Chronically Jenni
Spreading Awareness & Helping Others with EDS & POTS
Pain Awareness Month: A Letter to Pain
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:
Dear Pain,
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.
Forever yours,
Jenni
Friday Thoughts: The National Diversity Awards
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.
My EDS Survival Kit (Part 1)
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.
2. My Knee Pillow
3. My New TMJ Mouth Guard
4. My Stickman Communications Cards
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:
- My active posture shirt – I was kindly gifted this by the company for the purposes of review and it’s been helping so much with my shoulder subluxations – you can read the whole review and get a discount code here.
- My Thumb supports – although tape works well at keeping my thumb in place ( I highly recommend this video if you want to tape your thumbs) it’s hard to keep on for long as you wash your hands so often. So I invested in these thumb supports when I went back to uni and they are so helpful and much less restrictive than some other braces. I recently recommended them to my friend ‘Georgina’s Journey’ and she’s loving them too.
- My Knee Supports – I’ve tried so many different types of knee supports over the years and have found this type to be the best and most comfortable. They sit just under your knee cap which can help to stop patella subluxations. They also don’t move or get sweaty or make your knee cap more uncomfortable like other supports I’ve tried.
- Ring Splits – I cannot leave out the lovely ring splits by Zomile. If you have troublesome finger joints get yourself the only stylish braces out there. People always compliment me on my stylish ring and are so surprised when I tell them it’s a brace. A full set would be pretty expensive so I chose to get one for my right index finger to help when I’m writing.
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.
- Biofreeze – This is my absolute go-to for any sore joints and muscles. It really helps to soothe any tightness. I bought the Deep Freeze version the other week out of desperation but it didn’t touch the sides of my pain the way Biofreeze does. I always choose to buy the roll-on as it’s much easier to apply, especially when you are applying it to yourself, and it doesn’t get all over your hands. I will always have one of these in my bag when I’m out for a long day.
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Gel Packs –
These are gel packs not only can you use them hot or cold depending on your need and preference it comes with a fabric pouch and strap which means you can use it, hands-free on the vast majority of joints.
These are gel packs not only can you use them hot or cold depending on your need and preference it comes with a fabric pouch and strap which means you can use it, hands-free on the vast majority of joints.7. Assistive Technology
Technology is taking over and there’s so much more it can do to help us if we let it 😛
- Amazon Echo Dot – well any of amazon’s Echo devices (but I always try to go for the cheapest possible option). An Echo Dot is great because you can tell it to do so much without having to move and if you have smart bulbs and plugs too you can control so much from the comfort of your bed or chair on bad days. This is also helpful for lots of people as I know some good friends used it a lot when they had their newborn and needed both hands. (If you click the link they have an offer at the moment where you get 2 smart bulbs thrown in for the same price as the dot on it’s own)
Kindle Fire – I’ve been using my Nanna’s old one of these for years and it was on it’s way out so after graduation I treated myself to a new one. I’ve really got back into reading recently and I’m finding it so much easier to hold than a regular book. I also love the new feature where you can put it on a bedtime setting so you can use it before bed without the blue light affecting your ability to get to sleep.
Dragon – I honestly couldn’t have got through uni without Dragon. It’s a great piece of text to speech software which is more accurate than anything else I’ve used. It meant I could talk all my essays instead of writing them meaning not only did I use less energy and save my hands, but I could also lie in bed with my laptop on my desk and still be working. If you have to write in any capacity it’s definitely worth it, I should use it more for blogging really! It is expensive to buy on your own but if you are a student you can get it through Disabled Student Allowance and if you would help you with your job you should be able to get it through Access to Work.
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,
Jenni
Chronic Illness Weekly: Week’s 85 & 86
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.
[youtube https://www.youtube.com/watch?v=_g3DrpLNk-w]
[youtube https://www.youtube.com/watch?v=m_LMvrWsKcE]
All That You Can’t See: Living with Ehlers Danlos Syndrome
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
[youtube https://www.youtube.com/watch?v=ENuOE-C9WJs]
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:
Ehlers-danlos.org and Ehlers-Danlos.com
To find out more about Jenni and her fellow EDSers please visit:
Youtube.com/c/ChronicallyJenni
If you’d like to support my content please consider taking a free trial of Audible Audiobooks.
Friday Thoughts: Different Aids for Different Days
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.
Borrowed wheels
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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Chronic Illness Weekly: Back to the Gym, Hospital Appointments & Thorpe Park
Very Busy Week Last Week! Went back to the gym, had 2 hospital appointments (Neurology at Queens & my year follow up from rehab at RNOH) and went on a date day to Thorpe Park and discovered their Ride Access Pass. I also went shopping with my beautiful friend Eva (check out her amazing fashion blog here) and did a mini haul for you even though I definitely wasn’t meant to be buying anything!
[youtube https://www.youtube.com/watch?v=XZre-Xi3lmQ]
Friday Thoughts: Maintaining Change
Nothing is so painful to the human mind as a great and sudden change.
-Mary Shelley
Change usually ends up being a positive thing, after all, I always say that everything happens for a reason. But as I started talking about the last 12 months of my life in my year follow up appointment from the RNOH pain management rehab programme, the pain of the great and sudden change of the last few months hit me like a double-decker bus.
I don’t know why this wave of emotion was so unexpected. If you’re anything like me, change will mostly fill you with fear. Some of this fear is reasonable, but mostly it’s proven to be totally pointless. For example, I was terrified to go back to university after having been away from it for almost 2 years, living & working with new people who had no idea about my conditions. Of course, my pal anxiety was proven completely wrong and I’ve had 2 of the best years of my life with the very people who terrified me before I’d even met them. So why now, as I have to reflect on some of the more difficult stuff from the last year, does it bring back the same dread about what’s to come?
Plus this isn’t even the first time this week I’ve broken down in tears to a health professional I’ve never met before. On Wednesday, I went to a Neurology Clinic only to have the Occupational Therapist tell me how high my pain and anxiety levels were from the forms they’d given me to fill in. She was lovely and has booked me in to see her in a few months. I wasn’t worried about that, thinking I might get some problem-solving help from today’s appointment, but that wasn’t the case, and now I wish these appointments were sooner.
The realisation that I’m not going back to Norwich has hit me hard. I’d finally built up a beautiful safe, supportive environment which I called home and suddenly it’s all gone. With what’s felt like barely anytime to process that strange sense of loss. Of course, my friends are still amazing, but it’s so much harder when they are dotted around the country and the world. So I think that being discharged from rehab today was another blow to my ongoing support, even if the door isn’t firmly closed.
So now I’m on my own to find the changes I need for my health and for myself. I have to make change, within the change. A messy situation. Making change is fairly easy, especially when I was in rehab. For 3 weeks, away from work, in a nice hotel with maids and cooks and a team of health professionals, it’s quite easy to focus on all the things you can do to manage your pain. This is not to say that the programme was easy; I had my fair share of flares but at least you didn’t have to think about writing an essay or cooking dinner afterward. So the first 3 steps of change are achieved pretty quickly: Contemplation (i.e ‘I think I’ll take up running’), Preparation (i.e Planning on a day and time to run) and Action (going for a run).
It’s maintaining change (which feels like an oxymoron to me) that’s difficult. I’ve had so many lapses in the positive changes I made; mostly through stress and the competing demands of life in the ‘real world’. I kept my gym and eating goals up for a good month or so then it was back to uni and a very stressful first semester of third year and, BAM, it was suddenly February before I managed to get back on the wagon. Chest infections, flare-ups and Easter break and, before I knew it, another 2 months out of the gym. 6 more weeks of my amazing class in Norwich and then it’s another 2 months which have disappeared in a blur and I’m back home, having barely unpacked, with a much smaller support system, starting from scratch again. I spent last night in screaming agony as the muscles in my legs are confused by a few supported squats which my old trainer would be so disappointed in. But this is where we have to start again. You can’t go in expecting to be right back where you were, you have to go back to baselines and not get frustrated at what we perceive as backwards steps. Maintaining change takes motivation, whether that’s through goals or rewards or the support from/ accountability to friends, family and followers. Having set goals on my new gym app and getting my boyfriend to take me to the gym on the way to work means I can’t get away with staying in bed. It’s not easy to make change but we’ve done it before, so we know that, even if it takes times, we can do it again.
And having finally calmed down after the neverending waterfall of tears (mostly because I’d called my mum), I realised that although I might not have achieved the goals I’d set 3 weeks before a major crisis point in my degree, I have made progress. And I strive for progress, not perfection. I’ve recognised things earlier and taken a back seat when I can. I’m pacing better, exercising much more and trying to communicate better, educate, advocate and be assertive. So, the moral of my story is, It’s okay to feel overwhelmed and scared when things are changing around you, but you’ve also probably made way more positive change than you think.
Onwards <3
Be the change that you wish to see in the world
-Mahatma Gandhi
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Chronic Illness Weekly: New Car & Back to Work
Here’s my latest vlog all about getting my new automatic car and heading back to work and a form of normality after a few crazy months.
[youtube https://www.youtube.com/watch?v=LhgIgQzaiBQ]
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Gluten Free, Vegan Strawberry & Banana Pancakes
So, It’s been a while! But now I’m home from uni I want to go back to the roots of this blog and post more regularly. I will still be uploading weekly vlogs on my Youtube channel but I want to make more videos, more Instagram content and try and put something out on the blog every week whether that’s a recipe or a simple Friday thoughts. I’ve got a couple of ideas in the pipeline but I’d love to know what kind of content you’d like to see going forward be it about Chronic Illness, Gluten Free Vegan Food or life in general please let me know in the comments.
Anyway, this is what you came here for:
Gluten Free, Vegan, Refined Sugar Free Strawberry & Banana Pancakes
Makes 15 American style pancakes
Allergens: Cashew Nuts, Strawberry
You will need:
- 1 bottle of Strawberry Cheesecake Cashew Mylk Plus (Order here and use code JENNIBAE for 20% off or you can order from amazon)
- 200g of Gluten Free Flour – I used Schar Gluten Free Mix It Flour but you can also use Chickpea Flour for a protein punch.
- 1 ripe banana
- 1 teaspoon bicarbonate of soda
- cooking oil of your choice
- In a large mixing bowl or jug, mash your banana.
- Sift in the flour and mix.
- Slowly add the mylk to your mixture.
- Mix well with a whisk.
- Add the bicarbonate of soda and whisk in.
- Heat some oil in a pan on a medium to high heat.
- Ladle the batter into the pan (1 small ladle per pancake)
- Wait until you see air bubbles then flip the pancake.
- Repeat steps 7 & 8 until all the batter is used adding small amounts of oil as necessary.
- Cover in your favourite toppings (strawberries and maple syrup work well) and enjoy!
If you prefer crepe style pancakes use 50g less flour and no bicarbonate of soda.
Using a ladle isn’t necessary but it will help you easily create the same size pancakes for the perfect stack.
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