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.

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.

Irlenite

19th to 23rd October is Irlen Awareness Week. In order to celebrate this and help raise awareness for a condition that controls my life, I’m asking you to consider the pitfalls for those of us who have visual stress.

I grew up with labels like clumsy, daydreamer, inattentive. I grew up not knowing that the way I saw the world was not like everyone else. I didn’t know I shouldn’t see halos around people on a stage in a darkened theatre when I looked at them or that sunlight wasn’t supposed to cause me severe migraine pain. I grew up thinking everyone else saw things the way I did, that the words jumped off pages for them too. I didn’t know that there was an alternative to hiding in the shadows in order to rest, that I could be in a room without needing to adjust the light. I never knew that the reason I kept falling over was because where I thought things ended and I began wasn’t where they were at all. I never saw the full richness of colour, the nuances of shade. I didn’t know that clouds could have such texture. Until the day I put my tints on, I lived in a world where colour was bleached and definition had no meaning, because I couldn’t see it.

Now I see the world with different eyes, I see all the different greys in clouds, see the beauty of their texture, and the depth of the sea. Words stay still on pages, the sun looks beautiful in the sky, without causing me pain. I can stand on my own two feet and not be viewed as that clumsy one who can’t see the edge of the table over there. I can focus without having to let my eyes wander. I’m not inattentive, I’m a visual learner with visual stress. And I hadn’t known that for most of my life. But thanks to two pieces of tough tinted plastic, that stress is calmed, my sensory overload progresses more slowly.

I am an Irlenite! Watch me change this world!

If you want to know more about Irlen Syndrome please go to www.irlen.com