The Things That Made Me Happy Last Week

It's positivity time again! It's been another good week and these are the five things that made me happy!

1. Going to Bath to see my brother. 

I went to Bath on Tuesday with my mum and my gran to visit my brother who I haven't seen for a while. We had a lovely meal in the Pump Rooms, which is a really old building my Gran used to go dancing in as a young girl but now does lovely food and cream teas. And we had the most amazing coffee in a little indepent shop. You didn't need any sugar, it was that good! When I went to use the bathroom I heard the people who work there discussing how the PH of the water you use affects the taste of the coffee. Bath is great for little gems like that. We've had lots of meals out this week because I've had so many hospital appointments this week. Mum and I always have some nice food after just so the day isn't all about hospitals. 

2. Seeing the tall ships! 

In my city we have some lovely Victorian docks and every now and then a film company wants to do some filming there. We have a tall ships festival where some old Pirates of the Carribean style ships come in. This week they're filming some of Through The Looking Glass there and they've got the tall ships there at the same time as part of the set. We went down on Saturday to have a look as they were all set up for the filming, which started this Monday. It looks really impressive and we got to see the ships there with all the props set up around them: crates, barells and piles of rope, as well as some modifications to the old buildings to make them look older. Everyone's all excited about Johnny Depp because the press keep saying he's coming but as he plays the Mad Hatter I don't think he's going to be in any of the Victorian London scenes. But it's a big film so there will probably be some famous faces around. The press also reported that Tim Burton would be there but he's not directing this one. He's well known for never doing sequels to any of his films. But as a film studies student I'm interested in sets and things so I'm going to see if I can get down there when they're filming if I can but if I'm too tired at least I can say I saw all the sets. 

They used this boat in Pirates of The Carribean too but it has been burnt down and rebuilt since then! 

Sneaky picture on the set! 

3. Not being in hospital 

This should probably be on my reasons to be happy list every week! I would have prefered getting my pacemaker change done on Friday because then it would be all out of the way by now but at least I got to spend this weekend at home and have a nice end to a nice week rather than a scary operation. I don't really get nervous about things before they're happening. I'll be scared when I'm in the waiting room, about to go in, but I'm able to put it out of my mind and enjoy the weekend. So that's something to be happy about.

4. New clothes! 

My lovely mum treated me to some clothes from topshop after we had the bad news of my pacemaker having run out of battery. A lot of my clothes don't really fit too well anymore and because my belly is swollen some of my tops just don't look right anymore. So we picked up some leggings that fit nicely, some little summery jumpers and some desperately needed cropped vests so I can wear short tops without looking a bit strange with a long vest underneath. I struggle with bras because I feel like I can't breathe in them and my swollen liver becomes very sore if I wear anything remotely tight in that area so I wear vests a lot with any tops that aren't quite as modest as I'd like. I feel nice and pretty and comfortable in everything we got so I'm very happy. We used the points on my Raymond Blanc frequent diner card (I am aware how posh that makes me sound!) so as we got lunch for practically free we didn't feel guilty about a little clothing splurge. 

5. Chinese night

Yes, it's that time again. Once a month my Aunty and I got to my Gran's with Chinese takeaway and have a lovely feast followed by a long chill out on the sofa. I love Chinese food so it's a great little monthly treat. It's such a nice takeaway, nothing is too greasy and it tastes really good. It's a naughty treat but it's a good one! And having a nice evening with my Aunt and Grandparents is the icing on the Chinese cake!

5 Things That Made Me Happy This Week!

1. Baths

The simple cure for cabin fever is a good bath. I can't explain how much I'm loving baths at the moment. After a bad day a good lather of soap and a scrubby sponge is all you need to wash away the worries of the day. After a good day, what better way to relax than a sweet smelling bath? Sitting around all day feels a bit icky and dirty and no matter how ill I feel, I can always have a lie down in a bath. With my liver being so swollen it's the only time of the day I can get it to stop hurting. The warmth and boyancy of the water really takes the pressure off. It makes a lot of difference having that time without any pain. My liver isn't agony by any stretch but being uncomfortable 24/7 isn't pleasant and having that hour off makes it pretty easy to deal with.

I love a good smelly bath and I don't get much luxury in my life at the moment so I feel more than justified using up all of my lush products. I love lush for many reasons. They're a lovely green company started by a married couple with a great sense of humour. And their products smell amazing and do great stuff for your skin. Even the bubble bath makes my skin all soft and lovely. I was never that interested in moisturising until I smelt some of theirs. Nice smells and nice skin is the way to keep a girl happy! 

2. Swimming

On a similar subject, I went swimming on Thursday! I say swimming in the loosed sense of the word, what is actually did was float around. But my muscles feel well exercised and I didn't get too puffed out, which is great. The reason I went is that once I have my line put in I won't be able to go swimming anymore. Firstly the infection risk is high when your submerging something that has direct access to your heart in water that people have probably peed in. Yes the dressings are waterproof but they're not really designed for submerging, more a light shower or a quick wash with a damp flannel. There's also a risk bacteria could get into the line through the open end. For me there's extra reason because I'll be on a pump that can't be removed for more than a minute or two while refilling the medicine and I imagine it wouldn't appreciate being submerged in water. I know what your thinking but I can thankfully still have my baths. (That was the first thing I googled! Even before, how much does it hurt?). As long as I don't have it super deep I should be able to sit and lie in the bath with access site out of the water and I can just put the pump on a stool next to the bath to keep it out of the way of the water. Though it's a good idea to use clean water from the tap to wash my chest rather than the bath water. The good news is they're no longer putting the line in this week so I can go swimming again! I'll be having the line in the week after now.

3. Sunshine

I have a bit of a love-hate relationship with the sun. Or rather, I like the sun but the sun doesn't seem to like me. I come out in sore and itchy rashes after as little as ten minutes under the sun. So I have to coverup with a shirt and stay in the shade when it's hot. I used to only get it three or four times a summer when I was a child but the last two years it's really gone mad and it's like I'm completely allergic to the sun now. I also burn really easily. Last year I burnt my arms sitting in the shade with factor 30 sun cream on. So I can't really enjoy the sun to the fullest but it's just so lovely to see it shinning out there and relaxing in the shade with a cold drink is lovely. Everyone's so much happier when the sun is out and I feel my mood lifted too. As long as I avoid the dreaded heat rash, I very much enjoy a hot summer's day. 

4. BBQs

Like every other British person, we had a BBQ this weekend. In fact we've been having them all month. My mum is brilliant at BBQs. Everything is chargrilled and tasty, rather than burnt to a crisp and raw in the middle. They're just so good! We probably use the BBQ more than we use the oven in the height of the summer. There's just nothing better. We had my grandparents over on Saturday for a BBQ and it was the most perfect day. I felt really good, I usually start getting tired an hour into any kind of social gathering but I felt good all day apart from being insanely full after we'd eaten! It's always nice when I'm feeling well when I see my Gran because I know she worries about me. We've always been really close and I just love her to bits. It's not nice having everyone worried about you when you're ill but at least you get to see how happy they are when you feel better again. 

5. Papworth

The last that made me happy this week was going to see my transplant team at Papworth hospital because they were really positive about everything. Obviously I'd had a bit of a rough patch and I wondered if they were going to freak out about it. But they just said it was great how well I'd recovered since being in hospital. They want me to gain weight like everyone else but they weren't really pushy about it. They trusted that I was doing all the right things. Sometimes I feel like doctors think I'm a complete idiot. I have to assure them I'm looking after myself. As if I wouldn't be trying my hardest to stay alive long enough to get my transplant call! So I was really happy with that. And the appointment was really fast too so I was back home by 5 0'clock. I was expecting to still be at the hospital at that time! 

These are all the things that made me happy this week! It's been a good week! 

Life!

I'm sorry I haven't blogged in a while. My chest pain has been pretty constant and draining during the last few weeks and I haven't been up to doing much. When I have felt like writing I've had to get on with the four assignments I've got to submit in a months time for uni. They boasted for the first couple of weeks that they'd tried their hardest not to have all our assignments due in at once, but they've obviously failed quite miserably at that! I've been working on the 9,500 words of assignment and I've actually made pretty good headway at getting it done. I've finished one assignment, got the first draft done for another and started another, which I'm quite happy with because I don't need any more stress because that always makes chronic pain a lot harder to deal with. 

Today, I decided, to hell with it I'm going somewhere. After deciding not to go out all at for Halloween and firework night because they cold makes my chest exceptionally painful, I decided that the Christmas light switch on in Bath was something I should go to. And I'm so happy I did! My boyfriend and I had a nice lazy walk (I say walk in the loosest possible way as I was in my wheelchair but there's no word for that) around town, had a look in some shops and bought a warm hat to see me through the evening. Then we got into the warm and had coffee and a chat. Then braved the cold again for the main event. The light switch on, which this year starred Mary Berry along with a band and a gospel choir. Simply because we came at Milsom Street (where the event was) we ended up being allowed by security round the side of the stage without too much of a crowd and later the security even asked everyone to get out of the way so we could have a good view from behind the gates. We stood (again I'm using wrong word, I sat) by this really lovely woman who was also in a wheelchair and had the sweetest little 6 month old baby on her lap. We got a bit of press attention too, which I always find a bit odd as they wouldn't have looked twice at us if we weren't in wheelchairs but it's pretty cool still that I might end up with my picture in the local papers. 

The switch on show was really good, lots of Christmas songs to get everyone in the festive mood and then of course the highlight for everyone, Mary Berry! I love The Great British Bake Off and I love Mary Berry because she reminds me so much of my Gran. They were even both born in Bath and around the same age I think. My Gran is a massive fan of hers too. They're just both the sweetest women you can imagine. I think everyone would love to have Mary Berry as their grandmother. The best thing was that when she came down from the stage she walked towards us and started mingling with the crowd. Where we were was the only bit that wasn't fenced in so she was able to come right up to us and she shook my hand and asked me how I was and then my boyfriend asked if we could have a picture together and she said yes!!! I could barely contain how happy I was! My boyfriend managed to get a really good photo of us, which I will treasure for ever. It was just the prefect end to a lovely day. And I'm just so glad I decided to go out today because if I hadn't I wouldn't have had the lovely day I did. As it turned out my chest wasn't so bad in the cold, though you can see in the picture I'm pretty well wrapped up! But it was probably more to do with the excitement of seeing Mary Berry and having a lovely day that took my mind of the pain. It's hurting now as I lie in bed writing but I can have a swig of morphine now that I'm safely in bed and it doesn't matter if I fall asleep.

Before I start talking about what's happening with my chest pain, here is the photo: 

The press were also snapping like mad at this point so I might see this photo in one of the local papers too! 

I'll fill you in on what's happening with my chest, while I'm in the blogging mood. I went to the hospital to see my usual specialists but as usual they don't know anything. They seem pretty sure it's my pulmonary hypertension causing it but what the exact cause is remains a mystery. I always seem to be that person who just doesn't make sense at all! I go against pretty much everything ever written about heart disease and PH. To be honest I'm more concerned about pain relief and my palliative care doctor seems to have been a bit quiet for a while. Until this morning that is, when she suggested using a morphine patch. (As if I don't look enough of an addict as it is with my bag constantly full of syringes and tablets. It sure is going to look weird if I'm wearing what appears to be a nicotine patch and an oxygen cannula and I'm only 20 years old!) The liquid morphine isn't working out very well for me though. I took it at the beginning of the year for long periods and felt fine but this time I'm really feeling the drowsiness side effect, which is very frustrating. But the patch sounds like a good idea as it doesn't have the highs and lows of taking conventional forms of painkillers. Where you're in pain you take some, the pain is subdued and then the pain is back, which makes is the main reason it can become addictive and as pain management isn't as effective as slow release forms. (For anyone who is worried, my doctor told me it's virtually impossible to get addicted to morphine when you are using it for pain, it's when you take it when you have no pain that it effects a different part of the brain and it's then that addiction may be caused.) I don't know when this is going to happen but she said she wants to see me to discus other options so I'm not sure if these patches are going to get to me that fast. That is the most annoying thing about the healthcare system, everything takes a ridiculous amount of time. "Hello, I'm in constant pain here!", "so we'll see you in three weeks, okay?"

So I'm just waiting for things to be sorted at the moment but I'm getting out, which is good for my sanity, and I'm enjoying my uni work too. I'm feeling happy, which is the main thing. Just remember, life is for living, take every chance you have to go out there and let life give you the good stuff. Above all, learn to listen to your body, if it's telling you to rest, do it, if it's undecided, go out and have fun and see what it does to you. You don't know until you try, and maybe your body will give you a break. It did for me! 

Bath Christmas lights at Southgate shopping centre.