event for Blue Skye Thinking and the Little Princess Trust and had my long locks much shorter. Although getting my hair cut has, so far, been the least demanding challenge in my quest to raise £1000, psychologically it needed the most psyching up before hand. People close to me will know that I suffer from an eating disorder and body dismorphia and my hair is hugely important in my self confidence and esteem. I actually underestimated how anxious I was going to feel and by the time I arrived at the hairdressers, I wanted to be sick. A lot.
The sickness eased slightly when Sally, Jesse and Flynn arrived, in Blue Skye Thinking attire, and I tried to put my nerves to the back of my mind and focus on why I was doing it. Not only does the money raised support the treatment and research of childhood brain tumours, my hair will hopefully form part of a wig for a little girl who has lost her hair, in her fight with cancer.
So, months and months of hair growing was about to come to an end; as we all stood around and measured my hair, I realised how short it was going to be. Jesse did a fantastic job in asking for donations from other people in the hair dressers; when I came up with the idea of having my hair cut off, my first thought was to ask Jesse if he wanted to help in cutting it. What four year old is going to say no at the chance of taking centre stage with a pair of sharp scissors?! And we all had a good giggle at how silly I looked, with my hair divided into four sections.
Once the seven inches of hair had been hacked off, there was literally no denying how short my had was. I felt naked and all I could think was how was my hairdresser going to make my hair look okay again? To be fair to the wonderful Gill, I shouldn’t have doubted her.
It’s different, that’s for sure. It’s shorter than I expected. I cried. But I’ll get used to it and it will grow. Meanwhile, all I can hope if my hair makes a child going through something impossibly tough to feel a little bit of happiness.
I am approaching my mid-twenties. I’m probably going to have some form of quarter life crisis at some point. There is all sorts of pressure to settle down, have a proper job, start a family, and whilst I do want all of that, I don’t want it right now. If I am reminded once more about the need to provide grandchildren in the family I will scream. It’s my body and my choice! Settling down couldn’t be further from my mind and any settling down thoughts which I have usually involve scrolling through Instagram on the hashtag #minilops and finding the cutest ginger bunny and wishing it was mine. Making a phone call stresses me out, I cry inside when I have to pay a bill because it feels like richer people are stealing money off me and I think it’s okay to buy a thick, fluffy jumper which is two sizes too big in the middle of July because it looks pretty. I then wonder how I end up with little to no money. I am not ready to adult.
A year ago, my undergraduate student days ended and I still miss and pine for those days. Those days when it was accepted that the day (or two days) after a night out were completely wasted by sitting on the sofa with drool coming out of my mouth because I was so hungover. Those days when I had roughly three to five hours in university a week and the remainder of the time was usually spent in bed and definitely spent in my pyjamas or onesie. Those days when my housemate and I couldn’t be bothered to cook or walk the five minutes down the road to Waitrose to get food to cook, so we went to The Best Chip Shop ever and had chips for dinner. They were good days.
To break up the monotony of life, I’ve put my thinking cap on and come up with thirty things to do before I reach the age of thirty. Credit goes to my friend, writer of Something in the Way She Moves who wrote a blog post on the forty things she wants to achieve before she is forty, as I got the idea from her.
1) Complete a masters degree.
2) Work in a role which supports young people with mental illnesses.
3) Travel the world.
4) See the Northern Lights.
6) Have children (hopefully).
7) Have my own house.
8) Be financially stable.
9) Sing on a West-End stage.
10) Sky dive.
11) Bungee jump.
12) Complete a half marathon
13) Complete a triathlon.
14) Raise £1000 for Blue Skye Thinking.
15) Write a book.
16) Publish an article for Huffington Post.
17) Meet some of the people who I have met online and thank them in person for all they have done for me.
18) Cuddle an orangutan.
19) Complete the North Wales zip wire.
20) Teach young people to not be ashamed of who they are.
21) Become and MP and fight for what I believe in.
22) Learn basic Polish.
23) Thank every single person who has made a difference to my life.
24) Go to a festival and not spend the entire time grossed out by the toilets.
25) Visit all of the the seven wonders of the world.
26) Live for a week without internet, TV, phones etc
27) Go to Wimbledon men’s final
28) Leave a note for a stranger in a public place.
29) Learn how to take a compliment without turning into an arrogant arsehole about it.
30) Fall in love, deeply, properly and unequivocally.