Happy Sunday! I have an apology to make - I missed last Sunday's #hellomakers blog as I've been very poorly with a perforated eardrum and infection. I've decided to be a sneaky cheat and combine last week's and today's posts into one. Lets start with 'why?'
WHY? Why do you do what you do? Where does your motivation come from?
I've always had a passion for accessories. I adored collecting jewellery as a little girl and loved being able to express my own little quirks and interests through jewellery. As I got older, I really enjoyed experimenting with making my own pieces from wire and household objects such as safety pins and buttons. At 17 I started to train as a body piercer as well as dabbling in body modifications on myself, which indulged me love for jewellery even more. After the birth of my first child I started working as a visual merchandiser for a jewellery company who sell on stands in large supermarkets. Being around other people's jewellery every day made me wish I could design my own! I saw very cheap mass produced items and very expensive custom items every day but I wanted to bring unique and custom ideas which I was passionate about to everyone, at affordable prices.
After the birth of my second son, my physical health took a bad turn. There are plenty of posts to look back on if you'd like to find out more but I basically became unable to work an average job. I still felt the need to create and to contribute to my family's income as I always have. I decided feeling how I felt, that this could be the perfect opportunity for me to take the plunge and start my own business, as I had been itching to do for years! My health has brought many sad and difficult times over these past 6 years however it was most definitely the catalyst for pushing me to take the first step in building my brand and for that, I'll always be thankful.
Moving on to 'where'?
WHERE? Where do you work? At home? A studio?
I work at home, predominantly in my kitchen! I have a glass table by a large window which is where I make all of my pieces. It's fantastic for natural light and reflecting light back into my work. My table is scarred with resin spills and drill holes and usually has 4 or more projects on it at one time but It's my space and I love it. I recently bought some large storage drawers from Aldi which were an utter bargain and hold all of my findings and charms.
My flowers are kept in containers too, which you can see above on the right (and inside, below). It's a gorgeous smell opening them up each day! It's important for me to try and keep as organised as possible although a naturally unorganised person, this sometimes proves very difficult for me!
I'd love to work from a studio or space one day, or have my own shop. That's always been the ultimate dream. Working from home is fantastic for me as I really get to look after myself and work in the comfortable environment my body and wheelchair needs. I have everything at my fingertips. It comes with a downside for someone like me, and many small business owners, is with everything right there it's often hard to stop. I find myself looking at unfinished projects or pending work at 11pm at night or through dinner time/play time with my kids, wondering if there's a way I can fit one more piece in or finish something off. Its hard to step away.
Regardless of that, I'm extremely blessed to have such a workable situation for my personal circumstances. I'm on hand to get to my youngest son's school whenever he needs me, I can make all of our families health appointments and the sometimes relentless ringing around and chasing up that comes with it all, I can work in as much comfort as my body needs on a day to day basis without having to worry about pain levels, inaccessibility or travel... all while doing something I absolutely love. True #lifegoals
...and so it begins. I have a 9 year age gap between my sons so I had a few glorious parental years where my eldest was pretty much doing homework solo and my youngest was still learning things like rolling over and how to put Thomas trains in a straight line.
Now my youngest is over halfway through his first year at primary school, the suggested homework has started up again. "This time it'll be different, we'll enjoy it!" I desperately try to comfort myself.
My eldest son always hated homework. He had a very limited scope for imaginative work, so creating 5 small sentences with chosen keywords became a marathon through the lava-burning grounds of hell. Back 8 years ago it was less known that homework wasn't actually a compulsory part of school life, nor did I feel confident enough to approach teachers in a pretty unapproachable school to discuss how it wasn't working for my son. I didn't want him to fall behind or have to miss out on his cherished playtime, so we struggled through. Don't get me wrong there were good times as well as bad with homework. As my eldest grew, he always had a passion for his stories ending with the protagonist, or often everyone, dying a usually comedic or utterly surreal death. Should we have found them as funny as we did? Probably not but we're a bit dark like that.
So most parents, whether you choose to educate your child in a school setting, home setting or completely un-school will probably know the struggle of trying to encourage a child to engage in an activity they just do not want to do at that time. In my personal experience, all homework (and really, any activity that isn't a video game, YouTube or a pretend play about Mario, Sonic or Minecraft) falls into that category for us, no matter how much you think as their parent they might enjoy and benefit from it.
Our homework today was to bake some biscuits. YES! I've got it easy here! Or so I thought... Surely he'd enjoy this? Cracking eggs, spooning sugar, whisking and getting gloopy - plus of course the delicious eating after watching our golden brown Jammy Drops baking to perfection through the warm-lit glass oven door.
Things started well before we, you know, actually did anything...
...until he really didn't want to wash his hands. Or dry them. And then refused to stand anywhere but the kitchen counter. Eventually we settled on him sitting safely next to me but that brought it's own problems as he couldn't reach anything that he wanted to do and when he could reach it, he didn't want it after all.
He wanted to put the butter in the bowl. The butter was gross and slimy. "Why did you make ME put the butter in the bowl, mummy?"
He wanted to sieve the flour into the bowl. The flour made his eyes hurt. "Why did you make me do that mummy, it goe'd in my eyes! This is rubbish."
The whisk was too loud and 'bits' went on him.
I couldn't stir with the wooden spoon as that was his drum stick.
He wanted a drink.
He wanted a snack. (This IS your snack, dude!)
He wanted to play Lego.
I finally wrestled the balls of uncooked biscuit in to the fridge with one hand, the other brushing away the very persistent 'bits' off of my youngest and grabbing him before he threw himself off the side in a last ditch attempt to escape to the living room to ask for more snacks.
Fifteen minutes of baking prep had turned into a headache-enduing frustration fest on both our sides which felt like it lasted hours. I knew I'd lost all hope of re-engaging him when I had to chill the mix for 10 minutes before popping the jam in and bunging them in the oven to cook but instead of getting majorly stressed by his lack of enjoyment and total disinterest in our homework baking bonding session, I decided to let it gooooooo, let it gooooo.
I added jam and baked them to golden brown loveliness myself, while my little man played Lego with daddy.
I can feel the homework cog ticking away as year one approaches, increasing the pressure and decreasing the time until we are expected to make sentences with keywords and develop original and imaginative stories just like 8 years ago with my eldest but I think this time round I've learned to be more chilled with it. I will still strive to achieve the tasks we're set and we're both going to hate it at times but I look forward to the good times too. I am more knowledgeable around education, expectations and more confident in myself to step in and express if something is just too much for my youngest.
Most clouds, even stressful dark crappy homework ones, have a silver lining. Ours today was consuming these and having my little man say they were delicious... and of course that he did all of the hard work.
Wow, Sunday rolled around quick this week here in our house. I'm back again to bring you my second post in the #hellomakers March challenge and this week the theme is :
I've always wanted, actually needed, to create. Without the vent of mentally thinking of ideas and physically creating them I feel extremely frustrated. With my health and mobility having taken a turn for the worse and my youngest son going through ASD diagnosis, a return back to the traditional world of work was no longer viable for me or my family. After research, worry... a LOT of worry... saving, more researching, some panic and some testing I decided to take the plunge and launch my own business around my lifelong passion of jewellery and accessories. That was three years ago and here I am today, happy, confident with my ranges and so glad I took that first step.
I start my working day off here. This corner of the kitchen is mine. I am lucky enough to have a huge swathe of natural light practically all day and a 3rd floor view over Penge and Beckenham to inspire me for my nature and colour collections. I am also lucky to be able to pick and choose my working hours to fit in around my youngest son's school drop-off and pick-up hours and any hospital appointments we may have. And there have been a LOT of those over these past few years. I tend to work in shorter bursts, giving myself time to rest my body or gently complete physio in between resin pours and construction of jewellery. Plus, you know, Netflix.
Here are some current pieces on my work table, taken this morning. I'm working on a gorgeous custom sterling silver piece, some galaxy style pendants, some special mother's day pendants and two more orbs in an ice and fire theme. I'm currently done for today as these need to cure for me to add the final details and a second resin pour to finish them tomorrow. I tend to stay away from a strict Monday-Friday routine as a lot of my orders or market events come in or happen over the weekend.
Another large part of my day is devoted to packaging up each piece and parcelling them up for posting. A strong brand representation has always been important to me, as is a feel of luxury. I wanted my customers to know it was a Spotlesspinata piece coming through their door and to feel that pang of excitement and luxury when opening their parcel. I use a wonderful business called Neoito Creative to help me bring my ideas of packaging to life. Laura also designs a wealth of stationary for every aspect of your business and home life. My personal packaging obsession is Washi tape. I have a bit of a collection and I try to match the tape on the outside of each parcel to each individual person's order. Why? Well, it makes me smile and that's very important.
I've recently added keepsake memorial pieces, prints and homewares alongside my jewellery collection, all inspired by my signature real flower style, so every working day has the possibility of being quite different to the next. I absolutely love what I do and am so thankful for the ability to be able to bring my customers unique products that I also genuinely adore myself.
Whether it's a small pair of silver plated earrings or a large complicated order using a customer's personal specifications, I strive for perfection and attention to detail every time. I love each piece I make and feel sincerely happy when my pieces are 're-homed', especially when I'm sent pictures by happy customers wearing or using their items purchased from me. It makes my day.
I hope you enjoyed reading my 'What?' post, next week I'll be talking about 'Why?', so if you'd like to find out more, I'll see you next week!
I've decided to join in with the March challenge #hellomaker as found on the lovely Hannah of Hannah Hand Makes Instagram account (check out her gorgeous IG feed here!).
This week's post is:
WHO? Who are you? Tell us about yourself, your likes, dislikes and any fun facts!
I'm Julie and that ^^ is me! I'm in my kitchen, which is where most of my work is done over on my work table by the gorgeous natural light of our large 3rd floor window. I make jewellery, memorial keepsakes and home accessories using materials such as resin, real flowers, fabric and sterling silver. I love the fact I can look over my local area (Penge, South East London and over through to Beckenham, Kent and beyond) while working. As a lot of my pieces literally contain or are based around nature, it's a fabulous never ending inspiration.
I'm 35 and have been married to my number one guy for almost 7 years (together almost 12) and we have two amazing sons, aged 14 and 5. Going through the teens and the toddlers at the same time has been... interesting... for us both but always a challenge we love to live for.
I've had health issues most of my life and was diagnosed with Ehlers Danlos Syndrome alongside other associated conditions not long after the birth of my youngest son. My mobility has always been dodgy but took a huge turn, along with my general health, for the worse after his birth. I became a wheelchair user on the advice of specialists around 2 years ago, after a year's worth of physio and trying everything possible to alleviate the deterioration of my spine and hips. I had to mourn the life I lost and it was a dark time in my life. Starting my business helped me massively. I felt like through pain and feeling like a huge burden, I was still able to contribute to my own household, to society and to my own mental health but focusing myself and being creative. I've always LOVED creating.
So, A little fact: my EDS makes me super bendy. It's a negative thing overall as I can damage, sublux and dislocate joints and their surrounding structures very easily. It also makes my skin so peachy that it tears, marks and bruises under very little force, makes my teeth crumble and makes me very prone to passing out. However, I get told my skin looks a lot younger than it is and feels super soft, I can scratch anywhere on my own back or reach that thing that is just out of arms length by half popping my shoulder out and in again... and I can wheel faster than I could ever walk! Every cloud has a silver lining. What do I dig and hate? Let's find out!
Some other interesting tidbits you may not know:
I used to have a lot of piercings and am a qualified body piercer too but now my passion is tattooing. I've never tattooed anyone but I'd love to try one day. I'm currently adding to my own personal stash of tattoos by continuing to grow my (eventual) full sleeve.
I'm a secret singer. I adore to sing but I'm too shy to ever sing in front of people.
I'm a YouTube Addict.
I cannot knit. I've tried SO MANY TIMES, so so so many times. My poor mum trying to rescue my ever increasingly tight tension and dropped stitches, it's just never going to happen.
I can't drive. Or ride a bike.
I can hold my breath for a slightly alarming amount of time.
I'm petrified of the sea.
Well that's pretty much it for today. Next Sunday I'll be talking about 'WHAT' so if you're a curious kinda cat why not stick around and see what a day in my life looks like?
I couldn't think of an appropriate title for this blog, everything sounded too light or too humorous so I went with choking. It is what it is, horrendously scary, life-threatening, painful and terrifying... choking.
The reason for me writing this blog post today is partly because of personal experience and also because of the time of year that we're in. The time of trick or treating, handing out candies and sweeties to kids from your own home, from shops, competitions - it's practically raining treats... and that is so much fun! Until it becomes so far from fun that it will scar you mentally for life.
Yesterday we went on a local trick or treat trail which was amazingly run, so much fun. All the kids were loving it, even the grown-ups too. On coming home and separating our 5 year old's sweets for rationing out until Christmas with the sheer amount of Haribo he got, we noticed that more than a handful of the hard candies and lollipops had 'BEWARE CHOKING HAZARD' printed on them. Every now and again, I get flashbacks and this was one of those times.
4 years ago to the day, my eldest son was having a spooky night time treat of a hard skull candy lollipop. He was a few months away from being 10, so not a toddler, capable of sensible eating, knowing his limits and taking care. The hard candy skull suddenly popped off of the stick and wedged stuck in his throat. It still makes me sick to think about what happened. He was struggling to breathe, trying to vomit, being sick but barely anything coming out, clamming up, sweaty yet cold. We were terrified, without a clue what to do apart from basic first aid and choking rules I had remembered when training to be a nursery worker years ago.
I called 111, desperate for some advice. They were fantastic and urged us immediately to get to A&E but if at any point he stopped breathing or looking like he was becoming unconscious, to pull over and call an ambulance. The drive and wait at the hospital was agonising. At the time of arrival, he had stopped vomiting and seemed to be able to breathe gently and better although you could still *hear* the sweet in his throat as he swallowed and it was extremely painful for him.
Lewisham hospital were amazing. He had his oxygen levels and blood tested, he had an x-ray - I had somehow remembered to bring along another lolly exactly the same in case they needed it, it was about the only thing I could think to do before we left. They kept him in for hours, checking his oxygen as although they believed it was disintegrating with the help of his saliva and acid from the vomiting and was moving down through his digestive system as it should, they wanted to make extra safe that nothing had gotten into his lungs.
We were eventually allowed to go home hours later, once they were satisfied he was safe (apart from lacerations to his throat and burning from the bile) and to go gently with food for the next few days. For those next few days, I barely slept. I kept replaying everything over and over again, I struggled to eat even though there was nothing physically wrong with me, it just filled me with dread and reminded me of what could have happened with every.single.swallow.
So, every now and again I get flashbacks to this, as I mentioned earlier. I don't understand why these lollipops and hard candies are still so freely given to children (and adults for that matter, i'm entirely against them for anyone but that is my personal decision). Lots of the sweets given to my 5 year old yesterday as a wonderful traditional gift and gesture of festive spirit were clearly labelled as a choking hazard.
I'm not saying this is the responsibility of the shops who handed him the sweets at all, they were received gratefully by us in the lovely manner they were given to us (and disposed of safely). I don't think it's anyone's fault at all, I just think so much more awareness needs to be raised and parents really need to listen and learn about the dangers of choking, especially on items like this which still seem to be given away so easily to the people they can hurt the most. I cannot convey properly in words just how terrifying those few minutes of my eldest son choking were, we thought we were going to lose him. It is simply just not worth the risk.
So if you have small people in your life in any way, please stop and think before you give them any hard-boiled lollipops, treats and candies at this time of year when they are more freely given. Educate yourselves on ALL of the foods most likely to cause a choking incident (you may be surprised just what is on that list) and why not book yourself in for a refresher or newbie first aid and choking course with a trained specialist, to give yourself the right skills and tools needed if you ever face this situation yourself? Many courses are just a few hours long and very good value for the possible life saving skills you will be learning.
Stay safe (and spooky!) this Hallowe'en <3
Have you heard of ASMR?
I'll probably be right in assuming most of you haven't - I myself had no idea what this was two years ago. I'd like to talk a bit about my experiences in what has become a staple part of my life routine, here with you today.
I discovered 'ASMR' (which stands for Autonomous Sensory Meridian Response) falling down the rabbit hole on YouTube listening with my in-ear headphones, late one night a few years back. How I got there, I've no idea but somehow I stumbled across a video of a woman tapping all over the front of her camera with her fingers and various objects (make-up brushes, wooden sticks etc). The noise she was making moved from one ear to another (binaural sound) and it was THE MOST amazing/relaxing/mesmerising sound I'd ever heard. Almost instantly I found myself feeling very floaty, I began to experience shivery tingle-like feelings all over my brain, head and neck. I had experienced these feelings before while having an amazing reflexology treatment but this was even more intense. I must have fallen asleep as I remember waking up thinking what on Earth had just happened to me!
I looked in to what I had just experienced and found it to be ASMR. On YouTube especially there is a large community of ASMRtists each using their own specific ways of noise, movement and visuals to give people ultimate relaxation, meditation and of course those elusive tingles. I say elusive as 'tingles' are often lost for periods of time. Sometimes watching the same video that made you fall asleep while feeling like your brain was under a soft buzzy shower will the next day have little or even no effect on you. Also, watching too many ASMR videos of the same type can leave you somewhat immune to their effects.
I too went through this, my tingles first appeared with more gentle sounds like slow and soft tapping, hair brushing, laser light slow movements in front of the camera etc but after a few weeks watching those types of video I noticed that amazing tingly feeling and brain waves were almost non-existent. I have since found a deep-seated love for loud, fast and aggressive noises for my tingles and it doesn't seem to be dissipating at all.
I have to talk about the connections between ASMR and sexual behaviours/fetishism. Yes, it is a thing but NOT for the majority of viewers. There is pretty much a fetish out there for anything and on the mostly anonymous internet, people feel they can be very free in talking about and engaging in these fetishes. I have no problem with this whatsoever as long as everyone participating is comfortable and no one is getting unwillingly hurt, When I see a post on one of my favourite videos asking very specific things of the ASMRtist (your nails are wonderful, I'd love to feel them on my back! Can you do a video with red nails while wearing gold rings, digging your nails into an orange and whispering my name please?!) I just scroll.on.by. Some ASMRtists disable comments and stay as anonymous as possible (not showing their face, using accents etc) to protect themselves from unwanted behaviours, comments and requests. Others throw themselves into the role and follow through with requests, role-playing scenarios and using suggestive noises like slurping and kissing noises. Again I'd like to point out this is not for me, I actively go out of my way to avoid those types of video and once you gauge the community and types of content, it's easy to avoid the stuff you don't like. There is also the fact that most ASMRtists out there are young, attractive woman (although the same can be said for beauty bloggers, pop stars, tv presenters etc) however again once you step away from the highest viewed videos and into the true ASMR scene rather than the stuff watched for different reasons, you will see people of all ages, race, size and sex.
On top of being susceptible to ASMR I also have Misophonia - I HATE mouth sounds, chewing, slurping, eating etc It gives me rage feelings! It is disgusting to me and makes my skin crawl! Muk-Bang for example (another visual and auditory experience that has become more common on YouTube of late) makes me feel physically sick and enraged! But on the flip side of that, some people love those sounds like I do tapping and scratching harsh noises. I wonder if being sensitive to sounds in a negative way like that can make you more susceptible to being sensitive to sounds in a positive way (like ASMR) too? Due to my disability, I find it very difficult to switch off at night. My pain levels are at a high at night, my adrenaline levels aren't controlled very well due to Dysautonomia and often laying down gives me heart palpitations. ASMR has helped remove my tendency towards insomnia and moved my focus away from my rushing heart, sweating and twitching towards focusing on sound, relaxation, meditation and inevitable sleep. It has been a game changer for me and for that, I will always be thankful. Hundreds and thousands of people claim the same relief and focus, as well as helping with things such as anxiety and revising/concentration.
Have you heard of ASMR? What do you think? Let me know in the comments section below. II'd like to leave you with a small selection of my favourite videos - maybe you could watch one (push in-ear headphones are really needed for the full experience) and see if you too are susceptible to ASMR?
Tomorrow I will have been with my soulmate for 11 years, 6 of those in marriage. We're excited to have some child-free time, for 24 hours we get to be sweary, loud, drunk, selfish, out of the house after 9pm type people (although we'll probably just curl up with a takeaway and watch an uninterrupted film... bliss!).
However as this year's anniversary comes round, I'm also contemplating some serious brain fodder. For most of us with children, losing them are our worst nightmare. We are wrecks when our children are ill or hospitalised, fearing the worst. If you have a long term partner, when we go through horrific loss, when we ourselves are struggling with physical or mental trauma, we cling to them for support and strength. It's not a conscious choice, you just expect that person to always be there for you, as you are always there for that person. The unwritten, never needing clarification, unwavering tower of strength by your side.
But what happens when it's that, that is in the balance?
Losing a partner is something I've never really thought about, as I guess my anxious mind has always been preoccupied with losing the things I feel to be more vulnerable and at risk.
As I've talked about here before, my hubster has chronic Lymphoedema in his right leg - a diagnosis that took almost three years, lots of head-scratching and baffled looks from specialists and a shed load of painful and invasive tests. We are still none the wiser as to why he has it, how or what will happen with it. It usually affects women who have undergone treatment for breast cancer or people with stomach or gastric tumours. If not those, then it's from some kind of significant trauma to the area. It is extremely rare to have none of those things happen and suffer with sudden onset lymphoedema, yet, here he is with it.
Having lymphoedema leaves you more open to infections like cellulitis, even from a simple knock. Hubster's condition has him coping with a swollen foot and leg up to his mid-calf, red, itchy, hot and very easily damaged (a small scratch can cause excessive bleeding and immediate infection risk). You try to be as careful as possible but with an oversized and painful limb, full time job, walking everywhere and a 4 year old who summons the energy and calamity worthy of a Tasmanian devil sharing a house with you... there are going to be unavoidable issues.
We had one episode of severe cellulitis last year, which was scary as hell. Hubster ended up hospitalised for a week and was extremely poorly. His leg turned black at points, it took a good while for recovery and changed us as a couple. We both realised how vulnerable we are to a point but it was the first time, I think we were both in shock and after recovery we pretty much carried on as usual. This newest infection though rocked my very core.
Saturday 16th July was the day - exactly two weeks ago. It was a normal day and we did normal things. There was no damage to hubs leg as either of us can recall. We went shopping, we had fun. In the space of 2 hours from 12 noon til 2 everything changed. My hubster went from being as right as rain to feeling a bit 'off', then a backache rolled in, then all of a sudden, huge fever. I'm talking blue lips, dripping with sweat, vomiting, hallucinating fever. 2 hours...that's all it took. I recognised the symptoms from last year's attack only this year it was stronger and far quicker (last year it took 48 hours to progress to this kind of stage). While I was on the phone to 111, shaking and trying to keep our 4 year old away from the scene unravelling in our bedroom, I could see his leg ballooning and getting fire-red visually and physically. We were told that A&E were informed and he was to get there immediately (thank goodness for both of our parents' support here so that we didn't have to rely on the fantastic but severely overstretched ambulance services). His stats were so bad he was deemed 'very poorly' by the attending nurse and doctor and taken to resus. Those hours waiting at home with our 4 year old for news were some of the worst of my life.
To cut a long story short, he stabilised there and was eventually transferred to a ward. We caught a massive infection very early, I dread to think what would have happened if I hadn't called called 111 immediately - there was still that bugging little voice in the back of my head at the time thinking it was a nasty virus and was I overreacting? There was still that voice in hubster's head too, as he whispered through struggling fevered breaths that he was OK and just needed to sleep.
The reality of losing my rock, my tower of strength... the person who has become such a part of me that I almost feel as if we are extensions of one another and will always be, it suddenly hit me. Standing in the kitchen alone on that Saturday night, with our 4 year old sleeping soundly in bed, staring out of the window into the world's slumber, other people pottering around in their own houses, journeying through the streets making their way home, turning off their bedroom lights... life was going on but I was here, without a part of me. I could lose that. That which I never even considered a possibility. It could be gone.
So two weeks later, massive amounts of medication, IV, needles, testing, swabs and all sorts of recovery and here we are. Almost ready to celebrate 11 years together, 6 married. It feels different this year. I don't think I've ever been so thankful to have this man in my life, or more scared that I might lose him.
If you have a partner or someone just as important in your life, hug them close. It's all too easy to become used to each other's supporting ways with regards to the external worries, fears and illness you both fear as a team and with that, forget the other person is an individual and also vulnerable themselves. We will always be a team, an unstoppable force with unquestioning support and love for each other but this experience taught me to try and stop once in a while and remember that my partner, my tower of strength, my 'always there' should be cherished rather than expected.
Crafting! A huge passion of mine as most of you will know. I run my own jewellery and accessory business and I just love supporting small and local business, especially those that are based around a craft or skill.
I've talked about craft fairs before and how often they are still perceived as dusty old affairs with old fashioned items or as an annoying weekend chore for the parents of primary school kids. I'd really like to spread the word that this isn't always the case, my greatest example being the SE20 Craft Fair of Penge, My fab home town.
On Saturday April 2nd 2016, SE20 Craft Fair comes back to Kenilworth Hall, Penge to help showcase in excess of 20 amazing business people and crafters, as well as raising some money for charity too. I am usually lucky enough to have a stall at this fair but due to health issues this time round I am unable to work... but I am really looking forward to visiting and supporting this important local event.
As most of you know, I'm a wheelchair user. I am super excited because Kenilworth Hall have invested the money the hall gets from being used as a polling station into building a brand new awesome access ramp! This means people with mobility issues and those with buggies and prams (and suitcases etc for those working the fair!) can all access the venue really easily now. Having access issues with a lot of venues an shops within Penge and the whole of Bromley borough myself I think this is such a wonderful and important step that the church have done for Penge and the use of this hall.
Next, the stalls and people running them. Christina Owen works tirelessly in her spare time to help bring together local talent and showcase fresh ideas and makes. She stretches herself to champion Penge and the people within it and is an avid charity supporter (she is currently raising money for Macmillan Cancer Support, here). She also makes awesome cross stitch and coasters, of which I have many. Below in these nifty collages are some of the gorgeous makes from Christina along with a host of other fabulous crafters' makes you'll be able to see and pick up on the 2nd of April.
I'll be visiting SE20 Craft Fair and I hope you will too. Supporting small and local business and local events is so important. Without people visiting, these events struggle to continue and it's stuff like this craft fair, our Easter activities (run by Penge Tourist Board - more information here) and the likes of Penge and Anerley Jumble Trail which help keep our community close, bonded and fun.
If you want to share what you bought/are planning to buy or talk about previous lovely purchases or experiences from the SE20 Craft Fair, let me know below!
12th March is Disabled Access Day. Did you know? I didn't until yesterday but I think this is a great thing to be more aware of and in turn to try and raise awareness for.
This day was set up last year by Paul Ralph, after being inspired by a 'try it out' day at his local bus company, for disabled transport users. He thought the initiative could be spread out over a wider scale allowing many different companies, venues and events to have a day where they can offer people with disabilities the chance to visit somewhere they perhaps have been too worried to, or didn't think was accessible or were unsure if their needs could be met on an average day. It could also encourage people with disabilities and their carers/families to perhaps try out something new, which believe me can be a scary prospect. If you'd like more information on what is happening locally to you, please take a look at the website www.disabledaccessday.com
In Bromley borough and our surrounding areas we have Bethlem Museum Of The Mind (Beckenham), Caffe Nero (Beckenham, Crystal Palace, Croydon), Barclays Bank (Beckenham, Sydenham) and Strada (Blackheath) as some of the places taking part tomorrow. Again please visit the official site for more information - I am happy to see local places becoming involved in something that is a relatively new and growing venture that I believe could be great for our borough's disabled residents.
I got my wheelchair just before Christmas, just passed. It had been a LONG time coming with my GP and Physio referral originally back in March '15. I have been relying on cabs/crutches and long rest periods for the inevitable excruciating pain which follows or my trusty self-bought beauty of a mobility scooter. She has an I <3 Penge sticker and is awesome, but I digress. Now scooters don't really have a great rep. They are large and get in people's way (no matter how much you try not to) and their users are often stigmatised for being lazy rather than disabled. Sometimes they are used for the wrong reasons, I can't deny that fact. However sometimes the person using one, like myself, has no other option of getting her (also disabled) child to school and back every day.
It was a huge challenge for me to brave the looks, comments and laughter from people when I first started using my scooter. As a wheelchair user too now I can now compare that when using my 'chair I am generally looked on more politely (people don't tend to laugh), I take up less space so therefore people don't tut or climb over me AS much (yes, it still happens though) and generally people are nicer - they will stop at a zebra crossing for example whereas in the mobility scooter usually at least once a day out of my minimum 4 daily journeys I will be gestured at or completely ignored at such crossings.
Due to these experiences, I was nervous to go anywhere in my wheelchair. It is not until you become someone with a disability that you truly realise the magnitude of *everything* outside. Not only do you have to cope with taunts, stares, being invisible or too visible for everyone's liking (and feeling like the world's biggest burden to society), you also come across pavements you can't ride on, curbs you cannot mount or dismount, shop doors to narrow or without ramps/flat access at all, internal shop layouts too narrow and cluttered to navigate with items on shelves you can't reach. Transport that isn't designed for you and people who aren't patient enough to allow you a little bit of time and help. I can't remember the last time I shopped in a charity shop, one of my favourite ever fun activities, or went out for a meal in one of my old favoured places. It's really heartbreaking. You know, there's this stereotype of the hard done by angry disabled person. I hope most of you reading this know me as someone who always strives to make the best of a situation, always aims to be positive and have a smile on my face but this past year has really dented that side of my personality and it's simply down to how loss of mobility and accessibility can make you feel. On top of that you're also coping with the thing that is making you have the loss of mobility in the first place, so team those emotions and feelings with near constant pain, autonomic dysfunction and guilt in my personal case and hey presto... you start to become someone very different to who you were. Nervous, afraid to venture to new places, lack of spontaneity, lack of confidence...
So that's why I feel Disabled Access Day is something to be shouted about. It is small and new and needs our help to get more businesses, events and venues involved next year and into the future. To try to help so many people feel that they aren't perhaps as trapped as they may feel. That there are workable places and options and friendly people who think inclusion for all is important.
Do you have any positive or negative experiences with mobility or access locally? Are you a local business owner and would like me to come and try out your accessible premises? Let me know below.
October is dysautonomia awareness month. Raising awareness of this chronic condition is close to my heart (hah, heart!) as I suffer with so many issues because of it, yet it is relatively unheard of unless your'e in specialist medical circles. I had no idea what this was three years ago, educating myself has been key in dealing with my symptoms, helping my GP understand and learn more and supporting others who may have some form of dysautonomia in their life. So...
What is Dysautonomia?
It's a little waffly but the basics are there. This past month, my personal symptoms have been rapid uncontrollable heartbeat, palpitations, high rise in BP, low fall in BP, passing out, muscle burn, unable to lift my arms above my head, swollen feet, pins and needles, twitching, visual distortion and excessive sweating. This has been a good month in the fact that these symptoms were clustered mainly around a few weekends rather than every day (which is what it was, before I was put on cardiac medication).
Before the birth of my youngest son, I had dysautonomia symptoms but on a much lighter scale. I was diagnosed in my early twenties with Generalised Anxiety Disorder which my GP said explained my strange symptoms. On the surface of things, it kind of did! I was going through a rough emotional time, it seemed to make sense even though I didn't particularly 'feel' like I had a problem with anxiety - but that can be part of anxiety and depression too.
It wasn't until my youngest son came into the world that my body decided to start playing real havoc with me. Symptoms shot up in relation to the 'anxiety disorder', I found myself feeling like passing out numerous times a day, sweating was excessive, shakiness and twitching, my heart rate was really high a lot of the time and kept shooting up or dropping just like before but much more severe. I developed other stuff too (post partum thyroid disease) and I was in a LOT of pain. My joints had always been bad, extra bendy, clicky, getting 'stuck out', breaking easily but it felt like I was falling apart.
After a lot of tests, a LOT of waiting and seeing some brilliant specialists, I was diagnosed with Ehlers Danlos Syndrome (a connective tissue disorder) and Postural Orthostatic Tachycardia Syndrome with sinus tachycardia. These tend to go hand in hand with each other, which is why I'm mentioning both.
Due to the EDS, my internal organs and veins are stretchy - my specialist says to imagine chewing gum and elastic bands. Most people are made up of elastic bands which stretch but pretty much go back to their original shape and tone. People with EDS are built of chewing gum, it starts off ok, a little stretchy, but the more it's used, the more pulled and stretched it becomes, a real struggle to get it to go back to it's original form. My veins balloon and let too much blood in the wrong places. My autonomic system freaks and tries to push blood back to where it's supposed to be (or to the area being used) but forgets other bits of my body need to function too - these are the things that lead me to have dreadful muscle burn, twitching, weakness, blood pooling and passing out. Even something as simple as eating a large or spicy meal makes your autonomic system send more blood to your stomach to help digestion, yet in my case it sends too much in the 'freak out' and makes my whole body go haywire, sweating, palpitating and fainting.
There are an awful lot of sides to this complex disorder which I can't go into, I can only write from my perspective. With cardiac medication which lowers my pulse but stabilises my blood pressure, I am able to lead a relatively safe life - paying attention to my bad days and triggers. Some are not as fortunate and cannot even stand without passing out. People not as fortunate as myself to have it caught by a specialist and treated can go years and years without treatment, while slowly damaging their heart and vital bodily functions which can lead to severe long-lasting damage and death. As I mentioned before, dysautonomia often goes hand in hand with other chronic and serious conditions such as Vascular EDS which is the most severe form of Ehlers Danlos Syndrome, rupture of arteries and organs of people with V-EDS is unpredictable and life threatening.
If you feel you suffer from any symptoms which could relate to dysautonomia at all, I urge you to read up, educate yourself and visit the GP with your findings if you are worried. A good GP will look at your symptoms, what you have researched yourself and never deny you a referral to somewhere if you feel you want to see someone. My GP had no knowledge of EDS and little understanding of dysautonmia before my diagnosis at hospital (just like me!) so we researched together and worked as a team with referrals and treatments. She has been a star.
Here are a couple of links if you'd like to research yourself or read more about what dysautonomia is and it's associated syndromes etc Thank you for reading and helping me raise awareness! <3
What is dysautonomia?
What is POTS?
What is EDS
What is ME/CFS?
Who is Julie?
30 something, mother of two gorgeous boys, lover of one gorgeous husband, perpetually living in a dream world full of wine, chocolate and artsy crafty things.