Sunday, 24 January 2016

Sunday Snippets - 24th January 2016


As I was changing my daily calendar this morning, it suddenly hit me that exactly a month ago was Christmas Eve! Seriously, where on earth has that month gone?! It’s kind of scary how quickly time seems to be going these days, and sometimes it can leave me feeling quite overwhelmed. It’s been another relatively busy week, more so towards this weekend, but I did manage some quiet days at home as well. 
  


Last Sunday was quite a relaxed day, which is always nice. I had a much-needed lie in and then went over to Pets at Home with my Dad to get some cat litter (exciting stuff!) I’m terrible when it comes to pet stores though, and can’t possibly leave without a treat for our furry friends! Thankfully I’ve been very restrained when it comes to adding to our menagerie, but I did pick up a couple of things – a new cat bed for Jaffa (to be fair, he needed a new bed as we had to chuck his old one out) and some teeth cleaning chews for Alfie and Freddie. As soon as we came through the front door and they saw us, they were jumping around all over the place – I’m sure they can always tell when we’ve been to a pet shop! I then spent the afternoon blogging, and also sorted out a load of (very!) belated Christmas presents so they were ready to be collected by the courier the next day. In the evening we all went out for a family dinner to celebrate my brother (Richard) and my other brother’s fiancé (Emma) birthdays. I decided to treat myself to a fruit cider, which was really yummy even though I couldn’t manage it all! They also had the most amazing Black Forest Gateaux, which is one of my all time favourite desserts. Thankfully I had Mum to help me eat it as I struggle to eat normal portions, but it was so good!



Monday was a really chilled out day and I managed to be quite productive, which always makes me feel a bit better mentally. I spent the morning doing some tidying in my bedroom. I’m really bad for not putting things away and just creating piles of things around the floor, mainly because I just run out of energy and don’t have anything left to start thinking where to put new things! But it ends up making me feel really stressed, so whenever I can I make sure I set aside some time to do some sorting and tidying. It didn’t look a whole lot different after I finished, which is frustrating, but it’s little steps in the right direction. In the afternoon I spent some time playing with Lightroom (the new photo software I received for Christmas) and managed to edit some photos and upload them to Facebook, so I was rather proud of myself! I also caught up on my Facebook messages and blog emails (again, I’m awful for letting them build up!) I decided to change the desktop background on my main computer, and thought this cute quote from Pinterest would motivate me when I’m blogging.



Tuesday started like last week, with another hospital appointment. I saw my physio and we did another session of acupuncture – I’ve got to see if I notice any difference and then I’ll have one more next week. If I feel it’s helping then he’s said we can carry on, so that’s good to know. I think it might be making a little bit of a difference, as my pain does seem to get worse as the week goes on, but it’s so hard to know as it’s so gradual. I then came home and did some more tidying (I’m seriously on a roll right now!) but I ended up curled up on my pillow on the floor feeling really faint and dizzy, so I don’t know if that was a side effect of the acupuncture or just me. While I was tidying I found my ‘Happy Box,’ which I fill with things like letters, cards, little quotes I like and anything else that will cheer me up. Only problem is, I’m running out of room in this box, so I need to find a larger one – if anyone has any ideas I’d love to hear them! I’d love to continue to add to it with special letters that people have sent me. I spent most of the afternoon snuggled on the sofa doing little bits on my laptop and watching rubbish daytime TV. Late afternoon I had an appointment with my GP, which I think went OK. We discussed the fact my hair keeps falling out and she thinks it could be because my iron levels are so low, so I’ve got to stop my iron tablets for a few weeks then have a blood test to see what’s going on with them and whether they’ve increased at all.



Wednesday was another quiet day – a bereavement counsellor was meant to come and see me first thing, so I got myself up nice and early. Unfortunately I had a phone call to say she was sick, but as I was up and dressed, I decided to try and use my time in a positive way and get some jobs done. Problem was, I just wasn’t in the right frame of mind to do anything – all I wanted to do was sleep! I managed to do some tidying in my bedroom, then in the afternoon I caught up on some of my blog emails, replied to comments and then wrote a few letters using these cute sausage dog notecards.




On Thursday I was at Uni all day, which was a struggle as my fatigue levels are pretty bad at the moment. We spent the day working on our news stories for our broadcast in February. When I got home I had a bit of a doze on the sofa, as I was beyond shattered. I also opened my post – my favourite thing was this cute shoe card from my friend Leanne.



Friday was a really busy and exhausting day. My Dad drove me all the way to Orpington, to The Princess Royal Hospital. The weather while we were driving was awful, but traffic was good so we arrived at the hospital in plenty of time. Unfortunately, there was no disabled parking left, so we ended up just about as far away from the hospital you could possibly get – thankfully I had my chair! We headed for the café first, and I had a salted caramel soya hot chocolate, which was really yummy. There was a two-hour delay to see the doctor, which I kind of expect when I go to see the top specialists, so it doesn’t bother me too much. I took my book along and managed to read quite a few chapters. I saw a registrar first, who basically took some history and asked to see how hypermobile I am (I never understand why new doctors I see ask me to demonstrate this, as I’ve already been diagnosed with EDS Hypermobility Type!) I then saw the consultant, who specialises in POTS. He was really lovely – very understanding and knowledgeable about EDS and POTS. He wants to start me on Midodrine, but I will need to be admitted when they give me the first dose. He also went over some of the lifestyle adjustments that might help a bit, such as drinking three litres of water a day, adding lots of salt to my food, gentle exercise and compression leggings. He said that my digestive problems make it a lot more difficult to treat me, but will see what he can do. He also said he would refer me to an EDS Urologist at Denmark Hill. We got home early evening, and I spent the rest of the evening resting on the sofa.




Yesterday was really lovely thanks to my brother, David, and his fiancé, Emma. They came and picked me up around lunchtime and took me to a gorgeous little tearoom, which is literally a couple of minutes away from their new flat. I can’t believe I didn’t know it existed until now! They treated me to afternoon tea, which was amazing but I had to bring quite a big doggy bag home, as my poor digestive system couldn’t cope with it. So I’ll be spreading all the yummy goodies out over the next few days. We then came back to mine and had a quite afternoon watching Bolt – I’d forgotten how funny it is!

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 Unicorns and Floral Crowns and you can find it by clicking here. I haven’t updated it for a while, but I hope to get into a routine soon. 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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