Monday, 19 August 2013

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! 

Sunday, 11 August 2013

Weight Management

Sorry for the lack of posts lately, I've been enjoying my summer! But I've got a post on weight management if you find, like me, that putting on weight is a struggle. I know, feel free to hate the fact I'm skinny! But it's a problem. And being underweight is as dangerous, perhaps more so, than being overweight. 

I've been trying to gain weight for a while now and I got given the most useless pamphlet by the people at Papworth advising me how to gain weight, back in March. This is what they told me to do. 'Eat lots of processed food.' I guess I should just throw nutrition out of the window then, I'm sure saturated fats are the way to keep my heart healthy. 'Don't eat 5 portions of fruit and veg, limit to 2 portions because they don't contain enough fat or calories.' I never thought I'd see the day the NHS was telling me to not eat fruit and vegetables. 'Eat sugary snacks, and full sugar fizzy drinks.' And watch your teeth fall out as you go. 

Given that this leaflet was the most useless thing I've ever read, I decided to give some help to those in my position. As I said I'm trying to gain weight, but I'll be giving some advice to losing weight too because I know that's a problem other people too, especially when you're on the transplant list as all the risk factors go up once you go above or below a certain BMI. I don't pretend to be an expert in nutrition, quite the contrary, but I've picked up a lot of tips from tv programmes, reading and from my own experience so I hope it'll be useful. I think advice to people trying to gain weight is difficult to find and obviously the NHS aren't giving the most useful advice on this subject.

Firstly let me just say, crash diets don't work. The best way to manage your weight is to make small but permanent changes to your diet and lifestyle. In any case crash diets are not healthy. So here are my tips for managing your weight. 

Don't count calories of grams of fat - Your body doesn't absorb some fats, for example nuts have a high fat snd calorie content but the amount of fat and calories your stomach breaks down is minimal. What you should be doing to checking for saturated fat which your stomach breaks down easily and contributes to high cholesterol. This is what makes processed food so bad. When fatty food is broken down for you then all of it is absorbed by your body. For example when nuts are puréed into peanut butter, your body will probably absorb the number of calories written on the tin. So if your trying to gain weight eating ground nuts or peanut butter will let you put more weight on than eating whole nuts. For those trying to loose it, nuts are a very good snack because they fill you up and don't contain any of the nasty stuff in crisps or biscuits. Choose an unsalted almond, as they are particularly hard for your stomach to break down. Even if you are trying to put on weight, my advice would be to stay away from saturated fat also, because it's not good for you at all and adding bad habits like that to your diet is not a good idea. Keep your takeaways as a treat. 

Making the little changes - for those putting on weight - add butter to your potatoes and vegetables, switch to whole milk and drink a glass every other day, add more meat to your diet, minced meat is good because again it's been broken down so your body will absorb more of the calories. Switch crisps for biscuits, something like a digestive, nothing too sugary to protect those teeth. Eat a larger snack rather than grazing, some cheese and biscuits or a high calorie breakfast bar, or even buying bars designed to be high in calories for climbers or mountaineers. If you're especially worried about your weight and you have a condition that means it's dangerous for you such as heart disease you can get high calorie milkshakes on prescription which is a lot cheaper than buying them yourself and will pack an easy calorie drink. This is especially good if you have a busy lifestyle, but don't use shakes or bars to replace meals, these are simply to replace low calorie or unhealthy snacks. They do fill you up a bit so find a time where it isn't going to interfere with your meals or drink half a milkshake a day and keep the other half in the fridge and build up. Smoothies are good as they are very healthy and contain more calories and less nasties than coke. Choose a banana and mango smoothie or something that isn't too acidic to save your tooth enamel. You might want to consider switching to a pro enamel toothpaste if your going to be eating a lot more fruit than you usually do. This tip goes for those of you trying to lose weight too as smoothies are a good filler and will keep you fuller for longer, but remember to protect your teeth. I actually don't have a tooth enamel so I'm particularly careful about the acidity in my foods. Note that cheese and dairy products will neutralise the acidity in your mouth so cheese and apple is a good nutritious combo for those gaining weight.  

I don't have any particular tips for loosing weight as I don't have any personal experience as I have with trying to gain weight. But how to loose weight is a subject that has been written about extensively. Just eat things that are healthy and add some exercise into your daily routine. Don't skip meals or your body will panic and start storing everything you eat because it will think you are fasting and grazing will keep your metabolism working full out.

I hope this is useful to you in some way, or interesting at least. I found such a lack of advice for people trying to gain weight and I hope that people will find this at least more useful than that terrible NHS advice leaflet! 

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