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It's just ...

Today, I got to do something that I really enjoyed. And that has had repercussions.


I usually say to people that I don't work before 10am, sometimes later. I tell them it's because it takes a while for me to go through the evolution of humans to be upright. I say that I like to wake up naturally so that I have slept off my medication.


But, I had been invited to an event in Winchester, starting at 9.30am, that I really wanted to go to.


It will be alright, I thought. Ever the optimist.


My alarm went off at 6.30am. I got up, came downstairs, washed my cats' bowls and fed them. I made and ate my breakfast. Then I showered, dressed, and did my hair.


My partner drops me off not far from the first train station. I get out my floral walking stick. I cross the road; go down through the subway; walk up the shallow stairs; cross another road; buy my train ticket; then sit on a metal bench to wait for my first train. It's 8.15am on a cold, October morning.


I get a seat near the door on the train and travel the three stops to the next station.


I get off the train and walk to the lift, as my next train is leaving from platform one and I'm on platform two. I walk across the corridor to the lift to take me to the next platform. Then, when I get there, the board says that the next train is actually leaving from platform two. Back to the lift, across the corridor, in the next lift, down to the platform.


Then the guard says that the next train to Winchester is leaving from platform two but the train that will get there first is leaving from platform one. Sigh.


Back to the lift. Back across the corridor. Back down the lift.


I stand for ten minutes; get on the train; I get a seat a few rows from the door.


I arrive at the station. Leave; walk down some steps; walk through a subway; then start walking, mostly downhill, to the venue. It's a 15 minutes walk.


I get to the event and spend the next two hours standing and chatting to several incredible women. We talk, we laugh, we share passions; brilliant!


And my pain levels are increasing rapidly.


Once the event finishes, two hours later, I cross the street to one of my favourite cafes. I order a hot chocolate (a MUST in Chococo) and a toastie for an early lunch. Delicious.


As I sit there, my pain worsens. Do I get moving or do I rest a bit longer? My feet are blistered and throbbing; my hips are spasming; I feel like I have been slammed against a concrete wall.


I decide to order another hot chocolate. I walk to the counter. This time, I ask the server to carry my drink for me as my usual pain in my left arm has got worse and I feel wobbly on my feet.


I sit. Until I can feel myself seizing. Time to move.


I start the walk back.


I stop to chat with a homeless woman. She looks so cold. She tells me how she hardly slept the night before because she couldn't get in the hostel. I give her a bit of money towards a room there for tonight. We chat some more. My pain is horrible but, I saw several people ignore her before I reach her and I don't want to add to that number. And, my pain may be horrible but at least I have a warm home to go to.


I say goodbye a little bit later and continue the walk to the station. I hope to catch a bus but there are none at stops when I get to them. And that relatively okay downhill walk to the event, well, it's now uphill. And I feel every step intensely.


I get to the station. There are no seats available. My stick is covered in flowers so it's easy to see. No-one offers me a seat.


I get on the train. There are no seats free. Again, no-one offers me a seat. Two stops in, someone leaves and I get their seat.


I get back to Southampton train station. Back up the lift; across the corridor; down in another lift.


I've already decided that I can't do the second train and the fifteen minutes walk back home so I leave the station, cross two roads, and get on a bus that's, thankfully, waiting. The bus stops very near our house.


I walk the last short walk home and go indoors. I need to take my coat and boots off; I need to wee; I need to make a drink. But I hurt so much and I don't know what to do. So I cry. Then I do what I need to do and I settle on the sofa.


And the pain gets worse. I'm at my limit for pain killers. I just have to sit with it.


Now, why have I shared this with you?


When I'm invited to things, people often say, "It's easy to get to! It's just a little way from the train station/bus stop!"


It's never "just", not for people like me. It's walking, and stairs, and on and offs, and standing, and jostling. And pain.


Pain that is far worse than my normal everyday pain. It's pain that will take me a few days to recover from.


All from "just" going to an event that's "easily" accessible by public transport.


So, if you have a friend that has disabilities, that has a chronic condition, and you want them to go to things with you, and they're, like me, unable to drive, please offer them lifts.


If you put on events that you want to be inclusive, offer to organise lifts for your guests.


And, if you want some guidance on making your friends feel more included, on making your events accessible to as many people as possible, ask for help; and, if you don't know of any organisations that offer help, reach out to me, ask me questions.


And please remember that, before our disabilities, before our conditions, we are human, with the same wants, needs, and desires to belong, to be included, to do fun things, to enjoy your company.


You can make that happen.


#Disabilities #Inclusion #Disabled #DIsabledBusinessOwner #DisabilityUnion #SouthWesternTrains #Chococo #TrainTravel #EB #EpidermolysisBullosa #ThoracicOutletSyndrome #Spasms

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