Sunday Snippets - 15th May 2016

It’s been a bit of a crazy week with three hospital appointments (well, technically…more on that later!) and what has felt like no real downtime, so I feel a bit like I’m running on empty at the moment. But, as always, there have been good parts in between, and those are the things I try to capture in my daily photographs. I started doing something called Project 365 a number of years ago, which is basically where you take one photo every day for a whole year. I got a bit addicted to it and have done it for so many years now that I’ve lost track of how many photos I’ve taken. But in the last year or so, I decided that instead of just taking a photo that represented the day, however rubbish, that I would look for happiness or positivity in each day, and base my photo around that. I find it just helps a bit on those days that are a real struggle, and when I look back at them it’s nice to know that there was something good even in the most difficult of days.

Last Sunday was a really nice home-y day, which are definitely my favourite kind of days (even though obviously it’s fun to be doing exciting things – you just can’t beat a relaxed family day). I woke up ridiculously late, which definitely wasn’t my plan but I obviously needed the sleep! I wasn’t feeling particularly great, so just took things slowly. My brother, David, came over late morning, so I chatted with him and the rest of the family for a while, which was nice. With both of my brothers moving out and with losing three of my grandparents, it really makes you treasure time spent with family. As the weather was so good we took the dogs out in the garden to play. This little munchkin (Freddie) absolutely loves water, and got rather wet as we were pouring the watering can and he was just jumping around in it! I spent a lot of the afternoon trying to write a blog post, but I kept nodding off and the heat in my room didn’t help. I spent the rest of the afternoon just chilling out, flicking through a magazine and watching The Simpsons. For my Self-Care Sunday I treated myself to a DIY mini-facial, which was very relaxing.

Monday brought with it a whole day without any plans, which was a nice prospect after the craziness of the last few weeks (and the fact that for the next three days I had hospital appointments looming). After a bit of a lie-in and a lot of procrastinating, I spent the morning editing a load of photos off my camera and importing some videos I filmed recently. In the afternoon I caught up on my blog emails, wrapped a birthday present for a friend and got it ready for posting. I popped to Waitrose with my Mum just to get out of the house for a few minutes. I wore this t-shirt from Primark, which makes me smile for two reasons: 1) It’s Disney and 2) It’s so true!

I had a very early start (5am – ouch!) on Tuesday, which wasn’t much fun, especially considering it wasn’t for anything exciting! My Dad and I made our way to the station, got a train to Clapham Junction and then the over ground to Denmark Hill. King’s College Hospital is fairly close to the station and we got there in plenty of time, so had some breakfast in the café, which helped me wake up a bit. We then went up to the Arrhythmia Clinic and I had an ECG and my blood pressure checked, before seeing the specialist nurse. We had a chat about my POTS and the new drug (Midodrine) they’re starting me on, then she gave me my first dose. I had to wait around for a while to have my blood pressure monitored, so I read my book and finally managed to finish it! When they were happy I was safe to go, Dad and I decided to just make our way back rather than getting lunch in London, as it was pouring with rain and we were shattered. So instead, we found a little café when we got closer to home, which meant we could relax a bit. As soon as we got home I fell asleep on the sofa and spent the whole afternoon asleep, which was definitely what I needed!

Wednesday was a bit of a rubbish day to be honest. I woke up not feeling brilliant, which was probably a mixture of the effects of Tuesday and the new medication. But my Dad and I had to go over to our local hospital, as I had an appointment with my Neurologist. Well, so I thought. I tried to book in with the receptionist only to be told my appointment had been cancelled back in March, but I hadn’t been told! This is the second time this has happened in the space of a few months (last time it was with my Gastro) and a referral letter for Stanmore was also never sent, which cost me even having an assessment there as they’ve currently closed their books. So, as you can imagine, both my Dad and I were not happy. The Neurologist wouldn’t see me without my notes, as he said I was too complex, which is fair enough and I’d rather have a proper consultation. We spoke to the matron and then to PALS, who advised us to make another formal complaint and they will re-open our case. So, after an hour and a half we came home and I crashed out on the sofa for quite a while with this little man. I did manage to get a couple of letters written in the afternoon, in between rests though, which is something.

I had another fairly early start on Thursday, as my Dad and I had to pop to my brother’s flat and the Post Office before we went to the hospital. I had an appointment with my Pain Consultant, which went a lot better than Wednesday’s debacle! We’ve been trying to get me off opiates, but after trying numerous other things have had to admit defeat – I just hope my Gastro Professor will understand. I’m being put on Tapentadol, which I can then top up as needed with Tramadol on bad days. He’s also referred me to have injections where the base of my skull meets my spine – if those work I can have them in other places and he will also refer me to have some sort of electrical current treatment that does something to the nerve being treated. On our way home, my Dad and I popped into Costco to get a couple of bits. I spent the afternoon crashed out on the sofa, as this week had really hit me and I think the Midodrine is also making me feel a bit funny. My sister, Rosiie, was making me laugh by putting my glasses on Alfie – he looks so clever!

Friday was the first day in what felt like ages that I didn’t have any appointments. So, I had a much-needed lie-in and took things very slowly. I didn’t really get up and going until nearly midday, which is a bit bad but I was shattered and was feeling really dizzy. I spent a while editing and uploading an EDS Awareness video to my YouTube channel, which I’m happy I’ve actually managed to get up in May! You can watch it here and I would really appreciate any support over there. I rested for a while and watched a bit of YouTube. Then my Dad and I popped down to a local photography exhibition to have a look round for half an hour, which was nice. I got some new flowers for my room and they smell amazing – I’ve never bought stocks before and they went really well with these beautiful dusky pink roses.

Yesterday was more of a relaxed day, and I actually had a social engagement for a change! I had a really quiet morning just pottering round the house and wrapping some birthday presents for my friend. Around lunchtime, my friend Becky picked me up and we went to the cinema to see The Jungle Book. If you’re a regular reader, you will know how much I love Disney, so I had high hopes for this adaptation of the classic film (and, of course, book by Rudyard Kipling!) Thankfully I wasn’t let down – the film was fantastic, if a little dark in places, but it stuck to the story really well and the animals looked so realistic. I will definitely be buying it on DVD when it comes out, and there are also so many other exciting films coming out over the next few months that I want to see – Finding Dory, The Secret Life of Pets, Me Before You, Mother’s Day and Alice Through the Looking Glass. After the film, we chilled out in Starbucks with one of their new fruity Frappuccino’s, before Becky’s boyfriend picked us up and dropped me off at home. I rested for a little while, and then had an unexpected visit from one of my closest friends, Sarah. I had planned to see her on Sunday, but we managed to squeeze in an extra catch-up on Saturday too, which was so lovely as we don’t get to see each other enough these days due to distance. I actually ended up watching some of Eurovision last night, which isn’t like me as I’m not really a fan, but it was quite fun to watch it with the family.

If you haven’t read my blog before, I just wanted to let you know that I have a second blog, which mainly focuses on my health in more depth than I talk about it here. It’s largely for friends and family to follow and keep up with what’s going on, but if it’s something you would be interested in reading as well, you are more than welcome to follow me over there. It’s called ‘Zebra Crossing’ and you can find it by clicking here. I’m trying to keep it updated fairly regularly, so hopefully there will be something there for you to read!

I’m also trying to post on Snapchat a bit more, so if you fancy following me, my username is Jennycole44.

What have you been up to this week? I always enjoy hearing about your news and adventures!

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Sunday Snippets - 8th May 2016

This week has definitely had its ups and downs, and in all honestly has been quite a struggle, especially towards the end of the week. But we finally seem to be seeing spring now, so it’s been lovely to feel a bit of warm sunshine on my face and see nature really blooming around us. The only problem with it being warm and sunny is that my bedroom is in a loft conversion, which basically turns into a sauna when the temperature rises. As my computer is in my bedroom too, I’ve been finding it very hard to blog and film, as I just don’t cope well with heat. This is when having a separate office that isn’t in the loft would be amazing! Next week is looking very busy with hospital appointments, which I’m not much looking forward to, but hopefully they will bring some answers with them.

Last Sunday I thankfully felt a bit better after sleeping most of Saturday. I spent my morning blogging and watching The Simpsons (what else would I be doing on a Sunday?!) I had quite a chilled out afternoon watching YouTube videos and writing letters to some of my penpals. We had a family dinner with my Grandma round, which was nice, but I felt quite poorly afterwards. I’ve mentioned before, but I’ve promised myself I will put aside time for self-care at least once a week, self-care Sunday sounded good! Plus it gets you feeling really refreshed for the week ahead. I didn’t feel well enough to have a bath, so I just dug around and found some beauty samples and mixed up my pamper routine a bit.

With Monday being a Bank Holiday, I was looking forward to some time to just relax and take it easy. We had expected the weather to be terrible, but when I woke up it was pretty good, so my Mum took me down to our local May Fayre for a look around. I struggled to know what to wear, as the weather was so changeable, so I ended up in my big Superdry coat with my sunglasses on! My sister, Rosiie, came down a bit later with Freddie and we all got our first ice cream of the year (and even Freddie had a little lick!) I got tired out fairly quickly, so we came home and I had a rest. I spent the rest of the afternoon watching YouTube and trying to get on top of my blog emails.

I had an early start on Tuesday, as I had to go down to the doctors for a blood pressure check. They’re concerned that some medication I’m on is putting me at risk of having a stroke, so I’ve got to talk to the neurologist next week and see what their thoughts are. I came home and had a bit of a rest. Then I had to go back to the doctors to see my GP. She’s going to ring my psychiatrist and express her concerns about me being discharged, so I’m keeping everything crossed they will think again. I’ve also got to have an ultrasound on my foot to see if there’s a problem with a nerve and be seen again by the orthopaedics about my hips. In the afternoon my Dad took me over to Uni for a couple of meetings. They were having a little end of year celebration, but unfortunately I couldn’t stay. My new camera arrived so we picked it up on the way home – I’m really excited to use it! The evening was pretty awful unfortunately – I’m really struggling with my mental health.

On Wednesday morning I had a lot of trouble getting up because my head was pounding and I couldn’t move or speak. It was really scary, and although I get it a lot where I can’t move or sleep, I don’t think I’ve had it alongside such a bad headache. Thankfully, after a couple of hours I was able to move again, so could take some pain medication and I started to feel a bit better. I actually managed to get two YouTube videos filmed, so felt quite proud of myself as when I woke up I thought I’d have to write the day off. Whether pushing myself was a good idea or not, only time will tell! As I’d been stuck inside all day, my Dad took me down to the church in the afternoon to look at the beautiful churchyard. It’s completely full of bluebells and blossom trees, the sun was shining down and it felt so tranquil, which was just what I needed.

Thursday was another beautiful sunny day, so my Dad and I decided to go out and take some outfit photos for my blog. I really wanted to take some amongst the bluebells, so we went to The Vyne (a National Trust Place) as we’d heard they were good there. We got there at lunchtime, so stopped at the café first and had a bite to eat. My Dad then pushed me round one of the woodland walks (which was mostly wheelchair friendly, apart from a couple of places where I had to get out an walk with my stick over big tree roots!) There were loads of beautiful bluebells and we took photos along the way. We then walked along the lake and through the walled garden, but unfortunately there weren’t really any flowers out yet. On the way home we stopped off to vote, then I crashed out on the sofa for the rest of the afternoon.

Friday was quite a difficult day – I had an early start, as my Dad had to take me over to Aldershot for a couple of hospital appointments. My first one was with the Dietician, who is concerned about the severity of my digestive symptoms and thinks I should be moving towards a more liquid diet. I’ve got to speak to the professor at the end of May and see what he says, and then we’ll go from there. I then had an appointment with my mental health care co-ordinator, and was told I’ve been completely discharged from the mental health service. I just came out and broke down. They haven’t listened to anything I’ve said to them about how things are at the moment. My GP has spoken to them in depth about her concerns and told them she doesn’t believe I should be discharged. But I have been, and was told to just call The Samaritans if I spiral any more. I’m terrified to be honest and feel completely abandoned. I spent most of the afternoon breaking down in tears, but managed to jot down what has happened in a letter, which I took down to give to my GP. I’m really hoping something can be done because as well as my GP saying I need mental health support, my gastro consultant, professor and even my care co-ordinator have said I need more help. The only light in an otherwise very dark day was seeing that my bleeding heart has started flowering.

Yesterday was pretty busy, which was quite a good distraction to be honest. My Mum and I went over to Festival Place in Basingstoke, as I’d been invited to blog about a big fashion event that’s been going on this weekend. I’ll be doing a separate blog post about it, so won’t go into too much detail. But basically there was a health and beauty lounge with different brands, which was good fun, and also catwalk shows with the latest high-street trends. As well as covering the event, my Mum and I did a bit of shopping too, although I was actually pretty restrained and didn’t buy much for myself. It was a long but nice day, so when I eventually got home I crashed out for the evening and watched some rubbish TV.

If you haven’t read my blog before, I just wanted to let you know that I have a second blog, which mainly focuses on my health in more depth than I talk about it here. It’s largely for friends and family to follow and keep up with what’s going on, but if it’s something you would be interested in reading as well, you are more than welcome to follow me over there. I’ve actually changed the name from Unicorns and Floral Crowns to ‘Zebra Crossing’ and you can find it by clicking here. I’m trying to keep it updated fairly regularly, so hopefully there will be something there for you to read!

I’m also trying to post on Snapchat a bit more, so if you fancy following me, my username is Jennycole44.

What have you been up to this week? I always enjoy hearing about your news and adventures!

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Sunday Snippets - 1st May 2016

It’s been quite a tough week with a lot going on. Add that to the fact the week before was also very busy, and my body has decided it’s had enough, which is very frustrating. I’ve really pushed myself to do all these things because they’re important to me, but I think perhaps I’ve neglected listening to my body (again!) It’s certainly not easy, and despite the fact I’ve been doing this for 27 years, it doesn’t seem to get any easier! I’m always being told to pace my activities, and generally I do try as much as I can. But there are times when I just want to do what everyone else is doing, so pacing goes out of the window and I pay for it later. I guess it’s about finding a balance, and I think it’s something I will continue to work towards for the rest of my life because things will continue to change. I just keep trying to remind myself that we only get one shot at life, so sometimes I have to go against what my body is telling me and make some memories.

Last Sunday was my first quiet day of a rather hectic week, so I was really grateful to have a proper lie-in! I had a typical Sunday morning, taking things fairly slowly, watching The Simpsons and doing some blogging. After lunch, my Mum needed to pop to Pets at Home, so I decided to tag along. We had fun seeing all the cute animals and picked up some new treats for the doggies. When I got home I decided to try and get through my pile of paperwork that never seems to end! So I popped some YouTube videos on and actually managed to get quite a bit done. In the evening I did a bit of pampering, as I’m trying to make sure I do some sort of self-care every Sunday. To be honest I had absolutely no motivation to do anything because I felt rubbish, but I decided to give this Sanctuary Spa Beauty Sleep Face Mask a try. It smelt amazing and felt lovely, so I’m glad I made myself do something.

I had a super early start on Monday, which definitely wasn’t much fun! My Dad took me to the hospital for an appointment with my urology nurse. We had expected to stay most of the morning, but she took my catheter out, reminded me how to self-catheterise and because I managed to do it we decided I could go home and call her if things went wrong. So, after over a year of having a permanent catheter, I am catheter-free! I’m just hoping it will last a bit longer than it did before, but only time will tell. I fell asleep on the sofa when we got home and slept for quite a while. When I woke up I decided to get a blog post written and published, and also had to edit some photos. I chilled out for a bit in front of the TV and applied for my student finance for next year. My Mum then took my sister and I for a bridesmaid dress fitting for Richard and Lisa’s wedding. I found this cute Disneyland Paris postcard had arrived from my friend Suzie when I got home – I want to go back to Disney so much!

After Monday’s early start I was able to have a bit of a lie-in on Tuesday morning thankfully. My morning was fairly quiet, so I just took things slowly and managed to edit some photos for a blog post. I then went round to my friend Katy’s to get my eyebrows done and to have a facial. It was so relaxing – just what I needed, especially with this constant head and neck pain. I spent the rest of the afternoon working on a blog post, and managed to get more done than I’d hoped, which is always good. Post has been pretty quiet recently (probably my fault as it’s taking me longer than I’d like to reply to people) but Tuesday was a good post day with letters from three of my penpals.

I went into Uni on Wednesday, as the second years were doing a news week and our course leader said it would be good for us to go in and help out to get some experience. I wasn’t able to go in on Monday or Tuesday, but they said it was OK for me to go in for the end of the week. It was all a bit crazy, but thankfully my friend Shanae and I were put on a story that needed a lot of research and preparation, so our package didn’t have to be ready on the same day. We spent the morning sending out loads of emails to politicians, to find out their views on the EU Referendum. In the afternoon we went out into Farnham to try and get some video interviews with local independent businesses. Unfortunately, a lot of the people we spoke to were quite rude, which I always feel is unnecessary – I’m absolutely fine if people don’t want to give an interview, but don’t understand the need for rudeness. Thankfully we managed to get one really good interview at the last minute, so we were really happy with that. I was absolutely shattered by the time I got home, but this little chap was making me laugh doing silly things.

Thursday was a ridiculously stressful day. I was back at Uni first thing for another news day. I spent the morning out in Farnham with Shanae and Nina filming interviews with the public about the EU Referendum and whether people feel they know enough about it to vote. We grabbed lunch at our desks, as we had so much editing to do. Unfortunately, we had an absolute nightmare getting the footage onto the computer, so were under huge pressure to get the package finished and ready for broadcast by 4pm. I felt really poorly by the end of the day, but Shanae was an absolute babe and cheered me up by giving me this Dew the Hoola sample from Benefit that she can’t use. I spent the rest of the afternoon/evening laid out on the sofa in pain.

Friday was another busy day, as I was back at Uni for the final day of the news week. Getting up proved incredibly difficult after the stress of Thursday. After some planning, I went to Farnham Maltings with a couple of the girls to film an interview about an event that’s happening on Sunday. As we made our way back to the Uni through Gostrey Meadow, this beautiful blossom tree made me smile. We got caught in the craziest hail/snow storm, so took shelter in Starbucks and I picked up something to warm me up. I spent the afternoon editing my package ready for the final broadcast of the week.

Yesterday was a complete write-off to be perfectly honest. I didn’t wake up until quite late, managed to get myself some breakfast and change out of my pyjamas, before making it down to the sofa and crashing out. I slept all morning, and my Mum eventually woke me at about 2.30pm so I could have some lunch. I had hoped to do a few bits on my laptop during the afternoon, but I just kept falling asleep and didn’t end up getting anything done. My pain levels were through the roof and I just felt incredibly unwell. The highlight of my day was my Glamour magazine arriving. It wasn’t really unexpected after the busy few weeks I’ve had, but that doesn’t make it any easier to deal with. I’m still finding it hard not to berate myself for having a lazy day achieving absolutely nothing. But thankfully I have my parents around, who keep reminding me that I am ill and that my body needs time to rest and recover.

If you haven’t read my blog before, I just wanted to let you know that I have a second blog, which mainly focuses on my health in more depth than I talk about it here. It’s largely for friends and family to follow and keep up with what’s going on, but if it’s something you would be interested in reading as well, you are more than welcome to follow me over there. I’ve actually changed the name from Unicorns and Floral Crowns to ‘Zebra Crossing’ and you can find it by clicking here. I’m trying to keep it updated fairly regularly, so hopefully there will be something there for you to read! I’m also trying to post on Snapchat a bit more, so if you fancy following me, my username is Jennycole44.

What have you been up to this week? I always enjoy hearing about your news and adventures!

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