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?
It's taken me a few days to write about this as I've been in (and still AM in) some kind of shock I think.
I received a text on Friday 19th June by DWP to 'remind' me of my PIP assessment appointment for Monday 22nd June. Well, that was the first i'd heard of it! I instantly went into panic mode, I was expecting to have a good week or two to prepare for it, gather together any more info and specialist letters i had forgotten about, get my wheelchair referral letters together and mentally prep myself for (what some said) would be an awful experience. I was also in the middle of yet another dreadful flare up. I had been laid up since Wednesday, needing others to dress me, drag me to the loo, basically look after me. The thought of getting myself prepared when i could barely get through an hour without tears due to pain was overwhelming to say the least. Then something just switched in my head - this was happening and there was nothing i could do about it - so let's do it!
I know a lovely lady who works in the industry, she helped keep my fears at bay. You only really hear horror stories online about people forced to do physical acts to prove they are fit and healthy, people told by assessors that they are lying or seeking attention etc people turned away or made to feel dreadful... but my lovely friend assured me where i was going, this wouldn't happen and that i would get through it and be fine. I clung on to those words and positivity over the weekend. My dear dad took the day off work to get me up to the appointment and push me around in my borrowed manual wheelchair. My mum came with me to the interview room to hold my hand. My husband took the day off work to look after the boys. it was a bit of a military operation but we did it.
My assessor was actually lovely. She knew all about Ehlers Danlos Syndrome and PoTS. She was empathetic and kind. She was great at her job, writing down constant notes whilst i was talking, sensitively asking questions, gently probing for more information when i got sidetracked by wandering thoughts and the overwhelming relief of talking to someone who 'got it'. After about 50 minutes of talking and note taking, she informed me they usually do a physical once over and muscular-skeletal check but that she didn't need to do this for me as she could clearly see my issues. She said i'd presented a great case, given then exactly what they needed in terms of hard, cold evidence (diagnosis and test result letters from specialists, genetics team etc) and that she was very pleased to have met me (and mum). She explained that awards were given by The Decision Maker and that they would probably be done with my case in about 2 weeks, due to them getting through them quite quickly at the moment. I came out feeling positive that I was taken seriously and legitimately and that I had a hope of getting some support. Of course this is again how so many of those horror stories start (i thought i'd be accepted, it was great to finally be listened to... but then i was awarded 0 points! 0!) and so my doubts started creeping in again. I set myself up for the two week wait, trying not to think of that what if's, how i was going to appeal, did i have grounds to? Why didn't she did a physical if i'm going to get turned down, is that legal? WHAT'S GOING TO HAPPEN?
Fast forward to this Wednesday just passed. 9 days after my assessment a brown envelope flies through my letterbox without a care in the world and splats on to my carpet, not knowing why it's very presence is making me sweat and palpitate. I hobble back to the sofa, ease myself down and start to open it. PIP APPLICATION AWARD it states. Oh jeeze, this is it. I pull it out entirely of the envelope and my eyes dart around the page of writing, flitting from word to word, not taking anything in properly, searching for the words DENIED/UNSUCCESSFUL/SORRY/FAIL....
...only it didn't say that. It said something i didn't even allow myself to believe would ever be a possibility. I was awarded Enhanced Rate for both the personal and mobility section, the best possible result i could have wished for. A literal life-changing decision. Tears flowed, i was hyperventilating at one stage - then i had to pull myself together to drag myself on to the mobility scooter and go and collect my little beany from pre-school.
This means i can purchase aids, supports, splints without fear of getting into debt, it means i'm entitled to a blue badge enabling me to be able to get close to places i need to and have better accessibility with the wheelchair. It means we don't have to extend an already stretched loan to cover a car we can't afford for a year (who knows what would have happened after the first year as we wouldn't have been able to afford to do it again for a second year), as i am now entitled to join the motability scheme, swapping out my weekly mobility PIP for a car!
I would encourage everyone to take the steps i have into applying for PIP if you feel you have a qualifying disability that affects your day to day life and/or mobility. Please don't feel you are a burden on society, if you are like me, this is one of the reasons we pay our taxes. I am a proud taxpayer having been in employment from aged 17 and now running my own business (all be it a very small one!) from home and i am not ashamed to say i need help right now. Will i forever? Who knows but for the time being, yes i do. Also, i am a proud NHS supporter, as without the help and support from my completely overworked and overwhelmed specialists/nurses/doctors, i really doubt i'd be here right now or definitely not in a healthy enough state to look after my children and be a functioning human. That very same fact is the same for my husband, after his brush with very serious illness a few months back.
If you are currently in the process of claiming for PIP, keep strong, keep focused, keep positive. Sometimes things can have a very unexpected but awesome outcome.
It's been just over two months since my last health update. In that time, a LOT has happened! Regarding myself, I am still waiting on a PIP assessment which I was advised can take up to 16 weeks. No rush there from me, I am expecting to be turned down and have to appeal anyway, as seems standard procedure, however at least I am on the waiting list now.
Wheelchair referral was a bit of a mess. My GP's secretary couldn't fax my application forms through (after already being delayed by a fortnight due to them not knowing how to fill in the forms) as the fax machine was broken. Once it was fixed, they forgot to send them. Apparently the copy sent off in the mail on the same day got lost. Hmm. So, it took a month of waiting to find out they were missing and had to be done and sent off again, which wasn't ideal but there you go. Again, a waiting time of around 16 weeks for a wheelchair assessment but still happy to actually be on the waiting list for that, too.
When you have a chronic illness, one of the most frustrating things is feeling like you're not in control of your own life anymore. You end up feeling like you spend an eternity just *waiting* for things to happen. Waiting for appointments, waiting because of delays at appointments, waiting for reschedules because of cancelled appointments, waiting for referrals, forms, interviews, prescriptions, opinions, help... even for the most positive of us it gets HARD.
On the subject of waiting; one of the reasons I've been delayed in writing this post is my dear husband Ray (who has chronic Lymphoedema of the lower right leg) was rushed into hospital mid April. We were warned on the day of his diagnosis that he was more susceptible to infection, specifically Cellulitis in the affected leg but we never really thought it would be that much of an issue... we were so wrong.
The attack came on fast, Sunday morning Ray was hit by a crippling toothache and by midday he was shivering, grey and barely able to function. We thought it was a stomach bug or 'flu so I tucked him up into bed and he tried to sleep it off. Monday morning came and after dragging himself to the toilet, I saw his leg for the first time since Sunday. It was huge and purple red. Burning hot and just horrific really. My dad suffers with cellulitis so I thought I'd know what to expect, this was like nothing we had ever experienced before. After being told to get to a&e Ray was given a huge dose of IV antibiotics and then sent home around 11pm to return the next day for another big dose of IV and the same again on the Wednesday. Over Tuesday the leg continued to swell and darken in colour, it was still boiling and you could see the throbbing of the blood pumping through his skin. His heel and toes were turning green and black, he was 'forgetting' to breathe in and was sick. It was the scariest time I've experienced as his wife. Wednesday he was admitted into a ward as the doctor administering his last dose could clearly see no improvement was being made. Ray stayed in hospital for a week with a special IV antibiotic made up for him as the usual treatments were refusing to work. He had regular stomach injections alongside the 4 IVs and was in a pretty depressed state. Everyone around him was frail and elderly, he couldn't leave the ward or for the most part, his bed. I found it difficult visiting with no car, the children to look after and getting around on crutches (thank goodness for my parents and Ray's parents).
To cut a long story semi-short, it was terrifying and sobering. We have to deal with the consequences of this infection and if he has a repeat attack within a year, due to the severity and complications he will have to take a low level antibiotic every day for the rest of his life. The day Ray arrived back from hospital, Sullivan, 3, contracted Chicken Pox, low and behold a fortnight after that Thom, 12, also contracted Chicken Pox. His was a severe case and that was another 4 weeks of really difficult times with those two. Honestly it felt like we were never going to get off of the rollercoaster of horrid things happening.
So, these past two months have been full of craziness really. What with the both of us trying to hold down jobs and school for the children at the same time, it's been manic to say the least... but I feel better now I've updated the health side of things here. I will do my next health based post when I have news r.e my PIP application or Wheelchair referral.
Thank you to everyone who was so kind and informative regarding my last blog post. It was very cathartic to let everything out here and talk openly about the disability I have.
Some progress has been made since I spilled everything a few weeks back! I took the plunge and applied for PIP, after numerous people telling me I had every right to. I find it very hard letting go off the mentality that I don't need help and that I don't deserve it. Not in a woe is me way, more so I know there are tons of people worse off than me and processing my claim would take time away from them. However, I've decided to try and if I'm deemed worthy, then that is that. I am going to be open, honest and just see what happens with it - I will more than likely be blogging about this journey into state benefit/support as it's something I've not really had any experience with before and again, it's very therapeutic writing it all out.
Secondly, I was seen by the specialist up at Crystal Palace and he has put forward a letter to my GP confirming the problems I am having, that they are related to the physical act of walking and he wants me to have support getting Sullivan to and from preschool. The letter was worded pretty badly and took some deciphering from my GP but on the back of that and her experience with me she's referred me to Bromley Wheelchair Services. I have been warned that the wait could be a lengthy one and that because I can walk on double crutches *some* of the time, I probably won't qualify for any help. So as a back up, my wonderful parents found me a second-hand mobility scooter for £125 - bargainous. It's little and plain, just what I need to get Sully and I safely to and from preschool every day. I am nervous about riding on my own with sully but I'm sure after lots of practice it'll start to feel like second nature.
In the meantime, thank you again for reading and for caring.
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.