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 😛

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.

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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! :

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Spoon Theory Explained

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!

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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.

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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!

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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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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. 15303833_10154375944529900_1371188705_o(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:

1.A Shower Stool.

My mum got me this for my 21st Birthday and as she put on the tag it was ‘a very strange shower-stool21st 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.

2. A Hairdryer Stand.

This was one of the first things I bought to help counteract my POTS, mainly because I washairdryer-stand 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.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 aomron-m6-blood-pressure-mon 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 capsb-32-esd

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.865

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.tinksky-hand-held-battery-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 🙂

Oatmeal-Raisin Cookies

‘We haven’t known each other for that long a time, and, um, there are three things that you should know about me. One, my friends are the most important thing in my life. Two, I never lie. And three, I make the best oatmeal raisin cookies in the world.’

-Phoebe Buffay, The one with the dozen lasagnas.

Now I don’t make these that often because it makes the other cookies but they are my favourite thing in the world. I made up this recipe when I first fell in love with Friends when I was young and have recently adapted them to my dietary requirements and they are just as good as I remember, if not better!

Sweet, Crumbly, Chewy Yumminess: Enjoy!


 

Makes: 11

Takes: 30mins

Ingredients:

  • 85g Coconut Oil (or Sunflower Oil Spread, if you’re amazon delivery of Coconut Oil hasn’t arrived yet!)
  • 110g Coconut Sugar
  • 1 flax egg ( 1tbsp milled golden flaxseed mixed with 3 tbsp water and left to set in the fridge for a few minutes)
  • 110g Buckwheat Flour
  • 55g Oats
  • 150g Raisins
  • 1tsp baking powder
  • pinch of salt
  • 1 tsp cinnamon

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  1. Preheat Oven to 180 degrees
  2. Cream together the Coconut Sugar & Oil (or Spread).
  3. Sift in Buckwheat flour and then fold in the Oats, Raisins and the other ingredients.
  4.  Line 2 baking trays then place well spaced  heaped tablespoons of mixture on them and flatten slightly.
  5. Bake for 15 mins until golden brown.

 

These can be kept in an airtight container for 5 days (If they don’t all disappear before then, that is.)