This is my first September as an adult. ‘Why do you say that Jenni? Aren’t you almost 25?’ That fact is true, so I have supposedly been an adult for 7 years. And although I thought I was ‘all grown up’ at 14 I haven’t truly felt it until now. I blame September. Growing up in the UK education system, September has always brought around the most change for me, much bigger than a new calendar year. The beginning of a new year of school, college or university always brought new challenges. This is actually my 3rd September as an adult not in the education system; The first was 2016 when I was very sick and waiting for surgery on my CSF leak feeling strange seeing all my friends go back to uni without me. And then there was last year as a new graduate. I was basically unemployed and stressing about finding work, especially with my health conditions. I was feeling pretty low and by early October I was visiting my old uni campus to get a taste of the change I was missing in my life. I found it frustrating living at home after being independent for so long, I was in the same Saturday job I’d had since I was 17 and was in a long-term relationship which I refused to believe was going nowhere. After waiting so long to finish my degree due to my health I thought graduating was the time where my life was finally about to start, but as graduates we definitely put way too much pressure on this as it’s just not the case. I know people who had job offers before they left, some stayed in education, some have changed jobs several times since and others who still haven’t found something; which hasn’t been any easier with the fiasco that’s been 2020. Then there are those like me, who are juggling different jobs trying to find their place. I think we need to be taught in schools and universities that there isn’t one pathway after leaving that system but also that, especially in creative industries, there might be nothing, at least for a little while. The days of people having one job and working for one company their whole lives aren’t realistic anymore. I still don’t think people consider me to have a ‘proper job’ even though I have lots of small income streams.
This is why I say this is my first September as an adult. Basically because it’s my first stable September where nothing is changing and not much (hopefully) is about to. I think with all the craziness of this year I’m very grateful for that. When I look back an awful lot has changed in the past year, even in just the last 6 months. Life moves so quickly sometimes you forget how much you have actually achieved. In the last year; I started two new jobs simultaneously, one where I get to be a Princess every week; I finally go to join the YouTube Partner Programme; went ginger; survived the break up of a 6 year relationship, the death of my only grandfather and the lockdown for a global pandemic all happening at once with my mental health mostly in tact; started a new relationship with someone who makes me very happy; and have practically moved out of my mum’s place where I’ve lived for the last 15 years. And, of course, knowing me, I’ve still been beating myself up for not doing more or trying harder despite the fact I also have 2 full time chronic illnesses to contend with.
Last week I went back to visit my old university campus and see some of my uni friends. This time I wasn’t yearning to be back there, I’d simply stopped by whilst on a classic 2020 #Staycation. It was strange for a couple of reasons. Firstly, because it was so eerily quiet, usually there are always people just sitting in the main square enjoying the sun (term-time or not) but, apart from some builders there was no one to be seen, I feel very sorry for those who are going to be starting their uni experience like this in the coming weeks. Secondly, because I had gone with someone who had never been to UEA (University of East Anglia) before and, apart from a few stories, had very little idea about my life there, the massive roller coaster of a journey and the impact that place has had on the person I am today. But it was so nice to be able to see my former home through fresh eyes as I showed them around and appreciated it’s concrete beauty and the feeling of home I experienced the first time I visited. It was also different because although it had been the longest I’d ever gone without a visit since I started back in 2014, I hadn’t missed it and I hadn’t longed to be back there, It was simply like saying hello to an old friend. The important things I was taught there, the memories made, the struggles I overcame and the people I met will always stay with me but I feel I am no longer tied to it; ‘The past is a nice place to visit but certainly not a good place to stay’, and I don’t need to stay anymore.
So here’s to the September’s of true adulthood. There ones where nothing changes. Where you work the same job and pay the same bills and the biggest challenge is deciding exactly when to put away your summer clothes for the year.
What does September mean for you?
My personal life is something I’ve always kept fairly private but in the world of social media sometimes this can skew the view of what it is like to be in a relationship whilst being diagnosed with a chronic illness. For the readers who are looking for the drama, this isn’t going to be a post for you. This is for anyone who has felt that their or their partner’s illness has had an impact on their relationships and felt alone and unable to speak about it. My personal experience doesn’t speak for everyone with a chronic illness but relationships and chronic illness are a tricky balance whatever the circumstances so I wanted to share a little of my past and my hopes for the future. So here’s a ‘Shout Out To My Ex’ and a letter entitled ‘Dear Future Husband’ as I find myself single and chronically ill in the middle of a global pandemic.
I was with my Ex-boyfriend for almost 6 years. We met when I was a very different person. We met in a club, I know, almost laughable now. We met before I was unwell and had a magical 6 months, which I can barely remember, where I was healthy. Then the headaches started and, if you are a regular here, you know the rest of the story with my health.
I’m not 100% sure exactly when we lost ‘it’. But what you probably don’t know is that this is the 5th or 6th time we’ve broken up over the past 3 years. I want to share something I wrote but never published from a break up in March 2018. I know we had other problems but at the time one of the main things we argued about was my health. I called the piece ‘In Sickness & In Health:
‘You’d like to think that if you can get through the hardest days with someone, if someone has loved you unconditionally having pushed you around in your wheelchair, lifted you out of the shower and picked you up off the bathroom floor, that they’ll always be there, especially when you started to get better, right?
When I realised in early 2016 that most of my health issues over the previous 18 months were incurable and genetic I gave my boyfriend of 2 years the classic ultimatum: If you want to leave now I wouldn’t blame you for a second. And I wouldn’t have. This thing, this illness, happened to me. Not to him. I didn’t have a choice in my diagnosis or where that left my future, he did. But he made the choice to stick it out. Like most noble (and foolish) gentlemen. And over the next year as my health continued to deteriorate, I continually told him it was okay if he wanted to run. When we started dating I was an 18-year-old college student who played badminton and football and could dance the nights away. No one could’ve guessed the path life would take. Me throwing up in restaurant toilets and organising dates around hospital appointments was not what he’d signed up for. It wasn’t what I’d signed up for either but my body was the issue and, irritatingly, it’s not something I could run away from.
Turns out he cared about me and this broken body of mine and he stayed. He stayed through the surgeries and the sleepless nights and through the countless times I screamed, cried and begged for him to make the pain in my head go away. Looking back it was obviously hard on me but it must have been pretty hard on him too.
After I’d recovered from the ‘4 surgeries in 5 months’ saga of 2017, I was starting to get better and things were starting to get easier. I guess it was about here things started to change. Things were just different. I was getting better and stronger but we would see each other and do fun things less and less.
I know what you’re all thinking. ‘Didn’t you go back to university? Some people can’t handle long distance.’ And don’t get me wrong the distance was tough, but we’d done it before, for over a year. We knew we wouldn’t see each other as much as the first time around but we had a plan in place before I left. But the hour-long skype calls of years gone by turned into 3 minutes on the phone.
Whilst my parents and new uni friends were noticing huge changes in my health and abilities, he never saw it. I came home to perform for my old stage school in February, an enormous achievement for me, and I wanted him there to see me sing and dance on stage for the first time since we had met 4 years before. And he came, but instead of telling me he was proud of me or being amazed that the girl that could barely walk the year before was dancing (for 3 minutes before POTS attacked backstage), he said nothing. His only comment was on the quality of the kids before me, oh and the lighting.
He decided not to come and visit when he said he would. We kept arguing over the phone. I told him I couldn’t keep putting in the effort for the both of us and it spiraled away into the same argument that we would have over and over. And then he brings up my illness. He spoke about how hard he found it, when he didn’t speak up at the time and we should’ve been working through it together. He talked about not being able to do things and go to places because of me, when he’d never even suggested things for me to make a judgement call on (There’s not much that I won’t at least give a go). He started chatting about how frustrating my walker is, even though he took my point that without it he’d still be pushing me around. He would never like me using any of my mobility aids and always wanted them out of the way for pictures. It got to the point where he didn’t even like me wearing zebra print. He was embarrassed.
Part of me reckons that he still thinks I am much sicker than I am, because why should this all come out when I’m so much better. But part of me also wonders whether he thought I would be ‘fixed’. The surgeons, physios and doctors would click their fingers and I’d be back to the girl I once was. I have wished for it to be that simple for a long time and I’ve been working my butt off to live a ‘normal’ life but I’ll never go fully back, it’s just not how things work. Maybe the real reason is something completely different, though I’m not sure if that’s better or worse.
He will always hold a special place in my heart for holding my hand throughout my sickness, It’s just a shame he couldn’t have stayed and enjoyed the ‘health’.’
It took me a long time to be proud of my achievements, use my mobility aids with pride and be the confident #babewithamobilityaid that I am today, so for the person closest to me to make me feel bad about that was heartbreaking. He always wanted to be on the go and doing things and I just couldn’t keep up (I have no idea how lockdown has suited him but I can’t imagine it went well). But because I wanted to save what was hanging on by a thread I’d fold my stick up in my bag as soon as I was with him and go on the ‘adventure’ even if it was just a trip to a shopping centre and feel the pain and the exhaustion at home later, when he couldn’t see. I felt like such a hypocrite for telling others online to own their conditions when I was ashamed of mine around him. Ultimately I was different to the girl he fell in love with. The adjustment was hard for me to face but I had no other option, I think he wanted to ‘do the right thing’ when really he wanted to be with a girl who no longer exists.
When I was at my sickest I felt like I didn’t have a friend in the world. I was extremely lonely. I hadn’t yet discovered this amazing online community and thought no one would ever understand. He was all I had. He knew that, I think he still felt that pressure even after I found my amazing friends. But it also meant that when things started to go wrong I put up with them. And I put up with more and more. Every time we broke up I’d let him talk me back into staying because I was afraid there would be no one else; who would want to be with the sick girl? (we’ll talk more about this in a second). The personal stuff will always remain personal and it can be hard to see from the inside when things aren’t right but the one thing I have learnt is: just because you aren’t being treated badly in a relationship, it doesn’t mean you are being treated well. And I honestly think the kindest thing you can do when you know it’s over is to let it be over (Illness totally aside). You save both of you a lot of time in an unhappy relationship. The end of our relationship hasn’t gone the amicable way I would’ve liked it to, but I do know we are both happier and I do feel like a weight has been lifted off of my shoulders. I’m free to truly be myself.
There’s hard stuff in every relationship but it’s how you communicate through it that counts and that’s one thing we were always awful at. In the Little Mix song that this section is named after they talk about the deleting of pictures and the blocking of numbers but I’ve never been like that. I don’t understand why people are so keen to erase the memories. I heard a quote today which really resonated: ‘In order to love who you are you cannot hate the experiences that shaped you’. I thought that was important in regards to relationships and chronic illnesses. Whatever bad things happened, there were good times. Especially as I was with my Ex during some of the most formative years of my adult life. I don’t think we truly loved each other for a long time but even if we never speak again he will always be the person who helped me learn to drive, the person I went on my first holidays alone with, the person who was there through all of my crazy uni experience and the person who was my greatest friend when I was at my sickest. So I thank him for that.
I’ve never really dated before and I definitely have never been on a dating app so to start that during a global pandemic has been an interesting experience to say the least. Dating with a chronic illness was something that absolutely terrified me. I was scared no one would understand, they’d all assume my life was awful and sad and that no one would want me for me, they’d just see a walking stick and run. On Tinder, I decided to not show it (I realise I’m lucky to have that option). Firstly because I wasn’t sure how people would react but also because I didn’t want to attract weirdos who would fetishize my disability. In some ways, I think the pandemic has made the whole experience easier for me because there was no pressure to meet up (the ones that wanted to went straight in the bin) and it meant I could get to know people on a different level. There was a strange level of shame I carried with me about my illness. At first when people asked about my blog & youtube channel I’d be vague and tell them it was about lifestyle & health, or say something about makeup so they no longer cared. This makes no sense as they are things I am hugely proud of! Slowly, as people started asking for my Instagram, I started sharing. It was quite a good test without too much heartache because if they took one look at my walking stick and never replied I knew they weren’t for me without having to hear their strange excuses. But overall I was pleasantly surprised by the response. Obviously, it’s tricky because you can’t truly know about someone’s illness until you’re around it a lot of the time and I didn’t go into huge depth about the specifics but it was nice that it could just be seen as something I deal with as opposed to a deal-breaker. I often worry, even with my friends, that I get seen as ‘Jenni, the sick one’ and I don’t think my advocacy work helps that image on occasion, so it’s been really nice to be seen as ‘Jenni, the smart one’ ‘Jenni, the funny one’ Jenni, the silly one’ ‘Jenni, the one who dresses up as a princess’ ‘Jenni, the one who loves Mcfly too much’ ‘Jenni, the one with the cute smile’ or even ‘Jenni, the sexy one’ for a change. I’m not sure what the reality will be like when I am not hiding behind a screen on a virtual date or sat 6 ft away from someone on a socially distanced one, poking them with my walking stick when they veer too close, but it has given me hope.
So this is a little note to my future husband, whoever he may turn out to be:
Dear Future Husband (or just boyfriend, but I am fairly set on the whole fairytale wedding & ‘Mondler’ style marriage thing :P),
You’re quite lucky to be meeting me now whether it’s tomorrow, in five years time or we might have already met. The reason is that I truly hope and pray, perhaps naively, that the worst of my health stuff is over; or at least vaguely understood and well managed. Even if that isn’t the case, I’m a much stronger and more interesting person than I was even a year ago. If you’ve got this far you already care about me for me and you know I am way more than my illness. But you also know my illness is something which does dictate my life a lot. So here’s some warnings and advice about being in a relationship with my chronic illnesses which you might find useful.
Firstly, I think you have to know that you will never understand or even be able to comprehend the amount of pain and symptoms that are going on in my body on a daily basis, unless you have a chronic illness too, which, I’m not going to lie, probably isn’t the best idea given the physical support I sometimes need. You can be the best most caring person in the world and read every book and watch every video and you may be able to sympathise but you will never be able to truly empathise. Just be there. Hold my hand. There will be times when I’m frustrated and times when I’m sad and I may (probably will) take it out on you when it isn’t your fault. I apologise in advance.
You also have to know that I will need help. You will have to do things for me you wouldn’t have to do for a ‘normal’ 20-something-year-old woman. It won’t be sexy! You might have to cut up my food or get me a seat or some water when I’m struggling. Other times you will have to push me around in a wheelchair and help me out of the shower. Sometimes I will be in extreme pain where all I will do is scream and cry and beg you to make it stop. I know it’s hard but don’t try and fix things or suggest things, I know you mean well but, at the end of the day, however much you want to, you can’t take the pain away. Hold my hand and be there. Eventually, it will pass. When I’m in pain I can forget what helps me but only suggest things you know will help (because they’ve helped before) and are on my flare-up plan; if you ever suggest yoga or turmeric you’ll be out the door before you can say downward dog. You have to accept there will be good days and bad days and those will be unpredictable. You have learn to manage it the same way I do. And, like me, you will get t wrong sometimes.
I think something that can’t be underestimated with being with someone with a chronic illness is communication. Don’t treat it like an elephant in the room, let’s talk about it. There are no silly questions. I can’t and don’t expect you to know everything, I probably don’t want you to. But learn about spoon theory and ask if I have enough spoons left occasionally. Ask about my actual pain levels vs the ones I’m trying to show the world. Definitely not all the time, but just enough to know you haven’t forgotten the invisible battle I face every day. The biggest thing I felt when I was diagnosed was alone. Alone in finding out stuff and alone in knowing what to do. You’ve probably never heard of my conditions before, I hadn’t. Situations which might have been normal for me for years are all new to you, it can’t be easy. The best thing I ever did was find people with the same condition to talk to, people that understood. So talk to people, find other partners of people with my conditions, ask how they’ve managed and lean on them for support and support them in return.
Finally, for some unknown reason, you love me. You love me and my broken little body. You have no excuses because you DID sign up for this, I will have asked a hundred times if you’re sure and probably tried to scare you off a few times. If you do get scared in the early days it’s probably best not to be selfish and to just let me go, I won’t blame you if it’s too hard. I probably wouldn’t choose it myself if I had the option. But don’t carry it around because you think it’s a bad reason to leave someone and then break my heart later when it gets too much. You’ll have to help me and support me if someone makes an ableist comment and let me meet your family & friends walking stick in hand (Not a common thing you’d expect a young woman to use) and you have to be proud of that. I am proud of that, proud of where I’ve come from and where I hope to go and, despite all the pain, I wouldn’t change it for the world because it is part of who I am. I hope you see that, to be honest we won’t get too far if you don’t.
I can’t wait for all of our wonderful adventures on the good days and to be snuggled up next to you on the days that aren’t so good.
I Love You So Much,
After my successful EDS Survival Kit post some time ago I’ve been meaning to write one for POTS and just never got around to it! But now the UK is facing an unprecedented heatwave it seems like there really isn’t a better time. This post will include lots of products that help me survive the summer with the heat intolerance caused by POTS. Most of my keeping cool hacks will be relevant to anyone struggling in this weather and, at the bottom, I’ll add some extra year-round tips mainly for POTSies.
PoTS or Postural Orthostatic Tachycardia Syndrome is a form of Dysautonomia. Which, without all the big scary words, means that the body struggles to do all the things it’s supposed to do automatically (regulate blood pressure, heart rate etc) when you go from lying to sitting or sitting to standing. It causes a wide range of symptoms from dizziness and fainting to problems with digestion. Heat often makes this so much worse.
I was diagnosed back in 2016 and now manage my POTS fairly well with medication, exercise and all of the helpful tips, tricks and products I’m about to share with you. If you want to learn more about POTS & Dysautonomia please head to my youtube channel and check out my 2019 Dysautonomia Awareness Month Series!
DISCLAIMER: I’m not a medical professional and POTS and similar conditions vary so much from person to person that these things may or may not be helpful for you. If you’re unsure please contact a medical professional. I am sharing my own personal experience of how they help me manage my condition. Some of the links below are affiliate links, meaning, at no additional cost to you, I may earn a commission if you click and make a purchase.
1. Wearable Fan
This little beauty has literally been an overnight game changer! I ordered it on a whim and it’s been really helpful. The fact it’s handsfree means you can keep cool and it doesn’t distract from your usual activities, I’m literally wearing it as I type. It’s not heavy so isn’t aggravating my neck either. It has 3 speeds settings and is simple to recharge and can last between 3 & 10 hours depending on the settings you use. It also has colour changing lights which are fairly pointless but definitely a bit of fun to brighten up your day. It’s also quiet so wearing it whilst watching TV hasn’t been an issue. For less than £15 it’s an absolute no brainer to help you stay cool for me! Mum bought a fancy Dyson fan this week and I’m nowhere near as impressed with it as I am with this!
I’ve been using this to help with my headaches for a few months now and it has been amazing as an ‘escape pod for your head’ and it definitely has a dual purpose in keeping you cool in the heat. It uses specially designed ice to keep you cool but means you don’t have to get wet or covered in condensation and the headband is comfy and easily adjustable. It comes with various sizes of ice so you can arrange it just where you need it. I’m excited to do a video for you showing you exactly how it works when my camera is repaired! A couple of cons is that it is a little pricey especially as I was hit with import duty to the UK from Canada but, for the amount I use it, it was definitely worth it and would buy it again in a heartbeat. The only other difficulty I have is if I want to wear my glasses at the same time it can be a bit awkward but I either take my glasses off or have managed to get the placement so it’s comfortable but takes a couple of tries. They also have cooling towels and comfortable mask available.
3. YuYu Bottle
I have been wanting one of these for the last 3 years so I was so happy when I managed to win one in the EDS societies awareness month giveaway! I’ve always known they’ve been a great hot water bottle but as heat can mess with my POTS I could never justify getting it just for my joints and tummy pain (although I can’t wait to try it!) What I only found out on winning it is that you can actually use them for cold therapy too! (They recommend having 2 inner bottles if you are going to switch between hot and cold regularly) All I had to do was half fill my bottle with water fold it in half and pop it in the freezer for an hour and a half and it was perfect snuggle up with and keep me cool!
A quick word on cooling towels. I bought a Dock & Bay one back in October with high hopes but in all honesty, it just made me feel damp rather than cool and considering when I’m hot I spend a lot of time in bed, it just made my bedding wet and uncomfortable. Maybe okay for the gym but I haven’t used it since. If anyone does know any they’ve found helpful let me know!
4. Finally HYDRATE! I know saying this to someone with POTS who already drinks 3 litres of water a day can seem ridiculous but sometimes when I’m exhausted from the heat I struggle to remember to drink. I do love having my litre water bottle (I would recommend mine but it’s tripled in price since I bought it!!) to fill up and keep track of how much I’ve had. I also keep a 3L dispenser like this one in my room so I don’t have to keep going up and downstairs and aggravating my POTS every time I need a refill. Plus I keep these electrolyte tablets by my bed for days I need an extra hand. Top tip for electrolytes always be careful of ones with added caffeine! If you struggle with drinking so much I ordered some ice lolly makers this week and have loved making different lollies to help stay hydrated!
Year-round POTS hacks!
Showering with PoTS is a real challenge. Standing + Heat + Having your hands above your head = a bit of a disaster. So if you take away one of these elements things can become much easier. My Shower Stool was the best, and strangest, 21st Birthday present I got. It gave me my independence back and meant I could shower on my own. I specifically recommend the one linked in the title as it is so easy to put up and take down. I bought another one recently (accidentally not the same brand) as I’d left my original in Norfolk and couldn’t manage without. But on the new one, you needed a screwdriver to put it together and it was a nightmare. So I keep the new one as a permanent feature in my bathroom and take the old one on my travels when I’m staying somewhere that doesn’t have an accessible bathroom. I’m going to look at investing in this one with a swiveling seat in the future!
My hair dryer stand was one of the first things I got after being diagnosed with POTS. Again it gave me so much independence back. My mum and boyfriend tried to dry my hair for me in the early days I did not like it one bit. Drying your hair is another tricky thing with POTS because you’re already feeling exhausted post-shower then you are adding more heat and trying to hold something heavy above your head. This stand means I can sit on the floor and turn as it dries my hair for me. As a Brucie Bonus it also makes life so much easier on my EDS shoulders. If you want to see me using it in action check out one of my early youtube videos here.
3. Babyliss Curl Secret Hair Curlers
Styling your hair with heat is always difficult with POTS but since getting these automatic curlers I have struggled far less. I’m definitely not saying they make it easy and I still avoid it as much as possible but for the days I really want to make that effort I would never go back to other curlers. These make it quicker, the heat is more contained and have also found it less painful on my EDS hands and arms. Bonus is I haven’t burnt myself with them whereas that was a regular occurrence with my wand! It also means if you’re having a really bad day someone who’s never curled hair can do it for you easily if necessary.
4. Gin Gins
Whether it’s hot or not POTS can cause a lot of nausea. I’m lucky that I don’t get it as badly as when I was first diagnosed but I do still suffer with it sometimes and no anti-sickness meds seem to help but these definitely do work for me.
I really hope you found this helpful and please let me know in the comments what your favourite tip to stay cool is! Or your favourite POTS hack in general.
Spoons & Love to you all and hope the heat doesn’t affect you too badly!
‘You look so well’
It’s a phrase I absolutely dread hearing.
The last time I remember hearing it was at my mum’s 60th birthday. Earlier in the day friends and neighbours may have spotted me leaving the house with my walker to get on the bus to pick up the last few supplies for the party after a tearful and stressed out morning. I’d been at Guide camp all week and I was sore and tired. I didn’t have the energy to curl my hair as I’d intended but I threw on a nice (but comfy) jumpsuit and popped on some red lippy. It was my Mum’s 60th, not a night I could really miss out on. But with my walking stick put away and makeup concealing my tired eyes, all of a sudden people see a different person. It’s almost as though, to others, my conditions disappear.
These days I decide honesty is my best policy and reply with ‘I wish I felt it’ and wait for the awkward silence that ensues.
Why can’t people just say ‘you look nice’? What does it have to do with how well I am? Am I not allowed to look nice and have a disability? Am I not allowed to get dressed up and still be in pain? Am I supposed to look unwell all of the time? What does unwell look like? What does a disability look like?
Pain is invisible. Fatigue is invisible. Headaches are invisible. Low blood pressure is invisible. High heart rates are invisible. Very few of the symptoms of my conditions are actual things you can see. But just because you can’t see a disability or condition it doesn’t make it any less real. Sometimes we can smile through the pain and push through the fatigue but it is always there.
Recently I’ve had a lot of comments telling me ‘You’ve Got This’ , and I know I do. I do not post these things for sympathy or encouragement, I post them to make my invisible more visible to those who may not see or understand. I spoke to someone recently who is having problems with pain and we agreed that you can’t mention it all the time because otherwise, we would never talk about anything else. But just because we aren’t talking about it, or we are in a good mood, or we are all dressed up, it doesn’t mean that it doesn’t exist.
I am often terrified to use my blue badge or a disabled toilet without my mobility aid, despite the fact these things help so much and I have full right to use these aids. I fear being tutted at or having a nasty note left on my car because I LOOK young and healthy. I am scared of being seen at the gym for fear that people will think I’m ‘faking it’, even though what they don’t see is the muscle pain I still have 3 or 4 days later.
We all know the phrase don’t judge a book by it’s cover. Feel free to tell me I look great, but never tell me I look well.
Everyone is fighting a battle you know nothing about. Be Kind, Always.
Spoons & Love.
September is coming to a close. This month has brought the feeling of new beginnings as little ones head back to school and an autumnal chill fills the air. I know for sure that I’ve already curled up in a blanket and lit a few candles as the evenings become darker. But something you may not know about September is that is it pain awareness month.
Because pain is something we all experience, one of the bodies natural mechanisms that helps protect us from harm, it may seem odd to some of the population that we should need a month dedicated to the awareness of pain. But for those of us who live with pain on a daily basis, it’s important to try and make others aware of how much pain can affect a person’s life.
I have been in constant, chronic pain for the last 5 years. I hope that this is unimaginable for mot people. I have good days and bad days, ebbs and flows, but pain never leaves my side. Sometimes there’s a reason, an acute injury, sprain or dislocation which causes extra pain, but often there are no answers. Pain lives deep within my tissues always simmering away, ready to boil over at any sudden changes. But the most difficult thing about pain is that it’s invisible.
Doctors will often ask you to rate your pain on a scale from 1-10 but there’s no way this can be accurate. Firstly, pain is so subjective and no one can experience pain in the exact same way as someone else, one person’s 4 could be someone else’s 7 and there’s no way to tell. Secondly, there are so many different kinds of pain; the gentle ache touching every muscle in my body might be a 4, the joints in my fingers are sore from typing so maybe they’re a 5, my neck, head and jaw have been on fire for days so maybe they’re a 7. So how can you quantify pain as a single number, it’s so much more complicated than that.
So today I’m writing a letter to pain. The one who has been my mortal enemy and constant companion for so many years:
I’ve known you since I was a child. You always came out to play. I didn’t realise you spent more time with me than other kids, I thought it was normal, so I didn’t think to say. You’d give me headaches as a tween but somehow I always got the blame; I was never drinking enough or eating the right things. It was always my fault. I was just called clumsy as you reminded me of all the bruises and sprains.
But I suppose have to thank you. Without you, I would never have known that something more was wrong. You kept getting worse and letting me know that there was something different about me which doctors couldn’t see. You were blamed on too much medication and anxiety. You were just sending out a warning so I suppose you’re not to blame. But the immediate danger is over now, I fought like you told me to and got us the answers, and yet here you are. I get it, you don’t know any different. You became too efficient. You’re just doing your job. But do you have to mess with my mood and my sleep and my ability to think straight? Do you really have to make me scream and cry and feel like it isn’t worth carrying on?
There’s this magic invention I’ve dreamed of for years where, somehow, I can give you to someone else. Make them see you, feel you. Just for a few seconds. Maybe just for a minute. Maybe the people who didn’t believe you were real can deal with you for a day. So that they can understand that you never leave me, it doesn’t matter if it’s my birthday or Christmas or if I have to go to work. You don’t care. So they could understand that when I talk about you it’s because you’ve become so intolerable that I can’t stand to deal with you alone anymore. I wish they could understand how unpredictable you can be, not being able to plan life from one day to the next because I have no idea when you’ll decide to be angry with me and make me unable to walk or to hold my head up. I wish you could just give me a little heads up sometimes.
A doctor told me recently that a procedure he wanted to do would be painful. ‘Don’t worry, I’m used to pain’, I replied, meaning that I’ve probably had worse. ‘Noone ever gets used to pain’ he said profoundly. And I guess he was right. We’ve been together so long but you still find ways to surprise me wether you stab me in the stomach or pinch at my delicate shoulder joint or send fire burning through my muscles, often for no reason at all. I want to calm you down. I want to make you happy. Whether its vitamins or exercise or cold therapy or some strange gadget, I do everything I can to be free of you, but I know you will always be there and, somehow, I have to learn to live with you. I hope one day we can be happy. You will be kinder to me and I will be kinder to you. I know it’s sad, but I don’t remember what it’s like to live without you.
It’s strange to think, as I sit here in bed in my most comfortable tracksuit with a bloated tummy and sore head, that this time last week I was sat down for a 3-course dinner in a beautiful cathedral, which looked like it had been taken straight out of a Harry Potter film, dressed like a modern-day Ariel who had just learned to walk. I was surrounded by funny, interesting, brilliant people and had just been laughing as Sally Phillips, from Miranda & Bridget Jones’ Diary, made fun of the current mess of our country’s leadership. It definitely wasn’t an ordinary Friday night. I spent last Friday morning traveling to Liverpool for a wonderful and exciting event that evening. I had been nominated for the Positive Role Model for Disability Award at the National Diversity Awards 2019. It was an absolute honour to just be present at such a wonderful occasion. Let alone being there because I had been nominated for an award myself. It was a very special night.
The first surprise of the night came well before we’d even reached the stunning setting of Liverpool’s Anglican Cathedral. After our very long journey’s mum and I got glammed up at our hotel a few miles away. I gave mum a quick lesson in taking the perfect Instagram shots before our Taxi arrived and we headed to the venue. The surprise comes when we get out of the Taxi and he tells us it will only be £3?! I like it up north 😛 Not only this but outside we were greeted by a huge tribe of drummers to welcome us. I was flattered with so many compliments before we’d got to the entrance but I did have a strange conversation with a random stranger who did not appear to be going to the event but merely a passerby. He complimented my hair and then spotted my walking stick and said ‘Is the cane a reference to a film or tv show or something?’ This was a new one. ‘No, it’s just a walking stick’, I replied. ‘Right…Good…Because that would be bad’, said the stranger. Yes, yes it would, I thought as I carried on my way. A few more pictures outside, got to get the good light, and we headed into the cathedral itself. From the outside It wasn’t the most beautiful building, it’s a strange rusty colour which doesn’t fit with the image of a cathedral which I have in my mind but the inside was a completely different story.
The stained glass windows sparkled under the lights that my lighting designer boyfriend would have geeked out over. Waiters floated around with champagne and canapes whilst film crews and photographers whizzed round. It really did feel like the Oscars. Then we spotted the dining area full of hundreds of candles on tall candelabras atop over 50 round tables in long rows. It really did feel like I was about to attend the yule ball at Hogwarts.
Then I met the first of many superstars of the evening, The lovely Elin from My Blurred World, who was also nominated in my category, yet far more deserving! In 2018 she was named one of the most influential disabled people in the UK for her Disability & Lifestyle blog all about living with a visual impairment. She was diagnosed with degenerative eye condition Retinitis Pigmentosa aged 6 and was registered blind by 12. We had a lovely chat with Elin & her mum before we went to our respective tables for dinner.
Catering for my difficult dietary requirements is tricky so whenever I go to big events with mass catering my expectations are always low. However, I was very pleasantly surprised. We had a very tasty tomato soup with a gluten-free dumpling to start. Now, I’m not going to lie, I still can’t tell you what the vegetarian main was, I’m going with some kind of Polenta slice but the vegetables, fondant potatoes and sauces which accompanied it made the whole plate taste fabulous. They’d gone to great effort with the vegan dessert to make a soy panna cotta with raspberry coulis but desserts generally aren’t my thing, especially milk-based ones even if they are dairy-free, but a gave it a try.
We had some fab people on our table. From SuperTeacher Sarah Mullin, who was nominated for positive role model for gender and has way too many letters after her name, to another nominee from my category, Terry McCorry, a disability hate crime advocate and rheumatoid arthritis sufferer from Northern Ireland. He had brought along his beautiful wife Patricia. We talked twitter and walking sticks and had a lovely time.
Talking of walking sticks, I was so excited to have been gifted a brand new one for the occasion by NeoWalks. Lyndsay, who runs Neowalks, is a beautiful soul. An amputee herself she wanted to make sure people know that walking sticks can be stylish too. I had chosen the champagne fizz stick which is clear and has beautiful bubbles in the acrylic. These catch the light and make the whole stick sparkle. I think this was the first time I’d ever felt proud to use a mobility aid. It complimented my forest green, sequinned mermaid dress, which Mike had bought me last Christmas, so well and with my freshly coloured red hair I did feel like a real-life Ariel for the evening. I felt like a million dollars. As soon as I have some spare cash I know I will have a whole NeoWalks walking stick wardrobe!
Terry & I had a little wander around before the awards segment of the evening got started; the chairs were not ideal for people with hip problems. We were lucky enough to meet Sally Phillips who was so lovely and had time for everyone and asked questions despite being on a tight schedule. We also got to meet National Diversity Awards CEO Paul Sesay who thanked us for our hard work. Finally, we got to meet Dan White, who we had both met separately through Twitter. Dan is a broadcaster, writer and campaigner who had been nominated for these awards in the past but that evening he was there to celebrate the achievements of his amazing daughter Emily, who, at just 12 years old, won the award for positive role model for age. Emily was born with Spina Bifida, among other things, and has been a wheelchair user since she was 3. She wanted to see more people like her represented in TV & Books so, with the help fo her dad created ‘The Department of Ability Comic‘ which features 5 disabled superheroes. She has also appeared on almost all the major TV channels campaigning for better access & care for disabled children. She’s a true rockstar!
Then it was time for the awards to be given out. A whole host of celebrities and public figures were in attendance to present the awards from the Mayor of Liverpool herself to Reggae Reggae Sauce creator Levi Roots, and one of my all-time favourite Paralympians, Hannah Cockcroft. Presenting my category was the editor of Able Magazine, Tom Jamison and Sports Pundit Chris Kamara who rather surprising got the whole room to join him in a chorus of Let It Be which you can see in my latest vlog. Unfortunately, It was not to be for me this time, but I’d come to that conclusion as soon as the nominees had been announced and I’d seen the caliber of who I was up against. Having been shortlisted from over 28,500 nominees, I felt like a winner just being in that room. Plus, Terry and I had already had the discussion that neither of us could possibly win considering we are disabled and we were seated right at the back 😛 The prize went to the brilliant Myles Sketchley who has Schizencephaly, a rare brain defect that caused cerebral palsy, scoliosis, kyphosis. He is a youth ambassador for Strong Bones and has traveled across Europe making wheelchair accessible guides to various attractions.
Obviously, the whole room was filled with incredible people doing amazing things but one fo the main people that stood out to me was the winner of the entrepreneur of excellence award, Codilia Gapare. She is a breast cancer survivor who the first-ever range of false eyelashes for people undergoing chemotherapy called ‘C Lash‘. It’s such a simple but brilliant idea that I’m sure makes such a huge difference to people with Cancer and Alopecia. Her speech was so eloquent and she just really shone.
After the awards, we were treated to some great entertainment including a fabulous Toy Story inspired number from Jennifer Ellison’s dance company, Jelli Studios. But one of my highlights of the night was the LMA choir who you may have seen on The X Factor. There was a technical glitch at first so they treated us to an impromptu acapella performance of the Circle of Life from The Lion King which, in the acoustics of the cathedral, sounded magical. But my favourite performance of there’s, which they ended up doing as an encore, was This Is Me from The Greatest Showman. I know this song is done to death despite the fact it’s been nearly 2 years since it’s release, but having a whole room of incredible, diverse people who knew exactly what that song meant singing along was a highlight of the evening.
The evening finished with all the nominees getting on stage for a fabulous group photo. We shook hands with CEA Paul Sesay as he tried to convince us to join everyone at the after-party but after a 4 hour + journey that morning and a long evening of festivities I decided not to let the fear of missing out win and Mum and I headed back to our hotel in another £3 taxi despite it being almost 1am.
Until I was nominated for one I’d never even heard of the national diversity awards but I think they are a hugely important event which should be much better recognised. Celebrating diverse people and inclusive companies which often don’t get any recognition despite their amazing work. I’m so glad to have many so many amazing people and to have learned about so many more. Thank you so much to the NDAs for having me and huge congratulations to all of the nominees & winners.
To see more about my time at the national diversity awards and weekend in Liverpool head here to watch my vlog.
Over the past few years, I have found so many amazing products and hacks to help me with different aspects of my connective tissue disorder (Ehlers Danlos Syndrome). Some of these things are quite specific to EDS but others would be helpful for a wide range of chronic pain conditions. I’ve called this post part 1 as I learn about new things every day so I will do a little round-up every few months but the full list will always be available at kit.com/ChronicallyJenni
DISCLAIMER: I’m not a medical professional and EDS and similar conditions vary so much from person to person that these things may or may not be helpful for you. If you’re unsure please contact a medical professional. I am sharing my own personal experience of how they help me manage my condition. Some of the links below are affiliate links, meaning, at no additional cost to you, I may earn a commission if you click and make a purchase.
This knife has been an absolute lifesaver in the kitchen as the joints in my fingers really struggle with the position your hand needs to be in to cut with a normal knife. Using your hold hand to grip and the weight of your arm to cut it makes chopping so much less painful. You can see me using it in many of my vlogs but I talk about it most in my recent EDS Hacks Video.
2. My Knee Pillow
I don’t have to tell you that having a chronic pain condition makes it extremely hard to get comfortable at night. So I asked for this knee cushion last Christmas and now I can’t stay anywhere overnight without it. It means I can get my knees into a much more comfortable position to ease the discomfort in my knees and hips but the main bonus of this particular pillow is that it straps (comfortably) to your leg. For some reason it seems that people with EDS tend to be massive fits so when I’d used other pillows before they’d end up on the other side of the room in the morning, so having the strap means it actually (for the most part) stays on my leg so I don’t have to go searching for it in the morning.
3. My New TMJ Mouth Guard
This mouth guard is my latest purchase and I’ve been trying it out over the last week or two. I’ve been having some really bad jaw and facial pain so I asked on a Facebook support group to see if anyone had any advice. I had various different responses but a lot of people had said to head to the dentist to get a mouthguard. Now, I’m not the biggest fan of dentists and couldn’t really afford to go even if I wanted to so I found this online and thought it was worth a shot and it’s been so good. It comes with two different sizes I needed to bigger ones to reach my back teeth and Mike and I had a good laugh as I followed the simple instructions to mould them so they were comfortable and it’s calmed my jaw pain right down. Obviously, I will mention it next time I go to the dentist but this seems like the perfect solution for now.
Everything on Hannah Ensor’s Stickman Communications is super helpful when it comes to helping people understand what you need them to about your condition quickly and easily. Basically, they are small laminated cards which you can pop in your handbag and use as a quick and easy explanation for your condition or why you have to do something a certain way. I remember using my POTS one with a member of staff on a cruise ship. I was completely out of breath, sat on the floor and couldn’t explain my condition so gave him the card so he knew what was going on and that this was normal for me. She has a card for almost every situation and condition and if she doesn’t you can request one especially. She also has a great range of products from hoodies to badges to bumper stickers to help make explaining EDS that much easier.
5. Braces & Supports
I could write a whole post on it’s own about the different braces and supports I’ve used over the years. I love KT tape but it’s not always easy to do on yourself and has been causing me major skin reactions recently. Plus, since this is a lifelong condition, I have tried to invest in a few more permanent solutions.
My favourites and most used braces and supports are:
6. Heating and Cooling Therapy
Many people with EDS find that heat is the best way to manage a lot of their pain but my POTS has made me so heat intolerant that it just isn’t the way forward for me so I much prefer ice to heat. Here are a couple of the best things I use.
7. Assistive Technology
So that concludes part one of my EDS survival kit and I’ll post a part 2 in December with more helpful products that I’ve found to make EDS that little bit easier to manage. If you’ve got any products that help you with your condition that you think should be added to the kit let me know in the comments.
Spoons & Love,
If you’ve been over to my Instagram page this week you’ll have seen I’ve been fighting off a major flare so it’s time for a double Chronic Illness Weekly update. You’ll see me battling insomnia and Hospital appoints. Then I head on a HUGE day out in London visiting the London Eye, Madame Tussauds and seeing Les Mis in Concert and even meeting some of the stars. I then hit a major flare which leaves me in bed for nearly a week.
If I’d have had to write my final university project two years ago, when I was part of the class of 2017, I couldn’t tell you what I’d have written about, since going back to university I always knew that I wanted my project to focus on chronic illness, although it may seem like an obvious choice. Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and Chronic Fatigue completely changed the course of my degree and my life. But wanting to use my artistic skills to create a piece based on this doesn’t just come from the fact I have these conditions, It comes from the passion to help others and spread awareness so other people don’t have to face the difficulties in diagnosis, treatment, management and social interaction that I and so many others have faced.
The aims of my project revolve around my desire to establish a deeper understanding of the complexities of living with a connective tissue disorder such as EDS which affects multiple systems in the body. I wrote several different versions of plays that I hoped would give a greater understanding of EDS, but although they were well received by people with the condition and those who know me and my journey well, they were not coming across with those with less understanding and my main goal with this project was to raise awareness within a wider audience. And in playing real clips of interviews I’d done I got the desired response from both audiences and this is when I decided that a documentary style format was going to be more appropriate.
I worked very hard on this piece over many weeks. I am so proud of it and the feedback it’s received. I’m very pleased to say that it achieved a first at university. But this project was never about the final grade for me, it was about raising awareness and giving people an insight into all that you can’t see about someone living with Ehlers Danlos Syndrome. Please share it far and wide.
I’m very proud to present my radio docudrama: All That You Can’t See
All That You Can’t See
Living with Ehlers Danlos Syndrome
A Radio DocuDrama Produced by Jenni Pettican
Presented by: Tom Rowntree, Verity Hodgson-Bajoria & Shem Jacobs
Dr Edvard Ehlers Played by: Markus Dalum Tilds
Dr Henri Alexandre Danlos Played by: Jacob Simmons
Huge Thank you to my wonderful dazzle of Zebras for sharing their stories:
Kilynn, Georgia, Sydney, Rachel, Shannon, Stacey, Catie, Brittany,
Rachael, Amy, Poppy, Kim, Laura, Gemma, Cosima,
Martin and Carol.
Please donate to my All That You Can’t See Fundraiser so people can get the awareness, understanding and treatment they deserve.
To Find out more about Ehlers Danlos Syndrome & Hypermobility Spectrum Disorder please visit:
To find out more about Jenni and her fellow EDSers please visit:
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Recently I’ve had a lot of questions from friends, colleagues and spoonie’s alike about my mobility aids. From how I started using them and accepting them as part of my life to why I do, or don’t, need them from one day to the next. I hope this post gives you a little insight into what it’s like to have a variable chronic illness and the love/hate relationship I’ve had with aids over the years.
Firstly, I want to talk about how scary it can be to start using a mobility aid, especially when you’re young. I’ve always found that there’s a preconception that aids like walkers and walking sticks are just for old people. So that can be really daunting. I went to an event when I first got my walker and had to leave it with loads of identical ones I saw countless old ladies park in the same spot. That’s the main reason I decide to decorate my mobility aids. When people comment on my sparkly walking stick I always say, ‘Well, if you’ve got to have it, it may as well be pretty’. My first piece of advice to anyone worried about getting a mobility aid and being too scared to use it, because they think they’ll be stared at, is to make it your own. I went through a stage when I thought I shouldn’t be using my walker because I ‘didn’t need to’ despite the fact it’s always helped me so much. So, having already covered it in Zebra tape, I covered the seat with stickers of all of my favourite things so every time I was using it I felt happy and this managed to fight off the cruel voices in my head that were telling me I was ‘giving up’ by using when actually I was making a sensible decision to help myself. Loving your mobility aid and knowing how much it helps you and the reasons you use it will give you so much confidence that it really won’t matter if people are looking.
Now a lot of people get confused when they see me in one place and my mobility aid in the other. Just like when an ambulatory wheelchair user gets out of their chair and everyone either shouts, ‘It’s a miracle’ or ‘You’re a fake’. Neither of these statements are true. I’m going to explain some of the reasons that I use different aids for different days and why sometimes you’ll see me with no aid at all.
Wilhelmina the Walker
I bought Wilhelmina off an old man on facebook for £10 because I didn’t want to pay out loads for a walker (becuase they’re expensive) and find that I didn’t like it. Of course, It was amazingly helpful and, despite having no brakes, she has done me very well ever since. I even tried a posher walker that was left to me but just didn’t get on with it half as well. A Walker is useful for so many things. Not only does it support me walking on days I’m really struggling with my pain in my legs or knee subluxtions but it also helps me carry things from general handbags to suitcases to laundry to big speakers and cables. This means the pressure is off my shoulders. Mine also has an in built bag so I can take my heavy water bottle around with me with ease. It also means that I have a seat with me wherever I go which can help with my POTS symptoms, especially in queues, and gives my legs a rest. I mostly use it for big days out such as theme parks or the zoo, but I also used it around uni a lot for general tasks- mainly carrying my books, laptop and laundry. It can be difficult to use when a place isn’t very accessible and/or when I’m having trouble with my shoulders as I can’t take the weight on my arms.
Cecily the Stick
My lilac mermaid sparkly stick was a steal from amazon warehouse after I lost my old faithful stick ‘Stickie’ who then reappeared a few months later and, if I can find him, he will be getting a crafty upgrade ahead of the National Diversity Awards in September. My stick is my general go-to mobility aid. Although it doesn’t give as much support as my walker and isn’t a seat, however hard I try to prop myself up with it, it’s so much easier to get around with. It can change height easily if I get brave enough for heels and can fold up in a bag if necessary. I don’t realise how much my stick actually helps me. I managed to forget it today, which is a first for me, and I got so exhausted so quickly from walking around for a little while without it. I also never know when a flare is going to hit so even if I’m feeling brave I always keep her in my bag just in case. Also tricky to use when I have shoulder issues but at least it only uses one arm, unlike my walker.
Sometimes things get really bad. And I’m a determined little bugger, so want to make it to class on days where I can’t walk, even when I probably should stay in bed. But, on many occasions, I have tried (and mostly failed, because of my dodgy shoulders) to wheel myself around or make my flatmates get me a mobility scooter from the disability office at uni so I could get out of bed. At one stage a wheelchair was the best pacing option for me. And I will still often use one going through the airport so I’m not too tired or in too much pain before a flight, which I find difficult. I hated having someone push me and it often hurt my back and hips more than walking so that’s why a walker was the best long term solution for me personally, but when my POTS was bad, especially in the heat, and after my surgeries, a wheelchair was the only good option. I realise that I am very lucky to, most of the time, have the choice.
‘No aid? You must be feeling better’
This is the phrase I hate the most. I can understand why people say this, it is a fair assumption. But it is so wrong to think you can tell how someone is feeling by which mobility aid they’re using. The biggest reason that I will not use a mobility aid is because I’ve subluxated or dislocated a shoulder. This means my shoulder is in pain and I can’t put my weight on an aid so I can’t use one, but then my legs and my body are in pain and tired because they don’t have the extra support of an aid. There are other times where a mobility aid just doesn’t work. For example, at the gym. I used to be so scared of going to the gym, despite all the good it was doing me, because I was worried people would think oh so she can go to the gym but now she can’t do xyz. But I knew the gym was making me stronger. And I guarantee my legs will be shaking after a session and I’ll be needing my stick. Sometimes, I think it will be easier to do small tasks without as I need both hands and occasionally I just get cocky and regret it after. For example, at graduation, I decided to take my stage walk unaided not realising how far it was or how many stairs there were so got back to my chair tired and out of breath having to take it slow and hold onto railings which could have been avoided. Plus a lot of the time, I have my stick, but I just put it away for the photo, which I’m trying to do less as it’s nothing something I feel I have to hide. Also, there are so many invisible aids; all sorts of supports and braces and tape that’s holding my body together that you can’t see.
I hope that this has given you some insight into the many reason why people might use different aids on different days. And if you have been thinking that a mobility aid might be helpful I hope this has given you some confidence and advice. Mobility aids can give someone so much freedom, they are not giving up by using one. The long and short of it is I can do things without my aids, but I can do so much more with them.
Spoons & Love.
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