Chronically Jenni
Spreading Awareness & Helping Others with EDS & POTS
Simple Stitch Shortbread
I’ve been thinking about doing this recipe for a while as I used to be obsessed with biscuits and shortbread was my absolute favourite. I used to buy some Tesco everyday value shortbread and munch my way through the whole pack! When I was up early on Sunday morning for no apparent reason I decided I need to give in to my cravings. Plus, Mike had treated me to some Lilo & Stitch Cookie cutters that I’ve been dying to use since he got them in the January sales! So here is my super simple vegan, gluten free and refined sugar free shortbread recipe and of course what can be better than biscuits that are shaped like Stitch! My Mum said they are the best biscuits I’ve made!
Makes: 16 (Will make 20 in traditional rectangles)
Takes: 35 mins
Allergens: Almonds. You could just swap the almonds for more flour.
Ingredients:
- 125g Coconut Oil (Make sure its slightly softened)
- 55g Coconut Sugar
- 100g Buckwheat Flour (plus more for dusting)
- 80g Ground Almonds
- 1tsp Vanilla Paste
- 2-3tbsp Maple Syrup
- 1-2tbsp Water
- Preheat the oven to 180c and line 2 baking trays.
- Cream together the the coconut oil & coconut sugar.
- Sift in the flour and stir together.
- Add all the other ingredients until you have a smooth paste. If too dry add extra water and/op maple syrup.
- Turn onto a dusted work surface & roll out until it’s 1cm thick.
- Cut in rounds, rectangles or Stitch shapes đ
- Chill in the fridge for 10 mins
- Bake for 15mins until golden brown.
- Resist the urge to eat them and let them cool on a cooling rack before enjoying. đ
CSF Leak: Blood Patch Surgery
I have realised that I talk quite a lot about my Postural Orthostatic Tachycardia Syndrome (POTS) & Ehlers Danlos Syndrome (EDS) but I tend to leave out my Cerebrospinal Fluid Leak (CSF leak), which is funny because it was my bad headaches that started this whole journey. It’s also strange as its the reason I’ve been had 4 surgeries in the last 5 months. So for my final surgery I wanted to make this video to give you a little insight into what my Blood Patch surgeries have been like. This video is all about the pre-op  process. I talk about what happens in the procedure and what my hospital bag essentials are đ Video all about the post-op is coming soon!
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[youtube https://www.youtube.com/watch?v=ZfPRC3zoqXI]
To The Customer Who Judged Me For Sitting Down On The Job.
This is another piece I’ve just had published on the Mighty which I wanted to share with you.
After working in the retail sector for as long as I have, Iâve learned that customers are inquisitive and tend to point out when something is different. In my four years of working at my local cinema, I have been asked a plethora of questions about the cinema: âCan I take my drink in with me?,â âIâve only got cash â is that alright?,â âYouâre Screen 3, Row H, Seats 10 and 11?⌠âSo can we just sit anywhere?â (*facepalm*). Other times I get asked slightly more intrusive questions: âWhy do you spell your name like that?,â âDo you have a boyfriend?,â âDid you intentionally dye your hair to match your shirt?â (my dip-dye pink perfectly matched the stripes down my sleeve â not intentional). Eventually you learn how to answer these questions and let them brush over you. However, when I returned to work between surgeries I did not have such a great experience with customer questions.
The first day I went back, I tried (way too soon) to work as if nothing had happened, but after just short of an hour on my feet I couldnât hide the tears from the pain in my back any longer and I had to sit down. So my subsequent shifts I was allowed to sit and take guests tickets, using my stick to get up to use the scanner for e-tickets. Many of my colleagues saw me struggling with my stick and asked why Iâd even bothered to come back to work between surgeries (the answer: because I need the money, but thatâs a separate issue entirely). Customers, however, were not so kind.
Although most comments were innocent, one comment still sticks out in my mind. I said my usual âHi guysâ as I waited to be passed the tickets, but without any pleasantries this customer said, âWhy do you get to sit on a chair and he doesnât?â I felt this was a little rude and direct and, although I shouldnât have to divulge the fairly personal health reasons as to why I was sitting down and my colleague on the other side of the building was standing up, I simply said, âI had spinal surgery a few weeks agoâ â an honest answer but definitely not the full story. When I had revealed this small part of my journey to other inquisitive customers, they would reply with an apologetic âgood luck with that,â but instead, this customer said, âDonât give me all that.â This upset me, but not wanting to let it show I took their tickets and sent them on their way.
I didnât want to stay quiet. I wanted to tell him I was a 21-year-old chronically ill woman who has been in constant and often extreme pain for the last two years, who was unable to stay at her university due to debilitating symptoms, who needs daily medication to manage these symptoms and who has already had three surgeries in the last four months (the most recent being two and six weeks earlier)Â and was awaiting a final one but needed to work in order to make enough to get by. Sitting on a chair does not stop me from doing the same job which enables you to see your film; in fact, it enables me to do a job I wouldnât be able to do without sitting.
The amount of people who simply felt the need to point out I was sitting down was astonishing to me, especially since my walking stick was clearly visible. With most of the comments I used my usual trick of laughing along with the customer and brushing it off. Many innocently remarked that it must be nice to be able to sit down. And yes, it has been nice in the sense that it has allowed me to continue working despite my surgeries, but the fact I am in pain and unable to stand and walk unaided is not so nice. If I had needed my wheelchair rather than just my stick, I wonder how many people would have said, ‘Oh it must be so nice to be able to sit down’. But no one asked me why I needed a walking stick, soâŚ
Dear Customer,
If anyone is sitting down at work where you would normally see someone standing, there is probably a reason for it. An important reason that meant an employer had to make reasonable adjustments for that employee to do their job. The reason is none of your business. If someone is genuinely interested, I am quite happy to advocate for my conditions. I take great pride in spreading awareness.
But please do not ask and then be rude about the answer. You asked me not to âgive you all thatâ â I barely gave you one percent of my journey. I told you about my surgery and you still gave me grief. I wish I could stand up without being in increasing pain. I wish I could do my job without having to answer such questions and having my weakness pointed out to me over and over again. All Iâm doing is trying my best to pay my way in this world. Surely you can understand that.
Iâm 21 â I should be graduating with my friends, going out to parties, being âyoung,â but I canât because Iâm sick and I will always be sick. So the next time you see someone or something that is different, please donât point it out. There is a reason for it and you donât know how much pain your words can cause. Next time, please think before you speak because someone may be fighting a battle you know nothing about. Be kind, always.
Many thanks,
The chronically ill young woman sitting down at work.
7 Things I only do because I have POTS/EDS! #Rarediseaseday
Here’s a video I did for Rare Disease Day (28/02). Sorry I’m a little late putting it up on here but it’s still worth a watch đ
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[youtube https://www.youtube.com/watch?v=HdlsFdsahFE]
My Secret Resolution
In my blog post all about 2016 I sneakily left out one of my New Years Resolutions for 2017. I left it out, firstly, because I didn’t know if I’d ever get round to doing it  and didn’t want to break a resolution but mainly because it took me a long time to pluck up the courage to do it. My old housemate, Becky, convinced me to, at least, think about doing it when we had a long chat and catch up about what we were doing with our lives when I visited Norwich in December . I really enjoy writing, and I will keep doing it, but I’ve always found writing very difficult so…(Drumroll Please)
I’VE STARTED VLOGGING!
Now many of you will know I’ve done videos before, with my friend Chad, for our radio show, North South Divide, but I always had someone to bounce off of and we were playing silly games and competing in some ridiculous challenges. And I’ve always performed but when you’re on stage you’re a character whereas in these I have to just be me, something I’ve always found difficult, so this is quite a new experience for me. I think I’m going to enjoy it and look forward to making more videos. I’m definitely going to do videos for my granola & cacao cookie recipes when I’m back on my feet properly after my (hopefully) last operation and a lots about my day to day life with chronic illness, especially as we are coming up to Rare Disease Day (28 Feb) but if you have any other suggestions for videos I should make in the future, just comment or drop me a line. Â For now, I hope you enjoy my little intro Vlog and you subscribe to my new channel đ
[youtube https://www.youtube.com/watch?v=9E0z6ZLmbUc&w=560&h=315]
The Most Difficult Parts of Receiving Treatment for Chronic Illness
The night before my first Blood Patch surgery, I wrote a piece for the Mighty which has just been published so I wanted to share it with you too. It’s all about the difficulties people with chronic illnesses go though when getting any sort of treatment. Here it is:
On the eve of having a surgical procedure to try and treat an aspect of my condition, Iâm anxious.
Anyone would think Iâd love to take a week or so off work and be forced to take it easy, but Iâm worried about how hard itâs going to be on the rest of my body. I have postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome. A really difficult thing with a chronic illness is pacing. Doing too much can make you too ill to get out of bed for a few days, doing too little means you body becomes deconditioned which can make you too ill to get out of bed for a few days. Itâs a vicious cycle. And after any kind of treatment you have to rest up, but try not to rest too much. After this procedure (a blood patch to hopefully help seal up a CSF leak) I have to take it very easy for six weeks and I may have to have three of these procedures, meaning Iâm taking it easy until the end of April. I canât lift or bend normally as it really affects my POTS and my pain, but after this procedure I am strictly not allowed to, I wonât even be able to push myself around in a wheelchair or walk the dog in case she pulls too much, meaning my regular exercise goes out of the window. This worries me, as the last time I just stopped doing things was before I was diagnosed and it was the worst my health has been. I couldnât get out of bed and my mental health suffered majorly. So Iâm worried about finding a way to keep my pacing strong without risking the effectiveness of the treatment and/or a major flare up.
Another difficult thing with chronic illness is that treatments arenât guaranteed to work or even help. I am worried that it wonât work. Itâs taken nearly a year to get my POTS stable enough to have the intracranial pressure monitoring (which I had in November) to find out if I did have a CSF leak, get diagnosed with a CSF leak and find a way of treating it. If it doesnât work, I will have wasted another four months and three procedures to be back to square one. I worry if it doesnât work that I will have let myself, my family and my doctors down as everyone has put in their best efforts to help me get rid of my âeverlasting headache,â as I like to call it, and my body just doesnât want to respond the way it should. But we all need to stop feeling so guilty for being ill, itâs completely out of our control.
But the most difficult thing Iâm finding about getting treatment as a patient with chronic illness is that, if it does help, friends and family think youâre am cured. And if it doesnât help, thereâs an expectation that it should have helped. My last operation was just an invasive investigation yet people who knew this still thought it wouldâve made my headaches disappear. I understand the notion, of course. If you break an arm or a leg, itâs painful, you go into hospital, they plaster you up, you spend six weeks recovering and itâs fixed. When you have chronic illnesses, however, thereâs so much more to contend with. I manage my POTS with medication but I rely on it and if I forget a dose I know about it. My EDS causes major fatigue, widespread pain, unstable joints and and gastrointestinal issues and unfortunately I am going to have to live with those symptoms for the rest of my life. Whether this treatment helps to get rid of my âeverlasting headacheâ or not, I will always be chronically ill.
Letâs say you went to the doctor for a chest infection and you happen to also have a broken arm. The doctor gives you some antibiotics which cure you of the infection, but your arm is still broken. My story is just as simple, in a roundabout way. I went to the doctor for a headache and (after two years) they found the cause of the headache. I happen to also have two long-term conditions called POTS and EDS, they did some treatment for my headaches and one finally worked, but I still have POTS and EDS.
With chronic illness, I am often made to feel that if I go into hospital for something I should come out and all my problems should be fixed. But remember you canât expect antibiotics to fix a broken arm, so donât expect a procedure for an small aspect of a condition to cure someone of a chronic illness. Itâs called âchronicâ for a reason.
The Most Difficult Parts of Receiving Treatment for Chronic Illness
New Experiences & Meeting a Fellow Zebra
Is it too late to say Happy New Year? It’s still just about January so I think it’s okay đ I’m allowed to say it because this is my first blog post of 2017! Hope everyone is having a good year so far. I’ve been busy this year. The first 10 days disappeared with movies, work, molly walking, and seeing family and friends. On the 11th I had my first Blood Patch Operation which had a much bigger affect on me than I thought it would meaning I was flat in bed for 3 days, unable to walk properly for a week and I’m still relying on my stick to get me around outside. And I’ve had to cancel going to see Busted with my brother and best friend because I’m just not going to manage standing which is a real shame as the tickets were a birthday present and  I was looking forward to. For the last two weeks I’ve spent a lot of time on the sofa watching films, Once Upon a Time and The Ellen DeGeneres Show. I’ve had a lot of extra pain in my back and have found it difficult not being able/allowed to bend, stretch or lift at all. Not being able to bake or cook because of it has really sucked! But mum has helped me make my Granola so I’ve at least had yummy food for breakfast. Being so sedentary has really badly affected my Ehlers-Danlos Syndrome causing major flare ups in my shoulders, knees and hips. And the cold weather outside has not helped either. Unfortunately the surgery has also not worked as well as I hoped. I think it has helped my headaches a little but as I sit here typing with an awful one I know it’s not quite done the trick to fix my CSF leak so they are repeating the surgery in February (which we expected) in the hopes of further improving my symptoms. You can keep up to date with my day to day activities on Instagram & Twitter ( @1nvisibl3Girl) as this year I’ve decided to attempt the #pictureadaychallenge . The night before my surgery I also wrote a new article for The Mighty about the difficulties in receiving any kind of treatment when you have a Chronic Illness and you can find that article Here.
But I wanted to tell you about slightly more exciting things. You many remember that in my post before Christmas I mentioned that my friend Dan Parker and I were going to be contestants on a new  TV game show hosted by Noel Edmonds and earlier this week we did exactly that. Probably not the best idea 10 days after my op but I knew I could be sat down the whole time, it was something to look forward to and we had absolutely nothing to loose so off to Bristol we went. Dan was very sweet and was my bag carrier the whole 4 days we ended up being there. The hotel was lovely, wish we’d have got time to have used the spa and wish I was able to swim. The first night was freezing which was not good for my hands or feet but every night my room was on a higher floor and slowly got warmer each time đ The restaurant were great too I wasn’t expecting much but I managed to have a lovely sweet potato and black bean chilli with rice. On the 3rd night the host took pity on me having to have the same dinner again and had the chef make another dish suitable for my Gluten free, Dairy free, vegetarian diet and brought out a lovely Nasi Goreng with Peanuts which took me right back to my time in Bali. I was very impressed. I have never seen a TV set before let alone been on a TV show so it was a really interesting experience. We went through briefing, wardrobe, make up and spent a lot of time in the green room. I knew there would be a lot of waiting around in TV but I didn’t realise quite how much. The sitting all day was awful for my hips and shoulders and on the second full day of waiting I ended up lying across sofas and floors just to get comfortable. Waiting around can be really tiring as well especially when early starts are involved; being up, medicated, dressed and fully made up and on a mini bus by ten past seven was a huge challenge for me and not one I could repeat in a hurry. But the one thing I didn’t even think of in TV is the amount of wonderful people you get to meet who come from all different walks of life. We met some lovely couples from policemen to events organisers and serial game show contestants. We were in a group of about 12 (6 couples) for certain call times. A group of completely random people but you’ll never guess who I met? (I mean its not like a haven’t mentioned it in the title or anything) Another lady with EDS! I think we were both as surprised as each other as we discovered we were fellow Zebras just as I had been telling another couple about my ‘rare’ connective tissue disorder. She was on crutches, and had been for a year due to a bad knee dislocation and I was still reliant on my stick from my op. It was great to go through this new experience for both of us with someone else who totally understood the pain and fatigue involved in waiting around, sitting in one place and not getting enough exercise. We also ended up being on the same programme and talking to Noel about our condition on the show which will hopefully be shown and received well and raise a little bit of awareness for EDS which would be great. I did , however have a not so great moment but the mixture of an early morning, extreme fatigue, difficult medication management due to a 5:30am start and the adrenaline rush of playing the game sent my POTs crazy and meant my legs started getting pretty uncontrollable shakes after topping up on meds, having some grapes and lots and lots of water in the green room I recovered well enough to carry on recording after the break. The show will be aired at some point over the spring or summer and will keep you updated as to when its on. It looks like its going to make an awesome show and I was really glad to be involved in it.
It’s not long until I’ll be having my next operation and it’s difficult as I will only just start to be feeling back to my level of normal by the time I have to start the whole process again and it’d difficult knowing having another painful procedure which is in very recent memory but at least this time it will be easier as I know exactly what to expect and hopefully it will give me some more relief from my head pain. đ
Two Thousand & Sixteen
Firstly, I hope everyone had a great Christmas and Santa got them everything they asked for…and if he didn’t you managed to pick it up in the sales! I had a lovely Christmas at my Nan & Granddad’s playing games, opening gifts and eating way too much. It’s crazy trying to fit everything in over christmas: we spent christmas eve night with my Boyfriend’s Dad, Stepmum, Niece and Nephew and popped in the Christmas Day morning too; on Boxing day we had christmas brunch with my Dad and Stepmum before I had work at 12; after finishing at 6 I came home to another Christmas dinner with my Stepdad’s family; then it was back to my Nan and Granddad’s for Nanna’s Birthday on the 27th and then I was back at work yesterday! Phew! I got through it…just about. I’m not sure why but boxing day morning I woke up with my knees burning with pain and barely able to walk, but with regular paracetamol, Biofreeze and my walking stick I made it to my various commitments. It was very lucky I was on Box office at work, else I wouldn’t have managed. It’s the first time I’ve had to take my stick to work. I’ve also picked up a silly little cold too which isn’t bothering me too much thank goodness and I’d much rather have it now than just before my next procedure which I’d then have to push back. I’m currently typing with blisters on my thumbs because I braved the sales alone in my wheelchair today because I’d told myself yesterday I was going to go. So despite my wobbly legs this morning I set off. I picked up some little bits with vouchers I got for my birthday and christmas getting some makeup in boots and an amazing Zebra stamp set in Paperchase (which, unless you have EDS, you won’t fully appreciate it’s awesomeness) and I may or may not have treated myself to some Stich socks and a Cockapoo calendar đ
Right then, what to say about 2016?! Well it’s been pretty rubbish for everyone right? I mean just look at the last two days! (Rest In Peace Carrie Fisher & Debbie Reynolds) But from the early days of heaven claiming Bowie, Rickman and Wogan, we should’ve taken it as a warning sign that this year wasn’t going to be a good one. The passing of so many other wonderful, talented people, followed by the rise of Trump, the shambles we like to call Brexit and, the most heart wrenching of all, The last series of the Great British Bake Off as we know it means 2016 will definitely go down in history as one of the crappiest years ever! Please can nothing more go wrong in the next 2 days, I don’t think I can take it!
For me, although 2016 has been the source of many answers and finding new things I enjoy, it has also been a year of so much pain , sadness and loneliness and really a time to mourn my former life which I will never totally regain. I’ve had to work extremely hard to fight for the answers I’ve got about my health. This year I’ve had nearly 40 specialist appointments under 9 different people and it’s been difficult for myself and my family to go through diagnosis and finding out about my conditions to working on different treatments and day-to-day management. Despite all this I’ve had a great deal to be thankful for . I’m so thankful for my family and friends who have helped me, especially my mum and boyfriend who have lived with and put up with me. I am also grateful for all the little people who’ve come into the world this year; my precious little cousin Samara, who I am longing to meet; My boyfriend’s Nephew Logan, who’s always got a cheeky smile on his face; and our bestfriends’ little man, Max. I got to see my only female cousin (well she was until Samara was born), Wendy, get married to Joe this year and being a beautiful bride. I’ve also had the joy of befriending a lovely little puppy, who’s not quite so little anymore, Molly, who I don’t know what I’d do without. She gives me lots of love, cheers me up, gives me a reason to get out of bed in the morning and makes sure I’m keeping active. Obviously I’ve not done a great deal in terms of adventure this year, my journey of discovery has been my health, but I did go on a wonderful cruise with my grandparents, their first proper holiday in a long time, which was a great trip and so nice to spend some quality time with them, my mum and brother. However, I did help my boyfriend with a big adventure: buying and moving into his new flat. We spent a full 3 days painting and many more hours cleaning and putting together flat packed furniture.
So looking ahead to 2017 is very uncertain for many. How long will it take Trump to start World War Three? Will Article 50 actually get triggered? Who on earth is going to host Bake Off on Channel 4?! Although there are a lot of things I’m uncertain about in 2017 as I gear up for my first Blood Patch Procedure in the new year there are some things I’m going to make certain about next year. I will go back to UEA in September, whatever happens. Unfortunately, at this point, I’m not sure how easy that will be or whether I’ll be up to it but I may as well go back and give it my best shot. I’m also going on holiday with my Boyfriend something we won’t have done in 3 years, I don’t know where and I don’t know quite when, but it’s happening, after he and my mum gave me money to put towards it for my Birthday, my Christmas money is being put by too. It’s something I’m really looking forward to. My final goal for 2017 is to have my health as under control as possible, I know getting my health sorted was my aim last year but obviously I have much further to go than I’d originally expected. Although I can’t fix my conditions, by this time next year I would like my CSF leak fixed and hopefully be rid of my daily headache, got my generalised pain managed and sorted out my other issues with my tummy troubles and random rashes. I aim to continue this blog and hopefully help, inspire and educate people with and about chronic, invisible illness.
Finally, a massive thank you to everyone who’s read this blog and followed my journey since I started it and I would like to wish everyone a very happy new year and hope 2017 is filled with love, hope and happiness. Surely, after the year we’ve had, the only way is up…Right?
Spoons for Christmas Please!
This is the 4th time I’ve sat down to try to write and finish this blog post! This has been a ridiculously busy time for me coming up for christmas, as it is for everyone, but I did all my christmas shopping, cards and wrapping in November( apart from a very quick panic shop last night!). Here’s a little update of the last 3 weeks, which seems a little ridiculous when I said to myself I was going to try to write a post every week but I just haven’t had the spoons! :
Wow, in the 20 days since I last published a post, I feel like I’ve barely stopped! In that time I’ve managed; 1 family gathering, 1 quiz show audition, 1 trip to Disney on ice, 2 nights at guides, 3 appointments in London, 3 nights in the fine city of Norwich, 8 dog walks and 8 shifts! That’s a heck of a lot for a spoonie. And I’ve definitely been paying for it especially this week!
First, let’s talk about the fun stuff, The medical app…no I’m joking, Norwich! Let’s talk about my weekend in Norwich. For those who don’t know, Norwich, more specifically The University of East Anglia (UEA), was my home for a year and a third while I was studying drama before I got sick. I hosted an national-award nominated student Radio show, was the technical officer for Minotaur Theatre Company and was on the Badminton Team. Then, when I went back into my second year, I knew things were really wrong and just before Christmas last year I had to make a huge decision and leave my wonderful friends and amazing experiences behind. I was desperately hoping to return in September but because I’m still learning how to live with my illnesses and my ICP monitoring surgery was on the cards there was no way that I could get back without taking at least ten steps back. But I had made a promise, mostly to myself, to make sure I was there to see my extremely talented friends take on their momentous Third Year Project. Going anywhere, especially on my own, is a huge cause of anxiety for me, I usually end up in tears the night before worrying about having everything I need, what other people will do or say and if something goes wrong with only a medical alert card buried in my handbag to help me. This time however, I was surprisingly calm about the whole situation, so straight after my appointment with my neurologist on Thursday I hopped, well hobbled, on my train from Liverpool Street and was on my way to the fine city. I snuggled into my first class seat (it was only ÂŁ1 more, was definitely worth it!), took advantage of my free water and crisps and watched Christmas with the Coopers on my Kindle. I just about had time to say hello to my lovely old housemates and dump my bag, bless my wonderful friend Georgie for giving up her bed for the weekend, before heading to the Drama studio to watch the first of the Triptych of Russian Plays known as TOCKA. Over the next 3 nights I was wowed by the talent of my friends not only as performers in The Cherry Orchard, The Storm and The Fruits of Enlightenment but also as set, costume, lighting, sound designers and makers, stage managers and assistant directors. It was great to see everyone and congratulate them and I want to take this opportunity to thank every single person, students and staff alike, who made me feel at home, wanted and included and wished me well, especially those who told me they had taken time out of their busy prod schedules to read this little blog of mine. The city looked beautiful all lit up as I took a little trip into town.  I also had an incredible night celebrating the end of Prod with my friends getting dressed up and going out for the first time in a long time was lovely and even better when getting ready to Russian pop music, which is surprisingly rather catchy. I got home at half 2 in the morning my heart pounding in my head, my hips and spine burning from a long day on my feet and an evening without my Orthotics and my body vibrating from pure exhaustion but I thoroughly enjoyed my night, smiling and watching everyone dance (I started trying to jump when Year 3000 came on and quickly realised I couldn’t do that anymore) and feeling part of something and enjoying myself for the first time in a long time. I knew what the consequences would be but I regret nothing. Sometimes with chronic illness it’s about knowing the risks and doing it anyway, you’d miss out on so much of life otherwise. Twas a fine weekend. Getting home and going straight to work, however, was not so brilliant, but I managed.
I’ve had some more fun days too. My dad’s side of the family had our annual meal and trip to the local panto which was great as always ( we’ve only missed one in the past 10 years!) especially the lights (designed by my boyfriend, Mike) and of course the performance of the stage right dragon’s wing (my best friend, Jamie) outshone the entire cast đ  Last night I went to see Disney’s frozen on ice, a 21st Birthday present from my dad and stepmum, and despite feeling quite unwell , because I was a bit silly and didn’t think having cheese on my nachos would affect me (Idiot!), I still enjoyed myself and the cast was very good especially the guy playing Kristoff who did a flip on ice! Also this week my friend Dan Parker, who I haven’t seen in about 5 years, and I auditioned for a new Channel 4 quiz show hosted by Noel Edmonds. We’ve always said we wanted to go on a quiz show together so when this came up  and neither of us are doing much at the moment we thought ‘Why Not?’. We got accepted onto the show and looking forward to being a part of it!
Now for a little medical update. As I mentioned, I had an appointment with my Neurologist before heading up to Norwich. I was hoping to get the results of my ICP monitoring study (The thing where I had that probe sticking out of my head for 3 days) but due to a bit of miscommunication he didn’t have the results for me. He talked me through the outcomes so it wasn’t a totally wasted journey. If I hadn’t been going to Norwich I would’ve been slightly more annoyed but sometimes these things can’t be helped. We went to see the Neurosurgeon on the Tuesday (13th) to get the results and he confirmed that I do have low pressure in my head, meaning they’re pretty darn sure I have a spontaneous CSF leak. So the next step was to see a brand new Doctor at a brand new hospital (Exciting stuff!) for a treatment called a blood patch, which can hopefully (fingers crossed people) solve my everlasting headache. I had my first appointment on Wednesday to meet him and discuss the treatment further and have my first blood patch early in the new year. The basic idea (though doctors don’t seem to really know how or why it works) is that they take some of my blood and put it into my spine and it works like a plaster to plumb the leak wherever it may be. Sometimes I wonder how doctors first come up with treatments like this đ But if it works I’m not bothered! 1 patch fixes leaks in 30-40% of people whilst after 3 the success rate is 60-70%. He said if they are going to work most people see an improvement with each patch but it means taking it extremely easy for the first 4 months of 2017! If I’m in the unlucky percentage where it doesn’t work they have to start putting dye in my spine and finding the specific point of the leak and then do a direct blood patch to that area which is obviously much more risky. But let’s hope we never have to think about that! So I’m glad my worries about the monitoring didn’t come true and that there was something wrong. I know this sounds very strange, you would think I would hope there’s nothing wrong, but the reason I’m glad is because it was worth it, I didn’t put a hole in my head for nothing, they’ve found another answer to one of my biggest problems and now we hopefully have a solution whereas, if the test had come back normal I’d be back at square one. It’s a relief in a world of chronic illnesses that have no cure to have a problem which they might be able to fix.
This week has been a rough one pain wise, I’ve been pushing my body to the limits. Resulting in one of my ‘Screaming Headaches’ on Tuesday with my hips and knees also burning and my hips still havent seemed to recovered to a normal level. I’ve had random POTS issues too with the odd chest pains, which are always scary even when I know they are nothing. And having accidentally eaten gluten and purposefully eaten cheese this week my tummy has been on the war path. I am at least hoping that bad flares this week will mean that I will get through Christmas flare free. I am very thankful that I should be sat down on box office for my next two shifts at work and have a more restful day tomorrow and on Christmas Day so I can enjoy myself and have a relaxed time with my family which is the most important thing this time of year, spending quality time with the people we love.
For now all I have left to say is have a very Merry Christmas đ
7 things to put on your Christmas list if you’re new to POTS.
Last Christmas my Postural Orthostatic Tachycardia Syndrome (POTS) was at its worst. 
(Not that I even knew what POTS was at that point let alone that I had it.) I knew I had something wrong with me I was so dizzy all the time and was so weak and I couldn’t even walk upstairs without getting out of breath and my heart rate would jump up to crazy levels every time I moved. Once I got diagnosed in March it all began to make sense and over the last nine months I have learnt about all the little things I can do to help improve my condition and lessen the likelihood of major flare ups. These are some of the best things I own that help me on a day-to-day basis that any new POTSies should have on their christmas list. The holidays are a difficult time to be managing any chronic illness hopefully these will make the new year a little easier. I wish I’d had many of them earlier:
My mum got me this for my 21st Birthday and as she put on the tag it was ‘a very strange 
21st birthday present’ but it was probably the best and most useful present I got. It was on my list and it was on there for a reason and it has really helped me. POTS symptoms can be made worse by heat, standing and having your hands above your head. This makes showers really hard work as well as palpitations I get awful blood pooling in my feet which is really uncomfortable, my feet are often purple and red blotches can rise all the way up my legs. Having a shower stool takes away the standing element and although I still get a little pooling in my feet it has really helped me shower more confidently and independently.
This was one of the first things I bought to help counteract my POTS, mainly because I was
sick of my boyfriend’s awful hairdressing skills (Bless him he tried :P).My hair is long and thick ad takes ages to dry at the best of times so this simple gadget has helped immensely. Again the mixture of heat and holding something heavy above your head can make you really symptomatic; when I was at my worst it was literally impossible so I bought a stand to hold my hair dryer so I can dry it hands free and it makes life so much easier and less symptomatic. I no longer dread washing my hair.
3. Handbag/Pocket sized Salt.
My Stepdad got me an amazing little salt pot that fits neatly in the pocket of my handbag when I was first diagnosed and it’s great. If you need to add a little salt to your food whilst you’re out and about and there’s none available. It may not be suitable for everyone with POTS to add salt to their diet so speak to your specialist out it.
4. Blood Pressure Monitor
Blood pressure medication can be key to helping with some people’s POTS symptoms but after getting it prescribed many people are left to titrate it up on their own. If you have a
blood pressure monitor it can give you a good idea of what is normal for you and you can tell if something is helping/changing or not. Also many people’s blood pressure readings aren’t accurate when they see a doctor as stress or anxiety can boost blood pressure, if you can get more accurate readings at home and directly relate them to symptoms you can show these to your doctor and they can have a better idea of what it is like day-to-day. In my experience Blood pressure monitors also have much more accurate heart rate functions than smart phone apps or fitness watches.
5. A good water bottle with a sports cap
Hydration is key when it comes to POTS. It’s the closest I get to feeling like a mermaid
with the amount of water I get through. When I’m feeling at my worst a bottle of water is a big rescue. Normally a glass or open top bottle is fine but when I can’t do anything but lie flat the sports cap is really important so I can stay hydrated when I just can’t get up.
6. Compression Sock or Tights.
These may not be the most comfortable and they are really difficult to get on an off
especially if, like me, you also have EDS. But they do help improve the blood flow in your legs and improving your symptoms. They’re also a good extra layer on freezing cold days.
7. A handheld battery-powered fan.
Now I know this isn’t going to help right now because it’s already cold outside but you’ll
thank me when the summer comes around again. This summer I had finally got the balance of my medication right but then the heat hit and I was pushed two steps back. So be prepared and have it early to survive summer 2017!
Other Great Ideas From Readers:
- Katherine on Facebook said: ‘I would add a bar stool for the kitchen. I wouldn’t do without mine!’. I actually have a little one on wheels on my christmas list! However much I enjoy cooking it is sometimes the last thing you feel like doing when you’re feeling rubbish at least being able to sit down whilst prepping and cooking would make it so much easier! Great Idea Katherine, Thank You.
- Scott on Facebook said: ‘I would also invest in an Ipad/tablet and Netflix as you’ll be spending a lot of time lying down or in and out of A&E in the beginning so you need something that helps pass the time.’ This is another great idea! fortunately I had entertaining flatmates to get me through my first couple of long A&E visits but I also spent the first few months in bed watching a lot of Netflix (Every series of Merlin and Ratatouille on repeat to help me sleep, random I know) so put a netflix gift card on your list! When I was recently in hospital for my ICP monitoring books were great, I read Giovanna Fletcher’s ‘You’re the one that I want’ in 2 days, but in the beginning I found it way too difficult to concentrate on a book but if you can handle it get some good ones on your list too. Thank You Scott!
Happy Holidays Everyone and Here’s to a happy, as healthy as possible, New Year 2017!
If you have some even better things to add to the list that have helped you put them in the comments below and I will add them đ