Welcome to my nightmare…

I didn’t sleep last night (shocker, right). Actually, I did kind of sleep. I was so dog tired by 11pm that I decided to try going to bed like a normal person. I read for a bit and much to my relief, I fell asleep. For about 45mins.

I was awoken by the first nightmare around midnight. By half three and the fourth nightmare I had given up on the idea of sleeping. Nightmares are the part of PTSD that I don’t really talk much about. Maybe because they are an intermittent problem. Probably also because it’s not something that people (in my experience) take seriously. Responses to my attempts to discuss my nightmares have ranged from vaguely dismissive to full on belittlement.

I think when I say nightmares people hear bad dreams. You’re probably thinking of anxiety dreams (teeth falling out, failing exams, getting fired etc) or standard scary dreams (trapped somewhere, being chased, really bad person creeping around your house horror movie type stuff). Maybe you’re even imaging those childhood bad dreams that are terrifying in ways that are incredibly specific to you. All of which are horrid, but not at all debilitating. I suppose I do understand why folk say things like ‘well, they’re not real’ or ‘as soon as you wake up it’ll be gone’; that’s their experience. Oh, how I wish it were universally true.

Creepy face

PTSD nightmares are a whole other thing. They are related to trauma. For me, they often mirror my flashbacks. Sometimes they’ll get creative and go abstract. I’m trying to get some rest and my mind will just be replaying amplified versions of the most distressing moments of my life. My head is a terrible editor; it just rapidly cuts from one horrendous image to the next. All of which are graphic. Blood and dead babies are the common denominators. They’ll begin in a very realistic & upsetting fashion and degenerate into gruesome bloodbaths (sometimes literally).

Blood splatter

As I mentioned the nightmares are a sporadic problem. They almost always have a trigger. That can be a really tiny thing that I possibly didn’t even pay that much attention to until it starts becoming a pivotal detail in my dreams. It can also be a major life event. My nightmares are usually accompanied by & linked to flashbacks in my waking hours. They always come in clusters. I never have just one upsetting dream. They plague me every time I close my eyes. All of which adds up to a significant disturbance.

The torment doesn’t melt away when I regain consciousness. There’s always more to come and it is real. Every scene is drawn from my reality. I end up scared to sleep and just as scared to be awake. I can’t be alone in this because nightmares are close to the top of every PTSD symptoms list. Any psych evaluation or questionnaire will ask about them. Yet, I don’t see much discussion of the topic. I include myself in that. It’s an aspect of my mental health that I feel really uncomfortable being honest about. I don’t know exactly why we’re all so tight lipped, but I’d bet stigma plays a part.

Sleeping ly

It’s always the messy parts of mental illness that we shy away from. Anything that feels uncontrolled or dark or too close to crazy is glossed over. Those who haven’t experienced it don’t want to think about. Those of us who have don’t want to deal with judgement. Where the nightmares are concerned I think there’s also an element of feeling stupid. Kids get frightened of bad dreams. It’s hard to shake off the feeling that you should be able to handle it. Especially when that’s the message the world is giving you.

I’ve yet to discover anything that’ll chase the dreams away. Sleeping pills aren’t helpful because they make the nightmares more vivid. Thankfully they occur less frequently than they used to. Keeping quiet certainly isn’t helping. Perhaps if people knew what I was referring to when I say nightmares they would be less patronising. A little empathy can go a long way, but you have to understand someone’s experience before you can offer that.

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The Spoonie Guide to Xmas…

Christmas is joyous and lovely and incredibly hard for the chronically ill. On top of keeping up with every day life there are a million other tasks to contend with. Not only is there shopping, wrapping & cooking, but there are a multitude of festive social events. Oh & the expectation that we’ll all be merry and bright.

When you’re chronically ill you don’t get time off for Christmas. Keeping up with seasonal demands when you’re in pain & exhausted can be impossible. Here’s my spoonie guide to surviving Xmas. Plus a little advice for friends of family of the chronically ill.

Make a list, check it twice.

The only way I can keep track of what needs to be done is making a multitude of lists. Lists help combat so many issues. If you’re dealing with brain fog, anxiety, impaired cognitive function, fatigue and so on, lists are life savers. I usually break things down into categories and try to assign a time scale to each list. The trick is to be realistic about how much you can do each day and not freak out if you don’t complete your list. Simply roll over outstanding items. Accept that some times you will have to make cuts. You can’t do everything. The world will not end if you don’t post the Xmas cards this year.

Start early & manage expectations.

I always start Xmas prep super early. The longer you have to get organised the more you can spread the work load. Getting a jump on the shopping also really helps if you have a tight budget. It is much easier to find smaller amounts of energy & money.

Be honest with yourself and others about what you can manage. If you have to trim the gift list or swap a phone call for a meet up, do so. I believe Christmas is about embracing the ones we love. Try to work out in advance which parties/get togethers you comfortably manage and communicate that. Float the idea of secret Santa style gift giving rather than buying everyone in your group an individual present. Expensive presents don’t matter. An enjoyable phone call or grabbing a quick coffee is much nicer than forcing yourself to suffer through social engagements that cause you distress.

If you have to cancel, make your apologies, but be firm. You didn’t choose to be ill. You are not intentionally disappointing. Remind yourself of this and try your hardest not to feel guilty.

The internet is your friend.

I do the majority of my Xmas shopping online. It is much less stressful and physically taxing to order from the sofa. The shops are crazy at this time of year. Not to mention the weather is awful. Stay warm & rested and get your festive haul delivered. This goes for food too. You can order in advance and have the Christmas groceries delivered as and when you need them.

Allow yourself to enjoy what works for you.

Christmas comes with a variety of traditions. Everyone has their own variations and seasonal essentials. It’s lovely to uphold family traditions, but only if they work for you. This is your life and your Christmas, you are entitled to enjoy the festivities. If something will negatively impact your health, don’t do it. There is no joy in activities that hurt you.

Establish your own Christmas customs. Whether that is embracing existing rituals or just making up them up from scratch. Deck the halls, wear an ugly jumper, stick cinnamon on everything or don’t. Suit yourself. Celebrate in style, but make it your style.

Don’t be a dick.

This is for the loved ones. If someone in your life is dealing with chronic illness, be kind. We know we disappoint sometimes. We get that we’re not the easiest to accommodate, but please be patient. Cut us a little slack. As inconvenient as our symptoms can be for others, trust me dealing with them every single minute of our lives is harder.

Shelter from the storm…

I’ve had a pretty blue day. There’s proper storm blowing around outside & I am incredibly tired, which definitely hasn’t helped. Mostly though, I feel shit because too many people have been horrible to me this week.

I had a very small day surgery on Monday, which went smoothly & really wasn’t a huge deal. It was on my dodgy leg & in a spot when stitches are very easy to burst, so I was told to be careful. With that in mind I got a taxi to the train station early on Tuesday morning (I watch my nephew on Tuesdays). The station has a little car park at one side, but that is not the platform I get the train from, so I need the taxi to stop on the main road. I say need because I mean need. If I get out in the car park I have to go out up a big flight of stairs to street level over the tracks & then down a smaller staircase to the platform. Getting out on the street means navigating one smaller set of stairs (which is hard & sore & slow enough). The taxi driver of course did not want to stop on the main road. He was annoyed that he’d have to go a little further down the road to turn at a roundabout & he didn’t want to pull over on a busy road. He argued that it made no sense when the station had a car park. Now, maybe I’m a bitch, but in my mind part of the convenience of paying a taxi to take me somewhere is that I don’t have to explain myself & I get to go where I want to go. I don’t relish having to explain my disabilities & why I can’t do certain things. Especially when I walk with a stick & it’s bloody obvious that stairs are not my friend. I did however tell the driver why I wanted to be dropped in that specific spot, but he still wanted to argue. Thus I had to say either drop me where I say or take me home and don’t get paid. With much muttering under his breath he did as I asked, which probably took less than 5 minutes more & was basically zero hassle to him. This, my day is off to a crap start & I’m already tired of just trying to move around in the world.

I struggle down the steps just in time to heave myself on to a packed train. The train is headed into town & it’s 7.45am, of course there are no seats left. I make my way to the seats that are reserved for the disabled, elderly etc and everyone sitting there avoids eye contact. I don’t know why people do this because not looking at me does nothing to reduce my need to sit down. All it achieves is putting me in the horrible position of having to ask for seat. This, I duly do. I politely ask the women in the closet seat if I can have her seat if she is able to stand. I am met with huffing & puffing as puts her jacket back on and a glare as she vacates the seat. I thank her anyway because I have some bloody manners & sit whilst others who previously avoided looking in my direction now recover their ability to see me. They now make full use of this rediscovered function to gawk at me for most of the journey. I’m sore & tired & anxious & very conspicuous. It isn’t even 8am. I arrive at central station & have to buy a ticket. There was no ticket inspector on the first train & I have to get a second to complete my journey. The ticket office on the platform has the barriers set up to control the queue. I have to walk around it to get into the queuing area & follow the barriers to actually reach the end of the line. I’m slow, i’m conscious of not messing with the wound on my dodgy leg & I am worried about this queue because I’m really not sure I can stand that long. Roll on more rude people. As I follow the path made by the barriers people just barge right past me. One women even does a little run just as I near the end of queue so she can get in front of me. What kind of dickhead rushes to skip a disabled person who is clearly having difficulty? I don’t know, but I can tell you there are too many of them & I don’t always have it in me to let them know that they’re a knob.

View from the train

Anyway, I get my ticket. I locate the platform of my next train. I find a seat because I can’t go any further until I’ve had a rest. I eat a lovely banana, check my messages & listen to some tunes whilst I gather myself. When it’s time to to head to the train I have recovered some equilibrium. I’m thinking today can be saved. One train journey & I can cuddle my gorgeous wee monkey. This is what I’m thinking as make my way along the platform & a large man barges right into me. He took me completely by surprise, I had nothing to steady myself on & went flying. Mr ‘catching my train is life’ didn’t even stop. No apology, no let me help you up. Kept marching right on & boarded his train. Incidentally his train was my train & it wasn’t leaving for 9 minutes. Whilst he presumably found a good seat I was lying on the platform bleeding. A nice ticket guy helped me up & onto the train. He even radioed someone the description of the guy who knocked me over, but to what end I have no idea. I’m not sure what anyone could really do other than tell him he was a prick. That surgical wound I was being oh so careful with is now bleeding furiously. I didn’t want to remove the dressing on the train, but I’m sure the stitches have burst (they had). So, I’m applying pressure & being watched by other travellers (again) as I try to put myself back together. I was pissed off, but focusing on gathering myself & getting where I needed to go.

Mr nephew was, as always, a delightful little bundle & I got through the day. I arrived home last night utterly exhausted & dropped into bed almost immediately. After a fitful night of sleep I awoke feeling just as tired. My leg is swollen & the wound can’t be restitched (it’s been open over night & restitching would be an infection risk). It will heal, but slower & messier. I had things to do today, but I didn’t do them. Partly because I was in a fair bit of pain and exhausted. Mostly, though, because there was a strong wind & yesterday shook my confidence. The accumulation of the rudeness, arguing, staring & knocking me to the ground was that today I was acutely aware of my disabilities. I didn’t feel up to dealing with the world & perhaps ending up worse for wear again. That realisation made me feel like shit.

cheeky baby
Cheeky monkey trying to steal my stick.

I don’t like to think of myself as fragile or incapable. I know my limitations & I try really hard to work around them. I have to think ahead. I do things a bit at a time & I sometimes have tackle things in ways that might not make sense to others. I know I can be awkward. I know that the accommodations I need can be a pest to others. All disabled people know this. We aren’t asking for seats or giving specific instructions for a laugh; it’s the only way we can live in the world. I already feel stressed & anxious about needing these things. I am certain I’m not alone in it that. So, when you force me(us) to explain ourselves it’s horrible. When you make a fuss about being stuck behind me as I move at glacial pace, you are making my life a nightmare. Your stares & sighs can ruin my day. Limping along with a stick at 37 is not my ideal life situation. Fainting on public transport is not a thing I relish. I did not choose to hurt all the live long day. I do not want to have to ask you for anything, but I can assure if I was in your shoes I’d offer my seat with good grace.

I’ll heal. I’ll give myself a shake & force myself back out the door again. I will hold my tongue (most of the time) as you push past me & roll your eyes. I shouldn’t have to, though. Living with my disabilities is hard enough. I don’t want to manage your arsehole tendencies too.

Don’t forget to shout…

Today is World Suicide Prevention Day. It’s a wet, grey day & my mood is bleak, so it seems like an apt day to talk about suicide. Although, to be honest I want you to do more than talk about it.

Suicidal ideation impacts the lives of more people than you would imagine (1 in 5). It’s not rare for a person to reach a point where they are so desperate that they just don’t want to continue. In my experience those thoughts are insidious. Once you have seriously considered ending your life, it enters the sphere of available options. So, whilst I absolutely do not want to die; I can’t deny that occasionally at really bad times ‘kill myself’ would be the last entry on my list of possibilities. What makes it a remote last resort rather than an actual risk is a combination of factors. People love me, I love them, there is joy & purpose in my life. The only reason I can recognise & enjoy those factors is years of intensive support from mental health professionals. I am grateful for the people who stood by & helped me access the treatment I needed because without that professional intervention, I would certainly be dead.

World suicide prevention day

So, yes, I do want to us all to talk about this. I want to break the taboo. I want people suffering to not be silenced by shame. It is important that you listen to loved ones in trouble. It matters that you care, but what is even more important is that there are effective mental health services to seek help from. Talking & listening isn’t going to save anyone unless it’s backed up by solid treatment. In short, we need better mental health services.

There is no point in asking people to reach out for help when none is available. A cup of tea & chat with a friend is nice, but it will not solve the underlying issues that lead to suicide. We need to be able to offer people more than a 6 month waiting list for a hand full of CBT sessions. When your loved ones tells you they want to die, you should be able to take them to a dr & get them immediate help. Instead the current response is often no beds & here’s a crisis team number.

I want you talk about suicide. I want you talk about mental illness. I also want you to do more. Don’t vote for people who will continue to decimate the NHS. Find out how the mental health services are performing in your area. Write to your Mp/Msp about provision of those mental health services. Sign petitions. Write to newspapers. Share your experiences. Do everything within your power to raise the profile of mental health services. We are failing really vulnerable people everyday. We beg them to ask for help & then tell them none is available. If you really want to help those struggling with suicidal thoughts, you have to do more than talk. We have to fight to give them another credible way to end their pain.

Actions speak louder than words

Find your MP here.

Find your MSP here.

Check your MP’s voting record here.

You say you want a revolution…

If you are even fractionally sentient you will be aware the Donald Trump visited the UK last week. He did so with all his usual grace & charm. Yup, that’s right, none. Instead he gave us his standard fare; lies, ill manners & fuckwittery.

I’m delighted to confirm that we weren’t standing for it. A reported 250,000 people took the streets of London to protest Trump’s arrival on our shores. In Glasgow the crowd was smaller, but no less passionate.

I’ll happily take every opportunity to denounce the U.S. President & his vile administration. For me it boils down to one really simple fact; if you don’t loudly condemn their actions, you’re condoning them.

I don’t consider it hyperbole to describe the current GOP as fascists. Trump’s government displays every single facist warning sign. Rampant racism leading to dehumanisation comes straight from the nazi playbook. Language such a infestation combined with policies like family separation & Muslim travel bans are undeniably examples of this. Extreme sexism is unavoidable when the commander in chief is a sexual predator. When you combine his misogyny with the increased power of the religious right you create a dangerous situation. Reproductive rights, access to health care & basic human rights for LGBTQ+ people are at serious risk. Assaults on the free press. An inability to conduct himself in reasonable & decent manner add to his horrors. When mocking disabled people is fair game, but denouncing white supremacy is not, you have a society in serious trouble.

It isn’t possible to recount all of Trump’s bad conduct in one blog post. He represents all that I find repulsive. His Presidency puts vulnerable people within & without America at severe risk. I think all decent people have a duty to resist. I’m proud of my city for making our revulsion clear.

I spent the first half of the protest sharing a bench with some elderly Americans who thanked me for our support. They also asked me to explain some of the signs, which proved a little awkward. ‘Fud’ is not a word that lends itself to polite translation. It was, however uplifting to share a laugh and all that we had in common.

Protest is important & powerful. Please join in whatever capacity you can. Be that matches, rallies, direct action or even donations. Be safe, but be strong.

You can put your money to good by donating to these organisations.

RAICES provide free & low cost legal services to immigrants & refugees in Texas.

The ACLU fight through the courts to defend the civil liberties of all Americans.

The Coalition to Stop Gun Violence does exactly what it says on the tin. The campaign for & work on legislation that will introduce gun restriction laws which will reduce gun violence.

Planned Parenthood provide sexual health services, screening, abortions & much more. They are essential for many Americans who cannot otherwise access affordable healthcare.

You make me sick..

Chronic illness is a shit show. Sometimes literally. Which is thing a that often goes unmentioned. Beyond the pain, being incapacitated & generally hindered in life there is the embarrassment factor. Believe me, that’s no small thing.

Disability brings many embarrassments. Perhaps most notably, for me, is the discarding of a layer of delicacy that I cherished. I am not by nature a person who cares to discuss certain bodily functions. I don’t find toilet humour funny. I don’t need the details of your bathroom trip. I have weird anxieties about toilets/bathrooms that are not my own. I’ll hold a pee for ten hours because the toilets in the bar aren’t spotless or because I saw a hair in your bathroom. A pee used to be the absolute limit of what I would even consider doing in toilet outside my own house. Now, I long for the time when I could reject toilets willy nilly & only go in the privacy of my home. Those were the days.

These days I always need to know where the nearest ladies is. Often I can’t leave the house because I cannot be more than a few feet from my bathroom. If I go out the choice of where & when I deign to use the facilities is no longer mine. My stomach now reigns supreme. It’s not a benevolent ruler. IBD has put paid to any friendly relations between myself & my digestive system. Throw in a hiatal hernia, GERD, anxiety & fibromyalgia and you have the making of all out war. In short, my digestive tract rarely behaves. Whether it’s vomiting, diarrhoea or constipation it’s always up to no good.

Sick emoji

Now, along with cramps & heartburn & nausea & wind & reflux & horrible, horrible pain I get to deal with the crippling embarrassment. I have to worry that the public toilet will be packed when my stomach is in distress. I panic that I won’t get off the bus in time to not ruin everyone’s day with the smell of my vomit. I have to use friend’s bathrooms & worry if I’m taking too long. My boyfriend gets to listen to me throwing my guts up whilst he lies in bed; trust me, it’s not sexy.

I am constantly trying to manage these symptoms in ways that allow me to avoid talking about them. I time eating around when I will be in locations that I can easily to escape to the facilities without drawing too much attention. I’ll avoid eating before car or public transport journeys. Often, I’ll just stay home. At heart I’m still a person who doesn’t want to even allude to any of this stuff. I’ll say I don’t feel great when what I mean is one way or another the contents of my stomach are going explode. I’m embarrassed to talk about it. I’m embarrassed for other people to know much about it. I’m mortified at the thought of it getting worse.

Embarrassed chimpanzee

As hard as I find it I’m now a person who has to do these cringe inducing things ALL THE TIME. I find myself having a near panic attack in a cubicle because maybe people can hear my insides trying to get out. I’m quietly dying whilst Drs question me about my bowels. I am rushing into pubs you usually couldn’t pay me to step into to use toilets worse than the one in trainspotting. It’s awful. I hate every twinge & cramp & wave of nausea; partly because they feel rotten, but mostly because I’m embarrassed.

So, here I am talking about it. I’m hoping if I just put it out there for all to see I can stop freaking out. I know other people experience this stuff & I’d hate to be part of the silence that makes anyone else feel this rubbish. If nothing else perhaps being a bit more open will alleviate some stress, which can only be good for my tum.

Why don’t you mind your own business?

I had an interesting twitter conversation this week. Some people wanted to know how I deal with strangers asking questions about my scars. Unfortunately this is a thing that happens & one the reasons many people feel they must conceal their scars. Fortunately it is not an everyday occurrence & you can learn to handle it. I wanted to quickly share some tips that I hope will help you do just that.

First of all I feel it’s essential that you realise that no one has the right to ask you these questions. It is rude & intrusive. You do not owe these people answers, you don’t even owe them a polite response.

I totally understand that depending on a variety of factors unexpected questions about your scars can strike different chords. Sometimes I feel enraged, other days I panic & sometimes I’m just over it. Thus, my responses can differ. That’s ok. You are entitled to feel however you feel. You are not obligated to be nice or to hide those emotions from ill mannered strangers.

I tend to have ready made responses for the most common comments. They range from just shutting someone down to embarrassing them the way they tried to embarrass me. (Note : most people who ask already know what your scars are. They know their questions are akward & unkind).

So, let’s get to it. I’m going to give my to go to answer to my most often asked questions.

Q/ What happened to your arms/legs/body part?

A/ What happened to your manners?

A/ Shark attack.

A/ Me.

A/ Exactly what you think.

Q/ Why did you do that?

A/ Why do you think it’s your business?

A/ Why are you a nosey bitch?

Q/ Why don’t you cover those up?

A/ Why don’t you mind your own business?

A/ Why don’t you cover up your horrible personality?

A/ Why don’t you fuck off?

All of these responses are blunt & let nosey people know you are not all impressed with their questions. I refuse to pander to other people’s rudeness, but I know there are times when you don’t feel confident or just want to avoid a possible confrontation. I find the perfect answer in those instances is ‘it’s a long story’. It’s vague, but it is also obvious that you have no interest in pursuing the topic.

Whatever you say the important thing to remember is that you don’t need to reveal details to anyone unless you want to. It’s not your responsibility to make strangers feel comfortable & it’s certainly not your job to safeguard the feelings of people who don’t care about hurting yours. Shut them down & live your life.