Chronically Jenni
Spreading Awareness & Helping Others with EDS & POTS
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 £1 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 😛 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 😛 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 🙂
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