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!

Five Things That Made Me Happy Last Week

1. The Bake-Off

Yes the Great British Bake-Off has started! The baking competition is back and it's still good. TV has been pretty terrible recently and as I'm nearly always at home doing nothing, I need good TV entertainment. The Bake-Off is one of my favourite shows because it's easy watching and has that real feel good element. And we all need a bit of that in our lives.

2. Spending the week with James

My Mum and her husband went away for a few days so my boyfriend came to look after me. It was nice having the house to ourselves, doing some cooking and lounging around. We mostly rested as I was feeling so tired but it was a really lovely few days and we had some good fry-ups and a Chinese take-away. We went to TGI Friday's one night, an American themed restaurant I used to live as a child, and had a really good meal. BBQ ribs, onion rings and sweet potato fries! I'm not a big meat eater but it really was good and sweet potato is the best discovery in the history of vegetables. Can't get enough of the stuff! (Notice how all my happiness seems to revolve around food? Dieters hate me!) 

3. Knowing my mum had a nice break

My mum does a lot for me these days and it was really nice that she got to have a little holiday because summer just isn't the same if you haven't been anywhere. Before I started the Flolan we didn't think she'd be able to leave me but I'm really glad she got that break and had a lovely time. 

4. Discovering the private booths at my local cinema

I usually book my tickets on the booking machines because if you go to the desk in a wheelchair they sometimes give you a bay instead of a seat and I like a seat. I don't have anywhere to put my drink in my wheelchair! But I'd received some vouchers from cineworld after I complained that they're lift wasn't working and not being informed until after I'd used my Orange Wednesdays 2 tickets for 1 code to buy my tickets so even though I got a refund I couldn't use my code again and had to pay an extra £8 for my tickets! Anyway I had to go to the desk to use the code and they said would I like to use the access booth. Yes please! A private booth and a disabled toilet a couple of steps away, it was much more convinient and let's be honest it's pretty cool getting a private booth. 

It's not the closest seat to the screen but as long as it's not 3D I don't mind. Being on water tablets I really like the close toilet because otherwise I'd have to get whoever is with me to wheel me to the loo in the middle of the film. It's great to know it's there because I hadn't a clue. It's a brand new cinema but it might be worth checking with your local cinema if you struggle with the accessibility of the cinema.

5. Getting my fabric for my new pouch

After I forgot to turn my pump on a few weeks ago I decided I needed to make a pouch with a plastic window in so I can see whether my pump is on or not. This week I got the delivery of the fabric I ordered to make it with. I needed a nice thick fabric because the pump is quite heavy and I don't want it to just fall apart straight away. It's always a worry ordering online but I'm really pleased with it. You'll have to wait till I've finished it to see! 

Things That Made Me Happy This Week

I thought I'd make this a regular post because they're fun to write and it's always nice to think about all the good things that are happening rather than the bad.

1. Eating

Yes! I'm finally getting hungry again. I'm fancying lots of nice things and eating much more by snacking and having bigger portion sizes. Whereas before I'd really struggle to think of anything I wanted to eat, I'm eating pretty much anything that someone wants to cook me now. I've been out for a meal a few times and eaten a full starter as well as nibbling on everyone else's food too! I loved food so much before I had my liver and tummy swelling problems, so I'm really happy that I can enjoy eating again and should make putting on weight a thousand times easier. 

2. Clinic Day

So going to hospital isn't usually a reason to feel happy but my doctors were really pleased with me and reckon I look a lot healthier and happier than when they last saw me two months ago. I hadn't really noticed a change but now I think about it I think I do have more energy now, or at least I feel less lethargic and lazy. They're really hopeful that the new drug might be working already as I look so much better and it might be why my appetite is getting better too. They said flolan usually makes people feel sick so the fact that it's doing the opposite is brilliant. They took the stitches out of my line, which didn't hurt at all so that's awesome and it looks like it's healing up really well. I also attempted the 6 minute walk test so that if my meds start working both me and my doctors will be able to see just how much it's helped. I barely managed 30 seconds but it was much better than I thought it was going to be. I obviously would avoid that kind of exercise outside hospital as it feels awful and it isn't really safe for me to push myself physically with my heart and lungs struggling so much. The fact that I managed not to feel like I was about to die is a success in my book! 

3. Awards

I won an award! My creative writing course at university gives out a number of awards each year and this year I won the Short Story Award! I don't think I've ever won anything individually before. I've had dance medals and things but they were the kind of prizes everyone got, and I always got one of those certificates they give everyone at the end of the year. (Most Outstanding Student of The Year award, thank you very much secondary school!). But I've never won a proper award where I beat other people to get it. It's funny that I won it considering my short story module was the only module I managed to finish and therefore pass this year. Makes up for the fact that I didn't get to finish my second year. I might not have ngot a final grade but I got a nice little award. 

4. Weekend Celebrations

It was my stepdad's birthday this weekend so we had a lovely garden party with all of his family. It was a really good day even though I was pretty tired and struggling with the heat. I had to lie down inside quite a but but I still managed to play a game of croquet, (probably the only sport I can play now!) which was fun and the food was great and it was just nice to see everyone enjoying themselves. The weather was really nice too so it was a really nice calm day, just chatting and chilling out. It was a bit hot for me but I managed not to come out in a rash thanks to a new sun cream I've found! If you ever have trouble with heat rash try neutrogena's ultimate sport, which is an aerosol can of factor 100 plus sun cream. You can only get it off amazon shipped from America but it's worth it to not itch for days after sun exposure. I'm sure I would definitely have got my usual rash if I wasn't wearing it as the next day I went outside and sat in the shade for half an hour and came out in a pretty big rash over my arms even though I wasn't in direct sunlight. To be able to spend more than five minutes in daylight without coming out in a rash will make the summer a lot more comfortable. All in all a pretty good weekend and there's still lots of nice cake left over to stuff my face with over the course of the week. Result! 

5. Healing Powers

My line is all healed up now and feeling good! It took a while to stop hurting when I laid on my left side, and when I reached for something with my left hand but it doesn't hurt at all now, even when I give it a good clean and change the dressings. The wound at my neck just looks like a freckle now. I can feel a bit of hard scar tissue under the skin but it's not painful. I'm also happy to say that I'm so far not coming out in a rash from the dressings. I usually get itchy when I have heart monitor stickers on too long so I thought I might have trouble with the dressings but they're actually pretty comfortable. When they get wet they're a bit rubbish at staying on so I'm making a bit more of an effort to keep it dry and that seems to be working well. 

Nice, clean and tidy wound! The patch is an infection precaution, I'm not sure how it works but it's supposed to reduce bacteria around the line. Makes it look a bit less disturbing too! 

6. Wimbledon!

Yes, Wimbledon has started and I finally have something I can just stick on and relax to. Evening tv is rubbish at the moment so I'm really low on things to watch on catch up, and with the World Cup on most of the quiz shows I usually stick on aren't running. I do really enjoy Wimbledon and it feels like summer has started now it's on. It's quite rare to have a sport where the women's is televised just as much as the men's. I actually prefer watching the women's tennis because the matches are usually under two hours whereas the men's can start to drag on over four or five hours especially when we get to the tougher matches. I'm not sure who I'm backing to win yet. I think it'll be good to see the good old Serena vs Venus Williams final in the women's but we'll see what happens. I feel sorry for people who don't like the football, tennis or cricket at the moment though. There is literally nothing else on tv at the moment.

7. The Bake-Off Advert

Have you seen the advert for the new series of The Great British Bake-Off yet? It is pure genius! Mary Berry cartwheeling across the bake-off lawn is the best thing I've seen on tv all year. Seriously, tv producers, you need to get some good stuff on! I don't think the bake-off actually starts for a while yet but I'm really looking forward to it, as well as strictly, a bit of I'm a celebrity and a new James Corden creation would be brilliant. I really enjoyed The Wrong Mans last year, which was on straight after the Bake-Off. Good tv please come back soon! Anyway here's the Bake-Off Advert if you haven't seen it. http://youtu.be/FMbr-xFMjFo

I hope someone or something made you especially happy this week! Thanks for reading! 

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! 

Updates

“For each ecstatic instant
We must an anguish pay
In keen and quivering ratio
To the ecstasy.

For each beloved hour
Sharp pittances of years,
Bitter contested farthings
And coffers heaped with tears.”

Emily Dickinson, 'Compensation'


I've been feeling a little down the last few days and I'm not entirely sure why. It's made me even more down thinking about how good I felt last week. I think everything is getting on top of me. I've recently been trying out new contraceptives, so my hormones are all over the place, which really doesn't help. I'm worried that this chest pain is just never going to go, or just come and go, for the rest of my life. And I don't want to carry on with morphine if that's the case, because I can't take it forever. I'm a bit annoyed that my doctors aren't coming up with a plan. I understand that they can't wave a magic wand and find out what's causing the pain and they wave it again and come up with a cure. But they don't seem to be taking me seriously. I don't think they understand how painful it is. Just because I'm not rolling on the floor and screaming, doesn't mean it's not seriously hurting me. I mean, come on, I've had the pain for over a month now and I had in for over two months at the beginning of the year, so I've learnt to deal with it. But it still takes over sometimes.

Pain has a really bad effect on the body. I've read up about it quite a lot and I know when it starts interrupting with your sleep is when your body is going to really suffer. I'm starting to find it harder to get to sleep at night. I usually fall asleep to the sound of birdsong but I wake up early afternoon so I'm getting a manageable amount of sleep, it's just a bit of a weird sleep pattern. I live next to a building site at the moment, but thankfully they seem to be having a break because I haven't heard them banging around in the mornings lately. Sleeping way into the afternoon isn't really foolproof because at some point you're going to have to wake up early for something.

I think I'm dealing with the pain okay, though it's stopping me doing quite a lot. I don't think that really helps the old happiness levels either. I hope this feeling down only lasts a short while. It's not usually something I have to deal with because I'm a really positive, happy person. But sometimes it just all gets on top of me.

I really like the poem from Emily Dickinson that I quoted at the beginning of this post. I might be really positive in life but all the novels and poem I read are quite dreary. Perhaps I vent my feelings out by reading sad things and watching sad films, but it always makes me feel better afterwards. My writing tends to be a bit dreary too, but if you don't put your characters in difficult situations, you're going to end up with a pretty boring book. That goes for life too. Things have to go bad sometimes or you wouldn't learn and grow, and you wouldn't appreciate the good things as much.

I've got a load of hospital appointments coming up next week. I'm going back to see my heart and lung doctors. Hopefully I'll get a plan drawn up for how best to attack this chest pain (unfortunately hospitals aren't as well organised as the military). Then on the same day I'm getting my pacemaker checked and I'm going to ask how much battery there is left in it because I think this is the longest I've lasted with the same pacemaker and I'm not sure how long they last these days. I'd like them to change it when I'm on a nice long break from uni and preferably not Christmas so if it's running low I'd rather they do it sooner than mess up my uni work.

I've also got a hearing test the next day. Ah I knew there'd be something I'd forget to say when I first explained all the things that were wrong with me! I had a ear infection when I was young, which burst my ear drum and now I'm almost deaf in one ear. I learnt to lip read quite well when I was young so it doesn't really effect me that much. In any case, I think I've got bigger things on my plate than dodgy hearing. I have a hearing aid for when I have a cold and my hearing gets a bit worse so that needs to be checked and then I get my hearing tested to see if it's changed at all. It hasn't for as long as I can remember but it's good to get checked just in case.

There is literally only one part of my body that works properly or is normal and that's my eyes. I have really good eyesight. I think it's true that when you lose a bit of a sense another sense gets stronger because everyone else in my family wears glasses for reading at least. It's nice to have something that works. Shame it's something that deteriorates with age. I'll have to make sure I enjoy having something about my body that's normal while I can!

So that's it for today. Think this is my longest post! Hope you found this interesting anyway. Comment, follow and stay tuned for more posts.