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
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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.
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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.
Happy December Everyone Sorry I’ve been super quiet on here but a lot has been going on! If you’ve missed it you can see what I’ve been getting up to every day throughout December over on my Youtube channel where this year I’ve got involved in the age old Youtube tradition of Vlogmas! So if you’d like to see me join in on my first Livewire1350 Charity Christmas Single, Have Essay Deadlines, Lose My Walking Stick and Pimp My Walker Christmas Style you better get catching up 😛
Merry Christmas Everyone! Hope you have a happy & restful (symptom free) holidays!
Dysautonomia Awareness Month may be over but Dysautonomia is something people have to live with every day of the year. I made a video last month with 4 other lovely ladies who were all brave enough to share their story about Living with POTS. Here’s the video to give you an insight into what it’s like to live with dysautonomia.
I also haven’t kept you up to date with my vlogs since leaving uni so here you can find all the videos from the last month or so. It includes my vlog of the HMSA & EDS UK conference and what I learned from it and a video calling out for Questions for those who have been asking me to do a University with Chronic Illness video.
Firstly, an apology that I’ve been so incredibly quiet on here lately. I’ve been so focused on getting some great videos out there for you guys that I have neglected my blog a little. But as I’ve said it I often so much easier for me to talk than it is to type. So, if you’d like to catch up on whats been going on in my life for the past few months please head over to my Youtube channel.
Anyway, what I came here to say was that it has been a year since I finally stopped pretending that I was okay and told you all about my invisible journey with chronic illness. I’d been having major problems with pain, palpitations and headaches but doctors were constantly dismissing my problems. I knew something was wrong and had to leave my beloved UEA because I could no longer cope. Having no idea what was wrong, I set out on a journey to diagnosis. I was very lucky and this was a quicker process than it is for most; I found the right doctor who knew exactly what was going on. In February & March 2016 I was diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome & a suspected CSF leak. I had to ‘come out’ about my conditions last year as I was 2 weeks away from my first surgery and I wasn’t going to be able to hide my issues quite as easily as I had done with a hole in my head. I was so scared to tell people, I was so worried about what people might say, I didn’t want people to think I was lazy, making excuses or being a drama queen. But getting it out there in the open was so freeing and I realised by continuing to share my story I could spread awareness for these little known conditions and help others who were struggling both practically and to help them feel less alone.
So, since I first posted about my invisible journey , a crazy amount has happened, I can’t believe I’ve fitted it all into one year. So here’s your update. I know many of you will have seen these events unfold as you have followed my story as I’ve tried to become an advocate for my various conditions but I also have many new friends who have been absolutely amazing in accepting me, disability and all, but who now know me well enough to start asking more questions. So here are some answers.
My CSF Leak was fixed!!!
I thought I’d start with the successes. From November 2014 I had regular headaches, I’d always had headaches but they were becoming most days until by mid 2015 they were a daily struggle. I was put on every medication going but nothing was helping. In January 2016, after being kicked from pillar to post and even having a doctor MRI the wrong part of me, I found the right neurologist and he suspected a CSF leak. Cerebrospinal fluid leaks are rare and are mainly caused when a previous surgical procedure ruptures the dura which is where your brain fluid is held suspending & protecting your brain. Mine was spontaneous and caused because my EDS meant my dura was so vulnerable that it broke. We do not know when or how but I am very scared of it reoccurring. The headaches caused by a CSF leak are constant. I longed for a day when I would have no pain in my head. CSF leak headaches are often referred to as ‘suicide headaches’, there is a good reason for this and I never want to experience that level of pain again. In November 2016, 3 days after my 21st birthday I had ICP monitoring, where a bolt is put in your head to measure the pressure. After 4 days in hospital in London it was confirmed that my pressure was low and that I did indeed have a leak. My mum watched in horror as they crudely pulled this bolt out of my head and stitched me up, it was nothing in comparison to the pain of my bad headaches. I was then told that they thought they could fix it. When you have a chronic illness it feels incredible when a doctor says they might actually be able to fix something. I had to have an epidural blood patch, I ended up having 3. A blood patch is a procedure where they take blood out of your arm and inject up to 40ml into the epidural space in your back. As sedation doesn’t work too well on me, I was fully aware throughout the procedures and could feel the pain and the strange warm fullness as the procedure was done. The first, in January of this year was not too fun. My spine was bruised and I ended up with awful back pain. The procedure was repeated in February and March 2017. I felt a little better each time but knew it hadn’t worked. It took a good month after my last patch to really feel the benefits and despite still having chronic headache and the occasional migraine, I have been completely free of the ‘suicide headaches’ since, and even have some days where my head is pain free. I am so thankful to the 2 doctors who gave me some of my life back. I am so lucky that this worked, I can, and do, take a ‘normal’ headache any day of the week.
I have Postural Orthostatic Tachycardia Syndrome.
POTS is a form of dysautonomia which affects all the automatic functions in my body I explain it so much better in my videos What is POTS? & Living with POTS. My POTS story has remained fairly unchanged. My medications mean I can get up and move around without too much issue but I still find it extremely difficult to do any kind of exercise, including walking, or stand up for long periods. This is one of the main reasons I use my walker, so I can sit down at any point and so I can carry things round. My main problems are breathlessness, dizziness and fatigue. I can also get pre-syncope, mainly if I eat too bigger meal. To manage my POTS I’m on daily medication. I also don’t have refined sugar, alcohol or caffeine to keep things under control. I am currently in a battle with the hospital who want me to come down on my medication, despite having not seen me since July 2016 and me still really struggling with my symptoms. I am seeing them again in February and hoping to come to a reasonable agreement.
I have Ehlers Danlos Syndrome
This is the big one which causes all the others! I also have a handy video here which tells you what EDS is here. EDS is the cause of my leak, POTS and way more. It is multisystemic and affects everything from swallowing to bladder. It causes GI issues which is why I can’t eat certain foods. The main problem for me right now is the constant chronic pain, plus the acute pain from a joint not sitting in the right place. I rely on my walker when my hips and knees need support, sometimes its so bad I need my wheelchair, other days my shoulders are worse than my legs so can’t use my walker or stick easily. I can move around indoors unaided but have to sit down a lot because of my pain &/or my POTS. I recently saw the doctor who diagnosed me nearly 2 years ago and she has referred me for a 3 week rehab programme which I am looking forward to hopefully doing over Easter or in the summer. I have tried everything to ease my pain. In the beginning I was on every medication possible, I currently don’t take any regular pain medication purely because they don’t do anything for me and many of them mess up my POTS medication so badly, that it’s not worth it. I practice mindfulness, do my physio exercises and try and pace my activities to try and help but I’m in a constant fight with my body with can’t hold itself together; I have good days and bad days. My body is weaker than ever after my surgeries for my leak and I’m trying everything to get my strength back but it’s not coming easily. I’m hoping the rehab programme will make a difference but I try and do the best I can to live as well as possible despite this. Recently I attended the EDS UK & HMSA conference which was really insightful into the research that needs to be done. There is hope for us zebras in the future.
So much has changed since this time last year. I am so grateful my Mum & Mike for waiting on me hand and foot during my season of operations and who have got me to where I am. I went back to work at the cinema in between every operation. I continued and increased my dog walking and stayed on at guides. I became an Avon representative and am now a sales leader with team of my own. I started my successful chronic illness vlog on YouTube where I hope I help others and have gained so many friends from. I am now back at uni straight into the second year of my drama degree (where I left off) and have been for over a month (though it seems like so much longer!). I’ve learnt so much about my conditions and how I can manage them a lot better. Don’t get me wrong it’s a huge struggle trying to do my degree as well as looking after myself. Just cooking, washing up, showering and laundry are very difficult to keep on top of let alone getting to my classes and keeping up with the work. But I am absolutely loving it and I’m so grateful to be back. I’m so proud of how far I’ve come and I hope another year will mean further improvements. It’ so hard to not be able to do things you used to enjoy but I’m determined to make the best of it and keep doing the best I can and ask for as much help as possible.
In last year’s post there was a lot of worry. I did lose some friends but I’ve made so many new ones across the world. I was worried about social situations before but it was because I was hiding, now noone thinks twice if they see me lying in the corner of the room mid lecture 😛 I’ve become so much closer to my mum and I don’t tell her enough how much I appreciate her and everything she does for me. Sometimes I still worry doctors won’t understand, but I can now give them the knowledge and tell them what I need, I’m not scared of being called a liar anymore after all I’ve been through. My financial situation improved when I found jobs which I can do and which I enjoy and I managed to get myself into an okay place. I got back to uni, I DID IT! I still worry about the future, I have no idea what life will throw my way or how I’ll be but, firstly, I’ve got so much better at living in the present and realising how far I’ve come, secondly, If I can get through the last few years I can do pretty much anything and finally, I know I can do pretty much whatever I put my mind to, I just might have to do it a little differently!
This is how I ended last years post and it still describes this perfectly:
‘I am told that I am brave. I’m no braver than the next person everyone has their battles, everyone has their own little victories. I’m not doing this for sympathy or admiration. This isn’t my sob story VT before I emerge in front of the judges as a star. This is my life everyday: the pain, the symptoms, the treatments, the guilt, the fear but most importantly the hope that something better will come…eventually. I know I can’t be fixed but I know I’m going to die trying to get better. Thank you for reading and hopefully understanding a little better.
‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.’’
With less than a week until I go back to uni, and as of Thursday I was officially deemed fit to return, it’s been a busy week but at least it has finally been a productive one. Some great highlights included going to friendsfest with my cousin and shopping for Becky’s birthday. Next week is obviously going to be exciting but very busy, stressful and draining too but really looking forward to getting back in to the swing of things. Saying my goodbyes and see you laters so far has already been pretty scary and I know there’s lots more to come but I want to thank everyone who has stuck by me these last two years whilst I was really unwell and to all those who have supported me and believed in me enough to get me back to uni. Looking forward to starting my biggest adventure with EDS so far. I was also on TV this week I was in episode 22 & 23 of the new Noel Edmonds gameshow Cheap Cheap Cheap which was filmed back in January just ten days after my first blood patch operation so I’m definitely not quite myself in the first episode (last 5 mins) but am much more relaxed in the second (first 10mins) I’ll link the episodes below the video if you fancy a giggle. Thanks for watching and see you next week!