Observations on Spoonie Support Groups

Hi my loves,

I've noticed a lot recently of how different some spoonies are. Whilst all spoonies have the fact that they are sick in common, sometimes that's all that bares any similarity.

I've observed a lot of negativity in the last few weeks amongst spoonie "support" groups- I KNOW you know what I'm talking about.

There seems to be a constant competition between some spoonies for the title of "Who is sickest". Apparently racking up illnesses and how many times you've been in the hospital determine how sick you are- and sadly to some- who deserves the most pity. For me, I find this completely ridiculous. I do not care how many illnesses you have, how many pills you take, or if you can get out of bed or not. You are sick. That sucks. I will NOT pity you, but I will feel for you and be your friend.

I've also noticed that being sick is sad. Many many spoonies have mental illness because they are sick. I completely understand- imagine carrying deadweight up a flight of stairs every second of the day. Imagine no rest during the night and starting again in the morning. That describes how we might feel physically but also mentally/emotionally. Because of how depressing being sick is a lot of groups tend to have a flat, negative atmosphere that in all realness is a ticking time bomb. Support groups are meant to uplift and inspire.

Many spoonie groups have problems because its hard for admin (who are also sick) to uplift, inspire and encourage their members when they aren't in a positive mindset themselves. As someone who is an admin of several spoonie groups, I've also learnt that being an admin of spoonie groups burns me out really quickly. It's like hitting a brick wall every single day when people are sharing their heartache, awful experiences, daily struggles and everything else that comes with being chronically ill.

I believe support groups are essential in our daily lives- they help us find friends who relate and understand, as well as give us somewhere to discuss how we are feeling. I just wish some could be a more positive place instead of the bitching and competition. My goal is to continue to make my groups a safe place for all spoonies.

If you're looking for a support group come join me at "Spoonie Support" on Facebook.
 

Why Spoonie Youtube doesn't work

In January of this year I started watching Youtube videos obsessively. At the time I had a broken foot and couldn't do much- I was getting a little restless. I immediately became hooked on such a wide variety of videos. From beauty to vlogs to even watching birth stories! I noticed that there weren't really many Youtubers who were chronically sick like myself and I thought it might be a good way to promote awareness of invisible illnesses and document my journey.

I met a few fellow "Spoonietubers" through social media and began to also watch their videos. I noticed during the time I was making videos I came to realise why I personally believe spoonies will never be "successful" on Youtube.
For the purpose of this post I refer to success as a subscriber count for Youtube (as I think mostly these days that why people make videos).

• Spoonies flare- When we flare there is no way in hell we are going to whip a camera out and document how shit we feel. I have done a flare video once or twice but that wasn't when it was a severe flare I don't think. 
• We can't set a routine upload schedule- because the nature of being chronically ill is so wishy washy there is no way we can know our good days and our bad days. In fact the stress of needing to think of a video to film could possibly cause said flare so its a vicious cycle.
• Our lives can be very bland. Take flare days for instance. Mostly its just in bed watching movies/tv, doing craft stuff etc. It's not as entertaining to watch when all we are discussing is how much pain we are in and how we struggle. 
• People can be assholes. All social media can be a nasty place but I find Youtube has its own kind of awful. Imagine making a video on how your feeling, pouring your heart out, and then having a hateful/ignorant comments like "you just sound unhappy" or "if you excercise you'll feel better" written. 
• Youtube is an escapism- I know personally I stated to watch and continue to watch videos as part of my distraction each day. Watching videos about how spoonies are feeling takes away from distraction and brings you back down to reality (and lets face it- no one wants to deal with reality when you can watch a video about all the latest products at Sephora or what who's announcing they are gay). Watching the latest Shane Dawson Popin' Cookin' will make you laugh for five minutes whilst a spoonie update may leave you feeling low. Sad- but true. 
• Creating quality videos (in regards to production and editing) is hard. A lot of time and effort goes into making a decent video. I know I was always annoyed at my iPhone camera quality videos and would have loved an expensive camera and some lights. But even with those things filming for a few hours and editing for a few more to make a video is too much hard work for someone who is confined to their bed most days. 

In May a few of my amazing friends created a video for M.E Awareness Day (all credit to Holly for the editing and script!). We shared the crap out of it hoping that it would raise some awareness for M.E sufferers and to educate people on what life with it is like. Whilst it did ok, in terms of "Youtube success" or "going viral" it really didn't do as well as I personally expected it to. I'm still wondering why as it was a brilliant video- is it just that people won't spend their precious five minutes watching a video on an illness when they could be watching cute animals doing adorable things?  

I don't think I'll be making as many Youtube videos anymore. I found it more like hard work in the end because of factors I've mentioned above. My advice for any Spoonies out there wanting to make videos is please be aware that the videos you make are really more for family and friends to learn about your struggles and not for 100,000 subscribers. Don't get sucked into the notion that you'll be successful on Youtube. For those already making videos and wondering why they aren't getting many views on Youtube- maybe this will shed some light on why. I may cop some hate from Spoonietubers for this but as both a Youtube creator and watcher I've realised what people are interested in watching and what makes for entertaining viewing.

*I don't want any of my spoonie youtube friends thinking I'm not supporting them (I still watch all my friends videos!). This is just my personal thoughts and opinions on the matter*

How to be Sick- Book Review

How To Be Sick- A Buddhist- Inspired guide for the chronically ill and their caregivers. By Toni Bernhard

5/5 stars

I wish a little skeptical before I began this- I was thinking Toni would basically just tell me to be positive and I'll get better. 
Not at all.
Toni is housebound and looks at being chronically ill in a completely practical light. She admits how much being sick SUCKS. She doesn't take away from how hard it is but just gives practical techniques and ways for us to deal with the loss and grief of being sick. Chapters within this guide discuss topics such as Accepting Pain, What to do when (it seems) you can't do anything and From Isolation to Solitude.
In regards to the "Buddhist inspired" portion of the book- this isn't about religion but instead teachings of how to deal with being sick from a place of love. Regardless of your religious beliefs this book is a must read that I personally will be keeping next to my bed to re-read and study in depth.

This is definitely a must read for the chronically ill.

Anxiety and Fears as a Spoonie

October last year my world was changed when my best-friend died suddenly. One minute we were texting about Big Brother, the next I hadn't heard from her in 12 hours and her husband calls to say she's passed away. I am still grieving, still heartbroken and still lost. My heart is so sad. Grieving and chronic illness is hell. Not only for the flares the emotional hell of losing a loved one causes but for another long term anxiety that I'm now fixated on and absolutely terrified of- losing my Mum and Dad.

My Mum moved out of the house in 2012. She and Dad had been unhappy for a long time (Dad was incredibly unwell without us knowing- leading to him being a moody vegetable thanks to severe sleep apnea without a c-pap machine). Unfortunately Mum had an affair, I was the one who discovered it, and it all came out on Dad's birthday. It was traumatic. So so so traumatic. I felt I had ruined our family. As a child I had a re-occuring nightmare that Mum found another man and left me. So its a deep-seeded fear she would leave. I have NO idea why I would have that dream. I just did. But the after effects of this emotional trauma (as well as other emotional trauma and physical illness) I became sick.

As you all know being sick can make you feel very vulnerable. I may have been 26 when my parents separated but its made me feel like a child again- to not be able to look after myself properly, having people drive me places, cleaning my bedroom for me, etc. This vulnerability became worse when Sami passed away.

I find myself so worried about my Mum or Dad passing away. I am still trying to adjust to life without Sami- how the hell could I live without either of them? I rely on them for so much. I still live with Dad (in the house I've lived in since I was 4) and he does so much in the way of the house work and paying the bills- things that I could never do by myself. Mum takes me to the doctor every time I need to go and does all my errands for me. Losing either one of them would be like losing my safety blanket.

I often lay in bed worrying that I'll be all alone. It's probably something people who are getting older worry about- being elderly at home alone without any family to look after them. But I'm 27. I shouldnt be so concerned about this. I just can't get past it. I also pray for me to "go first". I can't imagine a life without my family. I couldn't do it. Without a support network I couldn't cope.

How do I get past this- I have no idea. Maybe this is part of the grieving process? Maybe its part of being a spoonie? Do any of you have similar anxieties or fears?

I haven't told anyone about this. I can't tell my Mum- she'd be SO upset if she knew. But I needed to pour it out. I think that some might relate. My whole life goal is to be able to share my story, help others feel less alone and spread awareness of issues that we face being chronically ill. Talking about issues we all think about but fear to say out loud.

Gentle hugs,
Bridget
xoxo

Spoonie approved cups and mugs

 
Recently I saw a photo one of my friends took of her sitting in the sun reading with the gorgeous gold mug. I'd never seen a mug like it and knew I needed it in my life (this is the part where I tell you that I have a shopping addiction).

Looking on the Typo website I found these great shaker cups as well. These designs are sold out online but you can still grab them in some stores- so I had my friend look in her local Typo and found the designs I wanted/needed/desperately dreamed of.

They arrived this morning and I'm REALLY happy with them for a few reasons. I think that these would be really good for spoonies because...

• They are both nice and big- I personally like that because I don't want to continually get up to refill my drink. It's definitely a spoonie plus!
• For those left handers out there the mug is PERFECT because the lid comes off so you can move it to suit holding it in your left hand. As a leftie myself I haven't found a cup that lets me drink comfortably.
• The Shaker Cup's lid screws on! I think this is the BEST idea for spoonies- I personally always drop my cups so having the lid stay on gives less risk of spilling my drinks everywhere.

I've never been so excited to drink before!

Mug
http://cottonon.com/AU/p/typo/carried-away-mug/2013614114986.html#start=1

Shaker Cup
http://cottonon.com/AU/p/typo/super-size-shaker-cup/2013698304983.html#start=1


Gentle hugs spoonies,
-Bridget

M.S Readathon

Hi my loves,

A few months ago my neurological symptoms seemed as if they had gotten worse- I was dropping things more frequently and stumbling on my words more then usual. I mentioned it to my doctor and he sent me to a neurologist to be tested for M.S. After some tests they ruled it out. Apparently its "just" brain fog. 

When I was a little girl I always did the M.S Readathon with my school. Ive always adored reading. And whilst I had no idea at that age what M.S was, I participated and looked forward to it each year. 

I don't know how to happened, what lead me to search for it but a few months ago I stumbled upon the M.S Readathon Facebook page. At first I thought it was only open to kiddies but I soon learnt it wasn't- I immediately knew I HAD to do it. 

What is the M.S Readathon? 
It's an Australian readathon that goes for an entire month of August and raises money for M.S. The idea is people sponsor you per book you read (e.g $1 per book you read). It's targeted to kiddies to encourage reading (which I'm all for as a former teacher!) but is welcome to all ages. 

My goals for this Readathon is to read as many books as humanly possible. A number? Let's say 20 books. I'd love to read 30 but its not going to happen I don't think. 
I would love to raise $300 towards helping find a cure for M.S. 

If you'd like to sponsor me here is the link below! 
https://register.msreadathon.org.au/MSReadathon/4c0e82f7a17db323fc7085d5799fab1b

Insert Eminem song title here

Hello my loves,

I've been using my Little Miss Fibro Fighter and Bridget Parker page to blog on occasion lately. I've felt a bit confused with having so many pages and wondering how I could streamline it all so I can have one place to write about everything I want. So I've decided from now on they will all be written here then I will share on the appropriate pages on Facebook. 

I really want to write a proper post but I am flaring like all hell right now- so I'll be writing something more substantial really soon!

Until next time,

Gentle hugs

Bridget 

*** Did you get my headline?