suzefricker@mylifeaccordingtome.org Available all the time, just send me an email and I will get back to you.

London is not friendly for disabilities

I have been feeling quite low today. Not just because my stomach has been going a mile a minute but with the realisation that if I would like to stay living in London, I am going to need to find a second job. This will mean that I will be working either 6 or 7 days a week.

Why is this you ask?

Well simply put, it is the cost of living in London. Where your perscriptions can be up to or over £10 per item. Where people are less likely to offer you help and assistance if you have a problem. Where transportation systems are not retrofitted with things like LIFTS or escallators so people like me have to avoid certain stations. Where to find somewhere suitable to live you need to have a budget of over £1000 per month without bills included and where the cost of travel goes up yearly.

I am on 8-10 medications a day so a month on medications alone I can be paying £80-£100.

Living in London is hard but when you work here it is even harder because realistically you have to stay here.

I may even have to give up blogging if I ever find a place of my own unless I find something that can run off of my phone for a while.

London is not suitable for the disabled and yet I am stuck here.

If anyone out there is able to help me please feel free to donate money to me via my paypal paypal.me/suzef86 I gave up with Gofundme as people seemed more interested in donating to people who want to spread hate then to help those in need so I decided if anyone wants to help me they can and the link above should help.

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Feeling a little low

Feeling a little low tonight.

Remembering the training course I have been on. The teacher makes these comments about me and I just want to hide away. I feel he needs to learn more about tolerance of people with other disabilities. I feel like I have to hide away. I don’t think I will ever go on any training course where this trainer is teaching ever again.

Sense of achievement

Yesterday I received an awesome boost.

Due to my varying disabilities I struggle with a range of things. One of those things happens to be cleaning, more specifically making my bed. I can do the sheets and the pillowcases but doing the duvet cover is something that takes so much energy and causes me so much pain that I tend to avoid doing it. I would normally ask my mum to do it for me.

Well last night I had a little accident when my water which had a berroca thing in it kind of exploded all over me. I asked my mum is she would change my duvet cover and she said no. Fair enough it was like 8 pm. So I went back to my room and decided well, I may as well just try if it failed then mum could do it for me when I got up. So I went to the airing cupboard and got the new bed linen to change my bed and I got to the duvet. My back was hurting and I was doubting myself but I gave it a go. I managed to do it for the first time ever. I changed my Duvet Cover.

For those of you who do not have a disability you may not understand how huge this is for me. I really have NEVER changed my duvet cover. I just couldn’t. However, last night, was the first time I was able to do so. I was sore and hurting for the rest of the night but I achieved it. To me this was AMAZING. I am so proud of myself. I cant believe I did it.

I am so proud of myself!

Spoon Theory, Social Energy and Music

So, its sounds like a crazy title of a blog on disability however today I wanted to talk about these thing.

Lets start with Spoon Theory. This is a theory that people with disabilities have x amount of spoons for each day and they have to apportion the spoons so that they can make sure that they have enough to get through the day. Every time that you do something starting with getting up in the morning you loose a spoon. The idea is to not be in negative numbers (or borrow against the next day).

Social energy is relating to neurodiverse conditions which states that a Neurotypical person has one size tank and neurodiverse people have a smaller tank. Like Spoon Theory your tank empties during the day however, unlike spoon theory you can do things to refill your tank. The idea is that you need to know where your tank is and know when you need to go out. Because a neurodiverse persons tank is smaller it empties a lot quicker and when you get to around 30% your in the danger zone of meltdowns or over-stimulation. So you have to manage your tank well and take regular breaks so that you never get to that 30% mark or below.

Now, you may be wondering where music comes into this. Well, for me, Listening to music is one of the ways I refill my tank. It doesn’t help with the spoons but it helps with the tank. You see most people with disabilities have more that one condition. A lot of Autistic people I have met also have another medical condition which also relies on the spoon theory as well. it is easy to say that you follow one or the other theory but the truth is that it does not always work.

This, I have learned the hard way. I have tried living with one theory and realised I have struggled and not understood why until I found the other one. There is also nothing wrong with following both theories either. You can be low on spoons and have to plan the rest of your day carefully however, you are able to say you have a 1/2 full tank. This is what I choose to do on a regular basis and so far it has worked.

I am not saying that it works for everyone but here are some helpful things for you to remember;

  • If you are following spoon theory make sure that you know how many spoons you start off with for the day. Some people could start off with more then others depending on their condition and how it affects them.
  • If you follow the social energy theory then you have to keep a regular eye on your mood and when you feel the most hyperactive.
  • If you follow the social energy theory, know what will help you refil your tank. For me, I get to the 30% mark and I stick my headphones in and start listening to music. He helps bring me back to an even keel and I am a lot better then I was before I put them in.
  • But most importantly, know yourself. Know which is best for you. If you dont need to use spoon theory dont as it can cause you stress and vice versa with the social energy tank.

What I have found with this is that I am able to do a lot more a a proud disabled person by following these theories and you can do so as well. Just find what works for you.

Honesty

So, I am waiting for my pills to kick in and I am honestly sitting here thinking about why I blog.

When I was diagnosed with my Autism it was like a Eureka moment for me. I had always wondered why I had struggled so much and realized that I needed a way to let out some of the stress I was going through on the day to day with all my disabilities. It really isn’t fun to live like this. Don’t get me wrong I know that I have achieved a lot whilst still having disabilities however it is definitely not fun.

So, I decided that I would blog about what life is like. The highs, the lows and everything in between. I know people do not want to hear about this but by blogging I am able to get the stresses of every day out and it really helps me. I am learning the way to deal with everything and live my life proudly as a disabled person.