Sunday, 15 October 2017

Love & Our Bodies - For Plus Size Peeps!

Good evening all!
Image found on google, taken from general
pinterest thread

I'm sorry about the short absence but university has been absolutely crazy, there were a few hiccups with trying to get all the modules sorted for people and so far we have 4 assignments and presentations and things to do so it has been mad here. In my last post I mentioned that my mental health had not been the best it could be, I think I made that apparent in the way I was writing which shocked me when I re-read it once I began to feel stronger mentally, that's the first time I've ever looked at my feelings on paper and even in the tone of the writing it scared me, I've therefore made the decision to seek help from an organisation referred to me by the doctor, hopefully it won't take too long and I will keep you updated on that as well.

Today's post to get back to it is all about dating an relationships when you are a plus size person, be it male or female, LGBTQIA+, heterosexual, black, white, tall, short and everybody inbetween. I've chosen this topic because it's been 2 and a half years of being with Simon and almost a year of being engaged and thinking back to how I was feeling before I met him I was miserable and would've loved someone to tell me that everything would work out and to chill out. Anywho, on to the bones of the matter.

Before meeting Simon I was extremely bitter, I'd had a number of awful experiences with men and some very heartbreaking scenarios with other people. I hated couples, anything to do with sex, imtimacy and desire, I was jealous of friends and caused arguments because of it, a lot of that I regret now but the issue ran deeply for me because I craved it. All of it. As a teenager I was painfully aware that society did not promote my body type, never mind as ideas beauty, but as beautiful at all, in fact a lot of media, social media and average Joe's on the street made it clear that my body type was to be avoided, nobody would want a fat lass. That's what the kids at school told me and after hearing something so many times you begin to believe it. This kind of attitude leads to low self-esteem, body image issues, a lack of confidence and internalised ideas about beauty, this ideology of of the perfect body is extremely harmful yet permeates almost every aspect of our lives. If you're a bigger person you're automatically not good enough or so society tells you, ever heard someone say "you're pretty/handsome for a big girl\boy" yeah that phrase right there, although it may be meant in the best of intentions it still implies that you're being compared to the ideal standard of beauty. The first thing I've learned is that you absolutely need to get that concept out of your head, there will always be people telling you that you're not good enough for whatever reason, but honestly, why take something as menial into account as looks? Beauty didn't help you get to where you are now, having lots of compliments and men/women falling at your feet didn't help you become the person you are. Your experiences and thoughts, your family and friends, opinions and beliefs are the things that shape you, to some your looks will be but a bonus. The human body is a miracle and quite frankly to base an opinion on something purely on aesthetics alone is shallow, you wouldn't base your opinion of someone else purely on how they look so why do it to yourself? 

With over 8 billion people on the planet is it not irrational to believe that nobody would find you attractive, nor would they find anything at all about you attractive or want to be with you? You might be funny, academic, athletic, artistic, bubbly, quirky, introvert or outgoing and there will be somebody in this world, in your country, possibly even in your home town who will like at lest one of those traits, someone will love your  messy hair, your chubby cheeks, your belly rolls. Someone will crave to have your bingo wings wrapped around them at night keeping them extra warm or big thighs resting on them. Somebody desperately wants a girl who isn't "media beautiful" a woman who carries a few extra or a whole load of extra pounds. Those people out there will be feeling the same as you, that because what they like and find attractive isn't usually what is expected that something about them is wrong or faulty and it's not. The phrase "whatever floats your boat" is never more appropriate. 
However, before you can start getting yourself out on the dating scene or even just out on the scene you need to remember that the image of beauty is given to us by other people, not us. Overweight and obese people are just that, they are people who deserve and crave love and affection, there are obese people out there who unbelievably satisfying love lives, obese people who have lonely love lives, people who are in extremely happy and very unhappy relationships, just like there are people of average and petite sizes who have amazing sex lives and relationships and others who want to improve theirs. Sometimes you just have to deal with the wait and hang in there until somebody comes along, it may not be the love of your life, or it could be, but hell! You'll have fun along the way as long as you keep reminding yourself that you're a beautiful, miraculous human being who deserves love just as much as any other beautiful, miraculous human being. 

If you are a person who suffers from a genetic obesity disorder there is something else I feel I need to tell you before I continue, never EVER feel like you have to justify yourself!! Do you ever hear a slimmer individual saying "oh I'm sorry I'm so small it's genetic"? No. Unless you feel like you need to let a potential partner know the ins and outs of your condition or unless you're talking to your doctor/someone you're comfortable around you do not have to discuss it or give reasons for your size. This is very important, I remember sending Simon a text when we first started talking, a missive text outlining the fact that I have some kind of condition that makes me fat and if he wants to leave me he is welcome to, he didn't obviously and he found it astounding that I would feel the need to disclose that and his reply was "I don't care that you're a big bodied woman, I like you and I don't want to ever lose your friendship". 

Another point I have to make is that once you do find someone, a relationship, friend which benefits or even if you find that you've started to love yourself then you need to just enjoy that time. Just enjoy being happy and loved, desired and appreciated (hopefully appreciated, if not kick that lady/dude to the kerb because you deserve better). Don't waste time looking at other women or men and comparing yourself to them, I've cried so many tears thinking that Simon was only with me because he felt he was in too deep, that he grew to love my body and didn't actually want me. Things like that can ruin your relationship and send you back down into a spiral or self loathing and degradation, which is not what you need. Learn to accept the fact that your partner is with you because they love you, because they desire you and because you are the one that they want (oh oh oh honey!), sorry little Grease humour for you there. Even if you don't believe it keep telling yourself that and over time, if you stay in a long term relationship then you'll begin to believe it, just like you believed the negative comments you can believe the positive. 

I would also say that you should be aware that obesity and "fatness" is viewed as a fetish for some. The fact that you are a 'fat person' may add to the attraction for them or some other people may be attracted to you purely because of your weight. If you are okay with that then great! Please remember you aren't just an object to be used or drooled over, you still have feelings and don't want to be used (unless that's your thing than you go!). Some people are feeders who get erotic pleasure from feeding their partners so they gain more weight, people who are pushy and insist that you must eat or you would "do this is you really love me" are not good for you, particularly those who have a genetic obesity disorder and you might feel these people are worth avoiding, however an extremely important note is that not all people interested in feeding take it far, the majority of feeders and fat fetishists will take into consideration their partners feelings and thoughts on the matter just as any loving partner would so please don't tar everybody with the same brush as all people are individual. 

So, for tonight I think that is it and I really appreciate it if you've managed to make it to them end because it's been really long winded and I really hope nothing in here has offended anybody, the aim was to help you start thinking differently about your body and yourself as a loveable being. 

See you next time! 
Xo.




Sunday, 1 October 2017

Quick Update: University and Health

Afternoon all,

This post is going to be very short as at the moment I'm not feeling great at all, I'll be posting an update all about university and my health for the moment as I don't want to leave posting while I'm ill but i also don't have the energy either mentally or physically to write a long post on a particular topic. Apologies all around for the lack of posting however it's not unexpected, last Monday (the 25th I believe) I started back at university for year 2! Very exciting time but the workload is as I expected, heavier and coming quicker than year 1 did, from what I am aware I have at least 3 assignments due in before end of semester 1 in December so I'll be needing to get started with those as soon as possible, my lecturers are fab and the topics seem very interesting. This year I'm studying Medicalisation, Sex, families and personal lives, social policy, industrial society, quantitative research and a placement module. So far I think I've managed to pick where I want to do my placement and what research project I'll be wanting to base it around so yey!
Our university has recently started using the VLE Canvas to put all of our modules on so we can access them easily from home, as of now I can only access 2 out of this semesters 4 modules so for two of my lessons i can't do my reading, can't do the seminar tasks and have no idea how or what deadline assignment dates there are, obviously this is stressing me out a lot, I've actually cried so much over this as it's massively impacting my anxiety, I mean I don't feel good enough to be in second year but how am I supposed to be doing well if I can't do the tasks assigned to me? Anyway, I've spoken to lots of people about this and nobody has managed to sort anything yet but hopefully this coming week something can get done. 
Other than that in terms of university my best friend has started at my uni as well which I'm really happy about as we used to spend lots of time together at college but not as much since we went to separate universities last year. Earlier in the week we went to a student shopping night in the Gateshead metro centre which was very fun and we got lots of bargains, there is another student shopping night coming up soon so if i'm up for it we will head down. We also went to see Simon and my friend's band Deep.Sleep play at the Independent in Sunderland which was amazing! I highly recommend checking out Soho by Deep.Sleep, they are great. The night out in Sunderland resulted in far far too much to drink after blocking out a horrible day on Friday, some people at university were not very nice to me and it's knocked my confidence and my mental health has suffered because if it but hey ho alcohol usually seems like a good idea at the time but never is. I ended up in a state apparently saying Hi to everyone who passed and insisting it was Thursday and telling people Ja is German for yes, I'm not completely sure I trust the stories my friends tell me though. Still recovering from that one...

As I said at the beginning of the post my health hasn't been too great, I'm suffering from insomnia, my asthma is getting a little worse at the moment and unfortunately I've got a skin condition called Acanthosis Nigrigans resulting from insulin resistance, earlier this year the skin started to dry out and cracked, recently it's been splitting and bleeding a bit and because i hate to bother the doctors with my problems I don't go so I tried to deal with it myself, now I'm left with a small infected hole in my abdomen that is extremely painful and making me feel very ill, it mean's I can't put a bra on properly, tops rubbing against surrounding area of skin causes sickening pain, Simon is with me almost every day at uni as I can't cope standing up, the weight of my stomach is pulling the skin down even more and tearing it more too. My endometreosis pains and a terrible matters are not helping at all either, I think I've had less than 10 hours sleep in about 9 days. Comments at university from people have obviously had an impact on my mental health which is probably apparent from my writing, I'm just not feeling up to doing anything at all and I'm beginning to feel as though there's no point in, well anything. I know it'll pass, or at least I hope it will but the quicker that day comes the better, I hate feeling so hopeless, useless and unloved. Thoughts that I haven't had for years and years, since school are not far from my mind at the moment, a lot of people say they think I'm always happy and jovial, I'm really not, I feel like I get on everybody's nerves, that nobody wants me or I'm not good enough to do anything, I don't feel worthy of anybody or anything at the moment.
To anybody out there who is feeling the same try and talk to someone if you can, find an outlet for the pain where possible, in art or music or writing, whatever you do don't let yourself feel like this longer than necessary. It sucks. 
So, to end with I'll apologise once again for taking up your time and not posting much, I'll probably be posting much less frequently as university really kicks in but I will remain active fairly often on Facebook, twitter, Instagram and this is definitely not me signing off blogging, you're not getting rid of me that easily. 

Thanks for coming back,
Katy. xo













Sunday, 24 September 2017

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




















Sunday, 17 September 2017

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
















Thursday, 14 September 2017

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. 











Tuesday, 12 September 2017

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.

Sunday, 10 September 2017

Life Update and Worries - The POMC Series

Morning all!

Well, it's been an eventful few days and a very busy week! This post is going to be a quick update and a talk about a few worries I have at the moment. Me and Simon got back from York on Friday night and went to see out best friends Annie and Aidan before we went home,it was lovely to see them after a few days and catching up is always fab, Aidan and Simon are like a couple of kids laughing away at youtube videos they've been wanting to show each other over the last week; honestly, I love seeing Simon and my friends get on, makes me extra happy. 
Anyway, last time I posted an update I said I would be taking part in an interview with Sophie Dishman of University of Sunderland which I did Monday passed and honestly she was absolutely fantastic, such a professional and so kind, I'll be posting a link to the interview and talking a little more about that when I post later next week so please keep an eye out. After that myself and Simon, Annie and Aidan all went to Sunderland and Darlington to grab lunch and just relax together for a while, nothing special just a chilled out relaxed day. 
Flowers Simon bought me <3

On Wednesday me and Simon got to head down to York after a doctors appointment and it was SO hectic trying to get everything together it was really mad! We ended up forgetting our inhalers, both myself and Simon are Asthmatic so it was a bad move there but I just prayed that nothing would happen, however that's not our luck really... Anywho, we stayed in a B&B called The Willows near York and just passed Harrogate and oh my it was so lovely! The proprietor was so kind and welcoming and totally understanding about my dietary needs, he was accommodating and an all-round great man, the room we stayed in was lovely, very private and comfortable with beautiful views to his fishing pond. 
On the first night we decided we would get tea somewhere and decided on a Chinese restaurant called Sweet Basil, the staff were lovely but (and here comes the usual unexpected medical problem) Simon ordered chicken chow mien which didn't include any information on what it contained just how much the dish would be so Simon thought he would be fine, he is severely allergic to nuts and somehow there must have been traces of nuts in the food as he swelled up like a balloon and couldn't breathe so we had to get him to York hospital really quickly, he was given a strong inhaler and steroids and was thankfully alright after a few hours. Still I was out of my mind panicking... no epipen no inhaler, no idea how to get to the hospital and my husband-to-be haven an allergic reaction in the passenger seat! God that was scary. 
Lunch and cocktails!



After the ordeal of the night before we decided would go into York and headed straight for The Shambles and The Shop That Must Not Be Named, a Harry Potter themed shop full of awesome stuff, I managed to get friends and family some gifts like notebooks, fudge, decorative lights, drink flasks and stuff so everyone was catered for thankfully. We headed into other shops and had a general look around which was lovely to be in an area other than Durham or Newcastle; we started to get hungry after a few hours of shopping, albeit it took me around 3 hours to walk round the shambles as I needed frequent breaks. Simon found a restaurant called divine which looked as though it had food that both of us could eat which i was grateful for considering I'm not sure Chinese was the best idea for the night before. We got pasta and risotto which was very nice and filling and Simon bought us a few cocktails to be going on with. It's important to note that earlier in the week I had been discussing the possibility of getting on to a Setmelanotide trial for a drug that aims to treat those with genetic obesity diseases, up until this point I had not been eligible and was waiting for more information via phone call that day from my main Doctor in Cambridge. So, obviously I was quite stressed and the few cocktails I had definitely helped, and they were yummy. 
Stunning Cathederal

Anyway I was meant to get the call from Dr Farooqi at 12:30 but she had been called into a meeting and I didn't receive it until 4pm, the same time we were due to be going to an escape room. I found out from my doctor that drug companies are refusing the trial for those with one genetic fault as it is deemed more helpful for those with 2 genetic defaults, however she did discuss with me the possibility of another "treatment" called Liraglutide, a regular injection into the fatty part of the stomach or thigh. Only issue is this drug causes Thyroid cancer in animals, pancreatic cancer, pancreatitis and a whole host of other problems in people... so now I'm panicking and hopping to get more information out of my RVI doctors as soon as possible, I want a treatment and my doctor says I need one as soon as possible but at what cost? Is getting an immediate treatment worth possibly risking my life? I have no idea but I'm scared and confused at the moment and will be writing another post about Liraglutide as soon as i know more info. 
After the call we ended up in Gr8 Escape York and it was amazing!!! We had lots of clues to figure out and had to escape to room to get our spy school diploma, unfortunately we are both bad at maths and the people monitoring us actually gave us the answers to a few clues haha! Still, we failed but honestly, it's the best experience ever!! I loved it as did Simon and can't wait to take out friends there! 

The next day was home time but we thought we would go into York city centre again and do a few things we never got to, we managed to get into a few shops which we never had the day before, Travelling Man where I bought a book called 'My Lesbian Experience with Loneliness" (awesome book by the way!), a Model shop so Simon could get some trains and things, and we went into the York dungeons which was hilarious, scary and utterly fascinating all in one! Overall it was a fab trip and we have made some wonderful memories,  got a lot of things to think about and will definitely be returning. 

Other than our trip to York I have become involved with the Sunderland University SU Buddies Scheme and and extremely excited about that, I go back the week of the 25th and my amazing best friend has been accepted into uni for her dream course which I'm so proud and excited for. I really can't wait for university to start but in the meantime I'mm be blogging more, reading up on course material, chilling and just doing me! 

I hope you all have had some amazing days this week as well! Thank you for reading and keep sharing ladies and gents! 
xo.