My Reflections: 10 Things I've Learned in 10 Years!

Good Evening everybody,

I hope all is well with everybody and you're all taking care of yourselves. This past couple of weeks has been pretty difficult for us as a family, something that you should know about us is that we adore dogs. Any breed, size, age, ailment or temperament, we will take them all and this week our beloved Bullmastiff dog Bella passed away, my whole family is devastated obviously, and we all need some time to get over it because she was simply amazing and she was like a person in a dog's form.  I've also started back at university and I'm properly in the swing of things now, looking forward to assignments and praying as hard as I can to avoid drama but that's clearly not working at the moment haha!

The past couple of weeks I've been doing a lot of reflections, looking at my life, my attitude and things I've been through, I've been thinking of making some changes and looking into the possibility of maybe moving house at some point but nothing will be rushed. So, all of that reflections led me to think about everything I have learned form my experiences and wow was I surprised to say the least! We go about our daily lives spilling out the wisdom we've learned to people who need it, want it or who just will listen to it but we never really stop to think "where did that come from?" or "what led me to this?". Therefore I would like to share some of the rings I've learned with you and maybe some experiences that led me to these points. 

It's okay to have no clue what you want to do with your life - This can be an issue for a lot of people to be honest and I've had friends and ex-friends who simply have no idea what they want or can do with their qualifications and experiences but to some extent that's okay. There are people with numerous degrees who still have no idea what they want to do, but sometimes if you just take it a day at a time and just try and enjoy what you're doing as you do it then things will usually fall into place. I must say if you don't enjoy whatever it is that you're doing then you need to leave it, even if that's a relationship or a job just get out because life is far too short to waste being unhappy. 

Not having a boyfriend/girlfriend in school, college or uni isn't the worst thing - For many people this can be pretty much a confidence killer, just as being virgin through school or not going to any crazy parties can make you feel like a loser, not having a boyfriend/girlfriend throughout school can be a major confidence killer. It's not the be all and end all of everything though, think of it this way the more time you spend swooning over a guy/girl the more you are doing yourself a disservice, you would be focusing on YOU! Learning your own boundaries, finding new and fun hobbies, time with friends and family, working harder at school and getting better grades is an amazing achievement. Also most people in school who say they have a BF/GF that they love will likely split up as they aren't mature enough* at that point to hold a relationship down AND those people saying they have lots of awesome sex... yeah? No, they usually aren't and even if they were nobody is amazing at sex the first time they have it, so stop worrying!

Me being a happy and semi-confident person!

Staying true to yourself makes you a much happier person - I can't say much about this one as it is what it says on the can. If you are true to yourself and take part in the things that you like, if you hang around with the people you love, listen to good music, watch awesome movies and wear the soothes you are comfortable in then you will have a much better life, nobody wants to be stuck in clothes they can't stand, listening to God-awful music with people they don't get on with do they? Exacly! I actually learned this when I hit 18 because I had been trying so so hard to fit in at college with the girls in my class and I just kind of realised one morning while the girls talked about sex positions, modern music I had no idea about and what they were doing at the weekend that I thought "my god I'm 18 trying to be 16 and I would be happier at home this weekend with a book, completed coursework, candles on an laughing with my Mam and Nana" so that's what I did and I was totally bloody happy with it!

Making time for friends and family, even if you're super busy or stressed, is usually **always worth it - I included this one because a few weeks ago I met up with my oldest and greatest friend Leanne (Leanne, if you're reading this I still can't believe we have been friends for 10 years!). She signed herself up for the 3 years of gruelling mental torture known as university, although our courses are very different we do know, and anyone else who tries super hard to do well at uni, that uni takes up a high amount of our time and can be difficult to arrange get togethers but she told me that she always made times for her friends and family which is something I struggled with, if i have work that usually comes first so I don't stress about it, but lately I've been arranging more time out with friends, family and  generally just for myself too because honestly it's a welcomed break away, the work isn't going anywhere but time with friends and family is so precious.

People are cruel/assholes/ignorant... at EVERY age - Can't express how many times I want you to read and re-read that back because it's so true, there are so many nasty, cruel people out in that work that it's impossible to shield yourself away from them so growing a thick skin is essential, I'm still working on mine so I am in no position to preach at all but my God what I have definitely helps! Nastiness and childish behaviour doesn't stop at a particular age, it isn't just reserved for children, some of the most digesting comments I've ever received have been from young and older adults... Imagine a child's vocabulary with more swears basically. This kind of this does need to be ignored if it's nothing too serious but discrimination and ignorant comments need report in in the right circumstances such as at work or in a public situation if there is anyone available to report it to. Keep yourself right and safe at all times thought. Also as a side note to this one, if you have friends then they, even after a long time and lots of memories can still turn their backs on you and vice versa. 

Believing in your own strength and abilities is essential if you want to do anything in this world - This one for me, is pretty much the follow on the the above point, hence the structure of this post. If you are going to meet assholes at every stage in your life then you're going to meet barriers to what you're wanting to do, you'll need to overcome barriers and fight for what you think is right. A recent problem with my consultant who diagnosed my POMC has fought me this mores than ever; if you spend your whole life thinking that you can't do something or that you're not good enough then that's all you will ever be because you will never go outside of your comfort zone or gain confidence. If, however, you work hard and believe that you can be do something, even if it is as simple as talking to someone over the phone to order something or ask something then you have taken that step to increasing you confidence, each time you do that it will get easier, you will know that you can talk to someone on the phone and then on to the next challenge it is! If you think that you do have the strength to carry on when you're having a stressful day then you will get through it and getting into bed at night will be much sweeter. 

Money has no meaning outside of its purpose - I like this one. In fact this one is my favourite because it took me longest to realise to be frank. I didn't have many friends throughout school, the ones I did (excluding a couple) were pretty shitty and made my life hell most of the time, but I was so scared of being alone that I would spend a huge amount of the money I received in trying to buy their affection. I would take them on days out, buy them whatever they wanted, make sure if they didn't have enough money I would give it to them. I have needed fuel money to take friends places and asked for help if they took me out of my way but when they didn't help I let it go because hey that's money they could spend on themselves and I'll manage somehow... But the thing is money has 0 value if it's not being used for its original purpose which is to purchase goods, so all of that money I spent on "friends" didn't miraculously help improve our relationship, it just meant they took advantage of me and some of my friends are still doing that now just not necessarily with money but emotional support. The friends and people that mattered didn't care if I had no money at all, we could have a day in the house baking or cross-stitching or reading or even just sitting in silence and that was enough. I wish I'd known that earlier. 

Working hard always pays off in some way - I promise that this is true! If you work hard at something, even if you're rubbish at it then it'll pay off somehow, it might just pay off because you feel good about yourself for working hard but it definitely pays off, and working hard at something will give you a sense of achievement which in turn definitely helps building confidence and self-esteem!

Nothing comes before your health - This is something that I learned far too late in life. Something to know about me is that I went to an absolutely awful comprehensive school, the pupils there were evil, the teachers sub-par and didn't care about anything that was going on. I remember that after being diagnosed with POMC when I first started comprehensive school that my parents got a nurse form the RVI into school to explain to the class and teachers what exactly was wrong with me, one fact being that I would need to eat regularly and drink more, one rule in our school was no drinking in class so I remember getting my water bottle taken away from me and one particular teacher ripped up my toilet pass (a card that lets you go to the toilet whenever you need, no questions asked). My Mam went up to the school and went crazy with the teachers after that because by the time I got home I had held my need to use the toilet so long that a couple of days late i developed a kidney infection and I was so dehydrated I couldn't talk properly. It was then (in year 10 when I was around 15) that I literally vowed never ever to let somebody get me into that situation because no 60 minute lesson about WW2 is more important than my health. The same goes for you, nothing is ever more important than your health, so if you're very ill, mentally needing  break or physically unable to do anything then you have to take that time away, schedule it in if you have to to make sure you get everything done that you need doing but always make sure you have good health because you can't do very much without that on your side. 

You have got to think of yourself - For a lot of people this can be pretty difficult myself included because some people have a natural instinct to look after other people before themselves. I suppose that this point is the accumulation of all of the other points all rolled into 7 seemingly unimportant words. I don't mean that you should take being selfish to the extremes but I do mean that in everybody's life there comes a time when you simply have to put yourself first. There are so many reasons people can choose to put themselves first, some people do it when they're sad, others when they're angry or stressed or distressed or happy; I find that putting yourself first should be a running theme throughout your life, it should involve self-care and support; I put myself first by not allowing people to take advantage of me the way I used to and taking time to get to know my limits and boundaries so that I can stop people getting in the way of my happiness, if someone is going to cause upset or difficulties in my life then get rid of them because like I said at the beginning... life is simply too short. 

Our gorgeous Belle <3

So, there we have it, those are the 10 most important things I've learned in 10 years (from 12 years old to 22) and I hope you guys have really enjoyed reading this post because I loved writing it! Please come back next time and have an awesome week until then! As silly as it may seem to some, I am dedicating this post to our beautiful dog Bella Savage who passed away 08.02.2018, she really was the best friend a person could hope for and she will be more then missed. 

Love, Katy xo

Staying Positive: See the Silver Lining!

Hey everyone!

I hope you're all doing really well, and the first month of your New Year is going awesome! I'm writing this post today because I'm aware the past couple of weeks have been full of emotion for people in my family, and all of my friend groups in some way as many of my friends and most of my immediate and extended family have some pretty serious health problems, I know these issues have been getting my loved ones down and they are struggling to see the bright side of life and to me that is just awful to see. 

It's so important when you have ill health to look at the positive things you have, for example yesterday I spent the day with my best friend and her partner, Nana and Simon baking all day, we both made lovely cakes and if you want to see mine head over to my personal instagram and it's the most recent cake picture! I made a beautiful white chocolate lemon drizzle cake and it smelled amazing! Me and my friend can't eat our cakes, she seemed quite frustrated at this and admittedly when you love cake and know you can't have it or taste what you've made it is very annoying, I can't eat my cake because it isn't worth it in my opinion, if I am going to eat something less healthy than usual I will wait until there is something that truly takes my fancy; albeit those times are few and far between but it makes me appreciate  and enjoy it more for waiting. The thing is everybody on earth has their own cross to bear in terms of their health but something I think is so essential when dealing with your lifestyle when you're chronically ill or have a long term/lifetime illness is that you've got to see the positive side of things even if sometimes it feels like you're fighting a losing battle.

When I first made changes to my diet it was super difficult and after years not not eating very well, or at least as well as I should've been, I was miserable for a long time because I thought I had to cut out foods that I love, like cakes and bacon but I did a lot of research and I've found so many different cake recipes that barely use any sugar and taste really good, most of those are vegan cakes which although they may not be ad indulgent as some other cakes hey I still get to eat cake! Plus vegan diets are recommended to some people with PCOS to relieve symptoms so I'm in a way being a little healthier than I would be if I made a Mary Berry cake. In terms of bacon just changing how its cooked and the kind of bacon makes a huge difference to a diet, I can still have things I loved but they are more strictly moderated and cooking techniques and products use to make my meals are slightly different. That is one of the ways that I tend to se the positive with my dietary changes because that was one of the most difficult things to cope with as it was such a major change for me as I like routine and at the time didn't eat a lot of different things.

Another positive thing is that although I can't eat my cakes I get to have so much fun baking them and trying out recipes, Simon is my personal tester and it's so awesome watching people eat and enjoy the food that you've made, the smells are wonderful the colours and textures are awesome! One of my favourite quotes, I don't know who by, is "life is not about wiring for the storm to pass, its about learning to dance in the rain" and that really resonates with me and I would definitely suggest that others remember this quote when you're feeling down. Every time something negative happens or you're feeling generally crappy just take a minute to think about the positives of the situation.

Image from Google.com

For example I had a friend a while ago who started on a treatment that involved daily injections, her way of seeing the positive is that she was scared of needles and at least after the treatment she wouldn't be scared anymore because she would get used to the feeling! That's an awesome way of looking at things if you ask me! My Mam has M.E., a basically null immune system, hundreds of allergies, epilepsy and lots more wrong with her which means she doesn't leave the house much, from this she has learned new sills and gotten really involved in arts and crafts, and although her life is a major struggle at times she has still gained a wonderful new hobby from it all.

Seeing the positive in the negative can change your outlook on life massively, honestly I'm planning  few posts within the next month and I'm very excited about them, during the planning of them I've realised how much I have truly changed and how positive my outlook on life is now. I'm hoping that if anyone reading this is feeling down at the moment, for whatever reason, that this little post does help in some way and if you're feeling low because of ill health please just remember that you're still alive, you still have people around you who are happy to see you turn up to work, or school or uni everyday, people who are happy to have you say hello to them or even just people who are happy that you managed to get out of bed this morning, that's an achievement in itself and I really mean that. In the next month I've to have a couple more posts up and while I was planning them it's been a real shock to look through some of my old stuff and see how much I have truly changed and now much more positive my life is now.
If every anybody needs some support or to talk please go to my Contact Me page and reach out to me because I will ALWAYS be willing to listen if you need to talk. I truly hope this post has helped someone out there because even the smallest of positives can make a huge difference.
Please be safe everybody and remember to see those silver linings!
Love,
Katy xo

Changes and Hopes for 2018!

Good Morning All!

Not my image! Image found on Google.com

I want to start by saying that I hope everybody has had a wonderful Christmas and hope you're all looking forward to a great New Year! Our Christmas was fantastic, I spent a lovely morning and had lunch with my family and we then went over to Simon's family for the rest of the night, lunch as per was awesome and spending time with all of our loved ones was just perfect. Myself and Simon were completely and utterly spoiled and I can't thank our families and friends enough, we will have to treat them all in the new year.

I'm definitely looking forward to the New Year, I went out with Simon and his friend a few weeks ago and my mood was not positive; I was feeling really depressed and quite hopeless, I think Simon was too at that point to be honest. Both of us had been going through a very difficult period which was impaction on our relationship at the time, something Simon's friend said to us really hit home with me, I can't remember the exact words but he basically said that when you step back form the situation and find the things you like, use the knowledge about yourself in a productive way you can make 2018 the best year ever, it's ours to make basically. He is totally right as well and we just hadn't really looked at it through the lens he uses before. He's an awesome lad, can't say that enough. 

So, with that in mind I want to talk about New Years Resolutions, something I'm sure many many people will be akin this year. Thing is, I don't make resolutions because I don't like the idea of 'letting myself down' if I can't stick to them, but this year some changes really need to be made, therefore this year I'm making some changes, and some promises to myself, that I think will make my life better and make my 2018 as happy and healthy as possible. Here are some things that I'm hoping to accomplish this year.

Improve my health - I'm not the most unhealthy person alive but neither and I the healthiest I could be. There is little I can do about my POMC until the time is right and new treatments are available, new options given to us all; however, there is a lot I can do to improve other aspects of my health to make me happier and more able. I need to mix up my diet, although at the moment it is very restricted, I would like to speak to dieticians to see if I could add more nutritional meals into my diet or even more interesting ones, eating the same thing constantly can get boring. Physiotherapy is on the cards as well as I want to be able to stand for more than 5 minutes without pain coming on, posture is something that needs looking at as the curve in my spine impacts that a lot, I think physic would be a good thing for me even if it's not a cure but a help. Counselling to keep my mental health on track is something I also want to get into, there is absolutely nothing wrong with trying to keep your mind healthy, I still have battles with low self-esteem at times and that's something I'm hoping to overcome this year. In terms of health I also need to be much more forward in telling the doctors what I need instead of just agreeing with their course of treatment, that is a very important one for me. 

My book on how to live well the Danish way! Exciting read

Change my mentality - This is a big one actually and pretty much goes hand in hand with the counselling aspect of the above mentioned point. I really need to change my mentality around... well everything. A little fact about me, I let people take advantage of me all the time because I don't have the confidence to stand up and say no. I've put myself, and in some instances, Simon, in very awkward, difficult and uneasy situations due to my inability to say no. Something I need to take heed of is the fact that if somebody else chooses to do (or not do) something because I'm not then that decision isn't on me, everybody is responsible for their own actions and I want to work on my ability to not take everything to heart. I need to be kinder to myself, I often think I'm a terrible person, berating myself for the smallest of mistakes, I put too much pressure on myself at uni because of this. I'm human too and this is the year I want to accept myself completely, flaws and all. Sometimes I try far too hard to please other people and get upset at criticism but I also want to try and be myself more this year, if I don't want to do something I won't. I should get back to my knitting, cross stitch, back into my reading and such. I got a book for Christmas about the Danish way to be happy and I can't wait to read it! 

Spend more time with family - Time with loved ones is precious, all time is precious but it's even better in the company of those you love most. Unfortunately there are some people I'm often surrounded by that, for my own mental health, I am going to have to step away from, regardless of the nature of our relationship some people just are not good to be around. Constant arguments, belittling, lack of support and compassion is not the kind of attitude anybody needs to be around. Therefore, this year I will be spending my time with those who truly matter, those who are there for me and I for them, I've heard over and over that surrounding yourself with good people is the best possible thing you can do for yourself, 2018 will be the year I take that advice and test that theory. Simon's family are included in that as I love them as my own and always look forward to spending time with them as well. It also includes spending time with friends, these are the people who help you up no matter how far down you fall and those people are hard to find, keep them close I say!

Be more of a 'YES!' woman - I remember watching Jim Carey's 'Yes Man' movie years ago and as much as a lot if it was so cringey (and still hilarious to me) you've got to admit he was much happier when he started just saying yes to the little things he usually would have said no to. This year I want to be a yes woman, I want to say yes to more days out and going different places without worrying about the price of things or how many days I have left to do my essays... I always get them done at least 1 week in advance anyway. I also have plans to start this little promise to myself as I want to go to the Hancock Museum in Newcastle, I hate history but love the cavemen, dinosaur type history, so that would be fun. I also want to go to a couple of art galleries, more movie nights out, trips to weird and awesome places. Another side promise to go along with this is that I want to make a scrapbook, or at least take more pictures to keep these important memories alive.

More me time/Learn to step back - Finally, I think something that I have been meaning to do for a long, long time is take more time for me. I love Simon and he loves me but everybody in a live-in relationship needs their own time and we don't get a lot of it these days with uni, family, work and everything else going on. So, with that said I want to take more time for me and learn to step back from situations that I need to remove myself from. I have already thought of how I can do this, I am at my happiest when I am listening to my music, this year I had to invest in a new iPod Touch as a replacement for the best piece of technology ever created... the iPod Classic (screw you apple for discontinuing those!!), so I've bought myself lots of new albums and I am ready to go! I've packed my personal care boxes full of body butters, nice smellies, my craft box is full and I'm fully prepared to give myself some me time in whatever way I fancy!

So those are my little promises and hopes for 2018, and you know what? It doesn't matter which or how many of these promises I manage to fulfil because even one of these things will make my life a little better. I hope you all are looking forward to a brand new year! Thank you all so much for reading and please let me know what your promises/wishes.resolutions are for 2018!

See you soon guys! xo

Christmas in Our Household! A.K.A. I'm So Excited!!

Evening all!

This post is up slightly later then anticipated only because I've been getting the last few bits and bobs ready for Christmas, my gosh I am so so excited for Christmas!!

This post is pretty much going to be all about how our family does Christmas to be honest, it's the best time of the year for the whole family to be honest, we just love it so much.

Christmas has always been my favourite time of year because I absolutely thrive in cold weather, while everyone else goes around grumbling and muttering about how awful the weather is I am just completely in my element. Don't get me wrong I love Halloween and all the other holidays throughout the year but as soon as Halloween is over I put my Christmas tree up on November 1st, I still laugh when I remember Simon's reaction when we first got together and I put my tree up that day, he had slept at my house because we got home late from a Beamish Halloween event and he was partly loving the spirit and partly in disbelief that people do that so early haha! As you can see it looks like there has been an explosion in a Christmas factory looking at my Nana's living room and tree! Isn't is awesome?!

 

At school I had a friendship group who always called me Mrs. Claus, I loved that name, best thing I ever got called at school. 

Anywho, it's two days away from Christmas day and we are all in full Cheer mode in our house, because my birthday is so close to Christmas the Christmas celebrations don't usually start until the week before. On Monday I had my regular RVI appointment so not much happened until Wednesday really... Me and Simon were so bored sitting in the house and that's no good for any couple usually we get at each others throats if we are cooped up too long so we like to get out and about as much as we can, we decided to go for a small walk around Hardwick Park, a woodland area really close to where we live and honestly it was such a lovely day for it, BITTER cold and barely anyone around. Whenever we did meet people they always smiled and said good morning or Merry Christmas, that's what I love about this time of year, amid all of the rush and hustle and bustle and complaints about the same old songs playing on the radio, there is something underlying, some kind of kindness in people that just sing there any other time of the year. Christmas brings out the best and worst in people and it all depends on your outlook about which side of people you would rather see, I think at least... I might be talking rubbish but Christmas to me is just a happy time. 

Halfway around the walk I started to get pains like usual, my leg felt like the muscles were being for to shreds but on the surface my skin was going numb so I couldn't feel my leg at all, we ended up sitting down for about half an hour until I had some feeling then just doing very very short bursts of walking, what should've been a 30 minute walk turned into a two hour escapade, I ended up crying quite a bit, felt like begging to the clouds "please just make me normal!!" but what's the point? Onwards and upwards so we made the best of the situation, Simon managed to get some lovely pictures, one being of a very majestic looking Robin. 

After the walk we both went to meet a really old friend of mine, we have known each other since school and went for a starbucks, Leanne is such an awesome person honestly, our friendships has never changed even if we have lost touch before; I adore those kinds of friendships ad I'm hoping we can plan another catch up day as soon as possible. We ended up swapping each others presents and cards for Christmas and heading off home after a chin wag. 

Not much happened on Wednesday after that so we ended up watching Christmas TV shows like 'Friends' and 'South Park' episodes which was lovely. 

Over the last couple days I've been taking my nana shopping for Christmas food, the best part of Christmas, I love spending time with my nana she is such a strong and amazing woman and I'm blades to have her in the family to be honest, she's pretty hilarious too, whenever I ask her for directions you can guarantee her answer will be "oh... it was that last left turn" and we always end up laughing and finding somewhere to U turn haha! I'll be taking her shopping tomorrow as well to get the last little bits and finish up before the big day. 

On Christmas eve we tend to swap presents with friends and make sure everybody has been given their presents, I' hoping we can get out for another walk even if it's a really short walk this time, just so we can get out and in the fresh air. Usually, then I will help grandma tidy up the house as we always open our presents at her house and will be having dinner at my Mam's this year. After helping around the house I will get into the car and go an deliver last minute Christmas cards to friends and family in the village and we will go visiting after, this year because of we have lost a lot of close family over the past two years my uncle will be coming to visit us this year and my uncle Charlie is no longer with us. He was a truly fabulous (in every sense of the word) man. Instead of visiting everyone this year we will be heading to our local church as myself and Simon are practicing Catholics. I always love going to Church and don't have as much tie as I would like to attend regularly as I want. On getting back hope we will grab something light to eat and get a few christmas films on, hopefully this year we can watch 'A Christmas Carol' and '8 Crazy Nights' or 'Nightmare Before Christmas'... Ahhh there are too many to choose from! Then we will get to bed before 12am so we can sleep before Santa comes!!

On Christmas morning my Mam and Dad will wake us up around 6/6:30am because they're big kids and we will have our stockings at the end of the bed to rip into, then after taking an hour (or so it feels) to wake up Nana and Granda, my Dad heads downstairs and "checks if Santa has been", he always has. So, we get to run downstairs and get into opening the presents while everyone sits with a cup of tea or coffee, this usually takes two hours give or take. Then we will gather all the gifts together into our own little areas and call or text everybody to say thank you and wish them a merry christmas. Then the best bit... Christmas lunch!! We will be having lunch around 1/2 this year so not too late, usually after a big dinner  we all sit and watch a film until one of us falls asleep, usually my Granda. Since living with Simon it's been different though, Christmas is split between my family and his so we have Christmas evening ad night with his family, mainly because my Mam is too poorly she can't stay awake too long and gets tired very easily so we get what time with her that we can to be honest. It's always a true joy to see Simon's family as they're all fantastic people, I really do love them as my own. It's a 35 minute drive to Simon's house so we will blast the Christmas tunes as we go and do the same on the way home, usually a little quieter haha. 

When we get home you can bet your last penny we will watch a dvd and fall asleep as we watch. Perfect. 

Boxing day is usually us looking through our gifts and spending the day with families, eating still more food (if you can't eat what a little worse than usual at Christmas when can you?) and just relaxing really. So, that is Christmas in the Simpson/Savage/Steel household.

I'd love to know how everyone else is doing Christmas this year? What are your traditions? 

Whatever you do and wherever you are I hope you have a wonderful Christmas!!

Bye for now,

Katy. xo

Liraglutide: Information and Concerns - The POMC Series

Hello again everybody, 

Stock image from Google.com

I would just like to apologise for the ridiculously late post, there's been so much going on this week it's been mad. I had a second RVI appointment within a month which is very rare for me as I usually get seen twice a year, this was to discuss the drug that I'll be talking about today. It's gotten around to that time of the month again and I'm not going to lie I'm in so much pain I can barely get out of bed and it sucks, other than that I have a skin condition called Acanthosis Nigricans (AN for short) which you only get if you're insulin resistant, the AN for me is on my neck and my upper abdomen directly below my breasts and the skin has dried out and split and resulted in an infection. University is coming up and I've been stationary shopping and preparing myself so, like I say, it's been pretty hectic. 

However, I am back now and today's post will be looking at a possible "treatment" for need of a better word, for POMC, now it's important to note that this drug is absolutely not a cure or a treatment for POMC but I couldn't think of a better word of it at the moment, management I suppose would be a better description actually, but for now I shall get into the post. 

When I was in York taking the call from Professor Farooqi she suggested that because of my rapid weight gain and lifestyle and diet she was concerned about me as a 5 stone weight gain in 9 months is really not good by anybody's standards, she suggested that while I am waiting to be eligible for the Setmelanotide trials (still not eligible at the moment and unsure of when this will be) I should try  another drug called Liraglutide. To be honest her tone of voice when she said "have you ever been offered Liraglutide before?" wasn't something that filled me with hope. You know when someone says something and you know that they know there is a reason you've never been told something like that? Yeah, that's the feeling I got. 

She told me about it, explained that it seems to have worked for people with POMC before and it might be worth giving it a go, obviously I got my hopes right up once again (5th time lucky eh?) and I was so excited to bring my RVI appointment forward to get right on this drug. Before I rushed into anything I decided I would do a bit of research of my own so I wasn't going into the appointment without knowledge, here is what I found. 

Liraglutide also known as Saxenda or Victoza is a drug that was initially developed to be used by those with moderate to severe diabetes and is in the same class as a drug named Byetta, it is derivative of a hormone called GLP-1 which basically stimulates insulin secretion and expands insulin making beta cells in the pancreas. In the beginning the main point of the drug was to drastically cut blood sugar levels and reduce weight in people with diabetes, however after some development the drug is now able to "work on" the MC4R reception, usually faulty in those with POMC which control weight gain and regulation. It was only prescribed for type 2 diabetes until this point, it has since been prescribed to people with POMC and positive results have been seen. Find more information about the drug in general here. The drug itself is very new and a lot of doctors I have spoken t in the last several weeks know very little about it other than the basics. 

Now, obviously I am being given this for weight management as I am not diabetic but I am insulin resistant, those being given this drug for diabetes are given a "normal" dose of the drug usually 1.8mg however people using it purely for weight management are given a DOUBLE dose. Right now, in my head the drug sounds amazing! i can't wait to try it and I'm 100% sure it'll do me some good. However, I also found online that if you have previously been on Metformin, another drug to regulate insulin, and have been intolerant of that, which I was while taking it, you may have an intolerance to Liraglutide, something which dampened my hopes slightly. I was still willing to try the drug though, inroder for the drug to be administered it is one injection each day in the upper arm, thigh or lower abdomen. I would also not be allowed to drink alcohol whatsoever as Liraglutide and alcohol mixed has serious side effects such as increased heartbeat and death. 

Here is where the concerns come in. As I was researching about the drug, as you do, I searched possible side effects and I was so shocked, I will write a list of the possible side effects of Liraglutide in a moment however, the things that caught my eye first is that the FDA, the organisation that approves or disproves drugs has put a back box warning on this drug, meaning that the side effects can in reality cause extremely serious conditions or death resulting from the fuse of the drug. This scared me right away, for obvious reasons, nobody wants to think that a drug that could help them might kill them or cause serious side effects, but because I've taken drugs before that have said side effects could be fatal e.g. Metronidazole antibiotic with alcohol can be fatal, I thought that maybe it was an overreaction. Here is a full list of side effects of Liraglutide:

• Nausea
• Vomiting
• Diarrhoea 
• Constipation
• Upper respiratory tract infection
•  Intestinal and digestive tract problems
• Headaches/migraines
• Sinusitis
• Dizziness
• Back pain
• Flu-like symptoms
• Injection site reactions
• Bloating
• Loss of appetite
• Fatigue

These shown above are common side effects. Less common side effects include:

• Shortness of breath
• Weight gain
• Horse voice
• Lump in the throat
• Throat swelling
• Easy bruising or bleeding
• Infections
• Increased thirst
• Palpitations/Arrhythmia
• Less frequent urination

The final side effects as listed below are the most serious kind of effects resulting from the use of Liraglutide:

• Pancreatitis
• Pancreatic cancer
• Thyroid cancer
• Kidney or liver problems resulting in the need for dialysis
• Death

Up until recently thyroid cancer had only been reported in rats, however humans are now presenting with it more frequently than before, I have decided that I am not going to include any statistics about the drug i.e. how many people have been diagnosed with what side effect because honestly there is so much contradicting evidence online, one report said 19% of patients presented with pancreatic cancer, another said only 1-3% of patients presented some kind of cancer after treatment. One report said people using it for weight loss have lost up to 10 stone and another said the best weight loss seen on Saxenda was only 19lbs in 56 weeks. For me the information is far too jumbled, mixed and contradictory, so until I can properly find out about the real statistics I will not post anything that may not be accurate, up-to-date or correct. It is also important to note that earlier I mentioned that those using Saxenda for weight loss purposes will receive a double dose, these side effects are laid out for those receiving a single dose, therefore it is to be assumed that side effects are more likely to occur when taking double dose of 3mg (according to my doctor at the RVI).

It is pretty obvious to me that this drug is extremely serious and is nothing to be taken lightly, the side effects could end up killing somebody taking it, I have a history of cancer in my family and I'm honestly not sure what to do, if I take it an react badly how many doses before I develop a cancer? Pancreatitis? How long before you see results? Would I need to take a leaf of absence from university? I of I wouldn't be able to work or afford the costs of getting to my hospital appointments as I cannot rely on family to drive me. I'm scared for my health as I cannot afford to gain anymore weight, I'm scared I'll never get to spend my life with Simon and my family, enjoy my time with friends and work in a job I love. I'm scared that my only management option at the moment could be the thing that kills me ultimately. I don't know if I should risk it or not and these are the times I want someone to tell me what to do. I've watched Simon cry because he's scared of losing me to the drug, my condition and such, I've watched my Mam and Nana cry because they can't help me. My head is in bits everyday about this. 

I don't know what to do at the moment but I promised at the beginning of this blog I would keep you all up to date and be as honest as possible about my feelings and how any treatments affect me, I hope you keep reading and please if you get offered this drug for whatever reason think very carefully before jumping right in. 

Thanks for reading and bye for now. 

XO

Exercise tips and Tricks - The POMC Series

Hello everybody!

Happy Sunday once again and I hope you've had an amazing week. Things have been absolutely maid here as Simon started back at University on Monday and I'll be getting ready to carry out more buddy duties this week, hospital appointment on Monday and dentist on Wednesday, feels like things are non-stop to be honest. Well, it means I'm not bored ha!

Anyway, I know I have been pretty delayed in posting recently but what with York and uni I've had a few post scheduling mishaps, mainly because one post that should be coming soon about a possible POMC "treatment" for want of a better word, will mean I'll need to do a massive amount of research on it and a lot of the information online I'm finding quite inaccessible so I'm relying on my doctor at the RVI to tell me a little bit more tomorrow. Obviously there's a post going up today about exercise tips and tricks that I've learned over the years, this one will include information on the best kinds of exercise I've found really helpful and what you can do to make the exercising process easier if you've got a genetic obesity condition. So, without further ado lets get on with it!

Exercising for anybody who is obese can be a difficult and emotional thing, I know a fair few obese people who simply don't want to exercise partly because they are scared of failing in terms of weight loss and partly because if they were to go to some local gyms in my area they are likely to get abuse shouted at them, which I always find infuriating... Why discourage somebody from going to the gym to improve their health when that is what a gym is for?! However, for people with a genetic obesity disease often they can put far too much pressure on themselves to work harder and lose the weight which as I've mentioned in many previous posts, with certain genetic obesity conditions it doesn't matter how much exercise you do the weight just won't drop off like the average person, so this can result in these people injuring themselves or putting too much stress on their bodies. I mean I'm not an exception I've spent hours doing stupid exercises trying to 'drop the belly fat' and lose 4 stones in a month' with crunches and such but it never works. 

Eventually when I got to 18 I realised that because of my disabilities the exercises that I was trying to do were harming my body and making me worser overall, I was trying to exercise to lose the weight rather than to be healthy and that was when I knew I had to change my mindset. The thing is if you exercise to lose weight you're not looking at the big picture, you're only looking at the outside and surface of your body, if you start to think that the reason you're exercising is to get healthier, to be more flexible and fit then you can open your mind to different exercise and routines that are out there and develop something particularly appropriate for you and your body. Getting fit on the inside might help the outside but in all honestly being overweight doesn't mean you're unhealthy, I have friends who cannot walk up the stairs without becoming breathless that are smaller than average sizes and have no medical problems like asthma, then I have obese friends who can walk a mile easily and not break a big sweat. 

I'm going to make a list now of things that I did once I had a change in outlook towards exercise, hopefully it will give some insight into how I managed to develop and exercise routine that is appropriate for me. 

• I wrote down what I was looking for with exercise, I wasn't looking to lose lots of weight just to become fitter and healthier.
• I did a lot of research on what kinds of exercises fit the criteria of what I wanted. Happily I found that Yoga was something that would improve my flexibility, muscle tone and wasn't too strenuous for my body. 
• I took up Yoga and took classes once every week, I started to see a small improvement in areas such as better sleep, my body didn't feel as tense which was a much needed improvement. Yoga has now become part of my daily routine as have some particular stretches; I don't want to do too much exercise as it is extremely painful for my legs and back when I over do it but I do enough to maintain the level of health I have now so my disabilities don't get any worse. 
• I made small lifestyle changes, years ago, rather than parking in the closest bays to shops I would park as far away as I could so i would have to walk father which for a time genuinely did help me, however since my weight gain has not levelled out and I have put more on I am not able to do that anymore, walking in limited for me however I would highly recumbent it for those of you who are able to. 
• Swimming was also a wonderful exercise for me as it tightened up muscles in my body around the stomach area making me feel better about myself, however swimming is also great as you can use it to relax your muscles and just gently bob along! No exercise has to be very exerting as I mentioned. 
• Due to a faulty hypothalamus I overheat and dehydrate extremely quickly so I always make sure I am hydrated and I ensure I take all medication with me such as my inhalers, my pain medication and I make sure I either exercise with someone else or I take my phone so if anything goes wrong I have a way of contacting people to get help. 

I would also recommend that before you exercise, particularly if you have a genetic obesity disorder that you go to your doctor and find out if there is any support from professionals or practitioners who could help you develop your own exercise routine, sometimes if you do it alone you may be a little over enthusiastic and end up damaging yourself. Always remember as well when you are trying to get yourself into exercise, for whatever reason, you won't see results straight away. A cliché as it sounds Rome wasn't built in a day and the fact that you are trying at all is an achievement you should be proud of.

Thank you all for reading and hopefully get the next post out within the next few days!

Have a wonderful Sunday, bye for now!

Xo

My Diet with POMC - The POMC Series

Hello there everybody!

How is everybody today? Hope all is well. Today's post in The POMC Series is all about my diet and how I cope with the hyperphagia caused by POMC deficiency disorder. I've always been very quiet and conscious of my diet but recently I've realised that my diet is actually a lot better than I thought. This post is not meaning to be bragging rights at all, like "oh my diet is so much better than yours" because the fact is it's not better than anybody's my diet is mine because this works well for me, I'm not always excessively hungry every second of the day nor do I skip or miss meals. 

I've heard from discussions recently that some people with POMC tend to keep an extremely low calorie diet and that seems to be going alright for some people and kudos to you if you've found a diet that seems to fit you and your body or needs because that's not an easy thing to do whatsoever, I mean take your average person, you try and find a diet that is satisfying, healthy and gives you all the nutrients you need at 1,000 calories or even much less in some circumstances... it's an exceptionally difficult thing to do, so well done! 

This post is also not going to be a complete run down of every single tiny thing I eat and drink each day because... well that would just be boring for me to write and probably for you to read, however if you would like me to do something like that in the future contact me privately and I shall look into putting something like that together to post. 

Anyway, I shall get on with the post right now. Overall, I've been to countless dieticians, exercise specialists and such, I've spoken to at least 5 different endocrine specialists who deal with my POMC from the RVI, my main doctors and nurses form Cambridge and each doctor and nurse has given me a different answer (with obvious similarities in the case of the specialists) to the question: "Which diet is best for me?"
Over the years I've tried many diets from carb-free, low fat, vegetarian, vegan and gluten free but none worked. Obviously, a dietician will tell me low fat, low sugar, low everything pretty much with a very low calorie intake, however doctors have told me (those from Cambridge and the RVI) that if I can maintain an exercise regimen with roughly equal output to my intake of calories and energy I should be able to manage my weight slightly easier, although it'll still have little effect on weight gain as I've been told with POMC it's extremely difficult to lose and much too easy to gain weight as the body retains as much energy from food as possible. Therefore from all the information I've gathered I've managed to set up a diet of roughly 1,200 calories per day, I've also recently been made aware that a high protein diet, the right kind of protein that is, can help in some circumstances with feeling hungry so often, I was recommended that snacks like nuts and Skyr yoghurt which is high in protein and very low in fat are snacks that may help. 

However, in terms of breakfasts I am, as I've said before unable to eat bread, it's just something about the texture and taste that makes me feel sick so I don't eat much of that whatsoever. I also struggle to eat on a morning at the best of times so breakfasts for me tent to be things such as homemade fruit smoothies and cereals like those high in fibre such as bran and oaty cereals, this allows me to get my fibre as well as getting fruit and natural sugars, my grandfather is friends with a man who often gives us fresh fruit and veg that he grows which is much nicer than supermarket produce, so it's very much homegrown stuff in the smoothies, skimmed or almond milk that kind of thing. Very tasty and surprisingly filling. If you make a larger one as well you could always take that with you to school, uni or work and make it last throughout the day. Stops me snacking at least. 
Again lunches tend to be kept very low in fat, small homemade pasta pots, soups, rice boxes usually keep me going, I love vegetables so grilled veg couscous is one of my favourite things, I usually have some kind of desert to go along with it and I enjoy making fruit boxes so I'll just make a mini fruit salad with different types of fruit or a small pot of mixed seeds and low fat vegan chocolate mixed in, although that one is a treat as I love seeds and chocolate!
Snacks tend to include a lot of nuts and seeds as I mentioned, sometimes I'll just buy a bag of carrots and snack on those until I'm satisfied, more yoghurt or crunching ice cubes are pretty much all I do for snacks.
Dinners for me are often much more protein based with fish playing a big part, definitely a fan of omega 3 over here ha! I enjoy experimenting with spices as does Simon so I'm quite happy to try different kinds of meats, vegetables and so on, usually dinner times are just a concoction of things we have thrown together (I make a mean shredded chicken salad as well!). It's really important for me that I keep an extremely low fat, low sugar and salt diet, protein is higher on my priority list than anything else, usually it's meat I crave anyway but honestly I do manage to stay under 1100 calories almost all of the time. Sometimes I go out to eat but that I on occasion every now and then, never a regular occurrence unless it needs to be as I tend to make my own lunches so I know exactly what is going into by body. When I do go out I love things like Japanese food so Nudo and YO! Sushi are two of my favourites and a lot of things on YO! Sushi also have the calories and nutritional value next to them on the menu so you know exactly what you can get and how it'll all add up at the end of the night. Most of the time I avoid things that are greasy or fast food because I know it'll make me feel sick as well as not do anything for my weight gain. 
in terms of drinks I only drink fizzy drinks they are now a no-go, I mainly rink water and flavoured water, always still. 

I've heard people many times over the years claim that food is the enemy with POMC warriors and that's all well and good if that is how you like to view it but in my personal opinion that's not how I ever want to view my condition. I see my body as doing me a favour... go with me for a sec. See, my body stores as much energy as it can because it doesn't work properly, therefore it's wires are crossed and thinks that I'm going to starve if I don't eat or get hungry a lot of the time (now I know this is the incorrect way of thinking about it but it helps me understand myself a bit better). So, because my body thinks it is helping me by storing all the energy and such from food it's up to me to control my own diet and exercise in order to guide my body in the right direction, almost like helping a child who has gotten something a bit wrong and needs some help, if you understand what I'm saying? That was very long winded ha. 

Once again, I thank everybody for reading this post and coming back to my blog, I hope if anybody is reading this with POMC or a child with POMC/LEPR or Prader Willi Syndrome recently diagnosed I hope I've helped a little.
xo. 

Getting and Coping with a Diagnosis - The POMC Series

Good day everybody!

How are you all doing today? Very good I hope. It's been a crazy hectic week what with York and a few other things going on at home, getting ready for university is so exciting and I've already got my backpack ready to go! Nothing like enthusiasm, eh? Anyway, I've been working on today's post for a while and I've actually had most of it written up for quite a few days now but it's something I've been meaning to discuss for some time; today I want to talk about getting and coping with a diagnosis of POMC or any other genetic obesity disease such as Prader-Willi or Leptin Receptor deficiency. 

When I was diagnosed I was so young that I honestly didn't understand what was wrong and to be honest didn't truly understand it up until this year when I actually started to look deeply into my condition; there was very little support around at that time as doctors knew less about it then than they do now, so hopefully what I'm writing now will eventually get to someone diagnosed with a genetic obesity condition and help them.

Image from Google

Getting a Diagnosis

Right, first of all I would like to talk about actually getting your diagnosis, when you first suspect something may be wrong genetically in terms of obesity, probably from recognising signs and symptoms (find a small list of them here INSERT PREV BLOG POST) you should speak to your GP about your concerns about your health. There is a good possibility that you'll be met with doubt and scrutiny from many doctors you speak to, particularly primary care doctors such as GPs as there is a huge stigma attached to obesity. One idea particularly is that obese people are unlikely to take responsibility for their own health problems, this is an incredibly ridiculous idea as although there may be some people who prefer to blame others' for their weight, there are also people who can take responsibility for their health and others who have no responsibility to take as it is no fault of their own. One way that you can help yourself here is by printing off a list of symptoms and signs that you are experiencing and take that to your GPs surgery, book a double appointment with an actually doctor as this gives you more time to explain your circumstances. If you're struggling to get support from your doctor the first time, ask for a second opinion if you are convinced there is an underlying issue. 

If you are determined and have an understanding doctor, or one who likes to take interest in unusual conditions, you may be given referrals for genetic testing, these tests can be intensive and arduous and very frustrating at times, most of mine consisted of blood tests, ECGs, I actually had treadmill tests, some kind of sleep test where I had a space helmet like contraption over my head whilst I slept and many others. Often these tests can be frightening especially if you're a child and don't fully understand your situation, they can be emotionally fraught times during and waiting for test results but if you speak to the team dealing with the tests it should be possible to arrange some sort of counselling session, as least my hospital did that for me when I was scared. In times like these it's also important to keep a close network of good friends and family around so you can talk to them when you need. 

Coping with a Diagnosis

If you are unfortunate enough to be diagnosed with a genetic obesity disease then I truly feel for you, the first thing that you need to know is that you are absolutely not alone, as much as you may feel it at the beginning. You may be angry and try to blame whoever you can for this happening but honestly, don't. In situations like this absolutely nothing can be helped as much as it may hurt, one of the best things about being diagnosed at a time like this is that currently there are trials going on to test a particular drug to see if that can help, there is more knowledge and more doctors researching it then ever before and there are more people diagnosed. Personally, knowing what I do now about the condition I would recommend doing several things once you are diagnosed, these being:

• Learn - find out as much as you possible can about the condition you have, ask doctors, nurses and specialists what is involved with your condition, how does it affect people, learn about what foods are best for you, how you can exercise, how you can try to maintain your weight, learn as much as you possibly can about your condition as it will help in the future.
• Take Note - take notes on how your body is progressing, is there anything that can make you worse e.g. do you find it hard to say no? Little self-control? Often times pressure and convenience can lead you to eat badly, if your friend tried to twist your arm for fast food, you must find out what your triggers are, how you can stop yourself eating badly and take notes on how your body is developing. Are you gaining, losing or maintaining your weight? How are your usual body functions e.g. how is your hunger, how are your menstrual cycles? Learn about yourself. 
• Teach - it's essential that you teach the people around you exactly what going on with you the best you can, build up an informed and understanding support network around you as these people will be your biggest strength in your darkest of days. 
• Get Support - as I mentioned earlier there are now a number of organisations and nonprofit organisations that have been established in recent years that can give or can point you in the direction of support. Facebook groups, blogs such as this, NORD, EURODIS, Orphan Drug Act, Genetic Alliance, Global Genes and so many more organisations can help and support you. Other groups such as Facebook groups are often much more for emotional support and helping you get in touch with doctors. 
• Diet Changes - It's essential that you make some changes to your diet when you're diagnosed with a genetic obesity disease, especially if you've not had a great diet up until this point. Again, it's all in the learning, get yourself to a specialist dietician, preferably referred from your specialist doctor rather than a GP as GPs and your "average" doctors do not tend to read notes and it can make you feel as if you're banging your head against a brick wall. It'll take time but try and find a diet that includes all or a lot of the vitamins and nutrients your body needs while getting in the foods you love, get support from family and friends, do not let them push you into something you know is not good for you. Make better decisions when going out for food and try to be aware of your exercise as well as this can help a lot in making you feel better in yourself and in *some circumstances can help maintain weight. 

That ladies and gents is all of the information that I can give you from my little noggin. I really hope I've been able to help but the one piece of advice I can give you is this: give yourself a break, none of this is your fault and know you have a diagnosis and the knowledge of what exactly is going on in your body you can try to make some good changes and Rome wasn't built in a day remember. 

Thank you all for reading. Have a fab day! 

xo.