Holiday!

I went on my little holiday/vacation last week to the seaside town of Weston-super-Mare. We were really lucky with the weather. As I come out in a rash in the heat, I was happy it wasn't too hot, it was perfect for being all out day for me. We spent a lot of time outside! We had a beach day and visited the pier, went to the aquarium and had a look at the sand sculptures, which were really amazing.

How they manage to make these out if ordinary sand I have no idea! But they were all brilliant.

We went to the theatre while we were there and saw a really good play called 'Double Death', which was a bit of a crime mystery. It was really clever and I liked how all the objects from the game Cluedo were props on stage. The dagger, the candlestick, the rope and the others were littered around the stage. It was really clever and reminded me a bit of the Agatha Christie stories. 

We had a day at Noah's Ark Zoo Farm in Clevedon, which was a kind of cross between a zoo and a farm. You could feed the chickens and the goats and hold rabbits and gineapigs (which made me really miss my little rabbit! I miss having live things to cuddle!) but they had lions and tigers, monkeys, zebras, giraffes and two new elephants, one of which had only arrived the day before. It's such a great idea to have them together because although zoos are great it's frustrating, especially for children, that you can't get right up close or touch any of the wild animals. There were groups of nurses and patients from old peoples' homes and lots of disabled children so I think it must be well known as a good place for wheelchairs. There wasn't anywhere we couldn't get to, which sadly is a rare occurrence at places like this! The restaurant was terrible but we had plans to go out for an evening meal anyway so we didn't want to fill ourselves up. 

On the way home we stopped in Bristol and had a shopping day. I popped into H&M for a basic cardigan as it's getting colder and my pacemaker is still sore so getting jumpers on is a bit of a struggle. I also got some bath bombs from Lush to save for a rainy, cold day. We had a great meal in TGI Fridays, which is an American themed restaurant, for those who don't know, so unlike the grumpy old British the waitors there are really lively and friendly. We had a lovely Italian waitor who was practically bouncing off the walls with enthusiasm and we really liked that. They do tapas in there now, which is perfect for me as I don't eat much but I still get to try lots of different things. 

In other news my pacemaker is still hurting. I got the stitches out last Monday on the way to Weston and the actual wound has healed really well but it's still really swollen and sore over the actual area of the pacemaker. Apparently it's, not exactly normal, but nothing to worry about. It'll go down eventually but it's going take a long time unfortunately. My chest is still bruised and isn't fading much either but it'll heal one day! I'm glad the wound is okay anyway. That's the bit that could get infected so it's important that that heals quickly so I don't get any nasty bacteria in there. It's definitely getting less painful and that's the main thing. It's just hard to remember not to move it too much now as it's only very painful when I move too much or over-stretch it. The thing I'm finding annoying is I seem to spend a lot of my time changing dressings because I have my line and then I have my pacemaker wound too. I don't think it's quite ready to go without a dressing yet but I can probably be less careful about being sterile soon. The stress of not being able to scratch your face for twenty minutes is not fun! 

This week I'm looking forward to the Invictus Games, which is a kind of Paralympic Games but only including injured armed forces. It'll be great to see those suffering from mental and invisible illnesses competing alongside amputees, which I think is great because it'll make people understand a bit more about invisible illnesses and injuries. Just because you've got all your limbs doesn't mean you're not disabled. Obviously watching disabled athletes can make your average disabled person feel like they should be achieving more but I'm just glad to see more disabled people on tv. I feel like it might help attitudes and perhaps change the sad truth that disabled people are far more likely to be victims of crime than normal people. This should be televised in all countries taking part so give it a google if you're interested in watching some of it and don't live in the UK. There will be some sports that you won't have seen it heard of before, created specifically for disabled athletes, so it's worth a look. 

I have lots of blog ideas piling up so I'll be back soon! 

Happy Christmas!

Sorry I've been rather quiet over the Christmas period. I've been meditating, willing my body not to get ill this year and somehow I managed it! I've actually been so busy leading up to Christmas that a part of me is quite looking forward to the rest. As I think I mentioned I was going off to Swansea to see my boyfriends family as soon as my final assessment was done for university, which was the last of four due in within a week which was not pleasant at all! We pretty much just chilled out in Swansea, as we didn't want to be really busy and get myself ill for Christmas. Unfortunately James ended up with a cold for Christmas - who saw that coming?! 

Then as soon as I was back home I had a pacemaker check, which was much better than expected as the technician said that he'd be surprised if my pacemaker didn't last ten years which is awesome as I haven't had any of my pacemakers longer than 6 years and as this one is 6 years old now I was expecting for it to be needing to be changed pretty soon. So that's one worry off my mind because I heard they like to do it under local anaesthetic in adult hospitals and while I'd definitely prefer that to the terrible sickness I get with general anaesthetic, I'm pretty keen to delay my first experience of being awake during surgery, or surgery of any kind come to that! 

After that I was busy catching up with everyone I hadn't seen while I was working on my assessments at uni, including spending some quality time with my mum and enjoying the luxuries of home the biggest of which being the bath! Although obviously my mums cooking is probably the best thing about being home. 

I had a lovely Christmas and I was healthy!! Which is brilliant! I had a lovely Christmas Day with my mum and her side of the family and then I went to my dads on Boxing Day to see his side of the family. It was a good two days and I really enjoyed myself. I love Christmas so much and it's always nice to get together with the family. Even better when they come bearing gifts! I got so many lovely presents and I'm really grateful to all of family and my boyfriend for buying me such lovely things! I got a lovely bag from my mum that's covered in ring pulls from cans, it looks really cool and the proceeds go to good causes. I got the headphones I asked for, a Kurt Geiger bracelet I asked for, a lovely necklace that was a complete surprise and an awesome feather quill from my boyfriend, a little make up bag from my mum that has the exact same pattern on that our family sofa had when I was little, lots of nice warm things like gloves, socks, slippers and woolly tights, the usual ton weight of chocolate and fudge and lots of lovely smelly stuff for the bath and shower and some lush goodies! (On that note: How good does Lush's snow fairy smell? Blimey I've heard people go on about it but boy does it smell good, it's like cotton candy heaven!) And I've got a topshop gift card to enjoy spending in the new year as well which is nice as I don't have much disposable income for new clothes these days.

I had problems with my chest as usual over Christmas but nothing too bad, mostly just because of the lack of sleep from all the excitement! Definitely looking forward to a nice rest. I don't have any plans over the next week other than to relax so I'm going to enjoy that, spend some time with my mum and chill out catching up with all the Christmas television I missed while I was busy being sociable.

I hope everyone had a brilliant Christmas and was healthy too! 

Summer Trip

I always get a bit nervous planning a trip, paying for a hotel and tickets to something. I always seem to get ill at the wrong moment. When I was 7 I was all ready to go to Disney World in Florida with a charity that takes sick children for a once in a lifetime holiday, when I right on cue I got sick and couldn't go. Luckily they did the trip every year so I got to go the next year. I remember the woman who ran it being worried about going through trying to get me insured to fly again. As soon as an airline company hears you've got heart and lung disease they don't want to know! I think if they weren't a charity that wouldn't have managed it. If that had been a family holiday it would have been a disaster, no money back and no holiday! And at Christmas I was planning a trip to London for a bit of site seeing and going to see War Horse, but I came down with glandular fever and couldn't go, which I was really sad about. But I'm hopeful that I won't fall ill for this one. I'm not allowed.

So I'm planning a trip to Oxford at the end of August (not long now!) for five days with my boyfriend. I'm really excited to be going somewhere. I can't really go abroad because if I got ill, the last place I want to be is stuck in a foreign hospital with no one knowing my history, and as I've mentioned flying is difficult because of difficulty with insurance and problems with taking oxygen on planes. But luckily I don't really have a strong desire to travel, there are so many beautiful places in Britain to visit. Oxford being one them. We're going to spend four days in Oxford and then on the second day we're going to go to The Making of Harry Potter Studio Tour in Leavesdon, which is about an hours drive from Oxford. This will actually be my second time at the tour but it was so amazing the first time I went that I'm even more excited this time around and my boyfriend hasn't been so we just had to go. If you're a Harry Potter fan you definitely need to go, even if you wouldn't really consider yourself a 'fan' but want a good day out, it's perfect for that too. You won't believe the stuff they have there. They must have been planning this for a while because they've kept pretty much every prop and set they built for all of the films, and it's quite surprising the things they did actually build. One of the tour guides said they actually have more in storage that they're going to bring out later on to mix the tour up a bit. And if you're registered disabled, phone the ticket booking line and you'll get a carer in for free! They don't have to be your official carer but you do have to bring proof of Disability Living Allowance when you go. There's good accessibility there, it's all flat and there's ramps between some of the rooms but there aren't stairs anywhere so you're still in the midst of the crowd. There aren't many places to sit down though so if you have a wheelchair I'd advise bringing that. It's organised quite well so it didn't seem insanely busy, and it isn't difficult to get the wheelchair around. No less difficult that your average shop or museum anyway. 

We're going to decide what to do around Oxford when we know what's happening with the weather as some things like hiring a boat to go down the river or visiting the botanical gardens we can't do if it's raining. Hopefully my energy will last the whole five days. After feeling pretty good for a while I'm starting to get tired a lot again, but I still feel like I can push through it quite a lot. I find that there's tiredness and Tiredness, there's feeling a bit flat and lazy and there's not being able to do anything, a kind of fatigue that just takes over. When I feel like that, I don't get bored lying around because I know that's what my body needs. Thankfully I haven't felt like that for a while now, and I don't get it very often but I do have my days. But I think Oxford is going to be good. I think there's a certain amount of mind over matter when there's something you really want to do. 

So wish me luck! I have another appointment with the palliative care team this week so I'll probably do a post about that if anything interesting happens. Bye for now! 

Transplant Awareness Week and Updates

Right, this week is transplant awareness week so if you go to your nearest hospital outpatients you'll probably find a group of lovely people raising awareness of transplantation. It would mean the absolute world to me if just one of you signs up to the organ donor register. If you're in the UK you can simply click on the link on the right side of this blog. If you're not, head to google. All you have to do is fill out a form. If your uncomfortable with a particular organ being taken, I know eyes are a bit of a weird one if you believe in an afterlife, you can just uncheck that box and you can just give away what you want to. Then they'll send you a card that you can just pop in your wallet and then you can start telling everyone else to do the same!

The circumstances in which you need to die for your organs to be able to be donated are so particular that the amount of organs available to people like me is really low. You have to be proclaimed brain dead but be technically alive on a heart and lung monitor. There is no activity in the brain but blood is still being bumped around the body. This is how it needs to be for your organs to be donated to somebody. What is really important is for you to TELL YOUR FAMILY that you are joining the organ donor list. Putting it on Facebook or something is a great way to raise awareness and also let's your friends and family know. Talk about it properly with your next of kin because a great number of donors on the donor register never have their organs leave their body because, quite understandably, their families aren't comfortable with it. It's a very upsetting time and they're not thinking about people like me, they're thinking about their son, brother or friend and who can blame them for wanting their loved one's body to remain in tact. But given the chance to talk about it with you, know that that's what you want, they're going to be a lot more willing to give the transplant the go ahead. 

At a visit to the hospital yesterday I met a boy, a little older than one, that had recently had a heart transplant. He now looks like any other boy his age. The only clue to his ordeal is the top of his scar just visible above his shirt. He'll be extremely lucky to make it into adulthood but he's been given a healthy, happy childhood that he wouldn't have had otherwise. He spent the time leading up to the transplant on a heart and lung monitor waiting for a matching organ. Time is short and more donors are needed. So signing up and getting your friends and family to do the same will make a huge difference. If you're not suitable to donate perhaps consider looking at donating them to medical research. Obviously I respect your right to decide what happens to your organs when you die and if donating your organs is not for you you're free to make that choice but if you're happy to donate, please sign up! 

As I've said I'm being considered for a double lung and heart transplant. For this the heart and lungs have to come from the same person so it's just a little bit harder to get a healthy heart and lungs from the same person. They do very few heart and lung transplants and they're usually done on people with congenital heart and lung diseases, which are rare. There are currently around 16 people on the active list and they tend to do around 4 a year. And still people are dying on the list. So donors are still needed quite desperately. 

On to updates, Sorry I've not posted this week. I've been having a little holiday in Swansea, enjoying the lovely sun we've been having here in England. Which was made even more enjoyable by the fact that my chest pain has got so much better. Unfortunately I had a bit of a sickness bug as well but you can't win them all! I was feeling quite happy and had a bit more energy than normal, which always makes a massive difference to my life. I'm having a good week, I think. I just hope this heat isn't going to kill me this week because my lungs don't tend to cope very well and I tend to need quite a lot of sleep and it's too hot to sleep in at the moment.

I've also been busy moving out of university and am now officially home for the summer. It's going to be nice seeing everyone a bit more now I've got time on my hands. Best of all I can now write on my own terms without being pressured to whip things out for assessments. I've got a few things once go and it's really nice to have some relaxing writing time without looking at the word count every few minutes. 

I'll be finishing part two of my life in operations this week, so keep a look out for that. 

Now go and join the organ donor register!

Thanks for reading.