It’s Time To Talk: Mental Illness Acceptance & The Spotlight on 3 of My Illnesses

Attention All: This’ll be a long read, so I suggest going to get a cuppa before you start. I’ve tried to provide trigger warnings where I can, but if there are any you think I need to add let me know and I’ll do it quicker than The Flash!

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[Trigger Warning: the first paragraph in quotes contains thoughts you may have when struggling with your mental health]

Something’s not right. I feel… I’m scared. . I don’t know what to do. What’s happening to me?. What’s going on? Am I having a breakdown? Is this it? I can’t stop it. Am I loosing my mind? I’m… I don’t know what… I don’t know what I’m feeling. I’m lost,  confused… Somebody please help me. Please. I don’t know what to do.

These are some of the thoughts I’ve had in the past. I have mental health problems. I am mentally ill. My mind doesn’t work the way it should. It sucks, but it’s the reality for 1 in 4 people in the UK. And that is ok, not great, not bad, just ok. I would much rather your mind was well, but you are no less of a person if it isn’t. There is nothing wrong with struggling with simple tasks, with finding life hard. It is not something that makes you weak, and you should never feel guilty. You are sick, you are ill. You can’t help it. Some people won’t understand that you are ill, and that you can’t magic it all away. Screw them. Simply put, your brain is an organ. Just like every other organ in your body, it can get sick. You can’t think away mental illness, just like you can’t will away Diabetes or Cancer.

Today is Time To Talk Day, and it’s time to start conversations about illnesses that affect so many of us. 1 in 4 people is a shocking statistic, even more troubling by the fact we just don’t talk about it. The British stereotype really doesn’t help things, but we have to fight to get our voices hear. Just because we are mental ill it does not mean that evaporate from society, and now is the time to reach out to everyone you care about and ask them if they are really doing ok. Opening up is hard, really hard. As soon as you say anything about your mental health, doors close. Conversations stop. Everyone acts weird, and they avoid you. It’s not ok, but there are people fighting every minute of everyday to change things. People are speaking up, and standing out. I’m trying my best to be one of them. Things can’t stay the same, it’s dangerous. Life’s are on the line.

Don’t loose hope, you are not alone. Reach out, seek help. I know it’s a horrific thing to admit to yourself, that you are struggling. It took me… well…  years. But having mental health problems isn’t the end, it doesn’t have to be the end. It may take a while, but you’ll find a doctor who recognises something is wrong. There’s medication, counselling, CBT and other kind of treatment. You have options. And if all else fails, I will always be here for you. Anywhere, anytime. Please don’t give up.

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Right, now  it’s time to practice what I preach. Me and my mental health go way back, and it hasn’t been plain sailing along our 10 year journey together. But each day I keep fighting, even if sometimes it’s only minute by minute. I have a history of Depression, Misophonia, Post Traumatic Stress Disorder (PTSD), Depersonalisation-Derealisation Disorder, Generalised Anxiety Disorder (GAD), and Dermatillomania. Wow, I’ve never listed them before. That’s heck of a list.

 As most of you are aware, I am very loud about my physical health problems. But mental health wise,  I tell people bits and pieces, and to be honest I’ve lost track of who knows what these days. I guess I started opening up about it exactly one year ago, when I finally sought help for my anxiety. It was the lowest point in my life for quite some time, but with the support of my wonderful Twitter family I finally went to my GP. Lots of time playing medication roulette, and a year on I am far more stable.

I’ve written about anxiety before, but I have never really publically spoken about 3 other illness that I have really struggled with for the last year or so  Here goes…

time-to-talk-day

[Trigger Warning: food and eating] ]As I am a colourful rainbow of different physical and mental illnesses, it’s pretty complicated for me to explain my issues with food. They pre-existed both my physical illnesses, but getting sick with ME/CFS seems to have made things a lot harder for me. Misophonia is the hatred of sound, and I struggle tremendously with the noises people make when eating – including my own. All the chewing, lip smacking and swallowing is very overwhelming to me, and it feels like someone has turned up the TV full blast. It triggers me to feel physically nauseous, have anxiety attacks, blurred vision, headaches and ultimately cry. I’ve learnt to live with it, and I have a couple of go-to coping mechanisms. The first is background noise, you will never see me eat without something blaring in the background. When I’m home it’s normally the TV, when I’m out I always have my ipod at the ready and hope that restaurants have background music going. I concentrate all my will on listening to the beat of the music or the rhythm of people speaking. That also means I hear a lot of information when people don’t think I’m paying attention, so watch out people! I also try to avoid sitting directly opposite a person who is eating, so that I can focus on something else within my eye line like a clock on the wall or a painting. Please don’t be offended if I don’t look you in the eye when you are talking, as anything that draws me to your gorgeous face will mean me looking at your lips. If you’ve ever seen me eat, you know that I take a very long time. This is because I tear or cut the food in question into tiny bite-sized pieces to  reduce the time I spend chewing.

[Trigger Warning: skin-picking, obsessive behaviour] Right, one down, another two to go. The next mental illness under the spotlight is Dermatillomania, which is also known as Excoriation Disorder or Skin Picking Disorder. As you can tell, it is the obsession and compulsion to pick your own skin. I know it sounds weird, and to some it will probably sound gross. I have bad breakouts on my face as it is, and I physically find it hard to not pick at the scabs. With the added complication of EDS, my skin scars far more easily than most, and I’m often see with at least foundation on to tone it down. I am drawn to Even the smallest imperfection on my skin, and cannot rest until I remove it, even if that means having open weeping sores. If you were to look on my arms and various other body parts you will see circular scars, often grouped together in three’s. Without going into too much graphic detail, that’s why I normally cover it up with hoodies or cardigans. On the one hand, it’s because I hate to be reminded that I ever did such harm to my own body, and on the other I use the clothing as a barrier so I can’t be tempted to do it again.

[Trigger Warning: ptsd, depersonalisation, derealisation, detachment from reality] I’ve left Depersonalisation-Derealisation Disorder until last because it is a lot harder to explain. The illness is part of a wider group called Dissociative disorders, with the other two subsets being Dissociative Amnesia and Dissociative Identify Disorder. Simply put, depersonalisation means feeling detached from yourself, like you’re watching what is going on rather than participating in it. See, I told you it’s complicated. It’ll probably help to put it in context, so here’s how it effects me personally. When I am stressed, it’s like a switch suddenly flicks in my noggin. I can feel it coming on, and then that’s it. I feel like I’m watching… someone… on TV, and like nothing is real. Somehow, it’s like my brain overcompensates for feeling too much emotion to feeling nothing at all, one extreme to another.  Derealisation focus on not the person, but the environment. I feel like the world is foggy, unreal, and I don’t feel a connection to people I know well. Overall, my episodes typically last from a couple of hours to a couple of days. For me, alcohol also seems to be a trigger, which is why I avoid drinking to excess these days.

So… That’s it… It’s taken a long of time to be ready to bare all, but I decide that it’s time to talk. I’m no mental health professional but I’ve decided to share things I’ve never really told people before. And if you feel comfortable, please share this far and wide on your social media, to show others that they are not alone in their struggles. We will fight together.

For more information on mental health problems:

Mind

Sane

Rethink Mental Illness

For the materials I used to create my photo montage check out:

End The Stigma

For more information on Time To Talk Day:

Time To Change

Crisis information:

Mind

NHS

Saneline  0845 767 800

ME: The illness that medicine forgot

ME is in the media again, and finally it’s something fee from bias, something… true. Jen Brea, from the bottom of my heart, thank you for your TED talk. In 17 minutes you said it all.

ME destroys lives, ME kills people. Two simple statements, both or which the medical field don’t understand. Decades of stigma has left doctors confused, unsure of the truth, clutching at straws. And I get it, I understand ME doesn’t make sense. But that means that instead, we are diagnosed with something else. And that something is that our symptoms are ‘all in our head.’

If you talk to any ME sufferer you will hear their battle to get diagnosed, and you will probably think why do we put ourselves through it all. The answer? Without a diagnosis, you loose hope. People don’t believe you when you say your sick, but doctors can’t figure out why. Doctors look at you as if you are a lost cause, not worth their time anymore.

I was humiliated by no less than 5 different GPs. Even though I went private in the end, I still had to fight tooth and nail to get referred to a Consultant. I broke down in the appointment with my private GP, it came down to me begging through tears. I wouldn’t wish the experience on anyone. But I was lucky. My consultant not only believed me, but he recognised the signs that I had undiagnosed EDS too.

The experience didn’t stop there. I still have medical appointments, I still meet new people every day that don’t believe ME/CFS exists. Try fighting against that, it’s soul destroying. Stop telling me that the illness that ripped apart my whole world isn’t real. Just stop.

Too be honest, not much changes once you are diagnosed. But, now you have something to work with. Something to research. And as Jen Brea said, a whole new world opens up to you. You are no longer alone, you find out there’s other people that have been forgotten by medicine too. You gain a family of people who believe you, and you all come together to fill the void left by doctors. Honestly, I don’t think I would have survived these past 4 years since I got ME without my world on Twitter.Thank you for being there when I had no-one else to turn to.

4 Year Diagnosis Anniversary

Today, 4 years ago today, my life changed forever. I was finally diagnosed, they finally knew what was wrong with me. One simple appointment for a confirmation of my ME/CFS diagnosis, and I walked out with not only that but hEDS too. Something I did not expect, but I am grateful that it happened. You see, it comes as a certain amount of relief, knowing that it’s not all in your head. I don’t mean that to undermine mental health problems, but it can be hard being told by everyone that the problem is in your head and not your body.

1 year ago, I celebrated my anniversary by cutting off most of my hair. I finally admitted to myself that I was too ill to care for it, and I haven’t looked back since. Getting a pixie was one of the best decisions I have ever made, even if I did do it just after buying expensive curlers.

1 year on, and another milestone. A couple of months ago I accepted my first wheelchair, which is a hard process to get used to. But it has made my life better, beyond belief really. A couple of months ago, I moved into a new flat. Whilst I may be in the land of luxury, I did it for health reasons, not for fun. Staff onsite 24hours, in case I have a bad fall, or have ordered supplies online if I am too unwell to go out. An accessible laundry room so that I can do my washing in my wheelchair. A gym so that I can try and improve my muscle weakness in my own time. A cinema room, study room, and communal lounge so I can have friends round or study with a change of scene without having to go far.

I’m not sure what I’m going to do to celebrate 4 years on. 4 years surviving. 4 years of proof that I can keep going. I would do something exciting, but deadlines. Maybe I should dye my hair?!?! Oh but what colour, since it would have to not clash with my vast lipstick collection. So if anyone is reading this, give me some spoonie friendly (and cheap) ideas! The wilder the better! Or if you live in Manchester, hit me up!!!

Remember I have a new spoonie facebook account so feel free to add me if you want to chat some more.

 

Nikii xxx   

A letter to my friends

Dear friends,

This isn’t meant to be an apology, just an explanation. An explanation for why I act like I do. I know I’m difficult, I know I’m weird, I know I’m… different. But please, please don’t give up on me. Not yet.

I try to reach out to everyone I care about every once in a while, to try to connect with you all. Sometimes these attempts go unanswered, sometimes they get a response. I know I’m flaky, and honestly I would give pretty much anything to be reliable. But it’s just the price I have to pay, what accompanies being mentally and physically ill. I’m trying to make peace with that, but it doesn’t mean I don’t feel the guilt. I desperately want to have a social life, to be where my friends are. But it’s not that simple, I have to pay a price for having fun.

My anxiety means I critique every single thing I do. Why are you walking like an idiot, and what on earth are you wearing. You honestly think you look good in that. Why did you choose that drink. What are you doing with your hands right now. People will stare you, you look weird. Why did you say that, what on earth possessed you. You’re not even out the door yet. Everyone will hate you, I mean they must do if you say things like that. Your eyeliner will smudge all the way down to your chin, and you won’t even notice. And your lipstick, oh god it’ll go on your teeth. What a fool you are. Why bother even going out, you’re just an embarrassment. No-one will notice if you’re gone anyway. They’ll probably stop inviting you to things because they hate you. But that’s good for you, you’re a waste of space, you shouldn’t go anywhere anyway.

That’s what goes through my head before I even leave my flat. That’s what having an anxiety disorder does to your head. It’s messed up, I know.

Let alone what being chronically ill means. My wheelchair helps a huge amount, but I’m too anxious to use at the things you invite me to. It just takes my anxiety to another level. But please, please don’t stop inviting me.

Just… be there. Don’t frown if I say I need to leave, or that I’m too ill to come in the first place. I’m trying to fight against my demons, trying to balance a lot of plates in not a lot of time. If I run away, it’s probably because I’m having an anxiety attack. Or I’m about to projectile vomit. Neither state I would wish for my friends to see me in. Please don’t say that it’ll be all right, that I’ll win, that it’s not a big deal. It will mean more to me if you’re just sitting silently next to me. Physical presence rather than a cliché.

I’m not asking a lot, or am I? No, I think it’s just what a proper friend would do. Maybe 2017 will be the year for having a clear out, to pay more attention to the people who try with me, and get rid of those who don’t. Clearly, if you’re reading this then it definitely means your a keeper.

Yours faithfully,

Nikii xxx

 

 

Hello 2017: My ‘Not Resolutions’ List

New Year’s Resolutions, they seem pointless don’t they?!?! Well, if you’re chronically ill they do. It’s hard to plan at the best of times, let alone trying to organise what you want to achieve for a whole year. So, I’ve decided not to do any New Years resolutions.

Instead, I am going to write a to do list. I love a good list, and I think it’s less pressure on me to perform. It’s full of 4 big things and lots of smaller challenges, with only very loose timelines so I don’t get too disappointed.

 

  1. Finish my MSc – which should be sorted by September.
  2. Finish my Environmental Leadership Course – I think it ends around June.
  3. Save up enough money to fo an intensive driving course – hopefully once my MSc quietens down in Summer.
  4. Plan and run regular meetings for ‘The Chronic Meet‘.

And in no particular order…

  1. Take a minimum of hour each day for self-care, which must not be related to food.
  2. Take 2 full days off a month to self-care.
  3. Spend at least half an hour meditating a day.
  4. Attend one social activity outside of my courses per month.
  5. Attend a minimum of one Twitter chat a month.
  6. Be more active in Facebook Support Groups, which is why I’ve now set up a new spoonie profile – here’s the link to add me.
  7. Complete my ‘101 things to do when you’re not drinking‘ book with the aim to have a more exciting life outside the pub.
  8. Try to eat many small meals throughout the day rather than focusing on the conventional ‘breakfast’, ‘lunch’ ‘dinner’ to hopefully help my digestive problems.
  9. I’m undergoing various tests for said digestive problems, and I hope to tackle them (and all my other illnessess) without falling apart – sorry, had to add a EDS joke in there somewhere.
  10. Become more confident in my wheelchair and try to do the Wheel-Fit exercise DVD once a week.
  11. Try to improve my moral fiber by not focusing on other people’s (and my own) faults.
  12. Stop trying with people who don’t bring anything positive to my life, I shouldn’t waste so much oenergy on people who wouldn’t do the same for me.
  13. Focus on a few good friends rather than trying to please the masses, quality not quantity.
  14. Accept me for… me. I’m not perfect, and I never will be. But that’s ok. For all my faults and struggles, I have my merits too. I need to stop letting anxiety win, and start to love myself before I try to love others.

Edit’s I’ve thought of since:

  1. Have a 5 minute dance party each day (yes, a Grey’s Anatomy reference)

 

Well, I’ll check in a couple of months down the line to see how I am fairing.

Nikii xxx

Goodbye 2016

The year is over, finally…

2016, it’s been a heck of a journey.

You’ve made possible unimaginable horrors, things nobody dreamed could come true; Aleppo, Brexit, Trump, more massacres than you can count, beloved artists taken away, countless horrible things have happened. Raw emotions have been felt by every human being on this planet at one point or another. I’ve spend a lot of time crying at the news, with one bad event after another rolling through on the breaking news. At times, people didn’t think we could surivive it.

But we did, we’re still here. We’ve lost people along the way, but we can’t let it stop us from fighting.

Fighting for a better world. As Dory says ‘just keep swimming’. It may feel like like we’re going against the tide, but we can’t give up. People before us didn’t, and they achieved increadible things. If people just gave up, we wouldnt have lights, electricity, prosthetic limbs, robotics, cars, computers, the internet, hospitals, the list is endless. We have to keep going.

I wouldn’t class myself as ‘religious’, but I guess I run off… hope.

It’s not easy, but hope is sometimes all I have left in the whole world. 

What would happen if we all gave up? Nothing. Absolutely nothing, and that terrifies me. Nothing would change, nothing would get better. In fact, it would probably get worse if it had nothing to contend with.

It’s hard to sum up whatever I’m trying to write about. So, I’ll leave it as this;

Good riddance to 2016, it’s a pleasure to see you leave. Hopefully 2017 will bring better.

Nikii xxx

Friendship & Chronic Illness

Congratulations, you’ve been diagnosed with a chronic illness. You will never get better, you will never lead an ‘normal’ life again. Sucks, right?!?! You will always be different.

Life can be hard at times for everyone, but having a chronic illness complicates even the simplist of things. But what does that mean for your friendships? People will fade from your life, sometimes even the people you wouldn’t expect. True, it happens to everyone. But people get scared off even more when your sick. It gets awkward. People don’t like you talking about your life now, because it makes them feel awkward.

But what about when you find it hard to leave your home, to go out and socialise? Then people show their real worth. It becomes pretty obvious who will put the work in to visit you, and who wont. I like having friends, I do, but having ME/CFS, EDS & GAD means I can’t always leave my flat to see people when I want to. I go to very few social occassions these days. Each time I try, something holds me back. Right now, it’s anxiety. And I miss out. I miss out on keeping existing friends, and making new ones. It’s hard, and Facebook especially makes it even harder to deal with.

The next section is the most emotional thing I have had to write in quite some time. I want to be clear from the start: it is not intended to make anyone feel guilty, it is not directed at any one individual. and it is not to get pity. I 100% understand people have other committments than just being my friend.

The 4th of December was my 23rd Birthday. I had to study all day, and that combined with being a spoonie led me to plan a film night in the communal movie room of my accomodation. Something simple, that didn’t require much commitment or money from me. I haven’t celebrated my last 2 birthdays because I was too ill at the time, so this year I wanted to be realistic.

I invited 30 people, but I was not expecting everyone to turn up obviously. I’ve just been in the position of not being invited to things, so I didn’t want anyone else to feel left out. In a way, maybe I wanted unexpected people to pop up. I guess I always use my birthday as an attempt to reach out to people I haven’t spoken to in a while. I miss talking to people, and I am very much aware that I am by no means the perfect friend. Being sick is rubbish.

I will admit, I was getting pretty excited. My mum had come up the day before to visit, and to take me shopping for some food for my guests. I didn’t get too much, as I knew many of my favourite people would not be able to attend due to other commitments.

If the people who  went to the extra special effort to pop me a message on facebook or by text to explain are reading this – thank you. And of course, I completely understand!!! It was hardly an exciting black tie event anyway, literally my plan was to watch movies whilst eating as much as I could before my digestive system disagreed.

Putting it bluntly, only 4 people turned up. And thank you to those, especially since 2 were new people in my life, and I hadn’t seen the other 2 in quite a while because life got in the way. You all tried you best to make the night special, and I really do appreciate the catch up. Laughs were had, and it was substantially better than if noone had attended. Thank you for making me smile, and enabling me to forget about my health for a couple of hours. It was just what I needed.

But it still hurt. It was quite a large room, and I think that just made it look even worse that there weren’t many people in it. GAD crept in and made me feel like I didn’t have any friends. It was tough, arguing with my brain throughout the night. I know I do have friends, truely I do. It was just an unfortunate set of events which just so happened to come together on one night.

Just to reitterate, this is not to guilt-trip any of my friends who may be reading this. Seriously, it isn’t.

Anyway, I ended up making the surplus food into packs and wheeled around the city centre giving them to the homeless people on the streets that night. It wasn’t a lot, it wasn’t going to change their circumstances, but at least it made some people smile on a cold winter night. Again, this is not to get recognition for what I did, but it was better than me throwing it in the bin. Food waste is a very real problem.

I guess I just wanted to type this up to make people realise how hard it is to keep friends at the best of times, let alone when you are ill. If someone – even if it’s completely unexpected – reaches out to you, grab the opportunity with both hands. Be kind to everyone, you probably have no idea what battles they are fighting. 

Nikii xxx   

Turning 23: what I’ve learnt in the last year

Today is my 23rd Birthday. Wow, a lot of things have changed since this time last year. Here’s some reflections;

Last year I was too ill to celebrate, this year I’m having a movie night at my flat. I’ve accepted that I can’t do somethings, so now I’m being realistic with my expectations.

My mental health was falling apart. In the last year I’ve sought help and I’m working on beating my diagnosis of Generalised Anxiety Disorder. It’s a long battle that I don’t think I will ever beat, but I’m making progress to make myself stronger.

Last year, I was just getting settled in to using a mobility scooter. Now I have my first wheelchair, and I’m ok with that. Some people see it as limiting, that I can’t be that sick. But I am, and frankly its enabled me to do a hell of a lot more that I couldn’t do without my wheels.

I was struggling with my Final Year of my degree, now I’m not only doing an increadible MSc but I also got accepted into Uprising’s Environmental Leadership course. It finally feels like I’m in the right place, that I am working towards a solid career path. I’ve even been asked if I am prepared to feature as a student profile on the University’s website. My new set of lecturers are not only accomplished, but are working hard to support me to stay in education. It’s nice to have people fighting for me.

With the free spoons I have from using a wheelchair, I am in the process of setting up a social enterprise. I want The Chronic Meet to help people like me, and I’m prepared to put in a lot of effort to make it happen. I know it will be worth it.

Thanks to a bank loan, I’ve moved into a more suitable flat. I feel safe here, and there are various facilities there that help me manage my illness’ better. It’s also a lot closer to Campus, so I can even manage to wheel myself to Uni without needing any assistance.

So, yep, I think that’s it! The last year has been full of personal challenges I have had to overcome, let alone whats going on in the rest of the world right now. But here’s to another year, another 365 days to become a better and stronger person. Another 8760 hours to make a difference.

Nikii xxx

Disability & Appropiate Questions

As most of you know, I openly talk about my disability to raise awareness. But this does not mean I think it’s ok for strangers to come up to me and ask ‘what’s wrong with you?’ It happens far more than you probably think, always around 3 questions in after meeting someone new. Taxi drivers seem to be the worst, whatever the mobilty aid I use on that particular day.

Fair enough, it’s pretty hard to ignore a wheelchair, but you don’t see me going up to people and saying ‘why do you have blonde hair?’ or ‘why are you so tall?’ or ‘why are your ears so big?’. If I made an obvious comment on your physical appearance you would feel uncomfortable too. And no, adding ‘I hope you don’t mind me asking’ does not make it all ok.

I’m hell of a lot more than my choice of mobility aid. So is every other disabled person on this planet.

Disability: what fuels my fight

People wonder why I get angry, frustrated, and moan a lot about all things disability.

Today I left my flat for 2 hours to go into Uni to sort some stuff out, and I came across two very awkward and frankly upsetting situations:

1. I got stopped in a hallway by two of my ex-lecturers from 4 years ago that I have not kept in contact with. After a very quick talk about why I’m still at Uni, they both asked “what happened to you?” Fair enough, it’s been a long time and it’s bound to come up in conversation at some point. When they taught me I was not sick let alone using a wheelchair. But I wouldn’t have gone up to them after 4 years for my second question in to be ”where’s your wedding ring” or something as equally personal.

2. I got laughed at by a group of nearly 20 students when I politely asked them not to use the accessible door out of the building, so I could go through it in my wheelchair. They weren’t polite, awkward laughs. They genuinely thought the situation was funny.

That’s why…That’s why I keep fighting.