This month’s guest post is written by Alice. This week is carers awareness week, so it seemed only right to hand over to Alice. Alice is ten years old and lives with her mum Chantelle. She has been a young carer since the age of six, as Chantelle lives with ME/CFS, joint hypermobility and pernicious anaemia. You can find Chantelle on instagram.
A young carer is someone who helps someone else in their family, unpaid, when someone has any type of physical or mental illness, physical and/or mental disability or misuses substances such as alcohol or drugs. This could be a parent or a sibling. A young carer could help with household chores, help the family member with getting dressed or help lift or carry items. They can help out around the house but also help out when out, for example helping with shopping. I help by mum out by helping around the house by doing things like the washing up and vacuuming. I also help my mum out by making drinks or helping to get her medication.
The best part of being a young carer is knowing that I’m helping my mum out and that I’m making her life a bit easier. I am also part of a young carers group in Gloucester so I have made new friends. As well as this, I also go to a group where I am able to play games and do crafts. It’s nice to be around others who understand what it’s like being a young carers and having a relative who isn’t very well.
The worst part about being a young carer is when other people don’t understand what a young carers is when they don’t understand my mum’s illnesses. People don’t always understand when we can’t go out or do the same things as my friends.
Lockdown as a young carer has been up and down. I’ve got to spend more time with my mum and have enjoyed home schooling but we haven’t always been able to go out as my mum hasn’t been well enough and she can’t drive very far without getting very tired. We have enjoyed doing things at home though, like arts and crafts, puzzles and playing in the garden. When Mum has a rest I like to play with my Lego or teddies or draw pictures of monsters! I know how important it is to let mum rest so this is part of our afternoon routine.
My mum and I are a team and life as a young carer is just normal to us.
If you are a young carer, or know someone who is, and are in need of support, you can find information from Young Minds and The Carers Trust.
You are eighteen and it should be the most exciting time of your life. Unfortunately, right now, you are finding life hard. You are in chronic pain and you don’t know why and you’re spending a lot of time in and out of hospital. But you’re going to get through it and it will make you even stronger (we love a cliche). You think that your A Levels are going to destroy you. Spoiler: they don’t. You won’t enjoy them, you might even cry during them but you’re going to get through them and you’re going to go to university and start the best three years of your life.
Don’t take life for granted and don’t waste time on the wrong people. You will meet the wrong people and part of life is learning lessons from the bad times. Don’t hold on to anger, resentment or jealousy because it will take over. Try not to put your self last, even though doing the opposite seems completely unnatural to you. The things that bother you now will not bother you in the future, trust me on that one!
Hold your good friends tight. The friends you value now won’t necessarily be in your life in the future, but know your self worth and know that it is okay to move on. Laugh and cry with your friends, stay up late and drink bottles of wine. Don’t pressure yourself into going clubbing because it really isn’t as great as people make out.
Believe in yourself! Know your own worth and what you can offer. Don’t be silenced by people who are louder and more confident than you. Try not to compared yourself to other people, everyone is walking their own path and there’s no point comparing your step one to their step five. You’ll get there, in your own way.
Learn how to be independent. Don’t rely on other people for your survival, be happy on your own and be happy with other people.
Dating the wrong people is not a mistake, but staying with them, because you feel that you have to, is. Be your own person and don’t change because a man wants you to. You will make mistakes, in relationships, in life, with decisions but you will learn from those mistakes. Mistakes are okay. Self talk, problem solve and don’t regret what went wrong. It went wrong for a reason.
Asking for help is okay. There will always be people there who are willing to help you. This is your time to learn, but that doesn’t have to be done alone. There isn’t an age limit on success, now is the time to explore, live your life, make decisions (good and bad) and don’t beat yourself up if it goes wrong.
Make memories. Take photos.
Stand up for yourself.
Find and enjoy whatever it is that makes you happy.
Respect yourself and respect others.
Save money and don’t spend all your student loan in one go when you get to university. You’ll be thankful for this when you’re not poor and hungry.
Your mum is [nearly always] right. She will tell you things that you don’t want to hear and she will nag you until the point that you want to explode but she does it because she loves you and cares for you. Never forget that and try and listen to what she says, she is the person that loves you the most and will not turn her back on you.
Also, always drink some water before bed after a night out. You’ll thank yourself in the morning.
Unless you’ve been living under a rock over the past few weeks then you will have heard about how a girl’s underwear was used as evidence in court, during a rape case. In the trial, the defence lawyer told the jury “you have to look at the way she was dressed. She was wearing a thong with a lace front.”
The 27-year-old man was found not guilty of rape shortly afterwards.
This case then led to a series of protests about how wearing a certain type of underwear does not equal giving consent.
As a teenager, I was sexually assaulted. If you want all the explicit details about what happened, then you’re in the wrong place, because this is not the place to share them. I find it hard to speak openly about what happened, I have spent years blaming myself and analysing events, trying to work out how it happened and what I could have done differently.
But here’s the thing: I did not consent and just to make it really clear, my underwear did not consent on my behalf. When I was at university, someone said to me that I needed to consider how my behaviour and actions and what I was wearing will have encouraged him. That broke me and it was confirmation of everything that I had tormented myself with. However, I’m now at a point whereby I can recognise that my clothing did not play a part in what happened, I was wearing jeans and a jumper and even if I had been wearing a short skirt or a top showing my cleavage, that would not have been consent either.
Likewise, I know that my behaviour did nothing to encourage him. But again, had I been performing a strip tease and then changed my mind and firmly said “no” my behaviour still wouldn’t be consent.
I was not drunk. I had not been taking drugs. I was stone cold sober, fully aware of my surroundings and I was not wearing a thong. Using the argument that someone is wearing a thong and is therefore consenting completely bypasses the fact that you can’t see a person’s underwear until their clothing has been removed.
Some people would like to think sexual assault is just a result of miscommunication, especially if the victim has some tie to the perpetrator and believe the perpetrator to be incapable of doing such a thing. Let’s put it very simply: unless a person clearly says “yes” to any form of sexual contact then you can’t assume and go ahead with sexual acts.
Likewise, asking a person if they were under the influence of alcohol doesn’t then mean that the assault was justified. By asking if someone was drunk, you’re asking if they were openly making themselves more vulnerable and therefore “asking for it.”
Anyone who has experienced a sexual assault knows how damaging victim blaming can be. Being asked what you were wearing or how you were behaving or even worse, why you didn’t fight back is so harmful. Only last month, women in London were being warned not to wear headphones or use mobile phones because of a number of sexual assaults. Yes, you need to be aware of your personal safety, regardless of gender and sexuality, but the only people who are responsible for sexual assaults are the perpetrators. Headphones don’t rape women, nor do their outfits or undwear or dark streets or clubs or alcohol and drugs or parties.
Don’t get me wrong, the people are carry out sexual assaults are in a minority and it is not a case of all men are bad. Women can also be perpetrators but we don’t see men being warned against wearing headphones. The reason that rape culture remains such as issues in the 21st century is because rape is still prevalent and sexual violence is normalised and excused in the media and popular culture: a women’s underwear being used as evidence in court is a perfect example of this. Women’s rights and safety are being disregarded by the very people who are meant to protect.
Women’s rights are human rights, and the blame has got to be shifted from women who suffer sexualised violence or assaults to men who inflict it upon them. People are told that they wouldn’t have been attacked on the street if they weren’t walking alone, almost as if it was an inevitable event. That isn’t okay.
In the years since I was sexually assaulted, I have swung from blaming myself to being able to acknowledge that it was not my fault and then back again. Sometimes I feel utterly repulsed by myself, other times I feel repulsed by him. I’ve spent years in counselling and therapy, trying to come to terms with what happened. I can talk about the facts, but not the emotional side of events. But the thing is: I did not say yes and fundamentally, that was not respected.
It’s been a while since I had anything to say about universal credit. Mostly this is because I haven’t felt well enough to battle the broken system and for the most part, it hadn’t been causing me any issues, personally, so my feelings and views on it have been forced to take a back seat.
That was, until this past month. I check my bank account regularly because I don’t trust the benefits system to continuously pay me without any issues. When I checked my bank account a few weeks ago, I realised that I wasn’t paid my last universal credit payment, meaning that I was very overdrawn. It’s been an expensive few weeks with birthdays and various other things so my outgoings were higher than normal but that still didn’t explain how I was so massively overdrawn.
I’ve always been very careful with my money and budgeting was a skill that was instilled into me as a teenager. Finding out that I was overdrawn caused a whole new level of anxiety but I pulled myself together and went to the job centre to ask where the hell my money was at.
If you’ve been a regular follower of the universal credit sage, you’ll know that my experiences at the job centre have been less than positive: I’d like to say that this time things were different but that was not the case. I explained, very calmly, to the work coach that my payment hadn’t gone in and as a result, I was overdrawn. I kid you not, the work coach shrugged in reply and told me that “these things happen”. There have been admin issues over the past few weeks, which has meant that not all payments have gone out on time. Admin errors happen, what I am more frustrated about has been the sheer lack of communication, so I had no idea that this was the case.
I told the work coach, again, that I was overdrawn as a result of the payment not going on and was told that I would benefit from seeking advice from the Money Advice Service. The Money Advice Service is an organisation established with cross Government party support, that provides free and impartial advice on money and financial decisions to people in the United Kingdom. It is a really useful service, but not a service that I require at this time, because when my payments go in, I am very able at managing my own money. It’s very hard, however, to manage you’re money when you’re not receiving the money in the first place.
I thought that things were taking a more positive turn when the work coach asked me if I needed vouchers so that I could access the food bank. The situation that I’m in means that actually, I don’t need them, because I eat very little due to gastroparesis, and the supplement drinks that I have are on prescription. This is where it gets interesting: the average person will spend between £15 and £20 per week on food shopping. The job centre were offering me a £5 voucher, to last me a month. That is not enough to cover even the very basic amounts of food that I am able to eat.
This left me in a somewhat desperate situation. By the time I got home, I was in tears because of anxiety and felt pretty ill, in general. With my mum’s help, the situation was de-escalated and we agreed that she would lend me some money to help me until my next payment date.
The end result has been that I had a double payment on my most recent payment date, so financially, I’m back to where I should be.
Universal Credit makes people vulnerable. You’re constantly at the mercy of an admin system that may or may not work. And when it doesn’t work, things can go really wrong. People can so easily end up in rent arrears, which can put their housing at risk. Mortgage repayments can be missed. Bills don’t get paid. So many people expected that Universal Credit would be a Universal Failure, however the scale of the failure really is shocking. It has cost four times as much to run per person as predict, at approximately £700 per claim. A fifth of claimants’ payments have been delayed and it is pushing unsustainable burdens onto local authorities to pick up the pieces when it does go wrong. Food banks, churches and charities are having to support increasing numbers of people, yet despite all of this, we are told that we are too far along with the process now, for it to be reversed. Universal credit hasn’t been rolled out across the whole country yet, so all these failures are set to increase further by 2023, when the rollout is set to be completed.
All these reasons are why I want to be working and not living off the state. Ten months on from the start of my experiences with universal credit and I still feel like a failure.
Being diagnosed with a health condition, be that short term or long term, can make you re-evaluate your life and what you value as important. If you had asked twenty year old me, before diagnosis, I would have told you that my priorities focused around education, work and being self reliant. At that age, I was just starting my PGCE degree in primary education and I was very much striving to be an outstanding teacher. And I was, but as I became more unwell, being an outstanding teacher was coming at the cost of me constantly fighting infections, being really unhappy and stressed, not having a life outside of university and placements. But ultimately I was left feeling like my best would never be good enough, because my best was slipping because of my health.
After six gruelling months of teaching training, I made the decision to leave my PGCE degree, to focus on my health. At the time, it was a tough decision to make and it came down to how unhappy I was, more than considering my health, but as the months after university progressed, it became more and more apparent that my health wasn’t stable enough to cope with the demands that teaching expects of you. I still miss the idea of teaching, since I can remember, I had wanted to be a teacher so I felt very lost in a world where I was directionless.
Fast-forward a few years and whilst I might miss the idea of teaching, I am so glad that I stopped training before I was forced to stop. Since then, I have left another job because of the demands on my health, much of it due to working shifts and not being able to form a decent routine or get enough sleep. I thought that having official diagnoses would mean that managerial staff would be more understanding over my physical limitations, as well as the other odd things that my body can do as a result of EDS and its friends. I was perhaps naive in that thought: having a piece of paper stating that I have EDS doesn’t automatically ensure that people understand life with a chronic illness, more so when it is invisible.
Earlier in the year, I talked about being offered a job in children’s social services, in the early intervention team. It was my dream job and something that I had been working towards since leaving university. I had to kiss goodbye to that job because of how unwell I’ve been and I’m not going to kid myself into thinking that one day I will be able to go into that line of work. I really do hope that one day I can return to work but realistically, it won’t be in early intervention work because my body won’t cope with the demands, hours and stresses from the job. It’s not just my own health or life that I have consider, I need to think about potential families I would be working with. They need continuity and that’t not something that I can offer.
Similar applies to my inner dream of working in the police force. For all the reasons that I’ve stated about, it’s not a practical line of work and let’s be honest, I wouldn’t even get close to passing the medical tests.
I now spend my days writing, reading, sleeping and sometimes I go a bit wild and sit in the garden. I have to plan my life around when I have medical appointments to try and ensure that I’m as well as possible to attend them, but chronic illness is unpredictable so even the best laid plans go wrong when it comes to attending appointments. I speak to friends every day. But I still feeling lonely, even though I’m not alone.
I’m probably making life with chronic illnesses a bit shit and yes, at times, it is. But there are positives, even if they aren’t glaringly obvious.
I’ve met some really wonderful people who also have chronic illnesses. We are an odd bunch; we don’t do the conventional things like go to the pub or go shopping all day. You’ll probably find us in pyjamas, watching rubbish TV or having a group nap. But that kind of support is invaluable, as is the understanding. We are unshakeable, nothing is too gross to talk about and we can symptom share without sounding like we are losing the plot. Our medical knowledge is extensive: why ring 111 when you can consult a spoonie friend?
I’ve also developed a new gratitude for the days when I’m well enough to do something. Planning things takes a lot more effort and energy. Days when I can spontaneously leave the house and few and far between but when I am able to, it feels amazing and it leaves me feeling like a normal twenty something woman again.
Younger me imagined that I would be a teacher and whilst that hasn’t happened, I do feel happy being able to dedicate more time to writing and raising awareness about chronic illnesses. I’ve been given opportunities to write articles for charities or other blogging platforms and was recently nominated for two WEGO Health Awards, for best in show: blogging and rookie of the year. You can find out more and vote for me here.
I’m getting opportunities which I would not be able to follow up on, if I was working, which is exciting and nerve-wracking at the same time.
That doesn’t take away the uncertainty or the fact that some days are just shit, but I find it is so important to try and focus on the things which are positive and make life easier to contend with. Health anxiety isn’t ever going to go away, scanxiety isn’t ever going to not be there and as much as I wish for it, I’m not never going to be 100% healthy and stable. I can’t go on week long benders but I’m a pro at watching a whole box set in a day. It’s the little things that make up life.
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.
As the title suggests, I think I’m having a quarter life crisis. I’m in my mid-twenties and as I’ve said before, I’m really not okay about the fact that I’m closer to 30 than I am to 20. I don’t know if this sudden existential crisis is circumstantial and related to my life turning upside-down due to illness or if it ‘s something else. Either way, I am not okay! Surely I should have my life sorted by now, has being a functioning adult passed me by or am I still learning?
I’m not really one for making new year’s resolutions. In fact, I tend to avoid them because without fail, a few weeks into January, I’ve either given up or forgotten about my newly turned leaf and I don’t need any more leverage to feel rubbish about myself. Anyway, 2018 came around and I set myself two very serious resolutions: number one, I will read 52 books, one for each week of the year and number two, I will move out. In my previous job, I had managed to save a fair amount of money towards goal number two and as January rolled around, I was on Rightmove more often than I was on Instgram (hello proper adult) and had formulated a nice list of things I would like in an ideal house – a hot tub featured but then I got realistic.
Then the health hurdle came along, I had to stop working and slowly but surely, I’m losing my independence due to my declining health, becoming more reliant on people around me. Whilst I might be working my way through 52 books, my resolution of moving out has definitely been put on the back-burner.
Which leaves me to the very pressing question of: what in the name of God am I meant to be doing with my life?! What is the reason for my mere existence? I’ve realised that much of my life used to focus around work, it gave me a purpose, something to get out of bed for and formed part of my identity. I feel very lost without it. With the exception of my last job, my work identity was the elongated “Miiiiiiiiiiiiiiiiss” from children and teenagers and I’m not sure who this new non-working Laura is. So, I’m facing a metaphorical crossroads of trying to work out what my reason for existence is. I don’t mean that in an emo-esque way, it’s more that my nice little life plan has got very messed up and I haven’t got a clue where by life is going now.
And I feel incredibly frustrated about the above, which makes the situation worse.
The older that I’m getting, the more that I am pining for my university days. I miss being a student. I miss having four hours of lectures a week, rolling out of bed at 12pm without judgement, walking to the fish and chip shop in pyjamas and rocking up to university with a killer hangover and hair so back-combed that I needed to cut the knots out post Halloween celebrations (sorry Clare that you had to witness that three years running…). I miss everything about my three years at university, I loved the learning and the city that I lived in and I have friendships that I’ll treasure forever. But what if that’s as good as it gets? What if I’ve lived the best years of my life without realising it and only have a degree to show for it? I say only a degree, but y’know, ultimately I have a fancy bit of paper and a lot of debt. Twenty year old me thought me definitely though that I would be a proper, functioning adult by the age of twenty-five. Hell, I actually thought that I would be married and have children. Let’s all have a little chuckle at that thought… Sorry twenty year old me, but you won’t be smashing life like you had imagined.
I want to be that proper grown up that naive twenty year old me thought that I would be, however my bubble of safety that living at home provides is pretty cushty. For a start, I can stay at a friend’s house for a few nights and not need to worry about putting my cat into a cattery, which is a relief for him and for me. My mum can also change my bed for me when I’m feeling particularly rubbish and I have zero shame in admitting that. But, I probably should try that proper grown up thing sometime soon. I managed when I lived on the other side of the country.
I constantly want to escape. This varies between escaping on a lovely, planned holiday (ideally Iceland or Australia please) and packing a bag and just disappearing for a while. A secluded cottage which limited phone signal but decent WIFI for Netflix is preferred. But rational me knows that running away from life’s problems doesn’t work, the problems come with you. On this note, I am torn between wanting to travel the world and “be free” and have a very belated gap yah, to reminding myself that I’m not a teenager anymore and that I should probably make some attempt at trying to settle down and try and make a success of my life. Or at least sort my health out a little bit.
Talking of life’s problems brings me to social media. Now, I’m not stupid, I know that what we see on Facebook etc is like viewing life through rose-tinted glasses: everything is perfect. Obviously that isn’t the reality but I can’t deny that I have a mini freakout whenever I see another engagement post or another baby post. Friends, don’t get me wrong, I’m all the happy for you, don’t mind me as I sit in my corner with a tub of Ben and Jerry’s wondering how long it’s acceptable for me to go without shaving my legs. Just going to remind twenty year old me again at this point that I won’t be smashing life, as I imagined.
Music is a very big part of my life but even that is another factor in my questioning my potential quarter-life crisis. I’m not sure if I’m okay about the fact that mere children are achieving number one singles. Meanwhile I’m being kept busy by plucking the one single dark hair that insists on growing on my right boob. I mean, I could have a number one single, I’ve just never tried.
Now, obviously, at the moment, I’m not drinking. Given all the health dramas, that wouldn’t be very wise (we will ignore the one evening when I drank a bottle of WKD in bed and actually felt tipsy…alcohol it has been too long!). But, when healthier me was able to drink, the ID drama was another potential quarter life crisis point. Part of me resents having to show ID to buy alcohol, because I am clearly over 18, however I resent it even more if I don’t have to show ID. What do you mean that I look over 18?! I moan about this, but I recently purchased a 15 rated film and the shop assistant had the nerve to ID me for that. Irony was that she was probably only eight years old. Oh honey.
Surely I can’t be the only person to feel like this? Maybe the twenties, for everyone, are about sorting your life out…hang on in there nineties and millennial babies, we’ll get there. Fist bump.
You learn a lot about yourself and the world when you get diagnosed with a chronic illness. As someone who was a relatively healthy child, I never once thought that my life could change so drastically. In the three years since my formal diagnosis, there have been a lot of ups and downs and I know that the roller coaster that is chronic illness is going to carry on for the rest of my life.
I am not obligated to do everything that a healthy person does. Put simply, I can’t. That is something that I’m still learning: I still push my body beyond what it is capable of, because I don’t want to be viewed as different. I can’t work a 40 hour week, go out in the evenings and then have a packed weekend. Hell, right now I can’t even get dressed or leave the house. Working is important to me, but my health is important too. I’m allowed to know my limits. And I’m allowed to change them day by day.
Having a diagnosis of a chronic illness does not automatically make me an inspiration. I really struggle when people tell me that I’m brave or inspiring, I don’t see things like that. I have two choices: give up and lie in a pit of misery for the rest of my life, or pick myself up and carry on as much as possible. Sure, it’s hard, but what choice do I have? Feeling sorry for myself is only going to make me feel worse.
The reality of chronic illness is scary. It’s scary because people don’t understand. But I will not ever hide my illnesses to make other people feel comfortable. I do, however, know what is appropriate to talk about and with whom. I’m not going to drop into casual conversation that my nose constantly feels like it’s burning because of how sick I’ve been and that I’m scared to blow it, in case it caused yet another nose bleed. Spoonie friends are more likely to understand that. I’m open and honest about things, but I know that having a verbal filter is important too.
I am allowed to have bad days. I’m allowed to have bad weeks. I’m allowed to have bad months. I’m allowed to cry. Life can be really tough, unpredictable, scary and testing. I’m allowed to morn my “old” life and feel jealous of people who are healthy and don’t need to plan their lives around medical appointments and consider whether they are going to overspend on energy. If I do overdo it, I will not be ashamed about staying in bed and only getting up to go to the bathroom or get a drink. When my body is crying out of sleep, there’s no point ignoring that.
And I’m allowed to celebrate the little things, such as getting dressed and not living in pyjamas (although pyjamas are good) or going to the supermarket or replying to a backlog of emails.
It is not my fault that people won’t always understand. Unless you’ve experienced something, it’s very hard to fully understand what a person might be going through. Empathy goes a long way, but please don’t be patronising. Being ill hasn’t altered my intelligence. Seeing people unwell is difficult, I fully get that. But being unwell is a lot more difficult and having people walk away from friendships or relationships makes being unwell a whole lot harder. I’m still part of the world, sometimes I’m unable to join in and it’s isolating. A simple text saying “how are you?” is enough to make someone’s day.
I did not choose to be ill. No one chooses it. It is not my fault, it isn’t anyone’s fault. I didn’t wake up one day and think “hey being sick with no cure sounds like fun, I’m going to try that and see what happens…” This is not a lifestyle choice. This is my reality and the reality of so many other people.
I will not apologise for something that is out of my control.
One of the biggest problems that people with Ehlers-Danlos Syndrome have is the dislocations or joints subluxing (moving out of place but not fully dislocating). As I have mentioned before, the lead up to me being diagnosed with EDS was long, medical professionals didn’t have a clue what was going on and I was just passed off as being a clumsy child and teenager. Throughout my secondary school years, I was constantly getting injured in stupid ways, which looking back was because of EDS and not because I was clumsy and incapable of walking without recreating Bambi on ice. I was fortunate in that the majority of injuries that I sustained were in school – had they not been then social services probably would have been crawling all over my mum and I due to a pattern of random and unexplained injuries. Every school term, my mum would challenge me to stay out of A&E and every term, within a few weeks I would be sat in minor injuries or A&E, on first name terms with staff members, silently waiting to be given a loyalty card from the NHS trust overseeing my care. Every new year, my mum and I would count up all my injuries and say optimistically that next year would be better. Next year came along, as did the injuries, illnesses and list of bizarre things that my body did.
Let’s rewind to 2010: it is autumn and I am in year 11 and in a GCSE French lesson. Our teacher was fairly lenient and allowed us to sit with whoever we wanted as long as we still got the work done. Throughout the two year GCSE French course, I sat in the corner with one of my close friends. We had been firm friends since day one of Year 7 and are still friends now.
So, the lesson. We were doing some form of group task, the exact details have been long forgotten along with my ability to speak actual French and not Franglais. I don’t know if we were working in pairs or alone, but somewhere amongst all the excitement of the lesson and learning all the random vocabulary that I am yet to utilise in conversation with a French person, my friend grabbed my hand enthusiastically and pulled it.
There was a sickening crack and a pop.
We looked at my left hand.
And that was when we realised that my finger had dislocated in her hand. It literally came out of place, in her hand.
She dropped my hand, looking mildly [read as completely and utterly] traumatised. I did what I normally did, in situations whereby I am in pain and burst out laughing. This momentarily reassured my friend, I was laughing, I was okay.
We looked at my hand again. My index finger was facing completely the wrong way and was hooked in a position that I couldn’t move. I laughed more. My friend found her voice and asked the teacher to help.
The teacher, faced with me laughing hysterically, like I had lost the plot, didn’t understand the situation. And then she saw my finger and very quickly changed her mind and sent me to the school matron.
Matron rolled her eyes and gave me an ice pack. Another teacher examined my finger closely and asked me if I would like him to put it back into place. I declined, on the grounds that he was a history teacher, not a doctor. I was taken to hospital, my finger was relocated to the correct position and I was informed that along with it being dislocated, my friend had also managed to flip the main tendon around the bone aka not where it should be.
I recovered from this ordeal. Seven years later, my left index finger remains in a hooked position, a lasting memory of one French lesson in year 11. I’m not sure if my friend still feels any guilt over my deformity, but I like to remind her of it every now and again.
I’m pleased to say that my friend also recovered from this ordeal, although it took slightly longer. She had to deal with being called a savage beast by our French teacher for the remainder of our time at school. She also has to deal with me pulling the “you put me in hospital” card out when I want her to buy the first round of drinks when we go out.
Is someone even your best friend if your finger hasn’t come out in their hand? I think not.
It’s been over a week of me being on official bed rest. Official because it was decided by my GP and my physio, not a case of me having a really long and lazy week.
This could just be a bad Ehlers-Danlos related flare up, although so far, the medical professionals seem to be thinking otherwise. The truth will be in my appointment with my consultant later this week. Either way, something has happened to my hip. Hip pain automatically sends me into a spiral of anxiety, purely because I have had two operations on my right hip before and there’s always been the underlying threat that my human hips aren’t going to last me much longer and I will have to turn bionic. Part of me is currently saying “yep, get rid of the human hips, I can’t cope with them anymore” but I’m kind of attached to my hips, literally and metaphorically. No one told me that they would only last(ish) 24 years – where is my refund?!
So, anyway. It’s been a long week, broken up by sleeping, binge-watching Waterloo Road and counting down the hours and minutes until my next dose of the magic pain relief. And there’s been crying. So. Much. Crying.
Rewind ten years and my life could not be more different. I was dancing three plus times a week, playing netball and hockey, trampolining and was walking two miles a day to and from school. Now, I can barely walk downstairs and have resorted to shuffling down on my bum when no one is looking because it’s quicker and easier. I’ve probably said this before, but I’m not a jealous person but seeing my friends going out and living their lives so spontaneously is painful. Punch-you-in-the-stomach-at-the-normality-of-it-painful. Anymore than two hours out of bed at the moment completely exhausts me and it’s a tiredness that I struggle to put into words. My life is on hold, waiting for the next medical appointment: hoping to get some clear answers, waiting until I can next take meds (the hour before meds time is literal hell), waiting until I’ve got enough energy to try and get out of bed, even if it just to the sofa. Endless waiting, only I’m not entirely sure what I’m waiting for. Because I’m not going to get better, I’m stuck with this life-sucking disease, which no-one really knows about, waiting for the next part of my body to fuck up. It isn’t just bad joints…if only…it’s all the stuff that you can’t see: the gastro problems, the blood problems, the respiratory problems, the electrolyte problems.
I’ve more than had enough. Obviously, there is a huge correlation between physical health and mental health and I don’t think it will shock anyone when I say that my mental health is also taking a bit of a battering at the moment. The anxiety of my current situation aside, I just feel so so sad. I feel stupid for being sad, but hell, I think, maybe, feeling crap is deserved and I need to work on validating my own feelings instead of brushing them away.
Something that I have learnt over the past week or so, is how bloody great my friends are. One of my friends told me a while ago that she had read up about EDS online so that she could try and understand a bit more what I’m going through and honestly, it’s probably the nicest thing that anyone has ever said to me. My friends are all incredibly understanding and get that when I cancel, it’s not because I’m being a flake, it will be because I am utterly exhausted and can’t function or am in more pain than is my normal and can’t function. I hate cancelling on people, but sometimes it’s got to be done. Over the past week, a couple of my friends have made the effort to text me every single day. Not necessarily to see how I’m doing – my reply doesn’t vary much from “shit” or “crap” or “meh” and no one needs to hear that all the time! They will tell me about their days, send me countless memes, bitch about things they’ve seen or heard. Basically, they are trying, possibly without even realising, to keep a bit of normality in my life. I might not be able to get out of bed, but I’m still interested in other people’s lives. I still care deeply and want to know if one of my friends is having a crap time. Physically, my body isn’t working all that well, but mentally, I’m still here. Sometimes I’m a bit nonsensical because of morphine (shout out to that stuff) but I still want to be involved. I want to stay connected to the real world, even if it is only through text messages and phone calls.
Hopefully, by the end of the week, I will have a better idea of what’s happening, but I’m not holding out for a miracle. Big thanks if you’re one of the few who have given me endless support, love, sympathy, bitching-fests etc etc etc. I appreciate it more than I can explain. Thanks for trying to keep things normal at the stressful and very much un-normal time.