Chronically Jenni
Spreading Awareness & Helping Others with EDS & POTS
Accessible Theatre Review: Frozen The Musical
I finally got to see Frozen the musical, almost 2 years after I originally booked it, & it was definitely worth the wait!
The Theatre Royal Dury Lane has recently been refurbished and this made for the best access experience 
I’ve had at a theatre. There was a clearly labeled accessible entrance where we were met by someone who arranged for us to be shown to our seats. The whole stalls level is completely flat so we could access the toilets, shop & concessions on our own with ease. This was a little dangerous as it meant it was way too easy to treat myself to an Elsa inspired XL child’s hoodie…I regret nothing 😛 The main aisles were also wide enough that I could take my walker/wheelchair all the way to my seat. There is also lift access to all levels although this is something we checked out for ourselves. Their covid measures were also excellent with covid passes required for entry and inside staff had signs enforcing mask wearing and an announcement was also made to make sure people wore masks (which the vast majority of people did) making me feel a whole lot more comfortable than my last theatre trip to Mary Poppins a couple of weeks ago where no of this was in place despite it being advertised that it would be. I got the tickets a long time ago but for access seats you have to fill out a registration form but I don’t think it was a long form and once you’ve registered it works for all LW theatres and you can sort your tickets quickly and easily.
The show was amazing! After Let It Go I sat there for a good minute with my mouth wide open in awe which I don’t think I’ve ever done in the theatre. Simply & literally jaw droppingly good! Despite the millions of times I must have heard that song, the production of it, Samanta Barks’ amazing voice & the famous quick change made it pure magic which was phenomenal to watch. Hygge was definitely my favourite ensemble number & had us laughing out loud the whole way through! I didn’t know what I expected of Sven the reindeer but it was the most incredible & realistic animal I’ve ever seen staged, I’m still not sure how they achieved it but it’s incredible work from the performers Ashley Birchall & Mikayla Jade and Puppet Designer, Michael Curry. Obioma Ugoala had a voice like butter with an incredible range & was the perfect Kristoff with strength, sarcasm & sweetness. The wonderful surprise of the night for me was Oliver Ormson as Hans. Hans was always going to be a tough character because, when you’ve watched Frozen as many times as I have, you are programmed to dislike him from the start but Oliver made the character so genuine and likeable, sweet even, that you could suspend that disbelief and still be shocked when he reveals his evil side, which Oliver also played extremely well. I wanted to wear every single one of the costumes, they were so amazing. In the second half Elsa has a slightly unnecessary but completely fierce costume change into a corset and trousers with fur trimmed boots which I wanted to wear right off Samantha Barks’ back it was so cool! I loved how they stuck to the scandinavian styles & textures for the costumes but it really was the sets, lighting design (Neil Austin), video design (Finn Ross) & special effects (Jeremy Chernick) which really brought the magic to life for me, especially Elsa’s ice palace with crystals falling from the sky like icicles and the Northern light backdrops. Finding out the scenic & costume designer was the same person (Christopher Oram) makes total sense because the whole landscape of the production gelled together so well.
They did change the order of the story from the film which was a little disorientating at first although small details from Frozen 2 were mentioned which I enjoyed. After hearing and loving ‘What do you know about love’ on the soundtrack this was the only number which fell a little flat for me, but this may have just been my high expectations having listened to it. They also switched the For The First Time In Forever (Reprise) for a new song which I don’t remember the name of. It was a very sweet song for the two sisters to sing together but didn’t seem to match the distress Elsa then displays so I feel keeping the more memorable reprise would’ve been better. I also really missed Anna’s song ‘True Love’ from the broadway soundtrack not making it to the west end version, not only because it’s one of my favourites, but because it is an important part of Anna’s journey as a character. Without it we don’t have time to digest the pain & heartbreak which made her conclusions about Kristoff and the end in general feeling a little rushed. The last thing which was difficult was all the kids, it is Frozen so I totally get it, but this isn’t a panto or a singalong, it’s a proper west end show and deserves that level of respect which I don’t think it got from the kids in the audience. I was also surprised at just how many kids were there on a Thursday matinee when they should’ve been in school. The theatre says it doesn’t allow under 4’s but I don’t think that was strictly adhered to. The kids next to us were extremely well behaved but the child behind my friend sang loudly & was kicking & climbing the chairs, the steward did talk to the parents in the interval after we mentioned it but unfortunately it didn’t help much which was a real shame. There was a lot of singing along to the well known songs and noise from kids throughout especially during the spoken scenes where they had lost focus. This even had me distracted despite being extremely used to working in a similar environment so do be prepared. Big props to the cast for managing to perform every night with that level of distraction because it’s tough!
Overall a really wonderful production which was definitely worth the wait and I can’t wait to hopefully see again in the not too distant future. Until January they also have the frozen light tunnel and frozen christmas trees in and around Covent garden so do check them out and have a little instagram photoshoot fun before or after the show!
I’d love to hear about your favourite musical in the comments and your thoughts on Frozen if you’ve seen it. I’d also love to know if you’d like to see more theatre reviews from me in future including info on Covid Safety, Accessiblity as well as about the production itself.
Chronic Illness Holiday Gift Guide
The Holidays are coming and the Black Friday deals have already begun and for me that means it’s time to get my Christmas Shopping sorted! So whether you’re a spoonie writing your wishlist or looking for a great gift for a chronically ill loved one, this is the guide for you!
If you are someone who doesn’t have a disability and/or chronic illness and are looking for gifts for someone who does please click here for some tips on things to look out for and some of the best and worst holiday gifts according to spoonies themselves.
When I asked my instagram followers for the top holiday gift they’d like to receive the top categories were; Temperature Control Products; Comfort items such as Pillows, Blanket & PJs etc; Distraction items such as craft supplies and entertainment; and Mobility Aids, Management Tools & Household Help so I have arranged most of this guide under those headings. What’s on your Holiday wishlist? Let me know in the comments! Without further ado let’s jump right into the gift guide!
(Disclaimer: 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.)
Comfort & Distraction Items
Living with chronic pain is extremely uncomfortable and means we spend a lot of our time in bed or on the sofa so things to make life more comfortable are a dream!
My Kally Sleep Body Pillow has totally revolutionised my sleep since I got it in August. The body pillow supports your shoulders, hips and knees perfectly and is just the right size so you can share a bed and not bother your partner. It’s also super soft and It’s easy to wash & change the covers. They also come in a range of different colours to match your decor, there’s even a sherpa fleece range!
I also love Kally Sleep’s candles, especially the sandalwood, and their anti-snore pillow has also been a lifesaver for me since I bought one for Ian, if your partner or a family member snores I highly recommend getting them one as a holiday gift. They have loads of great things so head to their website linked in my bio to check out their whole range and you can use Kally Sleep Discount code CJ15 for 15% off!
PJs
I live in PJs and loungewear for the vast majority of the week. Many of my PJs are full of holes because I wear them so much and am always pleased when someone gets me a new set. Whenever I’m looking for a new set I look for something they will last and I also have quite strict rules for my PJs should look like (no buttons, elasticated ankles etc). Many people can also have sensory issues with clothes so this one is definitely best to ask about if you are getting them as a gift. That being said I just got a beautiful Zebra set for my birthday from Chelsea Peers NYC which are absolutely perfect for me and I highly recommend (they have 30% off for Cyber Weekend!)! Next & M&S are some more of my go-tos for PJs because they’re super comfy and long lasting.
Home Entertainment Vouchers
When you live with chronic pain and/or chronic fatigue distractions can be your best friend and I couldn’t tell you how much time a week I spend on my Netflix, Disney Plus and Amazon Prime accounts watching shows and movies old and new so treating someone to all or part of that subscription goes a long way, especially when there are so many streaming services out there nowadays. Some people can struggle with TV and although I love physical books I struggle with them because I can’t hold them and or concentrate on the page in front of me but audiobooks have been my savior and I love them to help me sleep or to have on in the background whilst I rest so an Audible subscription could also be a great gift.
Activity Books/Craft Supplies
Again we love distractions and when we have the energy for something physical simple crafts and activities are always a winner. Again if you are getting this as a gift it’s something to ask about first as I can struggle with my hands so if you wanted to give me a colouring book or paint by numbers, for example, it would be great to also get an aid which would make holding a small pen or brush more comfortable to go with it.
Temperature Control Products
Most of my spoonie friends absolutely LOVE heat products whether it’s heat pads and hot water bottles for soothing specific aches and pains or warm blankets for general warmth. In fact when I asked my instagram followers a whopping 87% said they’d love a heat product as a gift! However, I know some spoonies, myself included, who cannot tolerate heat much at all so here’s my run down of the best heating and cooling gifts out there no matter which way you prefer.
I got my heat holders Snuggle up luxury fleece blanket earlier this month and I don’t think I’ve been more than 6 ft away from it since it arrived. In fact I’m snuggled under it writing this! It’s the warmest, softest, nicest blanket I’ve ever had, I think I need to order a couple more! It’s a large blanket at 180cm x 200cm so you can really wrap yourself up in it. It’s been developed specifically to retain heat and has an official tog rating of 1.7! My pet hedgehog Honey also loves curling up with me in it. Heat Holders also have a great range of other great stocking filler type gifts from really high quality and warm sleep socks to hats, gloves and neck warmers but I think my favourite product of all has to be their tights! I love wearing dresses in the winter but normal tights mean my legs get cold and itchy and my knees get painful but their tights have been a game changer, they’re warm, soft and super comfortable too! They also currently have 15% off everything for Black Friday with code: BlackFriday15
The YuYu Bottle is a wearable long hot water bottle which is perfect for hands free pain relief. They come with beautiful covers in a range of styles and colours from fluffy zebra print to Japanese cotton, Belgian linen to luxurious cashmere. They also have a range of new covers so you can pop your YuYu in the freezer and use it as cold therapy too. These are super high quality and long lasting. They can be a little heavy but when tied round your body the weight distributes nice and evenly so it’s not as big of a problem. Before we turned our heating on I slept with both of mine, one for the pain and another to keep warm haha.
This is for all my friends who, like me, prefer the cool to the heat. Releaf packs are a super soft and flexible ice pack which come in loads of different colours and patterns. They are made using a completely vegan, locally sourced, all natural dried bean filler and 100% cotton. Mine is unscented but if you do prefer you can have lavender or mint organic dried herbs added for gentle fragrance. Because of their materials they don’t get wet due to condensation like other ice packs and still stay cold for hours. The only thing I struggle with is the weight (3.6lbs) but they do also have a ‘releaf buddy’ size which is a little smaller and lighter. You can currently use the code Holiday10 for 10% off!
Now Stoov is not a brand which I have tried myself but I have heard they are great. For my heat loving friends they do a range of electric pillows, seat cushions, cushion covers, hot water bottles and heated blankets. They’re USB chargeable so can be plugged in to the car or power bank for heating on the go and without the need for kettles or microwaves! Definitely one to check out.
This is the perfect gift for anyone who struggles with temperature control. If you’re that friend or family member that’s known for always being cold or you struggle with overheating, often inexplicably, this one is for you! The new Embr Wave is a light and sleek looking wristband which is an easy and super subtle way to help manage your thermal wellness. With the press of a button or tap of the app the Wave delivers a warming or cooling sensation to your skin activating a natural scientific response in your body to help manage your perceived temperature. I’ve been finding it really useful in getting a better night’s sleep and managing my heat intolerance caused by POTS. It’s also great on chilly days when I need some extra warmth without an extra layer. I really love the app where you can set different programmes, such as All Night Cool or Fireplace and intensities to suit your needs. It also has dedicated settings for hot flashes and Embr has recently completed a study with Johnson & Johnson Innovation and the Wave wristband is now clinically-proven to better control hot flashes! The stainless steel Milanese loop wristband with its adjustable magnetic closure feels very elegant and luxurious and the sleek black or on-trend rose gold colour choices means it doesn’t feel like another ugly, bulky medical device making it a great gift. I also love how discreet it is, to outsiders it looks like it could be a smartwatch, meaning it comes without the questions or stares of wearing wearable fans or a wearable hot water bottle in public. As I’ve spoken about a lot in the past, management options, especially for temperature control, can be very trial and error from person to person so I love that the Wave comes with a 30 day home trial so you can make sure it works for you, It is one of the more pricey items on this list but their Black Friday sale will offer $50 worth of free accessories with every purchase of the Wave 2 meaning you get more for your money. To give the gift of thermal wellness this year you can click here to buy and find out more. If you’re in the UK these are also now available in Boots!
Mobility Aids & Household Help
If you know me you know how much I love my Neowalks walking stick collection. This time last year I had 4 but I now have 10 in my collection and another on my christmas list haha! They come in a whole range of beautiful colours with bubbles, glitter and light up options too. They also come with a variety of handles to suit your needs; if you are hypermobile like me I highly recommend the question mark or snoopy handle for maximum comfort. The sticks are made to order and aren’t height adjustable so you will need to get a measurement so it’s best to ask or to measure a mobility aid they already have. If you or your loved one already has a neowalks stick they also sell a whole range of fun, colourful and often sparkly wrist straps which make great stocking fillers! This year you can also get gift cards so the recipient can choose their own stick and really make it their own! You can use neowalk discount code Jenni10 all year round for 10% off orders over £60.
Silver ring splints are another type of beautiful mobility aid that can definitely be a gift. When I worked at a cinema and took tickets I had lots of compliments from customers on my interesting and stylish rings and they had no idea about the support those rings were giving my finger joints. Zomile is the best in the business and has detailed measuring guides to help find the perfect ring size and makes rings for every different joint including thumbs. Needing exact measurements does mean this gift probably can’t be a surprise but you can get jazzy with them and choose from silver, gold plate or gold and add extra gem stones, texture and cute embellishments to add an element of surprise. Another beautiful but also practical gift!
Izzy’s Wheels have their only sale of the year for Black Friday and make incredible wheel covers for wheelchairs with amazing, beautiful designs to suit everyone. They also have a wide range of star wars and disney designs which I can’t get enough of! The Frozen wheels are on my wishlist for sure – Yes I am in fact 7 and not 27 😛
Management Tools
I know lots of people like to give more fun gifts at Christmas but I will never turn away a practical present. These things can be expensive and can add up so I always love getting helpful, useful and practical things to help manage my gifts. Who wouldn’t want a gift that gives them more energy and reduces their pain even if it might be seen as boring. I got a shower stool for my 21st birthday and it was the best present I ever got. Not the plastic and metal that makes the chair but the gift of being able to shower independently.
I have lots of different guides and survival kits which include all the things I find useful to manage my EDS & POTS which you can find below and I’m updating them all the time. Most of the items are helpful for all sorts of pain and fatigue so will also help people with a wide range of conditions.
EDS Survival Kit – Blog – Video
POTS Survival Kit – Blog – Video
‘Get Out of Guilt’ Vouchers
You might think I’m talking about gift vouchers from shops and although these can make great gifts this kind of voucher will cost you very little but will make a huge difference to a spoonie. As someone with a chronic illness I often feel guilty about asking for help or not being able to do certain things but I often need help. I would love for a friend or family member to give me some hand written vouchers as kind of ‘get out of guilt’ cards. For example a booklet including things like ‘I’ll come over and do your washing up’ ‘a load of laundry on me’ ‘I will cook us a meal’ would mean so much and is much more useful to me than flowers or chocolates.Obviously the ongoing pandemic may still restrict this at the moment but definitely one to use if you can or keep in the back of your mind for future reference. Another thing I often struggle with is cooking when my pain and fatigue flares up so a voucher for just eat, deliveroo or uber eats (depending on your area) would be a great gift so I don’t have to feel bad for spending out on a takeaway when I don’t have the energy to cook.
Ffora create stylish attachments and accessories for wheelchairs. I’m obsessed with their bags which clip onto the footplate of your wheelchair giving you easy access to your things without having to have a handbag on your lap or reach for something in a backpack behind you. They have cupholders too! Unfortunately they aren’t suitable for some wheelchair’s, like my rollz, because they only have round attachments, but if they did work it would definitely be on my lust list. They currently have 30% off sitewide with code YAY30 until Cyber Monday.
Is another product I haven’t tried but as I’m using my wheelchair more and more it’s definitely on my list! They sell a range of wheelchair covers and other accessories for all ages. Their fleece-lined wheelchair cosy’s look amazing because they keep your legs and lap warm but are also waterproof on the outside so your legs and lap and stay dry in the rain.
Support Spoonie Small Business
Living with a disability or chronic illness can be difficult, and can be even more difficult when you’re a small business owner too. So shop small and shop disabled this festive season with my disabled owned small business directory so you can give them support and find products or services you love! You can find all sorts in this list from Clothing (including my merch store), Jewellery & Accessories to Stylish Mobility Aids to Gifts, Artwork & Services.
Thank you so much for checking out my Chronic Illness Holiday Gift Guide! I’d love to know if you’re going to be adding any of these things to your list or thinking of getting them for a friend! What else is on your wish list, I’d love to know in the comments! Happy Holidays!
Vitassium
Do you live with POTS but struggle to get enough salt in your diet? I adore salty snacks & adding lots of salt to my food but I know many people who can think of nothing worse. If, like me, you have POTS or other conditions which cause low blood pressure it’s likely medical professionals have spoken to you about getting more salt and increasing your water intake. Of course these levels differ from person to person but 3-10g of salt a day is usually recommended along with around 3 litres of water. This has been found to increase blood volume & therefore lowers heart rate & increases blood pressure which helps to create a better equilibrium in POTS patients and reduce symptoms such as dizziness. But getting enough salt can be difficult so this is where Vitassium comes in.
Disclaimer: I am not a medical professional and speak about chronic illness from my own personal experiences and share what has helped me but it may or may not be suitable for you. Please always consult a doctor before adding salt to your diet as it is not suitable for everyone including those with high blood pressure or kidney problems. Vitassium is designed to be used under medical supervision. I work with Vitassium as a brand partner and this post is part of a paid partnership. I only ever agree to do ads for products I use regularly and love.
There are so many reasons I love using Vitassium’s Buffered Electrolyte Salt Capsules to help increase my salt intake:
- Vitassium has been specifically formulated for the clinical dietary management of POTS and other conditions such as vasovagal syncope, other forms of dysautonomia and cystic fibrosis, when increased plasma volume has been shown to be beneficial. That means it’s packed with sodium unlike other supplements on the market. A two capsule serving contain 0.5g of sodium which is 0.2g more than a pack of ready salted crisps. And you can take up to 4 dosages a day so it’s a really quick and easy way to add 2g of salt to your diet. It also only has 4 ingredients so it’s free from preservatives, sugar, allergens & fillers. I take 2 capsules of a morning to help give me that boost to make getting out of bed easier and then take more throughout the day if it’s hot or I’m required to be on my feet for long periods of time.
- It’s completely tasteless so if you don’t like the taste of salt it’s a great option! It’s also easy on the tummy and despite the tablets looking quite large I find them really easy to swallow despite the fact I really struggle with swallowing tablets. If you can’t swallow tablets their sister brand SaltStick (designed for athletes) has a chewable option avaliable in their fastchews which come in great flavours (Peach is my favourite!). These only contain 0.1g of sodium but do also contain other electrolytes but the great news is Vitassium will be launching their own version soon with more sodium specifically for people with POTS & simialr conditions.
- The packaging is really well designed as the top pops open so it’s much easier on my painful hypermobile fingers and they can be tipped out of the bottle really easily. They also come in reseal pouches which are great for taking on the go.
- You can join Vitassium Club if you’re in the UK, USA, Canada, Australia or Europe. It’s free to join and gives you loads of great perks such as up to 20% off, Free delivery (on certain amount spent which is different depending on your country) and priority access to new products, special offers and new medical literature. It’s really easy to join by clicking here and filling out the super simple form and it’s totally free!
Please visit the Vitassium website for more information and for more of my favourite products which help me manage my POTS better check out my POTS Survival Kit Video.
Top Tips for Virtual Dating During Lockdown
When I found myself single at the beginning of 2020 I thought any hopes for my love life were completely off the cards. How on earth can I think about dating when I can’t meet anyone? But there was a voice in the back of my mind saying ‘Rapunzel met her prince in quarantine, so maybe you can too’. Little did I know my fairy-tale Lockdown love story was about to begin! When I signed up to online dating in Lockdown 1 I’d never done it before; I didn’t expect much. So if you’d told me that by Lockdown 2 I’d be living with the love of my life & our pet hedgehog, I definitely wouldn’t have believed you. Watching my Youtube videos you’ll know about my life with Ian & Honey but I’ve never shared how vital virtual dating was to our early relationship. If you’ve never done it, it seems like a scary concept but I found it much easier than dating IRL because it took the pressure off & meant we could get to know each other first. So if you’re looking for some ideas on how to make virtual dating work for you, with a new partner or long-term flame, here’s our top tips:
1. Use Zoom
I’d been out of the Essex dating scene for a long time so I had no idea what kind of people I could expect. Although video dating doesn’t come with the same dangers as meeting in person, I still didn’t want to give out my number or social media to a stranger so using zoom is great because all you need is a link. If the date doesn’t go well they can’t bother you.
2. Set Rules
There are 2 main difficulties with virtual dates: firstly, much like working from home, any kind of dress code has gone out of the window. I made a special effort for all of our dates, however Ian did the classic nice jumper & pyjama bottoms. I was a little sad when I noticed. For some people this is a big deal & for others it’s not, so message about whether you’re going all out, smart casual or sticking to your pjs before switching on your cameras. The second is there’s no set end time, if you go to a pub or restaurant you have to leave by closing but we would lose track of time, ending up talking at 2 or 3am on a school night which played havoc with my sleep.
3. Play Games
Ian & I got to know alot about each other quickly by playing 2 truths & a lie. But a month in we needed to come up with some fresh ideas so turned to a great site I’d remembered from when I was in a LDR. It had 100+ ideas of fun things we could do whilst we were apart. One of my favourite memories was making virtual babies. To cure my lockdown boredom I got Sims & we’d play over zoom using screen share. We created our dream house, then made our sims do all the things we longed to do (WooHoo in the Hot Tub anyone? ;P)
Which is cuter: Ian & I’s baby boy… 
Or my secret love child with David Tennant?
4. Don’t Just Video Chat
People fall in love in lots of different ways so be sure to mix up your mediums. On days when you aren’t having official dates phone each other on your lunch break, play games & ask questions over text, send memes, selfies and videos of your day to bring each other closer. We also really enjoyed watching movies simultaneously & texting along. It was actually very strange watching a film together in person and not talking the whole way through because we were so used to it.
I hope that’s given you some ideas of how you can make virtual dating work for you. Don’t give up on Lockdown love, I’m living proof that it can happen!
Spoonie Holiday Gift Guide
On a normal year I would normally not even have started my holiday shopping yet and I would be a complete Scrooge to anyone I came across playing holiday music or who had put their Christmas tree up already. Maybe it’s because I have a November birthday, but usually I think the longer Christmas gets dragged out, the less magical it becomes. But this, my friends, is not a normal year. 2020 has been so unprecedented (#WordOfTheYear) that this year I’m doing everything I can to make it a little bit more magical so I’ve already done the vast majority of my holiday shopping and will probably spend most of the weekend begging my partner to let me put the decorations up (I got away with some fairy lights in the living room last week). With all this in mind I wanted write a little something to help you forget the troubles of the year and get you excited for the holiday season, whether you are searching for a gift for a chronically ill loved one or you are a spoonie looking for ideas for your winter wish list, here’s lots of things I’m loving right now.
Note – If you don’t have a chronic illness or disability and are looking for a gift for someone who does please talk to them first. There may be things you wouldn’t even think of which mean they can’t use something which you think is a lovely gift. Whether it’s due to allergies, intolerance, sensory processing or aspects of their condition which might make things difficult. For example I am intolerant to lots of different foods which most of my loved ones know about but I’m also intolerant to certain fragrances and can’t take baths so something like bath salts which help a lot of people who live with chronic pain would be useless to me. My tip to keep things a surprise is to ask general questions around a type of gift (Do you like bath sets or What’s your favourite makeup brand) or ask about a particular allergen/ irritant (Can you tolerate wool? – you could be thinking of anything from a scarf to a blanket)
(Disclaimer: 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.)
Spoonie Apparel & Accessories:
This was really the first brand I knew about that made clothes for people with chronic illnesses by people 
with chronic illnesses. They have an incredible range of super comfortable tops and hoodies with hilarious chronic illness related phrases on them then they also have ones you wouldn’t necessarily know were chronic illness related unless you dug a little deeper, for example my one which says ‘Pretty Sick‘. But the best, most ingenious product they have by far which would make a great gift is their heat pad jeans which are comfy jeans with specially designed pockets for heat pads to ease stomach pain and cramps. You can also get 15% off shopping with them by using code: ChronicallyJenni . Shop with them by clicking here.
Unstigma shop has a HUGE array of spoonie related clothes and accessories from tops & jumpers to
jewelry and even Christmas decorations! Plus they have lots of festive and topical pieces which aren’t spoonie related too. I have got their ‘Strong but Tired’ sweatshirt which is 100% the most comfortable things I’ve ever owned! I think their stuff would make a great gift as it has some brilliant humor in a lot of their pieces which would make us spoonies giggle even on a bad day – and did i mention how comfortable it is!! You can use code: JENNI15 for 15% off! Shop here!
Spoonie survival kits is an incredible little fundraising social enterprise and although they are closing at the end of the year they are going out with a bang by donating 100% of the profits to the amazing charity Astriid who help people with long-term health conditions find meaningful work.They still have some sustainable self-care kits and insomnia spoonie survival kits left on their etsy so be sure to grab them before they’re gone.
As well as being an amazing community for chronic illness support spoonie village have a store full of bits a pieces to lift any spoonies mood from badges and stickers to art prints and gift boxes.
Mobility Aids:
If you are reading this and know anything about me you will know how much I love and adore my Neowalks walking stick family. I got my first one back in September 2019 and I currently have 4 in my collection. You might think a mobility aid is a rubbish gift but these are the perfect gift because they are useful AND beautiful! My Partner got me my light up DNA stick for my birthday and it was the best gift I got! If you can imagine a stick Lyndsay will somehow manage to make your stick dreams come true I have ones with bubbles, one that light ups and one with interchangeable sections so I can have different colours everyday. Plus she does a whole range of sparkly accessories for them including wrist straps and colour changing elements for light up sticks (which are definitely on my Christmas list!) Plus she now does polishing kits so if you or your loved one all ready has one of these fabulous sticks you can get them an added extra to keep them scratch free. The sticks are made to order and aren’t height adjustable so you will need to get a measurement so it’s best to ask or to measure a mobility aid they already have. For any fellow bendys (people with EDS or HSD) I highly recommend the question mark handle head to my youtube channel to find out more. There are also some great black friday deals to be had including 20% light up sticks using code fridaylight20 (27.11-4.12). To see more of my Neowalks collection head to my instagram and to see the huge range of neowalks colours and designs head here.
Silver ring splints are another type of beautiful mobility aid that can definitely be a gift. When I worked at a
cinema and took tickets I had lots of compliments from customers on my interesting and stylish rings and they had no idea about the support those rings were giving my finger joints. Zomile is the best in the biz and has detailed measuring guides to help find the perfect ring size. This does mean this gift probably can’t be a surprise but you can get jazzy with them and choose your metal and extra gem stones to add an element of surprise. Another beautiful but also practical gift! Last day to order for Christmas delivery is 10.12
Getting Cosy:
I don’t know a spoonie who doesn’t love a comfort item whether it’s blankets of fluffy socks or cosy pjs. My sister gets me a new set of zebra pjs pretty much every year without fail and I always love them. This year I am 100% in on the matching pj trend and managed to persuade my partner to get use some lovely ones form ASDA. He wouldn’t go as far as getting Christmas ones but I’m sure I’ll be able to change his mind ( fingers crossed). ASDA, Primark, Avon and Next are definitely my go to places when it comes to comfies whether it’s blankets or pjs.
Management tools:
I know lots of people like to give more fun gifts at Christmas but I will never turn away a practical present. These things can be expensive and can add up so I always love getting helpful, useful and practical things to help manage my gifts. Who wouldn’t want a gift that gives them more energy and reduces their pain even if it might be seen as boring. I got a shower stool for my 21st birthday and it was the best present I ever got. Not the plastic and metal that makes the chair but the gift of being able to shower independently.
I have lots of different guides and survival kits which include all the things I find useful to manage my EDS & POTS which you can find below and I’m updating them all the time. Most of the items are helpful for all sorts of pain and fatigue so will also help people with a wide range of conditions.
Vouchers:
You might think I’m talking about gift vouchers from shops and although these can make great gifts this kind of voucher will cost you very little but will make a huge difference to a spoonie. As someone with a chronic illness I often feel guilty about asking for help or not being able to do certain things but I often need help. I would love for a friend or family member (maybe not someone I live with) to give me some hand written vouchers as free passes so I don’t have to feel guilty. For example a booklet including things like ‘I’ll come over and do your washing up’ ‘a load of laundry on me’ ‘I will cook us a meal’ would mean so much and is much more useful to me than flowers or chocolates.Obviously covid restrictions may make this difficult at the moment but definitely one to keep in the back of your mind for future reference. Another thing I often struggle with is cooking when my pain and fatigue flares up so a voucher for just eat, deliveroo or uber eats (depending on your area) would be a great gift so I don’t have to feel bad for spending out on a takeaway when I don’t have the energy to cook.
Food:
Food can be really tricky for many people with chronic illnesses. Some might have allergies or intolerances and some might not be able to eat at all or only eat very small amounts at a time so something you might think of as a treat might be the absolute opposite. For the most part I’d rather stay away from food as I’ll tell people what I can have and they’ll always try and change it up slightly; they think picking a different flavour from the same brand might be more interesting but often it means I can’t have it at all. To avoid disappointment I’d rather buy my own treats.
If you are looking for a sweet treat for people with allergies and/intolerances I do highly reccomend NOMO chocolate. It’s the best vegan choclate I’ve ever tasted and, believe me, I’ve tried A LOT! It’s free from Gluten, egg, nuts and dairy but has wonderful flavours. Another brand I highly reccommend is Livia’s which has lots of different gluten free, vegan and refined sugar free treats. But if you are getting any food please double check the ingredients don’t just assume because it’s from the free from section that it will be free of everything your loved one is allergic to.
Charity:
Charities have all had a difficult year this year so if you really can’t think what to get some maybe consider donating to a favourite charity, perhaps one that supports people with your loved ones condition. Many charities also have only shops selling clothing and accessories which help the charity massively, I know POTS UK are even doing christmas decorations so definitely see what charities have to offer.
Aware causes also make awareness jewelery and clothing in every awareness colour possible and donate a percentage of the proceeds to your chosen charity.
Small Business Shoutout:
We all know 2020 has been a very difficult year for small businesses so I wanted to promote a few of my favorites to give you some extra ideas for the spoonies and non-spoonies in your life:
The Princess Emporium – Gift Vouchers for a visit from a princess for your little ones if you are local to Essex in the UK or video messages if you are outside of the area. Find them at www.instagram.com/theprincess_emporium
By Chloe Louise Art – Chloe does incredible artwork including houses, travel and pet portraits. I bought an image of my Partner & I’s first holiday to Cromer and it makes me smile everyday! Find her at www.instagram.com/by.chloe.louise.art
Imogen Rose Designs – Imogen make beautiful handmade jewelery from seaglass she finds on the beaches in Suffolk. I love my necklace from her it’s so beautiful, simple and elegant. Find her at www.instagram.com/imogenrosedesigns
Hummingbird Natural Beauty – Lovely handmade soaps, soy candles and scrunchies made from all natural ingredients in South Africa ( check ingredients before buying for a spoonie) Find them at www.instagram.com/humming.bird.naturalbeauty
Andyours- Amy makes the most beautiful handmade scrunchies you’ve ever seen in an incredible array of colours and fabrics but what is most special is that 25% of the proceeds from orders including Zebra scrunchies goes to EDS UK. Find her at www.instagram.com/andyours__
The Stagey Couple- If you have a friend who loves musical theatre these are the people for you with everything from badges to posters but be quick as their store closes for Christmas orders on 4/12. Find them at www.instagram.com/thestageycouple
I hope you have found that gift guide helpful and that you find the perfect gift for the spoonie in your life ( or the perfect gift for your wishlist). Have a wonderful gift buying season and let me know if there’s anything else I should include in the comments and what your perfect christmas gift would be.
Spoons & Love,
Jenni
World Mental Health Day
Something people may not know about me is that I’ve struggled with my mental health for a long time. I’ve been living with anxiety much longer than I’ve been living with the symptoms of my physical conditions; so why do I find it so easy to talk about my physical difficulties and discomfort but almost shameful to talk about my mental ones. Anxiety disorders affect 1 in 8 people each year, I’d argue it is now probably even more common in a COVID-19 world, whereas hEDS affects 1 in 5000 so I figured it was about time to address this imbalance and finally give my anxiety a nod.
I remember having my first anxiety attack it was in an exam that I was too young to really be taking, the worry built up and built up until I couldn’t focus on the questions, completely blanked because all I could think about was how I wasn’t good enough and how I was going to fail until all I could do was cry in the middle of the exam hall. Of course it ended up as a self for-filling prophecy and I ultimately did badly. For me my anxiety manifests as never being good enough. I always feel I should be doing better and doing more, which is a bit of a nightmare when you also have the energy limits of a chronic illness. Sometimes it’s little things like not wanting to phone people because I’m scared of what they might say or what I might say, I much prefer to email so at least I have a vague sense of control on my end. Other times it’s crying alone in bed because I fear those I love will leave me however much they try to reassure me. For a long time I had Trichotillomania where I would pull my eyebrows out with my fingers without even realizing often in the middle of class at college or uni due to the stress my anxiety was causing and I would have to hide it with makeup. Today, I feel like I’m a bad friend, a selfish girlfriend and that I’m not doing enough in any of my jobs including supporting my online community. I feel awful taking days off because I worry about missing something or being seen as lazy. This is where anxiety and depression can often meet, when believing that you will never be good enough begins to turn into ‘What’s the point?’
Then there’s the anxiety that often comes with having a chronic health condition. The fear of seeing new doctors who don’t understand or blatantly belittle you. The ones who tell you it’s all in your head and you’re being dramatic. The ones who can’t see the difference between mental and physical illnesses and the ones who can’t understand they are also linked. Like so many my POTS was misdiagnosed as anxiety, even though I knew this wasn’t the case (I knew the difference). What was worse was that I was then never given any care for my anxiety. I’d get frustrated and upset, angry at myself and others. This disbelief I had from the medical community for so many years means that seemingly confident me just shuts down and cries whenever a doctor says something I don’t agree with and I’m unable to advocate for myself the way I should. Psychology is often offered as part of pain management programmes and this can scare many people off because they instant believe those Drs think their pain is in their head but actually they are trying to undo the harm and mental strain caused by not only the pain itself and how that can make you feel but also the medical trauma left behind.
These days I’ve had my fair share of therapy. It hasn’t cured me and I don’t think it ever will. Some I absolutely hated and dreaded their appointments often avoiding them. Others have been great and although I found some of their practices difficult I was able to talk openly and freely about how I was feeling and in turn was able to talk to friends and my support system who I didn’t want to bother before because I felt they didn’t need my problems on top of all of theirs.
Obviously this is just my experience and there have also been dark times that I don’t want to relive out on the internet but I hope in sharing a snippet of my story I can help to normalize anxiety and other mental health struggles and break down the stigma so we don’t feel so afraid to talk about it.
I also have a few final reminder to those who have been lucky enough not to struggle themselves. Firstly, I am the happiest I’ve ever been with amazing friends, a wonderful boyfriend and a stable job and home but I still struggle with anxiety: happiness does not necessarily equal wellness. Finally I want to share my favourite quote which reminds everyone not to judge a book by it’s cover: Every one is fighting a battle you know nothing about, be kind, always.
Don’t forget to wear yellow today to spread awareness of World Mental Health Day
Spoons & Love
September
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?
Relationships & Chronic Illness
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?
Unfortunately not.
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,
Jenni x
My POTS Survival Kit: Dysautonomia Awareness Month
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! Dysautonomia awareness month seemed like the perfect time. A lot of these tips relate to keeping cool as heat intolerance is one of the things I struggle with most but also means it will help anyone who struggles in the heat.
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. You can watch me it explain it in full here.
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! The 2020 series is coming soon you will be able to watch it here.
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.
Keeping Cool!
1. Wearable Fan
One of the worst symptoms of my POTS & EDS has always been headaches. 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. 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! Now the weather is cooler I also use it like a normal hot water bottle to help with my bloating and other gastro symptoms which are exacerbated by my POTS.
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!
Other Top POTS hacks!
This is always the first thing I recommend to people who’ve just been diagnosed with POTS. It changed my life. 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. 
A blood pressure monitor is a must-have for me, especially early in my diagnosis. It helped me attribute symptoms to what was going on in my body and let me know what was normal for me and what wasn’t. I think they are also a big help at the moment where drs appointments are mostly over the phone as it means you can still take readings to give to your drs without having to be there in person.
Personally I’ve never been a huge fan of compression socks they always fell down and/or irritated my knees too much (maybe thats an EDS thing) but I do know they work for lots of people. They work by helping the circulation in your legs so you don’t end up with horrible blood pooling and boosting your blood pressure. I’ve always found compression tights or leggings more comfortable.
If you are a low blood pressure POTSie like me you will probably have been told to increase your salt intake. This is definitely something that should be recommended by a dr before you begin though! Salt helps the body retain more of the extra fluid intake that we also need. 3-10g is what is usually recommended. Luckily I love salt and also find my body can taste salt less when I’m feeling worse; its like it knows I need more of it! I love salt popcorn, gluten free pretzels, olives and more. I’ve also been trying out flavoured salts recently and am obsessed with oak smoked salt! Some people struggle to eat enough salt so, in this case, sodium tablets may be prescribed.
6. Tablet
POTS often means you are flat out in bed and sometimes this means keeping entertained and distracted can be difficult, this is where my kindle is a lifesaver. It’s got a big enough screen so I can watch my favourite shows on netflix or amazon prime but also has my music, books and more at my fingertips so I don’t have to move and make my symptoms worse when I’m in a flare.
7. Pedals
Keeping up some movement is really important with POTS however difficult it is. Before I knew what my POTS was I was so unwell and pretty much bed bound by my symptoms this lead to my body deconditioning and exacerbated my EDS symptoms and made it much harder to get moving again once my POTS was more controlled with medication. The first this my physio recommended to me was a recumbent exercise bike which was really great but I struggled to use. When I’m doing exercise I either like to be outdoors, with other people or also doing something else so I really lacked motivation. But a set of pedals meant they were mobile so I could exercise whilst watching TV or chatting to friends. I’ve since tried a outdoor recumbent bike and absolutely loved it. You can see me exploring with it in this vlog.
8. 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.
9. 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. They are avaliable in pastilles or chewy, toffee-like sweets and they taste really great.
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. Find more tips in
Spoons & Love to you all and happy dysautonomia awareness month!
Friday Thoughts: Invisible Disabilities Week
‘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.
