Medications and being sensory

I’ve been wanting to write a post on my feelings on medications for a while. Have they helped me? What have I found difficult about them?

Medication is weird. Each time I try a new one it’s like a huge big change and I battle with the pros and cons each time.

Mental health medications:

I’ve tried them all. Well it feels that way. Since the age of 15/16 I’ve tried all sorts. Some with weird side-effects and some that have proven to be helpful enough that I’ve stayed on them for years. I have been/I’m still on a few. I’ve tried anti-depressants, anti-psychotics, anti-anxiety medication, etc. I’m currently on two medications for my mental health. I use a weekly pill box so I know what to take each day.

Annoying side effects I’ve come across:

  • Never feeling full and always feeling starving hungry
  • Muscle twitching. Not ideal when you’re sat in a meeting at work and your entire leg twitches throwing you forward in your seat a bit (true story #lovinglife)
  • I regularly forget to take the flipping medication (not a side effect just Emily’s rubbish memory)

Cholinergic Urticaria:

Think of it like a rash / hives. I take anti-histamines to control it, otherwise I flare-up and look like a tomato. Think Violet from Charlie and the Chocolate Factory (but red) and you’re not far off. If I’m honest I still flare-up and go bright red and develop a nice patchy rash in these places:

  • All over my face
  • Chest
  • Arms
  • Hands / knuckles
  • Legs / knees

Very random. Read more about my cholinergic urticaria in a previous post here: Cholinergic urticaria…and what on earth it is.

Other:

Night sweats. I take a ridiculously accurate amount – 3 quarters of one tablet that’s how sensitive I am to this one. If I take a full tablet I find I don’t pee. Like all day. At all. This is not good apparently. (It’s a tablet that primarily elderly people can take to improve incontinence issues but it is also used to treat excessive sweating. Interesting right?!)

My conclusion:

I think medications have helped me. In the long run. They never seem to kick in for what seem like months and then I feel more stable without realising and wonder if it’s the medication that’s built up in my system and is finally kicking in. Of course I’m no doctor or medical professional. Some people just don’t find medications work for them or have never tried them. And that’s okay too. It’s so hard to tell what’s helping and what isn’t so I totally get that. For me it’s something I think I’ve found beneficial and I have followed my own doctors advice on what he feels is best for me.

One thing I want to mention is that side effects do indeed suck, I 100% feel for all those out there who find their medication is helpful but are then are stuck with annoying and sometimes plain weird side effects.

Why not listen to my podcast surrounding the idea of medications and mental health here

And just a tiny bit of humour to finish:

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Illustrations in the slideshow by the epic illustrator: Ruby etc

 

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Sensory Festive Season 🎄

Ah yes the festive season is well and truly upon us. Welcome to the ‘random questions Emily gets asked at this time of year’.

Yes I went to my team dinner at work. Yes it was painful. Yes I went to our company Christmas party. Yes it was painful and LOUD. Yes I got dragged onto a dance floor against my own wishes. But I survived the environment. Yet I miss ONE cocktail night out and a co-worker comes up to me the next day and says ‘didn’t see you at the pub last night’ and catches me off guard. UGH.

I’m trying to navigate this sensory world and my limit is usually one social / festive gathering and I managed two out of three! So what would make my festive season that little bit better? Less questions.

1. I don’t drink alcohol. For some reason this throws everybody and I am questioned beyond belief. I don’t like the taste. That’s all there is to it! And yes, I’ll have a lemonade instead please.

2. I don’t eat much meat. This throws everybody. Again: I don’t like the taste (although chicken is okay sometimes). It’s easier to say I’m a vegetarian 🌱

3. I do find it difficult to dress up. I can wear a dress but I don’t like anything ridiculously tight or short. And high heels are a bit of a no-go due to tripping over my own feet normally in trainers everyday!

4. I’m dealing with sensory stuff in a new environment and holy moly all these questions do not help!

I can have fun without drinking, eating and dressing up. (Aka: cosy nights in watching Bake Off, Top Gear, Brooklyn 99 or a Louis Theroux documentary. Equally tucked up in bed with a book is just great too!)

Drawing by me. This post featured on my 21andsensory Instagram

You’re not a mess.

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‘You’re not a mess. You’re brave for trying’. It’s so so easy to put yourself down these days. Everything seems that much more difficult to deal with, whether its sensory or adult stuff like admin, self-care, tidying, paying bills. The stuff everyone else makes look easy. It’s easy to think of yourself as a mess. I think of myself as a mess. That’s not nice to write but it’s true. I feel like I am bumbling along attempting to deal with things as they come my way and ultimately feeling overwhelmed sensory and mental-health wise. 

But I started wondering. What if everyone else (the people I think are super cool and have got it altogether in life) also think of themselves as a mess? What if we are all just walking around and thinking like this? I know it comes back to the whole ‘comparison’ thing. Yeah it’s super easy to constantly compare yourself to others because thats all that’s ever in front of you. Instagram, Twitter, Facebook, YouTube, Snapchat it’s never-ending all the different platforms that throw you happy people all the flipping time. It’s tiring.

2018 has been really hard for me and not a lot of people are aware of this. But to share a snippet I would like to mention how awful life feels when everyone is happy and you feel like an utter mess. A social media example: I tap on the Facebook app on my phone and instantly I’m thrown into newly wed couple photos, new baby scans, new travel adventures, graduations, moving house key photos, engagement photos. ALL I WENT ON FACEBOOK FOR WAS TO GET RID OF THE NOTIFICATIONS AND MAYBE SEE A CUTE DOG VIDEO. Instead I am reminded of how I am not progressing in life and everyone is having a great, lovely, happy time. 

The thing is THEY AREN’T. And I am brave for continuing to remember that and to try and create my own happiness. I have learnt to appreciate more of the little things. I love cups of tea. I like sunsets. I like new fineliner pens. I like my comfy dressing gown. I love baths. I enjoy eating blueberries. These give me tiny happiness bursts. Find the tiny things that bring you joy. And flipping hold onto them so tight because they really can help. I’m not a mess. And neither are you or anybody else you know.

We are all figuring our own stuff out in life, yeah some people more then others, but nobody is a mess. I think we’re all braver then we think.

(P.s Note to self: stop opening Facebook just google dog videos)

This post was originally posted on my Instagram @21andsensory

I was interviewed!

Hello. This is just a little blog post to say: I was interviewed on a podcast!

The lovely people from Chewigem interviewed me and the episode titled: ‘SPD and adulthood with 21andsensory’ came out today! If you have a spare moment why not check it out here:

https://chewigem.podbean.com/e/spd-and-adulthood-with-21-and-sensory-sensory-matters-31/

Also you can check out the podcast here on Apple Podcasts

I am a Chewigem Affiliate! They are company who have years of experience, designing, adapting and creating a range of chewing, fidget and sensory aids for children and adults. Check out their website.

I’d love to hear your feedback and any comments you have ☺️

My fidget and stim sensory box!

Hi everyone! I thought I’d upload a video on my fidget and stim sensory box. It’s travel friendly and super useful when on the go! Feel free to subscribe to my YouTube channel: 21andsensory. All the links are below…

I am a Chewigem Affiliate! They are company who have years of experience, designing, adapting and creating a range of chewing, fidget and sensory aids for children and adults. Check out their website.

Thanks for watching!

Sensory Processing Disorder Research Study and Survey

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Hi everyone – this is just a little blog post to let you know about a research study that I’m (and hopeful you will be) involved in.

I’ve been speaking via email to a super lovely student from the University of KOC (Turkey) who is studying Media and Visual Arts and has participated in design research for people with ASD. Now they’ve gone further with research and to specialise in design relating to Sensory Processing Disorder. A survey link was sent through to me this week and I am trying to share it with as many people as possible in order to help with the research!

Below is a link to the survey and it would be fab if you have a spare 5 mins and can fill it  out:

http://koc.ca1.qualtrics.com/jfe/form/SV_032S5XEHYXqKXad

Thanks! Any questions, feel free to ask in the comments below or @21andsensory on Instagram and Twitter.

New Sensory Q&A ✨

If you follow me on Instagram you will have seen over the recent weeks I’ve been trying out a new feature on the platform. I’ve been giving my followers the opportunity to ask me any questions they may have and then posting my answers via my Instagram stories. I bought it would also be worthwhile posting the questions and my answers below (all anonymous). You can still access all my question and answers on my @21andsensory Instagram profile page under the ‘highlights’ section. So here are the questions I have been asked…

What sensory strategy have you found most helpful?

I reckon the best strategies I’ve found are a combination of: sensory diet (e.g body brushing, weighted blankets, fidget toys) alongside occupational therapy which I’ve found to be the most helpful form of therapy. Basically what I’m getting at is that there’s no one sensory strategy…it’s lots of different things in combination that help me to function. And I can’t always function ‘normally’ which I’m starting to understand more.

Tips for travelling with sensory issues?

Ooh okay. Good question but a bit of a difficult one as I don’t tend to travel that much! I do go on trains and drive places, etc but I haven’t been abroad in years. I would say that distraction is the key 🔑. Using things like weighted blankets and jackets, fidgets, chewing gum, listening to calming sounds or music, etc.

Also I like to travel with my own washing detergent and same sorts of smells like deodorants and perfumes so that everything feels a bit more normal and routine. It’s all about making things more easier and comfortable for yourself.

Do you have any tips for how to help someone who struggles with taste and texture of fruit and veg?

I totally understand how much of a struggle this can be, especially introducing new foods (and weird textures are the worst!) I think just trying new foods little (portion) and often (as much as you can) and just trying to get used to the food in your mouth or even just holding it in your hand is a really good step in the right direction. Equally there’s lots of food/textures I just can’t deal with so I just steer clear of them altogether – this is totally okay and acceptable too.

What would one of your top tips be for supporting someone with SPD?

That’s a very good question 🤔 I think each person with SPD is completely different so it’s key to have a quick chat or conversation with the person to check if they are sensory defensive or sensory seeking or a bit of both! Just understanding what a person can and can’t tolerate means you are taking time to make their environment and experience that much more easier to cope in and this will help them to feel more confident. Also being understanding of the fact that we may use fidgets, body bushes, sunglasses, ear defenders, etc to allow us to cope in everyday environments means you are being super supportive ☺️

I think it’s important to have an understanding of sensory meltdowns and providing a quiet safe space or zone (even if it’s a loo break) can really helps people with SPD calm themselves down to avoid a meltdown.

What advice would you give your younger self in terms of understanding your own needs?

Definitely an interesting question. I think I am struggling to understand my own needs even now 😂 but I think I would say to my younger self to hang in there and that you’ll pick up little coping mechanisms and techniques that survive everyday living. I think I’d also say that sensory processing disorder and autism will become more and more well documented and understood as the years go by – so have faith!

And what advice would you give parents? Ps thanks for everything you post, it’s so helpful and insightful!

Another super question…I know it must be so difficult being a parent because you just want to support and help your child as best you can. I know this is super hard because you are unable to sort of see and hear what goes on in our heads and to understand what it’s like to be sensory seeking or sensory defensive.

I would suggest a great thing to start is creating a sensory bin/box with sensory toys and fidgets and allow your child to stim and explore different things. For example my mum always helped me by giving me opportunities such as having a swing in the garden, allowing me to trampoline and have weighted jackets and ankle weights. Feeding that need for self regulation by building up a sensory diet with your child ☺️

I think it’s so important to remember that your child is different and not less. All of my relatives know of my ‘special quirks’ and that’s okay because that’s what makes ‘me’ me.

Ps: Thank you so so much for this comment – it really does mean the absolute world to me! My aim after starting my blog and Instagram account was: if I can help or support at least one person then I will have done my little bit in this crazy old world!

What recommendations do you have for living with dyslexia and dyscalculia? Especially with schoolwork?

Again another great question! I think concerning school work and dyslexia / dyscalculia I tried to make everything as visual as possible. Lots of drawings lots of A3 posters (which I stuck in my bedroom and around my house!) in different colour pens with drawings so the information would stick in my brain. At uni I used to record every lecture via a dictaphone or on my voice memos on my phone so that I could always go back and re-listen to what they had said. This was especially helpful when it came to essay writing!

Do you ever notice if you’re being overstimulated until later on?

I am quite sensitive to literally the world so I usually become overwhelmed sensory-wise immediately after something like a loud noise or bright colourful environment 🙄 I will either escape to a toilet or outside to just get some quiet and calm or I will bottle up how I feel and have a good cry when I get home!

How do I catch my social mistakes? Or should I ask my peers to correct me?

This is always a difficult one. I think it’s okay to ask your family / relatives to maybe comment and suggest where you might be going a little wrong. I find peers and friends can be too critical and not always understand what difficulties I actually have. Much better to ask people who really know you well. I also think ‘neurotypical’ people make social mistakes too – so dint be too hard in yourself because it’s great that you are being social and meeting up with people ☺️

So there you have it – I tried to answer as best I could and I was really surprised and impressed at the amazing range of questions I was asked! If you ever have a question for me feel free to message me on Instagram, here in my blog comments or via my email: 21andsensory@gmail.com and I’ll always try my best to get back to you!