Pain doctor, exciting news and I finally had my operation!

I need to start by apologising for leaving it so long again - I must do better! Things have been a little crazy with Uni deadlines and my health not being great, but I've now finished all my work for this year and am looking forward to focussing on my health and my blog a bit more. I can't quite get my head around the fact that I've basically finished my first year of university - where has the time gone?! 

Things with my health have been a bit up and down, and as well as my usual medical appointments a few other things have been happening. I saw my Pain Consultant a couple of weeks ago - I hadn't seen this one before, as my old one moved to Canada, so I was quite apprehensive about it. But he was really nice and seemed very understanding. He told me to increase my Pregabalin, as I'm still on a very small dose. Then in a few weeks he wants me to reduce my Tramadol again (the aim is for me to completely come off the Tramadol so I can start a motility drug for my digestive problems). I spoke to him about the fact I'm not that happy with the Pregabalin, as it seems to be causing me to put weight on, but he just said that unfortunately that's one of the side effects. He's also decided to take me off the waiting list for injections in my back and neck, which I was quite upset about as I'd pinned my hopes on them helping a bit. But he seemed to think they wouldn't help and could actually make things worse, so it's hard to know who to listen to.

Over the last month or so I've seen a few friends, which has been lovely. I found out one of my closest friends is pregnant, which I'm so excited about for her and look forward to meeting baby in September. My friend Charlie also popped over one Friday afternoon with her little girl Izzi, and presented me with two large gift bags full of goodies for me. I was completely overwhelmed to find out that a few of my friends had got together to surprise me with lots of things to make me smile, and it completely brightened my week! I also caught up with my friend Katrina, which was great as we don't get to see each other that much any more with living in different places. But what was even more exciting was when she asked me to be her bridesmaid next year! I must admit I got a little teary eyed when she gave me the cute card. She's getting married in Ireland next August, and because I'm going to need my parents to travel with me, we've decided to make a family holiday out of it. I've never been to Ireland before and can't wait to explore it a bit!

Goodies from some of my friends

Card that Katrina gave me

Talking of being a bridesmaid, I've also been doing some wedding planning for our two family weddings this summer (both of my brothers are getting married in case you're a new reader). I've done some Hen Do planning for one of my sister-in-law's to-be, which is getting quite exciting (if a little stressful!) And we also had a hair trial for my other sister-in-law to-be's wedding, so that was fun getting a better idea of what we might look like.

Finally, and probably the main topic of this post, is that I've had my operation! For those of you that know me, this is the operation I was meant to have last August (but when I went into hospital I had a seizure, so it had to be cancelled while that was investigated). I was so nervous last Wednesday evening and Thursday morning as I waited to go into hospital. I was due in at 1pm, and was shown to my bed where I had to change into my gown and some rather sexy stockings to help prevent blood clots.

The anaesthetist came to see me and we chatted through my illnesses and what drugs he was going to use. I was then seen by the surgeon (not my usual one for some reason, but he was nice all the same) and we went through what would happen during the operation and plans for afterwards. I took a pile of magazines and books in with me to keep me distracted while I waited, but it turned out I was near the top of the list, so was taken down to theatre soon after seeing the doctors. 

This was my third general anaesthetic, so I knew what to expect (although that didn't make it any easier!) The anaesthetic team were all lovely, and we had a good chat while they were prepping me for the operation. The next thing I knew I was waking up in recovery, feeling rather sore and completely wiped out. One of my biggest worries was having to stay in hospital after the operation, as that's what's happened the last two times. But thankfully, although it took me a few hours longer than they expected, I felt well enough to go home. 

I pretty much spent the whole evening (and the next couple of days!) crying, but that's happened after all of my anaesthetics, so I'm pretty sure it's something to do with that. They put a new catheter in after the operation, just until things settle down. They've given me the equipment so I can take it out on my own, and then it's just a case of wait and see. The surgeon said that this won't be a permanent solution to my problems - because of my EDS he said I will never be able to empty my bladder properly. But we're hoping I can at least go back to self-catheterising for as long as possible. I don't know whether the operation will need to be repeated again in the future, but at the moment I'm just trying to focus on getting through one day at a time. I'm still recovering from Thursday, so trying to get lots of rest and sleep!

I will try and update you again as soon as I can, but you know what I'm like! I'd love to hear your news though, so please do leave a comment and let me know what's been going on in your life.

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Holiday fun and strange new symptoms

Hello lovelies,

Sorry I haven't updated for a little while - the last week or so has been pretty manic to say the least. I've got quite a few things to update you on, so I'll start with something a little more positive. Last Monday my lovely friend, Katrina, and I went on a little holiday to St Ives, Cornwall. I'd never been to Cornwall before (I know, I'm 26 and have never been to Cornwall - shock horror!) so I was really excited to go, especially to St Ives, which I've seen so many beautiful photos of. Very kindly, Katrina offered to drive us there and back, which took a massive weight off my shoulders as I would struggle to drive that far. So, Monday morning we packed up the car with our cases and my wheelchair, and off we went to Cornwall. The drive was pretty good and we arrived in St Ives at about 4pm, although it took us a while to find the hotel's car park. We checked in to the St Ives Harbour Hotel and Spa and were shown to our room. It was simple, but nice, and the staff were lovely, going out of their way to help us with our luggage. On the first evening we had a little look round the hotel, booked a treatment at the spa and relaxed in our room for a while, before having a lovely dinner in the hotel restaurant, overlooking the beach. 

We slept like logs after our long journey and Tuesday morning came round pretty quickly. We had breakfast in the same place we'd eaten dinner the night before, then headed back up to our room to get ready for the day. Unfortunately, disaster struck - I was getting ready in the bathroom when I felt the strangest sensation and heard what I can only describe as a whooshing sound. I looked down to find my catheter had fallen out, with the balloon still inflated. My heart sunk. We had been planning to go down to the beach, but I had to break the news to Katrina that I needed to go to hospital to get a new catheter inserted. We went down to reception and asked where the nearest hospital was - they originally directed us to the main hospital in Penzance, but then another lady suggested we try the Minor Injuries Unit down the road first. So we headed down there and had a chat to the lady on reception, who said she would go and chat to the duty doctor. After about 45 minutes I was called through by a lady doctor who asked quite a few questions and then had a look at my old catheter to find out what size it was. She went off to get her kit and then got on with putting a new one in. Thankfully she managed to do it first time, which I was impressed with as they usually have some difficulty. I told her she must have the magic touch, and her reply wasn't what I expected at all. She proceeded to tell me that actually, she had never inserted a female catheter before, so before seeing me she had watched a video on YouTube to find out how to do it! I'm just glad she told me that after she'd done it! 

We headed back to the hotel and had a rest in our room for a short while, before heading down to the restaurant for afternoon tea. For two of us it only cost £20, which I thought was very reasonable. I found it quite hard to eat it with my digestive problems, but I managed a couple of finger sandwiches and a scone, which were all very tasty. They let us take the rest back to our room to nibble on later. 

After letting our tea go down, one of the porters offered to drop us down into the centre of town, which I thought was very kind. We had been trying to work out how we were going to get down the massive hill with my wheelchair, so having a lift from the porter was such a help. Unfortunately because the town is mostly cobbles, it wasn't very wheelchair friendly, but we managed to have a little look around some of the streets and down by the harbour. I even managed to have a Turkish Delight ice cream down by the sea front, which had been one of my goals for this summer. I would have liked to look in a few of the shops and perhaps got some souvenirs, but sadly it was too difficult with the wheelchair, so I had to make do with buying a couple of postcards instead. 

We got a taxi back to the hotel and I had a little nap before we went down to the hotel restaurant for dinner again, not that I could eat much after an ice-cream and afternoon tea! Again, we slept like logs, and Wednesday morning was here before we knew it. We had our last breakfast in the hotel restaurant and packed up all our stuff, which we were able to leave in reception. Katrina got her bikini on and went to use the spa, while I had a drink in the hotel bar, before going down to the spa for my massage. It was all over so quickly, and we packed up the car and headed off on the journey home. It was lovely to get away for a couple of days with a friend - it's the first proper holiday I've had without my family, and I'm glad I managed to survive it, despite the blip on Tuesday! I'd love to go back down to Cornwall again at some point, perhaps for longer next time, to have more of a look round some of the different towns and beaches.

The main reason we had to come home on Wednesday was because I was due to have an operation on Thursday. I got up super early on Thursday morning and my Mum dropped me off on the Day Surgery Unit for 7.15am. She wasn't allowed to come on the ward with me, so she headed off home and my nurse helped me with my bag and showed me to my bed. I changed into a hospital gown and the anaesthetist and my named nurse came to chat to me about the operation. After that I have very little memory of what happened next. The next thing I knew, I was lying flat on my bed surrounded by doctors and nurses, with a cold compress on my head. I felt confused and floaty, but assumed I'd just nodded off and they were here to take me down to theatre. But then my nurse told me that I'd had a seizure and they were cancelling the operation. I didn't really understand what she was saying, and tried to talk to my consultant, who was telling me I needed to see my neurologist. 

A while later my Mum arrived, and I asked her why she was there. She told me I'd text her and asked her to come and get me, which I have absolutely no memory of doing! I was feeling a little less confused by then, so we asked to speak to my Urologist again. He confirmed that I'd had a tonic clonic seizure and that I would need to see my neurologist for some tests to try and find out what caused it. He made sure I was stable, and then advised my Mum to take me home to rest, as a seizure can take a lot out of you. I'd bitten my tongue during it, and also scratched my face, so I looked like I'd been in the wars! He said we need to wait for the neurologist to declare me safe before we can go ahead with the operation, which is frustrating. I'm also not allowed to drive, be left alone, have a bath or shower without someone being there or lock the bathroom door. It's a lot to get my head around, and I'm still feeling pretty wiped out, but I'm hoping I'll be able to see my neurologist soon and get some answers about what's going on. Until then, I'm having to rely on other people to ferry me to my various appointments, and am feeling pretty down about my loss of independence.