Let’s Talk: Mental Health

May is a busy month when it comes to spreading awareness. On top of it being Ehlers-Danlos Syndrome awareness month, it is also mental health awareness month. May 2018 marks a decade of me suddenly plummeting into a world whereby I am all to aware about mental health and mental illness. and I’ll be honest, I have been dreading it.

In May 2008, a very close friend committed suicide. I’ve spoken about the suicide of Nicola and another friend in another blog post, but given that it’s mental health awareness month and a decade on from Nicola’s death, I wanted to touch on it again.

Nicola and I met at nursery, she was confident, sassy and clever. She took me under her wing and made me feel better about being forced to learn French and German and having to eat quiche for lunch. Her sassiness only grew as she got older, she stood up for what she believed was right and was fiercely loyal and caring to everyone in her life.

I found out that Nicola had died shortly before leaving for school, when I was in year 10. It didn’t seem real, I can remember telling my friend, who I was walking to school with, and there was a level of disbelief from both of us: considering the news that I had just received, I was incredibly calm, stating that Nicola had died as though I was announcing that the sky was blue. My day carried on as normal for a few hours, before I crumpled and the news really hit. It seemed impossible that my sassy and fiery friend was no longer alive.

Nicola hadn’t said anything to anyone in her life which would have given us a clue of how low she was feeling. This remains that hardest thing for me, ten years one, I maintain that I should have seen something, I should have picked up that she wasn’t happy.  I spent weeks and months analysing our saved conversations on instant messenger to see if there was something I had missed. It reached the point where I made myself ill analysing these messages and I convinced myself that I was an awful person for not picking up on subtle changes on Nicola’s behaviour in the weeks leading up to her death.

Prior to Nicola’s death, I am not ashamed to say that I was fairly oblivious to mental illnesses. Yet, all of a sudden, I was thrown into a world where suicide, depression, anxiety and self harm became every day language.

This is where I am going to be really honest. I’m struggling at the moment and in the interests of transparency, I’m admitting that, although I find it hard to. I am open and honest about my mental health: I talk to my GP, therapist and physiotherapist about it and I talk to friends and family. But I normally do the talking after the blip/crisis has passed, not during the moments of feeling rubbish.

A lot of this is probably circumstantial. On top of the on-going issues relating to EDS, gastroparesis etc, I am normal person sick. It’s not the end of world, but it has made things considerably harder and physically, I have felt crap.  Lying in bed with all the time in the world has given more too much time to think. Turns out that being malnourished adds a lot of time to the whole recovery from illness thing. Who knew?

I just feel sad. And it’s okay that I feel sad. I am allowed to feel sad. Three years post-EDS diagnosis and I have more or less got my head around the genetic monster that has invaded my body. It’s still hard, sometimes it’s really hard but I’m used to it. It’s my normal and I am used to dealing with that normal. Throw in gastroparesis to the mix and yet again I am feeling like I have been chewed up by life, vomited back up, chucked around a bit and chewed up again.

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Illness has changed me as a person. I don’t mean that in a philosophical way, I mean it in a literal way. Before I became ill, I was punctual, social, confident and fairly carefree. Now that I am ill the best way that I can describe myself is flaky. I cancel plans more often than following them through, leaving the house alone makes me so anxious because I don’t trust my body and it feels like a military operation if I do manage to walk out of the front door.

I cancel plans because I’m sick, not because I don’t care or value my friends. I hope that my friends understand this, cancelling plans isn’t easy and I will often need to psych myself up to send that text because I hate letting my friends down or making them sad, annoyed or whatever. We are currently half way through May and this year I have missed birthdays, theatre shows, meet ups, planned days out, events and meetings all because I am too sick to leave the house, or I am exhausted, overly anxious or simply without the mental willpower to actual deal with adulting.

I have had enough. I have had enough of this life. I didn’t ask for this. No one asks to be ill but right now, I am struggling with huge and unexpected lifestyle changes that I’m having to go through. I feel so so isolated, more than I can put into words. Which is obviously going to impact on how I’m feeling.

I’m an anxious, sad, tired mess and I want to run away and escape for a while. Although the irony of that is that I’m not well enough to do that. Eye roll. I think the fact that the weather is improving is another factor which makes things harder.   I want to be outside, drinking gin in a pub garden, going for walks by the river, having day trips to the beach or enjoying the countryside around where I live. None of that is possible.

Much like chronic illnesses, you can’t see mental illnesses but it is something becoming more and more prevalent in society, however that isn’t something which is reflected by the government’s mental health strategy.

When given the choice between being right or being kind: choose kind.

R.J. Palacio, Wonder

My message here is simple: be kind to people because not being able to see their suffering does not mean that they are okay. Give your friends a hug because they might really need it. Ask your friends and family how they are and give them the time and space to talk. Text a friend who you haven’t heard from, for a while. Reach out, care and be kind.

 

 

EDS Awareness Month: A Week in the Life

EDS awareness

 

As part of Ehlers-Danlos Syndrome Awareness month, I thought I was share a snippet of what my life is like, in the form of a week in the life. This week is pretty average in terms of appointments and I’m not having a flare-up of symptoms, which has allowed me to carry in as normally as possible.

 

Monday

Today is mostly being spent recovering, following a weekend staying with my best friend. It wasn’t a wild weekend, of any sort, but unfortunately, I need a few days to recover after doing something. The travelling, in particular, has taken it out of me a bit and as a result, I am in more pain that normal. My right knee is very swollen, due to a mild dislocation from walking too much. My back is also more painful than usual: coach seating and underground seating isn’t ideal when you have back problems!

A while ago, I got myself a “Please Offer Me A Seat” badge, which is issued from Transport for London. This means that I’m able to ask people for a seat on underground trains when it’s really busy. The badge isn’t always well received: on the surface, I look like a healthy young adult, meaning that I have to tell people that I have a hidden disability. Sometimes, I can’t face having this conversation, so I stand. This makes me feel very dizzy and I am unsteady on my feet as it is. Throwing a moving tube train into the mix means that I resemble Bambi on ice. Eye roll.

Overall, today hasn’t been too bad in terms of dislocations. My fingers have been a bit free-spirited, as has my wrist but nothing too alarming.

Dislocation Count: Two

What: Right wrist and fingers

How: Cleaning my cat’s litter tray and making my bed

 

Tuesday

I have been dreading today. This morning I forced myself to go swimming, following advice from my physiotherapist to try and slowly introduce exercise back into my life, to see if it helps with my motility and general mood. Having endorphins zipping around my body has definitely made me feel a little bit more positive about life. Exercise is also allowing me to reconnect with my body and feel in control, at a time when I feel very out of control. My physio has given me some hydro-therapy exercises to do in the pool as well. with the aim of building my my core muscles and strength – my muscle mass as greatly reduced over the past few months, which has had a knock-on effect on how well I control my EDS symptoms.

This afternoon I had an appointment with gastroenterology. When I last saw my gastroenterologist, I took my Vomit Queen status to a whole new level, so I was aiming low in terms of this appointment: as long as I managed not to be sick, it would be a success.

In terms of managing not to be sick, the appointment was a complete success. In less positive news, I was officially diagnosed with gastroparesis this afternoon. I feel a bit emotionally numb about the diagnosis, it’s basically confirmed something which had been suspected since the beginning of the year but my consultant told me, very simply, that I will never have a normally digestive system again and aiming to live without vomiting is something that is incredibly unlikely. That sucks a bit, but I’m trying to focus on the fact that now I have a formal diagnosis, my medical team can start to formulate a clearer plan in how best to treat me.

Dislocation count: One (I think)

What: Rib(s)

How: Being sick

 

Wednesday

I had an appointment with my therapist over lunch today so we took advantage of the timing and did a supported meal. Well, she had a meal, I had a supplement drink, but that still remained a challenge, as I have hit a bit of a wall in terms of managing my intake through liquid nutrition drinks.

We also talked through my appointment from yesterday and how I’m feeling about what was said. I’m still feeling pretty numb about things, although the overarching feeling is relief more than anything. I suspect that in time, once the reality of the situation has hit home, there will be some tears and swearing. In general though, I’m feeling calm about things.

I went swimming again this morning. Whilst exercise is helping me mentally, I think that I might have overdone it slightly: my shoulder is very painful. I’m trying not to move my arm too much as movement makes the pain worse.

Dislocation count: Two

What: Thumb and toe

How: Picking up a box and walking

 

Thursday

Blood test this morning, to check my inflammation markers, as my last blood tests, run by my GP, showed that my C-reactive protein (CRP) was raised. I think a full blood count will also be checked; I normally have a full blood test every three to four months. As usual, there was a slight issue in finding a vein, I’m 99.9% sure my veins know when they’re able to be stabbed and go into hiding. I’m grateful that the nurses at my GP surgery know me well and remember that I’m a bit of a bleeder.

My aim had been to have a rest day today but that ended up not happening.

Dislocation count: One full and one partial

What: Shoulder and jaw

How: Taking a jumper off and yawning

 

Friday

Back again at my GP surgery, this time for an appointment with my GP. We talked through the medical side of my gastroparesis diagnosis – my consultant wants me to try some different medication, so my GP prescribed that today.

I feel really really tired today, partly because it is so warm at the moment. Not working does have a few benefits though and one of them is being able to sit in the garden and enjoy the rarity that is the sun in Great Britain. Lots of people have asked me how I keep myself entertained as I’m not working. The answer is simple: reading! When I don’t have the concentration levels of read an actual physical book, I listen to audiobooks.

Dislocation count: One

What: Shoulder

How: Taking a jumper off

 

Saturday and Sunday

Very hot again over the weekend. Hot weather is a blessing and a curse when it comes to having a chronic illness, my joints much prefer warmer weather to cold weather but POTS, vasovagal syncope and asthma are not huge fans and I need to be careful that I don’t become dehydrated. Having POTS and vasovagal syncope means that my blood vessels are a bit rubbish when it comes to doing what they should be doing. In simple terms, they are too relaxed and slow at contradicting and dilating, so blood pools in my frets and hands, meaning that my brain doesn’t get enough blood, which makes me feel dizzy and unwell.

On the EDS side of things, whilst my joints are less stiff and painful in warmer weather, I end up swelling up and this causes pressure on joints around my body. I have no idea why this happens, or if this is a common EDS thing…but basically whatever the weather and my body isn’t happy. Eye roll.

The hot weather has also played havoc with my sleep, so I’ll probably be spending next week catching up on my missed sleep over this weekend. People with EDS are likely to have adrenaline issues and that makes it really hard for us to fall asleep and stay asleep. And when we do fall asleep, we are prone to having crazy vivid dreams which feel like reality to us, combine that with being on medication which can cause vivid dreams and nighttime can be an odd time for me! I’ve also struggled with painsomnia over the past few nights. This is insomnia but with added extreme pain, meaning that I am in too much pain to sleep. Great fun.

Dislocation count: Three

What: Jaw (x2) and ribs

Doing what: Being sick

 

I hope this has given you an insight into what life is like with EDS. As I said, this has been a fairly average week for me, if you’ve seen out out and about, I won’t have looked sick, but lots of stuff has been happening that isn’t necessarily visible or obvious unless you know me well. Remember: you don’t have to look a certain way to be unwell!

 

 

An Open Letter to Theresa May

Dear Theresa May,

I’m going to start by explaining a little bit about myself. My name is Laura, I’m 25 and I live in South England. I have a degree in English Language and Education Studies; university was the best three years of my life, I worked hard and played hard. As a reward for all my hard work, I am now saddled with a hefty debt with Student Finance, which I’ll probably never fully repay. I like singing loudly in my car to S Club 7, reading, travelling, spending time with friends and I watch a little bit too much Four in a Bed. Much like any other 25 year old woman.

I also have Ehlers-Danlos Syndrome, Fibromyalgia, Reactive Arthritis, Asthma, various mental health conditions and suspected cyclical vomiting and gastroparesis. The past few months have been tough. I don’t want your sympathy but I have been very unwell. Because of this, my medical team and I decided that I needed to be on long term sick leave. This meant that I needed to turn down my dream job, in January, and drop out of my part time college course. I have been working since I was 16 years old; said dream job was working in children’s social services. I’m amazed that I got the job, not because I doubted my ability but because of all the cuts made to children and youth services. Going on long term sick leave is not a decision that was taken lightly. However, due to my illnesses, I am being sick numerous times a day. I haven’t eaten a proper meal since 1st February. I am malnourished, losing weight rapidly, exhausted, scared and my hair is falling out. Losing my hair has hit me hard, it’s part of my identity and it takes clever styling everyday to disguise the balding and thinning areas. This is on top of daily dislocations of my joints, widespread pain, low blood pressure and having a low immune system.

You won’t like this but I haven’t been earning since mid-November. So that means that I’m not paying tax or national insurance or my student finance debt. Sorry about that. Like I said, I’m very unwell. I don’t like it either.

After much discussion with people involved in my treatment and care, I made the decision to apply for employment support allowance (ESA). Only, where I live, this has been changed and now everything is under the umbrella of universal credit. I’ll be honest, I was reluctant to apply. I never thought that I would be in the position where I needed to apply for benefits but my health comes first. That was what I told myself. Media coverage of universal credit hasn’t been great, that also concerned me. My previous job meant that I had to help vulnerable young adults apply for benefits, through the universal credit scheme, so I was prepared for the hoop jumping and being on hold for hours to DWP. What I wasn’t prepared for was the feeling like an utter failure.

Today I had my first “commitment meeting”. I handed over my fit note, so there was no doubt that I wasn’t playing a game and pretending to be ill. The letter from my GP clearly explains my current situation. On the application, I stated my numerous health conditions and treatments.

It was explained to me that next week, I would have to attend the job centre again and I would be looking at how to write a CV with my new work coach. As I’ve already said, I have been working since I was 16 and this was alongside studying until I graduated from university. I have a CV. I don’t need help in writing one. But still, I’m going to have to do this to tick the box. We will then be doing interview skills. Interviews don’t concern me and I am proud of the fact that every interview that I have attended has resulted in me being offered the job. But I will listen as I am told about interview skills, so that the box can be ticked and I can be “helped back into work”. Apparently sickness isn’t a reason to be off work and instead it is down to my skill set.

I asked my work coach what would happen if I was ill and was therefore unable to attend appointments. He paused and then told me that if I didn’t give them enough notice, I was at risk of being sanctioned. I explained again that I am being sick numerous times a day, am malnourished and in a lot of pain. Sometimes, I can’t leave my bed because I am so sick. I can’t even make it to the toilet to be sick, so I have to use a bowel. It’s not dignified but that’s my reality. I’ve been in and out of hospital, needing to be given fluids and intravenous anti sickness medication to try and combat how dehydrated I’ve become. I’m genuinely very unwell, but I could be sanctioned for that. Hearing that has made me feel really anxious, which is likely to exacerbate my symptoms.

In reply to this, my work coach asked me “right. And when are you going to be better because we need a timeframe for getting you back into work.”

I’m going to put this very simply: I do not know when I’m going to be better. I don’t know if I’m going to get better. This could be my new normal. That’s a terrifying thought, but there’s not much I can do about it.

And instead of thinking that I should apply for universal credit, so that I have a bit of financial security, I am now questioning why I started the process in the first place. I feel like a failure because I can’t work. I feel ashamed that I am ill. You have made me feel like this. Your government has made me feel like this. I have been made to feel like a burden to society.

I want to be at work. I do not want to be on benefits, it was a hard decision to make. I want to be doing what my friends are doing and working 9-5 every day and then going out at the weekend. But I can’t and that is something that I have to learn to accept. But I can’t accept it because you and your government are discriminating against me because I am ill. I’m not lazy, work-shy or using avoidance tactics and all the other stereotypes that you seem to hold about people who need to be on benefits.

There’s still no guarantees that I will be accepted and given universal credit. I need to go through the work assessment and I could be declared fit to work.

So, please explain to me what I am meant to do? Please explain to me how you think I am meant to survive in this given situation? Do I sound like I am fit to work? This isn’t just an issue affecting me but I’ve had enough and I’m speaking up for all the people you are failing. Enough to enough, stop penalising us for being ill. This is not a lifestyle choice. You’ll probably never be in a situation whereby you need to apply for universal credit and all I can say to that is lucky you. But I really hope that you’re never placed in a situation whereby you are unwell and therefore unfit to work. Because it’s a living hell, made worse but intense feeling of failure and shame.

You’ve let too many people down.

Yours sincerely,

Laura

20 things I want to do when I’m better

It is fast approaching two months since my body decided to throw an epic wobbly. Two months of pretty much being bed bound, unable to eat, a lot of vomit and watching an unhealthy amount of Four in a Bed. I don’t know when I’m going to get better. I don’t know if I’m going to get better, or if this is my new reality. I still don’t know what’s actually wrong with me, although recent tests are pointing to a likely diagnosis: a diagnosis that scares me shitless. More on that if/when I get a formal diagnosis.

Anyway. Being bed or sofa bound has given me a lot of time to think, which is both a blessing and a curse. So these are 20 things that I would like to do when I’m feeling a bit more healthy.

  1. Drive. Whilst I can still drive, due to malnutrition and lack of energy, I have been relying on taxi-of-mum most of the time. I can just about manage driving myself to GP and physio appointments, but anything more than that requires too much energy. I miss my freedom.
  2. See my friends. My friends are dotted all over the county. And they are wonderful wonderful people who have made sure that I still feel part of society, even if I’m physically unable to take part. But I would like to be able to go and visit them, instead of relying on them coming to me.
  3. Go  to York. I went to uni in York and it was hands down, the best three years of my life. Four years on from me graduating and I still pine for my student days. York is probably one of my favourite cities and holds many happy memories.
  4. Have a spa day. My lovely friend Claire has also been going through a pretty rough time recently. Tough times have definitely made our friendship tighter but my God, we more than deserve a day of pampering!
  5. Eat a meal. I don’t think if this will actually be possible but I can dream! It’s weird, I don’t miss food, the thought of eating makes me feel incredibly anxious because I know it will result in me being sick, but I miss the idea of food.
  6. Start studying again. I was at college doing a part time counselling course but have had to defer until September. I’ve been looking at various online courses and I think I’m going to enrol in a child psychology course. Online learning will give me the flexibility to study when I feel well enough, hence reducing pressure and stress.
  7. Go back to work. In January I was offered my dream job and was over the moon. I have worked really hard to get to were I am now, in terms of work and realising that I had to turn down my dream job to focus on my health was devastating.
  8. Go shopping. Self explanatory really. I love shopping.
  9. Exercise. I can’t wait to go swimming and go to the gym and rebuild my fitness back up.
  10. Go to the theatre. Going to the theatre is one of my favourite things to do, especially going to see musicals. The to-see list includes: Everyone is Talking About Jamie, Les Mis, The King and I, Kinky Boots, Hamilton and The Lion King (again).
  11. Have a holiday [not counting York]. Realistically, I won’t be well enough to go abroad this year and I’m not sure if it’s something I’d want to risk, but a short UK break somewhere will do. Ideas welcome.
  12. Properly wash my hair. At the moment, all I can really do is a quick shampoo because anything else exhausts me. RIP my hair.
  13. Meet people. You learn who your real friends are during crap times and the support I’ve received from people on Instagram has honestly moved me to tears. I want to be able to thank them in person and give them a huge hug.
  14. Join a choir. This had been one of my new years resolutions and that hasn’t happened, for obvious reasons.
  15. Drink alcohol. Man, I want a gin and tonic so badly.
  16. Go for a walk by the river.
  17. Move out. This is perhaps a slightly ambitious hope, but I had been planning on moving out this year.
  18. Have a belated pancake day. I still haven’t got over the fact that I couldn’t eat pancakes on pancake day because of my vomit comet status.
  19. Get through a whole day without saying “I’m tired.” I’m a funny one…
  20. Take my mum out to say thank you for effectively becoming my full time carer. She’s a good’un.

A-Z of mental health

A – Acceptance. Until you can accept that you are unwell, progress will be slow.

B- Belief. Not necessarily religious belief, although that helps some people. Believe in yourself. You will get there and you are worth the time, effort and energy which needs to be invested in you.

Today you are You, that is truer than true. There is no one alive who is Youer than You.

 

C – Coping. Find ways to manage your mental health and focus on the things that make you feel better. A cup of tea is the go to solution for the crisis team, although I’m more likely to curl up in bed with my cat, watching Waterloo Road.

D – Discrimination. Having a mental health diagnosis, can leave you open to discrimination, either through your workforce or through social harassment. You are within your legal rights to challenge this, should it happen and you are protected under the Equality Act 2010 (as long as your can prove that your mental health condition is a disability. The Equality Act protects you if you are discriminated against by employers, organisations that provide services and public functions, education providers (like universities and colleges), organisations that sell or manage property and private clubs and associations (Mind January 2015).

E – Equality. See above: never be sorry for something that is out of your control

F – Friends. Not everyone gets mental health, despite the fact that we all have it. The people who understand are the people who matter. Some people will stand by you, during the good and bad days and it’s a harsh learning experience that not everyone will be there at the other side of a bad patch.

G – Grief. Life changes with mental illnesses: it’s normal to grieve over how things used to be.

H – Happiness. You are allowed to have moments of happiness. That doesn’t make your illness any less valid or real.

I – Information. There were nearly 1.6 million (1,590,332) people in contact with specialist mental health services in 2012/13, the Office for National Statistics estimates that one in ten children and young people between the ages of 5 and 16 has a clinically diagnosed mental health disorder. Children and adolescents with poor mental health have relatively worse prospects throughout their adult life. For example, young people with a diagnosed mental health condition in adolescence are twice as likely to have no educational qualifications in early adulthood (Mental Health Network 2014)

J – Jokes. If, like me, you have a tendency to use dark humour to get through day to day life, so what? Although it’s best to work out when it’s appropriate to make jokes about your own death, it can freak people out.

K – Kindness. Be kind to yourself. Not everyday will be plain sailing and you will have days when you feel rubbish. Don’t beat yourself up. Getting to a place of longterm stability takes time, hard work and there will be slip ups. Allow for that. Put things in place which help you. Nothing beats a lazy day in your onesie watching back to back episodes of something on Netflix. Self care is such a buzz word, but until you learn to care for yourself, letting other people in to care for you is so much harder.

L – Little people.  They are young, easily influenced and need people to look out of them. One of my biggest fears is letting down the little people in my life. I don’t want them to know the heartbreak of mental illness and whilst I can’t prevent that from happening, I can show them the meaning of true love.

M- Medication. Little magic tablets which have literally saved my life. I’m not ashamed of taking psychiatric medication. It’s not a case of one tablet is suited to all: it’s taken a good number of years to right the right combination of medication and what works for me won’t necessarily work for someone else.

N- No. It is okay to say no if you aren’t up to something. There’s no shame in having a bed day. Self care is not selfish.

Grumpy Cat No - Imgur

O – Opportunities. If you had told 15 year old me that I would get some of the opportunities that I have experienced because of mental health, I wouldn’t have believed you. I was young, scared and had no idea how I was ever going to feel okay again. Having the chance to speak out about the stigma attached to mental illness is something I will always remain grateful for. Looking back, it’s pretty incredible that I have taken part in a debate in Westminster about the cuts to youth services, I have written articles for Sane and carried out research for other charities. People are interested in what I have to say and that is still somewhat surreal. I have been able to mentor young people and help them to gain a better understanding of mental health and most importantly, through blogging, I have given people, real people, who I mix with in day to day life, the space to talk about their experiences.

P- Pride. I’ve come a long way from the 15 year old who felt crippled by depression and anxiety. Aged 15, I knew very little about mental health, so I hadn’t twigged that I was struggling with mental illness. It hasn’t been an easy ride and I still have my struggles, but I’ve come on leaps and bounds in the last ten years.

Q – Questions. Ask questions about your mental health. You’re not going to know it all and professionals supporting you are there to (hopefully) provide answers.

R – Rest. Know when it’s time to stop and take a breather from the real world. It’s okay to need time away from the non-stop 21st century life. Turn your phone off, shut your bedroom door and allow yourself to just be.

S – Stigma. One day, I truly hope that the stigma around mental illness will lessen. I don’t think it will ever fully go, purely because it’s always going to be something that isn’t understood by everyone. Don’t be afraid to be honest and open, the world won’t change unless we make a change.

T- Talking. Fairly self-explanatory but by being open and talking about my mental health, I have helped myself and I think and hope that I have helped others. Mental health is not a conversation that should only be had on World Mental Health Day…Talk about it whenever you want to.

U – Understanding. Not everyone is going to get it. That’s a hard lesson to learn. But the people who do get it and understand are some of the most valuable people in your life.

V – Victories. Celebrate the small victories. And the big ones. You got dressed today? You’re fab! You left the house today? You’re winning.

W – Work life balance. The pressure of an increasingly demanding work culture is perhaps the biggest and most pressing challenge to the mental health of the general population. Make sure that you have downtime and do things for you, not for work.

X – Xeniatrophobic. Don’t like going to the doctor? There’s a word for that.

Y – You. No one knows you better than you do. Trust your instincts.

Z- zzzzzzz. Listen to your body and sleep if you need to sleep. We sometimes take good sleep for granted; lack of sleep can hugely impact on mental health. We all have our own ways of managing sleep, know what’s right for you.

stop-trying-to-make-sleep-happen

 

 

 

Life Lessons from a Spoonie

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.

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I will not apologise for something that is out of my control.

2018, you’re being a bitch

warning: this blog post talks about vomit. 

 

It’s hard to believe that we are only two months in 2018. Honestly? So far, it has been pretty shit. I’m jokingly referring to 2018 as the year that I just get sicker. Only it’s not a joke, it’s true. I’ve spent more time in hospital or in bed than I have done anything else.

The year didn’t start off particularly well, somewhere around the second week of January, I slipped back into a mental health crisis. It’s not something that I have spoken about very much, mainly because my physical health has since taken over. But I was very depressed, looking back I don’t think I had been that unwell since my final year of uni, which was a pretty turbulent time, for me and everyone around me. This time round, the depression, anxiety and OCD turned me into a not very nice person. I became very anti-social, withdrawn, isolated…you get the picture. I hid in my room because the real world was just too scary to be part of. I missed birthdays, nights out and I wasn’t around when some of my friends needed me. The crisis seemed never ending. I didn’t have anything to work towards and everything just seemed pointless. I should have invested shares in dry shampoo because I used so much; why would I want to shower and wash my hair when it felt like the world was collapsing and likely to end, imminently.

And then there is the mess that is my physical health. Over Christmas, I started struggling with sickness. I think the point that I realised something was wrong was during a family mean in that limbo-time between Christmas and New Year. I. Was. So. Sick. Prior to that, I had struggled off and on with unexplained sickness, but this time, my body really has been taking the piss. Fast forward two months and I am still being sick. I’ve been in and out of hospital, to be pumped with fluids and anti sickness medication, had an endoscopy, been referred for a colonoscopy and after an urgent referral to gastroenterology, we are slightly closer to getting answers, although, yep, you guessed it, I’m still being sick. That gastroenterology appointment is a bit of a blur, I was being sick every 10 minutes (I was there about 5 hours in total…that’s a lot of vomit) and I really lived up to my nickname of Vomit Queen. No-one steal my crown because that’s all I’m good at right now. I need to have an gastric emptying study and that should, finally, give a definitive answer about what the hell my body is playing at. The news that I need to eat a radioactive egg sandwich for this hasn’t filled me with joy. Egg sandwiches are bad enough without adding a radioactive substance to them.

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It’s all been pretty horrific and scary. When I was diagnosed with Ehlers-Danlos Syndrome, almost three years ago, no one explained the condition well to me. I thought it was just a case of having unstable and wonky joints. How wrong was I?! EDS has taken over my life. It feels like I have a monster inside me, which is taking over every part of my body. Wonky joints are now the least of my worries: plummeting blood pressure, constantly being tachycardic, orally evacuating everything that I try and eat and drink is much more scary. Never in all my life did I think that I would be praying for food/drink to head south and be poo-ed out, instead of shooting north again via my mouth. Today I made the choice to formally withdraw from college. It was that or be kicked off my course (counselling skills) for poor attendance. I’m devastated, because this is yet another thing that my [lack of] health has taken away from me.

It’s been hard going for my mum as well and I think that is what I am finding hardest. When I first started to become unwell, around Christmas, I was having symptoms that closely mimicked irritable bowel disease, in particular colitis. My dad and various other members of his family have/had colitis and in my dad’s case, this resulted in him getting bowel cancer and passing away at the age of 38. So, seeing me having the same symptoms as him has been hard going for my mum. I feel so guilty seeing how exhausted and wrecked this is making her. We both share a level of relief that this is unlikely to be IBD, although the likely diagnosis isn’t any less scary.

Whilst I don’t want to make the end of this blog post sound like an Oscar acceptance speech, I do want to quickly thank everyone who has supported me through this hellish period. Because it’s been hard. I miss my old life: I miss dancing, playing netball, trampolining, not being exhausted 24/7, having a social life, being able to work, having freedom and aspirations. Thanks for sticking by me, normal service will resume at some point…hopefully.

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