A couple months ago I was honest with my therapist about some very negative feelings and thoughts. We made a safety plan which included calling her or the hotline if it got bad again. I am having a very bad day, am alone, and everyone I know is busy. I'm trying to distract myself but just can't today. I keep wanting to call them, but don't know what words to say. I don't want to disappoint them or waste their time.
Living with a disability can be an expensive and aids such as wheelchairs or bathroom renovations can really break the bank to make life more liveable. Here are ten of the most useful tools and services I use to make my life with Functional Neurological Disorder, sensory issues and a disorder of the corpus callosum easier to cope with.
1. Spotify and Audible subscriptions
These might seem like obvious answers to this question but when my body refuses to co-operate and my fine motor skills go out the window? These apps have saved the day, grounded me and distracted me from the tics and grunts that fill my days. As an added bonus, living in regional Australia means I have to travel for specialist appointments quite often and these apps are an excellent companion on those long drives to the nearest big city.
2. earplugs (and learning how to put them in properly)
Earplugs made of either silicone or of foam have been a disabled girl EDC staple for me for a long time. Cheap and effective, these ear plugs cushion the blow of loud, overwhelming spaces and make trips to the grocery store possible. An important note though is that proper insertion of earplugs makes a world of difference! Check out the short clip below from the National Institute On Deafness and Other Communication Disorders for a step-by-step guide to getting a proper seal with your earplugs.
- 3. Laminated Instruction cards
This one is essential for giving me the confidence to go out in public knowing I will be taken care of during a pseudo-seizure- and it's practically free!
I have written out a short set of need-to-know facts on a business card for strangers to read if I am unable to communicate with them properly. using some clear sticky tape to cover the card completely and make it more durable, This item gets tucked in my phone wallet or on a lanyard with sunflowers on it (a common signal at airports internationally that a person has additional needs when travelling.) Now, when I leave the house I know that my day won't end with an unnecessary hospital visit!
4. Medical ID Band
In this same vein, a Medical ID band gives me the confidence to leave the house, knowing that in a true emergency, paramedics will understand my conditions and treat me in the most effective way possible. This one is especially important.
Mostly though I wear this band to assure myself that I even if the worst case scenario really does come to pass? I have the best chance of surviving it.
5. medication container for keyring
I have PRN. That stands for Pro Re Nata which is some medical latin for "take as needed medication". As another self-assuring measure I like to have them on me at all times while in the stress-inducing environment which is the outside world. So I found a small metal container with a O-ring seal that attaches to my house keys. This small item keeps my pills dry while also being conveniently unforgettable when combined with my house keys.
6. stuffed toy heat pack
A weighted soft toys that double as reusable heat packs? Yes, please! These toys come in a variety of sizes and species (Including unicorns!). They are snuggly and comforting as well as soothing for sore joints or aching innards. This is an upgrade from your favourite Teddy that is well worth the investment. An a few drops of essential oils to the microwaveable pouch and you're got a scrumptious sensory experience!
7. pop-up flower cards
One of the benefits of connecting with disabled friends is that you meet a lot of people who are going through the same struggles as you. However, this might also mean more visits to those friends in hospital wards. I like to have a stack of cards that I can send or hand-delivery to flower-free wards that open up and become a vase of sunflowers or a jacaranda tree. This gift takes up next to no space in your drawer and can really make someone's day while their stuck in hospital. As an added benefit? You'll make friends with the nurses too, who will appreciate not having to go find a vase for you during hand-over!
8. harmonica This is a bit of an odd one, especially since I can't actually play harmonica; but hear me out. If you struggle to "focus on your breathe" to ground yourself and have found that you never really seem to get much comfort from deep breathing? Try getting an inexpensive harmonica. Since harmonicas make sound both on the in breath and the out breath, it's a sensory cue of how your breathing is going. I try to pucker my lips to include two or three notes then breathe as quietly and consistently as I can, for as long as I can. This auditory cue really helped me to distinguish between fast, shallow breaths and deeper ones. You can even get harmonica necklaces for a a portable reminder to pause and open your lungs every once in a while.
9. Webster Packs I used to go to the cheapest, franchise pharmacy I could find and resigned myself to the judgemental looks from clerks and customers. Why does such a young person have so many medications? I bet she is selling them. How sad... and on and on. That was until I swapped to a family-owned pharmacy with the added benefit of Webster packs.
Now, every month, the pharmacist portions out my medication into one convenient sheet. This is especially useful for the tiny pills when my fine motor skills are being tested by FND. Rather than popping out four, tiny tablets, I know just press open the bubble labelled "BEDTIME" and we are off to the races. Another benefit of this system is if you have carers dispensing your medication, you need not worry about getting the wrong doses! The transition to your local, family chemist, despite the increased cost is extremely worth it in my opinion.
10. flowers for mum
My mum is an unpaid carer for me. She is an absolute saint who makes my life liveable in a very real sense. For this reason, when I learnt that mum really appreciates fresh flowers in the home? It became a must-have item for keeping the peace in this house. keeping mum happy and letting her know I appreciate everything she does for me through flowers is my small way of giving back to a woman who gives me so much.
Why can't companies make commercials without deliberately insulting people?
#Disability#Discrimination#Ableism#TV#CommunicationDisorders The problem of ableist and/or otherwise inappropriate tv commercials has been getting to me again lately. Some of them are blatantly offensive/rude ones, others are utterly inappropriate ones for the cultural and social messages socitey claims to want to promote in this day and age. Including about physical health!
These days there are several of them that are getting to me. It seems like companies are incapable of making commercials without deliberately trying to insult part of the population. For example, the pistachios one, where they are making fun of the turtle for being "too sensitive", and then talking to him as if he is deaf or intellectually impaired. Or the "International Delights" one, where they insult people for liking their coffee with "only cream and sugar." By loudly proclaiming that "Boring!" As if there is a "right way", and a "wrong way" to drink coffee (and assuming one drinks it at all).
I don't understand why in this day and age, when we are theoretically, as a society (or several of them, actually) trying to accept and embrace diversity, companies seem so opposed, or unable to make commercials without intentionally trying to insult other people! I'm sure it is possible to make the claim "our product is wonderful, and you need it" without saying "you're an idiot if you don't have/use it." !!!
... and then there are the ones that glorify inappropriate, even dangerous activities, such as multitasking during dangerous activities like mowing the lawn or parachuting, or etc. And what are they multitasking at? Shopping on Amazon!! Yes, I realize this is intended to be humorous, or at least I hope it is! But, at the same time, in this time and place so many of us in North America find ourselves, where so many people are apparently incapable of any kind of critical thinking, and accept whatever they are told, without applying common sense or fact-checking, it seems highly inappropriate to glorify shopping on a mobile device while doing activities that require one's full attention for safety, and basic self-preservation! Especially given how many people probably really do have ther faces glued to their phones for unimportant reasons when they need to have them focused on their external environment! (Say, when crossing a busy street, or walking on a sidewalk where there are other people who won't take kindly to being walked into!)
Other, more recent examples come from Skip the Dishes, which are suggesting that people should order take out so that they can watch the Olympics, rather than cook homemade (likely much healthier!) food!! The deliberately insulting tone of voice used to say "soup" to identify the contents of a person's blender is apparent even to me, with my difficulty reading nonverbal communication!
Deriding people who have learned to cook during the pandemic, and have decided they prefer real food seems like a poor message to be promoting.
Is anyone else bothered by the increase in ableist tv commercials?
Lately, it seems that in spite of, or maybe because of society's focus on accepting diversity, there's been a surge in ableist tv commercials. The one that is bothering me most tonight, due to seeing it repeatedly during the Law & Order crossover event tonight, is the one by Rona. (Canadian hardware/construction/home renovation type company for those unfamiliar with them). It makes fun of people with communication disorders, especially word finding difficulties or aphasia. It fails to acknowledge that some people are trying the best they can to communicate, but may not be able to pull the right word(s) out, or be specific with what they say because of these (or other) difficulties. It mocks people who can't properly name objects, and try with other words, even though professionals actually suggest trying other words that you can think of when you can't find the right word! #CommunicationDisorders#Disability#Ableism#Discrimination#TV#Trauma#Autism#Aphasia
Well, before World Voice Day ends, I guess I should follow through on my impulse this morning to post something about it, spawned by a suggestion from the National Spasmodic Dysphonia Association. I guess I should start with I don't actually have a diagnosis for my vocal spasms and the related breathing, and sometimes swallowing issues, #Undiagnosed but SD was one of the working assumptions by several people in my life (medical professional and otherwise) for a long time. I've been questioning if we got it right recently, but am not sure I'll ever really know, given the lack of specialists arouhd here, and several other factors. Or, for that matter, how much good it would do me, other than just knowing, given the lack of research and knowledge that exists on some of the other possibilities. #Dystonia#VocalCordDysfunction
Anyways, combined with some of the #CPTSD#Trauma#PTSD issues, and the #Autism and #AdultDiagnosis and #SensoryProcessingDisorder#SensoryIntegration issues, I've been dealing with voice issues, and difficulties with #speech and #SpeechDisorders all my life. It was only by giving up on speech as my main method of communication that I was able to learn that there was a purpose for speech, and that it sometimes did have its' uses. #CommunicationDisorders after many years of using AAC for any communication situation I wasn't comfortable in, I am slowly coming to see that not only is speech not the enemy, nor is communication as a whole, but that despite my #CentralAuditoryProcessingDisorder , sometimes I do also prefer to hear certain people's voices, and communicate with them in real time, and through this very difficult medium (for me) with them.
Having been allowed to take control of how I communicate in communicative situations has made a world of difference for me, and changed my whole perspective on socialization on general. Especially as diversity is becoming more accepted in society (mostly. Don't get me started on the backsliding I see happening during COVID!) so that there is less animosity and more patience exhibited by society when they see me using AAC.
#CommunicationDisorders#Disability#InvisibleDisability#LanguageDisorder#AuditoryProcessingDisorder#CentralAuditoryProcessingDisorder just needed to vent at how complicated and exhausting, and diificult language processing is! After a handfull of years of low stress and minimal demands on me from the world, where I got lulled into believing I could rely on my brain and body to mostly cooperate whenever I asked them to do stuff, (for the first time in my life) life has started to remind me otherwise! Today it was watching part of an online comiccon-type thing. Yes I figured out how to turn on the captioning, and even fix the size when it suddenly shrank to infestesimal. But OMG! People, when you are authors or publishers giving panel talks, a little pre-preparation and language organization are called for! Even skipping around to only the important parts, and muting half of what I did listen to, wore me put so much that I needed to lay down in the dark and turn my music on for an hour before I could do anything else today!!! The fact that almost everyone had a British or Australian accent didn't help either, but that's more of a me problem. Accents are really hard for me to decipher due to my auditory processing difficulties.