If you’ve been over to my Instagram page this week you’ll have seen I’ve been fighting off a major flare so it’s time for a double Chronic Illness Weekly update. You’ll see me battling insomnia and Hospital appoints. Then I head on a HUGE day out in London visiting the London Eye, Madame Tussauds and seeing Les Mis in Concert and even meeting some of the stars. I then hit a major flare which leaves me in bed for nearly a week.
If I’d have had to write my final university project two years ago, when I was part of the class of 2017, I couldn’t tell you what I’d have written about, since going back to university I always knew that I wanted my project to focus on chronic illness, although it may seem like an obvious choice. Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and Chronic Fatigue completely changed the course of my degree and my life. But wanting to use my artistic skills to create a piece based on this doesn’t just come from the fact I have these conditions, It comes from the passion to help others and spread awareness so other people don’t have to face the difficulties in diagnosis, treatment, management and social interaction that I and so many others have faced.
The aims of my project revolve around my desire to establish a deeper understanding of the complexities of living with a connective tissue disorder such as EDS which affects multiple systems in the body. I wrote several different versions of plays that I hoped would give a greater understanding of EDS, but although they were well received by people with the condition and those who know me and my journey well, they were not coming across with those with less understanding and my main goal with this project was to raise awareness within a wider audience. And in playing real clips of interviews I’d done I got the desired response from both audiences and this is when I decided that a documentary style format was going to be more appropriate.
I worked very hard on this piece over many weeks. I am so proud of it and the feedback it’s received. I’m very pleased to say that it achieved a first at university. But this project was never about the final grade for me, it was about raising awareness and giving people an insight into all that you can’t see about someone living with Ehlers Danlos Syndrome. Please share it far and wide.
I’m very proud to present my radio docudrama: All That You Can’t See
All That You Can’t See
Living with Ehlers Danlos Syndrome
A Radio DocuDrama Produced by Jenni Pettican
Presented by: Tom Rowntree, Verity Hodgson-Bajoria & Shem Jacobs
Dr Edvard Ehlers Played by: Markus Dalum Tilds
Dr Henri Alexandre Danlos Played by: Jacob Simmons
Huge Thank you to my wonderful dazzle of Zebras for sharing their stories:
Kilynn, Georgia, Sydney, Rachel, Shannon, Stacey, Catie, Brittany,
Rachael, Amy, Poppy, Kim, Laura, Gemma, Cosima,
Martin and Carol.
Please donate to my All That You Can’t See Fundraiser so people can get the awareness, understanding and treatment they deserve.
To Find out more about Ehlers Danlos Syndrome & Hypermobility Spectrum Disorder please visit:
To find out more about Jenni and her fellow EDSers please visit:
If you’d like to support my content please consider taking a free trial of Audible Audiobooks.
Recently I’ve had a lot of questions from friends, colleagues and spoonie’s alike about my mobility aids. From how I started using them and accepting them as part of my life to why I do, or don’t, need them from one day to the next. I hope this post gives you a little insight into what it’s like to have a variable chronic illness and the love/hate relationship I’ve had with aids over the years.
Firstly, I want to talk about how scary it can be to start using a mobility aid, especially when you’re young. I’ve always found that there’s a preconception that aids like walkers and walking sticks are just for old people. So that can be really daunting. I went to an event when I first got my walker and had to leave it with loads of identical ones I saw countless old ladies park in the same spot. That’s the main reason I decide to decorate my mobility aids. When people comment on my sparkly walking stick I always say, ‘Well, if you’ve got to have it, it may as well be pretty’. My first piece of advice to anyone worried about getting a mobility aid and being too scared to use it, because they think they’ll be stared at, is to make it your own. I went through a stage when I thought I shouldn’t be using my walker because I ‘didn’t need to’ despite the fact it’s always helped me so much. So, having already covered it in Zebra tape, I covered the seat with stickers of all of my favourite things so every time I was using it I felt happy and this managed to fight off the cruel voices in my head that were telling me I was ‘giving up’ by using when actually I was making a sensible decision to help myself. Loving your mobility aid and knowing how much it helps you and the reasons you use it will give you so much confidence that it really won’t matter if people are looking.
Now a lot of people get confused when they see me in one place and my mobility aid in the other. Just like when an ambulatory wheelchair user gets out of their chair and everyone either shouts, ‘It’s a miracle’ or ‘You’re a fake’. Neither of these statements are true. I’m going to explain some of the reasons that I use different aids for different days and why sometimes you’ll see me with no aid at all.
Wilhelmina the Walker
I bought Wilhelmina off an old man on facebook for £10 because I didn’t want to pay out loads for a walker (becuase they’re expensive) and find that I didn’t like it. Of course, It was amazingly helpful and, despite having no brakes, she has done me very well ever since. I even tried a posher walker that was left to me but just didn’t get on with it half as well. A Walker is useful for so many things. Not only does it support me walking on days I’m really struggling with my pain in my legs or knee subluxtions but it also helps me carry things from general handbags to suitcases to laundry to big speakers and cables. This means the pressure is off my shoulders. Mine also has an in built bag so I can take my heavy water bottle around with me with ease. It also means that I have a seat with me wherever I go which can help with my POTS symptoms, especially in queues, and gives my legs a rest. I mostly use it for big days out such as theme parks or the zoo, but I also used it around uni a lot for general tasks- mainly carrying my books, laptop and laundry. It can be difficult to use when a place isn’t very accessible and/or when I’m having trouble with my shoulders as I can’t take the weight on my arms.
Cecily the Stick
My lilac mermaid sparkly stick was a steal from amazon warehouse after I lost my old faithful stick ‘Stickie’ who then reappeared a few months later and, if I can find him, he will be getting a crafty upgrade ahead of the National Diversity Awards in September. My stick is my general go-to mobility aid. Although it doesn’t give as much support as my walker and isn’t a seat, however hard I try to prop myself up with it, it’s so much easier to get around with. It can change height easily if I get brave enough for heels and can fold up in a bag if necessary. I don’t realise how much my stick actually helps me. I managed to forget it today, which is a first for me, and I got so exhausted so quickly from walking around for a little while without it. I also never know when a flare is going to hit so even if I’m feeling brave I always keep her in my bag just in case. Also tricky to use when I have shoulder issues but at least it only uses one arm, unlike my walker.
Sometimes things get really bad. And I’m a determined little bugger, so want to make it to class on days where I can’t walk, even when I probably should stay in bed. But, on many occasions, I have tried (and mostly failed, because of my dodgy shoulders) to wheel myself around or make my flatmates get me a mobility scooter from the disability office at uni so I could get out of bed. At one stage a wheelchair was the best pacing option for me. And I will still often use one going through the airport so I’m not too tired or in too much pain before a flight, which I find difficult. I hated having someone push me and it often hurt my back and hips more than walking so that’s why a walker was the best long term solution for me personally, but when my POTS was bad, especially in the heat, and after my surgeries, a wheelchair was the only good option. I realise that I am very lucky to, most of the time, have the choice.
‘No aid? You must be feeling better’
This is the phrase I hate the most. I can understand why people say this, it is a fair assumption. But it is so wrong to think you can tell how someone is feeling by which mobility aid they’re using. The biggest reason that I will not use a mobility aid is because I’ve subluxated or dislocated a shoulder. This means my shoulder is in pain and I can’t put my weight on an aid so I can’t use one, but then my legs and my body are in pain and tired because they don’t have the extra support of an aid. There are other times where a mobility aid just doesn’t work. For example, at the gym. I used to be so scared of going to the gym, despite all the good it was doing me, because I was worried people would think oh so she can go to the gym but now she can’t do xyz. But I knew the gym was making me stronger. And I guarantee my legs will be shaking after a session and I’ll be needing my stick. Sometimes, I think it will be easier to do small tasks without as I need both hands and occasionally I just get cocky and regret it after. For example, at graduation, I decided to take my stage walk unaided not realising how far it was or how many stairs there were so got back to my chair tired and out of breath having to take it slow and hold onto railings which could have been avoided. Plus a lot of the time, I have my stick, but I just put it away for the photo, which I’m trying to do less as it’s nothing something I feel I have to hide. Also, there are so many invisible aids; all sorts of supports and braces and tape that’s holding my body together that you can’t see.
I hope that this has given you some insight into the many reason why people might use different aids on different days. And if you have been thinking that a mobility aid might be helpful I hope this has given you some confidence and advice. Mobility aids can give someone so much freedom, they are not giving up by using one. The long and short of it is I can do things without my aids, but I can do so much more with them.
Spoons & Love.
If you’d like to support my blog please considering taking a free trial of Audible audiobooks
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!
Nothing is so painful to the human mind as a great and sudden change.
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.
Be the change that you wish to see in the world
If you’d like to support my blog please click here for a 30 day free trial of Audible Audiobooks
Progress Not Perfection Tank Top from JustStrong.com Use Code JENNIPETT10 for 10% off.
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:
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.
Please help support my blog by taking a free trial of audible audiobooks here.
Sorry, It’s been a while since I last stretched my blogging muscles but I wanted to tell you all about this new posture shirt which I was kindly gifted by Active Posture for the Purposes of Review.
Their clothing is the only posture correcting clothing which is registered by the FDA and claims to reduce neck, back and shoulder pain, stimulate muscles and improve blood flow. It works on similar technology to KT tape which I love but it very difficult to put on yourself and often causes irritation for those in the EDS community so I was very excited to try it.
I had a slight sizing issue to start with. You are sized based on your weight and chest size but since I’ve always been a lot heavier than my frame suggests it wasn’t quite right. I ordered a medium and it felt too roomy. It wasn’t sitting flat and after wearing it for an hour or so (the time it takes to test it out) I wasn’t feeling anything. So I returned it and got a small which was a very simple process.
I ordered the zipper version. This is recommended for anyone with shoulder injuries as it is easier to put on and I think for anyone with EDS that is prone to shoulder dislocations or subluxations it’s the only option. I was a little gutted about the colour range for the zipper option versus the normal and, for reasons I’ll talk about later, I would choose the standard option if my shoulders had allowed me the choice.
I put it to the test at the gym, whilst away on an activity weekend for my boyfriend’s birthday and whilst at home. You can watch my video review to see the shirt in action.
I like to get bad things out the way so I’ll start with the not so positive parts:
Overall, I’m really surprised and impressed with the shirt and how it’s performing and I’m sure I’ll keep you posted in my vlogs with how it might be improving my posture long term. They also have a range of bras and leggings which I’d definitely be interested in trying in the future.
Please also check out my video review for some more info and to see the shirt in action and feel free to ask any questions in the comments.
Active posture have also been kind enough to give all of you 10% off using discount code Jenni10 if you’d like to give the shirt or any of their other products a try for yourself.
Head over to my Youtube Channel to catch up on my weekly vlogs including my 3 week pain management rehabilitation programme under RNOH at Stanmore. I will be putting together a video about everything I learned there very soon so make sure you’re subscribed so you get the updates first.
Also, if you’ve ever wondered what a gluten, lactose and refined sugar intolerant vegetarian actually eats check out my new post over on Chronic Illness Bloggers here!
Sorry I’ve been so quiet on here everyone. In the new year I launched a new vlog series for 2018 called Chronic Illness Weekly following me and my chronic illnesses, EDS & POTS. Make sure to head to my youtube channel to check out all the other videos you’ve been missing.