On navigating the train as a wheelchair user

The trains are somewhat a nightmare in the UK at the moment. And this can sometimes make navigating them a little tricky as a wheelchair user.

In the UK you are meant to book assistance in advance and then it gets approved and should be provided.

However assistance relies on trains being on time, sufficient staff and the staff being able to find your booking (Yes they often struggle to do this)

So, it’s fair to say sometimes it can be a tricky affair and lead to a bit of improvisation and trust that you’ll figure it out somehow.

I have not been met with a ramp before and had other passengers help me on and off a train. I’m ambulatory but I don’t have the balance to be able to lift my chair onto the train and myself. Especially when there’s a big step and/or gap!

Or more recently I had to flag down a staff member when they were doing a crew change at my stop so I didn’t end up in Edinburgh. As beautiful as Edinburgh is, I did in fact need to be home that evening because of a medical appointment the next day.

I also often travel routes that require a trip between main London train stations using the underground. It is fair to say that the reality is it takes longer if you are unable to use the stairs and/or escalators. I used to hurt myself by taking the stairs for this reason!

The number of lifts and size of lifts at key stations is not sufficient for demand a lot of the time. Between people with buggies, suitcases, wheelchair users and other mobility aid users along with people who pay have invisible disabilities there is simply not space for demand.

This can lead to the given connection time not really being enough, depending on delays and how busy it is.

As a young person I also often find I am the youngest in passenger assistance areas which feels very weird at times to be the youngest by multiple decades in a space.

Needing passenger assistance also leaves little room for a spontaneous trip! Whilst that isn’t really my thing, I know if I lived with my family having to book 12 hours in advance if I just wanted to get the train to the gym would grind my gears.

Nevertheless, I still find using the trains as a wheelchair user (especially in big stations or for long journeys with changes) easier than walking. Walking is excruciating for my lower body and can massively intensify the pressure in the back of my head and vestibular issues. Using crutches may mitigate some lower body pain but they can put too much strain on my shoulders and certainly more than my wheelchair does!

This is something that able-bodied people often struggle to understand. Yes the wheelchair has it’s inconveniences and it’s stresses. But for me, they are worth it for the pain reduction and ease of movement I get as a result. I’m not dreading walking down long platforms, partially dislocating shoulders by carrying a heavy rucksack on my back (it only needs a waterbottle to do that). It’s better than not having to deal with the lack of seating at busy stations because I come with a seat. Or worrying about not being able to find a seat on the train.

Whilst traveling isn’t necessarily a smooth experience with a wheelchair, it’s a significantly more comfortable one.

The Pros and Cons of Social Media as someone with chronic and mental illness

When I was 14/15 Tumblr and instagram made me realise I wasn’t alone. I wasn’t the only one feeling how I felt. Depressed, anxious, alone, and misunderstood and when I had an eating disorder and moved into recovery it was a space of source and solidarity. It was my safe haven. It was a place I found connection.

When I realised I was chronically ill, social media became again a source of solidarity and support. But it also became a valuable source of information. How to manage symptoms such as nausea, how to navigate solo travel as a wheelchair user, and how to be a better advocate. It also opened me up to the world of para-sport, became a source of friendship, and allowed me to get involved in voluntary work.

Social media has been invaluable to me and I wouldn’t be who I am and where I am now in terms of my disability acceptance without it.

Without social media, I would still be gaslighting myself that I am not really sick.

However, it is impossible to ignore the dangerous and toxic aspects of it. If you post on social media you are open to getting hate or people just being plain condescending. And the hate can really hurt and speak to your insecurities. You need to be able to deal with that in whatever way works for you. For me that means taking a break and trying to calm my nervous system.

There’s also just the general attitudes towards disability on some parts of social media which can be harmful. It can definitely add to any pre-existing anxiety and paranoia if you see people say shit about how we are scroungers if we are not working and are more than a corpse in a bed. Or see other disabled people being ableist and doing the whole “I am so so disabled and I still work full time, if I can anyone can.” That hurts.

But I know before I got as sick as I am now I definitely felt the same, I just didn’t say it. I honestly think society drives us to feel that way, to need to overcome our disabilities and only then are we enough.

There are also various people praying on the chronically sick for money. Selling treatments that aren’t likely to work for extortionate costs. They know we are vulnerable, we are exhausted and we want to get better. It’s important to know that if it looks too good to be true, it probably is.

On the mental health side of things, you may find out about eating-disordered behaviours or weight loss tips and tricks that you wouldn’t have tried before. It’s important to try to avoid triggering content that may harm you.

Despite all the negatives, for me, social media has been a lifesaver. The positives far outweigh the negatives. But equally, you need to have your wits about you, have a thick skin and if you don’t have the mental energy don’t try and argue with people who won’t change their position on a matter.

On feeling like a fraud

I started taking prescription cannabis and low dose naltrexone recently. The result. A significantly better few days than usual. And even though I still do have significant pain, fatigue, dizziness etc I’m suddenly feeling like a fraud because I feel good. Better than I’ve felt for almost two years.

In my head that means I should be working, except I don’t have a job to work because my health ruined that and there’s no guarantee this good few days will manifest into a good few months or years. The stability I need to work.

In my head, I need to tidy my room but physically my leg and back pain is preventing me.

My brain can’t just enjoy feeling better than usual. I can’t just sit in the moment, do things I normally can’t do guilt-free, and embrace it.

My brain thinks, what’s next? Let’s do all these things I need to do and get a job. Except pain is preventing all the things I need to do from happening because they are physical in nature and what purpose is a job if I don’t have the stability to do said job.

Also, I still have upright limitations so am restricted when it comes to a job!

It’s that feeling that despite still having significant symptoms I’m suddenly not sick and so should resume normal activity. That feeling that disabled people can’t be seen to be enjoying their good days, weeks or months with chronic illness if they can’t work the rest of the time.

It’s the capitalism and need for productivity and external validation from the people around me and society.

As if feeling better in some respects means my room should be clean and tidy or I’m just lazy, with no regard for the rest of my pain preventing that, and as if I suddenly should have a job. With no regard for the fact that that’s not how the world works and it’s important to find a stable baseline before moving back into work.

Having felt a bit better for a few days mentally is hard. Whilst this being my permanent would be a great improvement and I would welcome it. The not knowing and the in-between stages of getting life together if it does seem to be long term are hard.

I often feel this way if my health improves a bit after a rough patch, and used to feel like this even if I had a good day.

Mentally, there’s improvement in that respects.

But it is hard feeling in that in-between of sick and not sick. Not sure how long it will last or whether I can forge new limits, and a better quality of life.

I feel like I should be happy and I am, but that happy is clouded by my warped brain thinking a few good days makes me a fraud, and makes me lazy.