Travelling with multiple disabilities and conditions – the essentials before I’ve even left home.

I’ve got a couple of trips coming up in the next month or so. Trips I’m more than excited for, but that are also anxiety inducing. They aren’t too far away, but they do involve planning. A lot of planning. I need to know exactly what I’m taking with me. I need to look at transport when I’m there, what I can do safely and on my own, the mobility aids I need with me, etc, and I try to do it whilst travelling light if I can. It’s made easier by the fact I travel to most places with my sister, because it means I’m not having to carry the suitcase, and we share a suitcase. But there’s always a lot to consider.

Firstly, how easy is public transport going to be for me? In the case of London, I can download a map of the accessible tube stations here but, these are still going to require me looking at the accessibility and seeing just how truly accessible they are each day. I’m planning on taking my wheelchair for the days my pain levels are higher. But that means I need to look at where I’m going to be able to get to. My fibromyalgia, arthritis, and chronic fatigue can affect my ability to self propel. It can stop my legs from functioning properly. I know this trip that my sister isn’t going to be with me every day. So each day is going to require a very detailed plan for travel. The buses in London, whilst cheaper than tube, don’t necessarily always have room for wheelchair users, and quite frankly, I hate travelling by bus with my chair. Some days are going to be walking stick days, and those are more easily done, but I still need to plan where I’m going.

I mentioned my sister not being able to be with me all the time, this means I need to have my anxiety emergency pack with me, ready to go when I venture out alone. This means I need my backpack with me at all times. In it I’ll have the following items:

• Laptop and charger
• Powerbank
• Inhalers
• Colouring books
• Phone and charger
• Pencil case with coloured pencils, pens, pencils, eraser and pencil sharpener
• Notebook
• Small plastic toys
• Fidget cube
• A small cuddly giraffe known as Jerry
• Chewing gum and sweets
• Nook and charger
• Book(s)
• Painkillers
• Paper bag
• Earphones
• Wallet
• Oyster Card
• A notecard that has my sister’s contact information on and details of why I may not be verbally responsive

Now some of that will slip into my handbag rather than my backpack, and I’m aware it looks like a lot, but actually it’s not when you consider most of it will fit in smaller folders/wallets inside my backpack, but I need to be prepared for anxiety attacks, PTSD flashbacks, Sensory Processding Disorder Overload, or shutdown. These are the things that can help calm me down, and/or are essential to me getting around.

I also need to look at the accessibility of the activities I intend to undertake and just how easily I’ll be able to do them. Like for instance on this London trip, one of the things I am doing involves this amazing British Library trip with Quest Retreats. So I’ve spent a good amount of time checking the accessibility of the library, making sure that I’m able to decide on the day if I need my chair or not, and I’ll spend a few hours with my sister going over transport routes from the place we’re staying so we have options available. Because of my Asperger’s I need to know in advance the routes I’m taking. It minimises stress. It also means I can have them saved in my phone. I’m less likely to forget them due to fibro fog and that helps to reduce stress as well.

Once I’ve thought through all of these things, and made sure I’ve got my medications packed, with an extra week’s supply, just in case, I then can look at the normal things, like clothes, and underwear, etc. My trips involve spreadsheets, print outs, folders with information in, checking repeatedly for available information on accessibility. I like to know what I’m facing. And I like to know that I’m not going to be disappointed when I get there, like I once was in York. The Shambles has a beautiful Harry Potter inspired shop that doesn’t have a fold-able ramp for disabled customers. The step would have been too high, even with my walking stick, and because of my hypermobility, would have meant a hip out of joint, so I missed out on something I desperately wanted to experience and had gotten excited over.

Being disabled doesn’t mean that I can’t travel. It just means I do things in a different way. I take into account the fatigue I’ll feel each day, the pain levels that may or may not cause me extra issues, the environments I’ll be in and the people I’ll be with. I pack things that are beneficial in making experiences enjoyable for me. I can’t wait for the trips I have coming up, and I can’t wait to share photos and blog posts. I’m going to be so excited about the British Library trip, and the possibility of meeting a friend or two I have yet to meet in person, that I’ll be bubbling over! I just need to prepare a little, okay, a lot more in advance than others may need to.

Who’s the F***ing Snowflake?

A rundown of the past week:

• I posted about my past and lost a friend of 17 years who thought it was more important for me to do something they wanted me to do than that I finally felt able to say ‘This is me, this is why I have PTSD.’ Only a few months ago that would have made me crawl back into bed and sob. Instead I chose to look after myself and protect my well being. They called me bitter and twisted, and yet, my social media feeds have shared photos of puppies, kittens, flowers to cheer people up, uplifting news, and only on occasion rants and grumbles (my blog is my blog is my blog).
• I’ve had people bash into my wheelchair with buggies (3 out of 6 that went past whilst I was enjoying my lunch the other day), and had a woman purposefully slam her crutch int my chair. There was enough room to get two buggies past me at the same time, but apparently they all think they a) have the right of way, and b) can’t drive the pushchairs/navigate with walking implements very well and I’d hate to see any of them drive. Not an apology from any of them. One woman on two crutches (clearly a long term user as hers were red and not standard hospital issue) told  the other crutch user off and the scowl she got in return was incredible. It’s really amazing the amount of empathy for others that seems to have been misplaced these days.
• Faced bullying online by someone I don’t even know today. Oh that’s been fun. I love having it made out that I’m faking my pain levels and don’t have a real illness. I also love having my photos stolen and badly blurred out. I could have cried, I could have blocked and tried to forget… nope. I sent out a rallying call. One that I continue to send. Please if you can, click the link, report the guy to instagram for bullying and harassment. I can handle being picked on but there are others that can’t. I’m lucky he chose me. I have a community who will support me and help me to get his post and him removed. He’s anti everything we believe in guys, girls, and non-binary peeps. And he and his Republican Trump following friends are soooooooo hurt by the fact that me and mine aren’t letting him get away with it.

WHO’S THE FUCKING SNOWFLAKE NOW?

When you’ve met one person with…

My dear and loyal readers, you know the drill by now, I’m an Aspie, I have various medical conditions and various disabilities, and I’m Queer as that rainbow that’s coming after the thunderstorm that’s currently raging outside your window. Here’s the thing though. Having a list of labels a mile long means I can quite happily confirm that old saying I’ve used as the title to this post. When you’ve met one person with x, you’ve met one person with x. What you often don’t here from the disabled community or the chronic illness community is something I’m going to say now, can we please apply this within our own community too?

Yes, I’m not going to deny that I can run off a list of traits for each of my disabilities and conditions that I have in common with others, I mean how else would they have been diagnosed in the first place? But here’s the thing. Just because we have things in common, doesn’t mean I perceive myself in the way you do, it doesn’t mean my various conditions interact in the same way yours do, and it doesn’t mean that I’m going to look at life in the same way you do. It also doesn’t mean that I’ve not got it as bad as you, or that I’m faking or lying about my conditions because you see me handling things differently from you. Has someone aimed a gun at me yet? No? Are we sure? Then I’ll continue.

I have Asperger’s. I find eye contact with people difficult. More so if I don’t know the person/people in question. But I took drama in school and continued it through from the age of four until I was in my mid twenties. I have learnt how to fake eye contact in order to be perceived as not having difficulties. It drains me. But please don’t assume this doesn’t mean I am not struggling with it.

My fibromyalgia and arthritis mean I’m constantly in pain. There is no relief. Some days the mere ability to move out of my bed is out of my reach. However, I don’t let that stop me from trying to do things. I have learnt to pace myself. If I can’t do something one day, I forgive myself, I pick it up, put it aside, and try to do it the next day. I count each thing I do manage as a blessing and each thing I don’t manage as something that can wait. I try to look at the positive side of things because I don’t want to be taken over by the pain. I will smile through the worst pain imaginable if it means that I can look at things more positively.

I will let my body decide what it can do and when. I let it decide if today is a wheelchair day, if it’s a walking day, or a combination of the both. I know when to use which optional medications and when not to. I know which ones I need to take daily and which ones I don’t. I’ve gotten better at knowing when I need to listen to my medical professionals and when I need to put my foot down and make them listen to me. My life is about choices that allow my adaptation to my conditions/disabilities to make it the most fulfilling it can be for me. And that means I know what is best for me. I will take advice but that doesn’t mean that I’m going to sit here and listen to all of it and not think for myself.

Right now I know the medical path that I want to follow. I know that I need to chase up my pain specialist and make her clinic realise they can’t keep pushing my appointments back. I need to sit down with her and tell her that I’ve spent the past few months researching my options. I don’t want to be on Gabapentin. The side effects listed could make my PTSD worse, they could exacerbate my anxiety and depression, and I’m not willing to take that risk. So whilst my GP has prescribed it, I won’t take it. Morphine may be great for friends of mine, but that’s not a path I’m ready to take yet. I have the genetic disposition for addiction. It took me 10 years to kick nicotine, and that was after I quit smoking. I’m talking 10 years to kick nicotine replacement therapy. So no, long term opiates are not an option I want to explore right now. Low Dose Naltrexone is. But I have to speak to my specialist about it because my GP can’t prescribe it. That’s how it works in the UK.

I have spent my entire life in and out of hospital and doctor’s appointments. I’ve been through more health professionals than I care to count, and considering I reach my 35th birthday in less than three months, and the doctors said that given the level of my heart problems at birth I’d never make my 5th birthday, I think I’m doing well. In the 80s a severe coarctation of the aorta and a heart bypass on a six week old baby weren’t a very high success rate. I was expected to need another one in my teens if I made it that far. Well I never needed that second bypass, and touch wood, I’m still here. I’m also the only one who’s lived my life. Who has lived through what I’ve lived through and seen what I have seen. I’m the only one who has the memories that cause my PTSD flashbacks, my anxiety and my depression. I’m the only one who knows how my Irlen tints help my SPD and Asperger’s.

I appreciate the advice of my peers more than you’ll ever know. But instead of telling me what you think I should do, whether you have one, multiple, or none of the same diagnoses as me, how about trying to explore options with me? Maybe we can talk about which options I’ve already tried, the ones that have worked and the ones that haven’t. Perhaps we can discuss why I don’t want to try the one you swear by, or why I’d like to research it more. And hey if you want to ask me what I think of something, I’m there for you too. Just please, please remember, that ultimately, the decision is mine. If I chose to do or not to do something, that’s my choice. But it’s a choice I’ve made because ultimately, I’m the one that knows me. None of us chose to have these disabilities/conditions/illnesses, but we can choose how we adapt to life with them.

Milestones, New Chapters, Positive Steps

In just over 6 months I turn 35. I’ll have been alive been alive 30 years longer than doctors expected. And I’m proud of that. A lot prouder than I am of most things in my life, because it marks me as a survivor against all odds. The scar that runs from my left under arm up my shoulder blade from open heart surgery as a 6 week old baby in 1982 reminds me of it daily.

I’ve overcome a lot in those extra years. I’ve been through endless medical visits. I’ve dealt with abuse and bullying. I’ve had physical, emotional, and mental issues to face, and I’ve always come out stronger. I face pain on a daily basis, but I do it with a smile and grace (most of the time), because each day is an extra gift that I didn’t expect. That doesn’t mean to say I’ve always seen it that way, but it’s how I see it now.

I’ve attempted suicide five times in those extra 30 years. But I’ve never succeeded. I’ve been stopped by loved ones in the nick of time, by a stranger once, and by my guardian angel twice. I’ve self harmed, I’ve suffered from anorexia and bulimia, I have PTSD Asperger’s, endometriosis, asthma, Irlen Syndrome, and severe anxiety, and there are days I want to hide under the covers with a razor blade but I choose not to.

I get frustrated at things, I get angry, I scream, I rant, I shout, just like the next person. I also go into meltdown and shutdown periods. I am far from perfect. But I am learning and I am evolving. I am changing and I am understanding what is right for me as I get older. And that means that I am closing chapters in my life, as well opening new ones. It’s a scary process but it’s an amazing experience. 

I am choosing to look after me as I come to terms with my diagnoses of fibromyalgia and auto immune arthritis. To learn what they mean in regards to my abilities and my life. I’m learning to understand how they work in conjunction with my other disabilities and conditions, and how I can push myself whilst pacing myself, and how they change my advocacy mission.

Will I be here for another 30 years? I can’t answer that. But I do know that I can honestly say that I hope so. And I hope to be as grateful for each of the days that comes. I hope to be able to smile at my chosen family and greet them with the hugs and love that I do now, even if I don’t have the energy I once did. I want them to know how grateful I am that they are in my life. And on my 35th birthday this year, I want to open my eyes and smile, knowing that I made it despite what my mum was told. And that whilst she’s not here to see it, I’m still going strong, with her in my heart.

Tearing at my flesh- A Poem (TRIGGER WARNING)

BEFORE YOU READ THIS, PLEASE BE AWARE THAT IT COULD BE A TRIGGER IF YOU SELF-HARM. I DO NOT WANT TO TRIGGER ANYONE AND AM MERELY TRYING TO GET MY OWN THOUGHTS AND FEELINGS TOGETHER.

It’s tearing up inside me
This pain that radiates
Causes my depression to
Tumble into darkness
My fingers seek out
Traditional ways to
Concentrate the pain
But my heart reminds
Me of a promise that
I solemnly made
I ache for some control
In this crazy world
Stimming helps
But is not enough
At times it’s all I can
Do not to pull at my
Own skin and watch
The blood form as
Nails dig into flesh
I made a promise
Which I intend to
Keep even though
My mind and body
Scream as if to
Break it once
And for all
But it’s a promise
I cannot and
Will not break
And so I allow
The stims to flow
I sketch and write
I read and play
Games in the hope
That the desire
To mutilate flesh
Recedes for one
More difficult day
Her words remind
Me that to tear
Skin from muscle
Hurts not just me
But her as well
She gave me truth
I did not ask for
Trusted me to
Carry on my
Current path and
Stay away from that
Which tears us both
Into a million shreds
It’s a difficult
Path to follow when
Pain not of my own
Pulses through
My body and
Leaves me unable
To do the simplest
Of my daily tasks
Without sobbing
Or faltering to stand
But in not giving
In to temptation
I am maintaining
Some semblance
Of control and
That is what I
Need to remind
Myself of when
I want to scratch

(C) N.A. Le Brun/scribblenubbin 2016

Travelling as an Aspie with other disabilities

I love travelling. I love being somewhere with different sights. In that I’m not that different from my NT (neurotypical) sister. But I have a checklist that relates to my Aspie nature as well as my Arthritis, my Irlen Syndrome, my PTSD, my Asthma, and my Endometriosis that others wouldn’t even think about.

If I’m travelling I need to look at the following:

• Am I going alone? If so can I avoid being in crowds for too long? If not, will I be able to find somewhere to escape to before the Sensory Overload kicks in?
• How much pain medication am I likely going to have to pack?
• Which pain meds do I bring?
• Can I access want I want to do with my walking stick or crutches?
• What are the potential triggers I face on this trip?
• Do I have enough antidepressants and anti anxiety meds?
• If I am going with someone can they recognise the signs of a meltdown and do they know how to handle it?
• What sort of air quality am I facing? Do I need both inhalers? Have I packed my asthma card in my wallet in case I get hospitalised?
• Do I need travel insurance? If so does it cover pre-existing conditions? How much of my holiday budget will that take up?
• What sort of lighting do the places I want to see have? And will my tints be enough? Should I pack my baseball cap too?

These are the things I look at before I even book my tickets. As an adult I have less meltdowns but I still stim. I’ve stopped caring what those stims look like to others. But there was a time I would have factored that into my list as well. 

You would think that cities are ruled out by that list. But they aren’t. Even somewhere busy like London has quieter spaces. The Starbucks I’m sat in as I write this is calm, lit softly, relaxing. I’m here with my sis but able to retreat into my quiet calm space after facing the crowds. And I know should I go into a meltdown, have an anxiety attack, a flashback, an asthma attack, or go into sensory overload, she knows what to do. 

I can enjoy travelling in my own way. But I will always be grateful to return to the comfort of my own home at the end of the trip.

To my father

I’ve written endless letters to you and never sent them. I’ve burnt the ones on paper and deleted the ones on the computer. I’ve tried to understand why you did what you did and I’ve failed in coming up with one reason as to why either of us deserved it. And it’s taken love from an unlikely source to help me see we didn’t do anything to warrant your behaviour. The fault was not in us but in you.

I won’t focus much on what you did to Mum, except to say my teenage self begged you to leave rather than continue to cheat on her. You didn’t. You were too selfish to see it would have made her final years less fraught with unhappiness. She hid it as best she could from us, but I saw it in her eyes when she thought we weren’t looking.Your snide comments and your constant emotional abuse have left me with deep scars. And for a long time those scars were filled with anger and hate. They still sting and haven’t fully healed over, but the anger and hate for the emotional abuse has subsided. I still find it hard to trust new people but I’m working on that and I think it’s helped me better judge who I want in my life and who I don’t. 

You gave me a distinct distrust of men and yet I work with them all day, I have male friends in my life whom I have learnt to trust, and I’m seeing that you aren’t around every corner. 

You chose to see me the way you do. You chose to focus on my sex and the fact you think women should serve men. You chose to publicly act like a decent man and privately become the monster who caused part of my self harm and PTSD. I chose to never go back after you kicked me out and I choose to look for the good in my life. I choose to embrace those who see me for me and not for what I can give them. I choose to smile when someone takes the time out of their day to contact me.

I’ve spent too long fighting demons you helped to create. Too long dealing with nightmares and doubts. You made me question the motives of everyone around me. But no more. I’ve still got a way to go before I can truly say I’m free of those demons but I’m getting there. One day I’ll forgive you, I’ll never forget but I will forgive. And it won’t be for your sake but mine. Until then, I have arms to hold me when I shake, shoulders to cry on, and more love in my life than I ever realised was possible. In the words of Sarah from The Labyrinth – YOU HAVE NO POWER OVER ME!

Mental Health Check-In

Things are changing when it comes to my mental health. They are slow and gradual changes, but they are changes nonetheless. Things are taking a gradual move into the positive direction and I want to document that here on my blog. I’m not going to cut any corners in this post, so I suggest you don’t read below the cut if you think that this post may trigger your own issues. I’ll also touch on my ASD as well as my PTSD in this post because they can aggravate each other.  Having PTSD as an Aspie, I’ve found, can intensify the things that I experience as a result of the ASD.

I am living, not just surviving.

Someone recently told a dear friend of mine that she and I are survivors. And it’s true we have come through a lot, we have faced the obstacles and challenges that greet us and we have tackled them to the best of our capabilities. We have shown strength that we didn’t know we were capable of, and in doing so we have found each other. But we are not just survivors. There is more to our tales than that.

Today I choose to start living my life, to start loving my life, and to start changing my life in the ways that I know will make it better. No more getting through the day and saying ‘I’ve survived’. No more struggling to find the strength to keep on pushing through. Because today is the day I reclaim my life for me.