Life Update and Return to Normality

Good Afternoon everybody!

Finally managed to get this post written up! It's been 4 months and I'm not surprised it's taken this long but still, it's nice to have the time to write again. There's been quite a bit going on lately actually, I've been backwards and forwards from hospital in Birmingham loads but everything is going well so I'm a happy bunny. I've got a good few more posts coming up, 5 or 6 more posts after this one so it'll definitely keep me busy, but for now I though I would give all of you guys a little update.

The last time I was here I believe I was talking a bit about how I was doing a lot of research for my dissertation, I had picked a topic and I was so excited to get started on it, well things changed a little with that because around September time I completely changed my mind about what topic I wanted to do and basically had to disregard the 60 pages of work I had gathered over the summer. Nightmare! I've finally managed to choose a topic that I am settled with and really happy to do, the only problem is I don't think I will have enough words to write everything I want to about it haha! Still I have got about 30 pages of relevant quotes so I am well on my way to getting the research done and starting to write up the first draft of the literature review, woop woop! 

Snowy walk around Hardwick Hall late October

When I actually started back uni in September I was having a really struggle with my mental health and my physical health had been wobbly for a few months, I've started getting palpitations quite regularly, 5 to 6 times a day I get very strong palpitations that make me dizzy, doctors aren't quite sure why its happening because my heart is in pretty good condition and I'm eating and exercising well so I've kind of got to take things easy now. I ended up making a super hard decision to leave uni for the year, so I have taken a leave of absence from early November this year until September 2019 when I'll return to study hopefully in a better state. I have felt that since leaving there has been a huge amount of pressure lifted and I am managing to get my mental health back under control slowly, but I keep trying to push myself to do too much too soon which is never a good thing.

It feels so much better now that I am able to sit and work on my dissertation without the pressure of deadlines because now I know I can take a break or have a couple of days off when I need to recover, so I'm really pleased with that and it means I'm getting to spend more time with my family. Unfortunately since I've left i feel like I might have lost a couple of friends which that's just something that happens in life I suppose, friendship isn't a one way street and I need to remember I'm not the one who has to make all the effort; I've stayed in touch with some amazing people from uni though and I'm so grateful for those people :)

Outside of my uni life I've gotten myself a personal trainer which was a turn up for the books, I'm not at liberty to discuss this fully because of rules of pharma companies and such but I've been doing well health wise other than my palpitations and a chronic sinusitis (since APRIL!!), generally my physical health has improved a little and I have been getting out and about trying to walk more. This has meant that I've seen a good few changes in my body, not all of them good, so I've been trying to build up a bit of muscle and I must say my trainer is awesome, he doesn't work me too har and I'm able to take breaks as and when I need, couldn't ask for someone more understanding and the workouts are actually really fun... the soreness and aches aren't afterwards but hey ho haha. I'm really pleased with my progress and can't wait for my next session. I've been out walking Luna quite a lot, she gets walked everyday for 90 minutes (usually takes me 2 hours to get around mind but still its an improvement) unless its super cold then she shivers until I take her home or Simon takes his jumper off and wraps her up :)

Out new Christmas tree <3

I don't know how I would have managed with the immense pressure I was under if I hadn't had that little one to come home to, dogs are little angels and no house is complete without one. 

I've been working on the Invisible Disabilities and Disorders society at uni while I've been off, trying to help people with projects they're wanting to undertake, there's been a good bit of work on with that trying to talk to the Disability and Wellbeing teams at the uni but so far so good, hopefully we can plan some events soon and I will update you guys about that too. 

The final thing that I've got to update you all on is my absolute favourite thing in the world... CHRISTMAS!!!!!!!!! Oh my God, its December 1st tomorrow and I absolutely cannot wait! We have had out Christmas tree up since about November 7th, we had to put it up twice because the first time the lights went off and needed to do it again, then Luna came in and pulled the whole thing down! A chihuahua Vs. a 6ft tree! Last night me and Simon watched The Grinch and tonight we will be spending time with my nana watching National Lampoon's Christmas Vacation, so far we have also watches Spongebob Squarepants Christmas episodes, The Simpsons Christmas episodes, Jim Carey's A Christmas Carol and Adam Sandler's 8 Crazy Nights :) 

I love December because on the 14th it's mah birthday, then 17th is Luna's 1st birthday and then Christmas. I love to take my nana shopping eVery year for food and last minute presents so I'll be doing that this year which I can't wait for, I have sorted out my outfit for my big family meal and I and just so excited :) I hope all you guys are super excited too!

For now though I shall say goodbye and let you lovely people enjoy the last day of November! 

I'll be putting up another post later in the week and will aim to write around 1 blog post per week, apologies if not because I am still doing dissertation research and helping ready the house for Christmas!

Bye for now lovelies xx

Katy. 

Managing Weight Bias in Healthcare

Good evening everybody!

I hope you're all doing really really well, massive that you to everybody who read the previous post it was an absolute pleasure to write it and the response to it was awesome! Because of such a fab response to the more practical advice based posts I'll be planning a few more of these to come up pretty soon. From this point on I'll be using my summer to do 4 things one being blogging for this account, blogging for my university blogging platform, reading for my dissertation and enjoying my time off with trips, so I'll try to write as much as I can for both of my blogging roles. So, today's post is a pretty important one all in all and I have to stress as a disclaimer that although this blog is aimed at promoting awareness for genetic obesity disorders none of the advice or tips/suggestions I provide are limited to those with genetic obesity. This post in particular will be about how to handle weight bias in healthcare, something that I know fine well that almost every single overweight or obese person in on the planet will have or will face at some point. I know I have done a similar post to this but this one is much more in-depth and should be so much more helpful, hopefully. 

Source: MyGutTellsMe.com

The fact that there is so much weight bias, hatred, prejudice or whatever you like to call it, in society is hard enough to handle at the best of times but the issue becomes more than hard to handle when that weight bias creeps into YOUR healthcare. To really kick off this post I am going to tell you all a story... It was about 9 months ago I went into my local GP surgery, West Cornforth Medical Centre for those who are interested in which medical centres to stay away from, and I had been suffering from a chest infection, sinus infection, the psoriasis in my inner ears had flared up and I had made an appointment to attempt to deal with my chest infection. Being Asthmatic from birth I know how serious chest infections can end up being, I sat and explained my symptoms to the GP manning the surgery at the time and the first thing out of that man's mouth was "May I ask how you are managing your weight?". This isn't an uncommon thing in the lives of obese and overweight people, we deal with this kind of thing on a daily basis in healthcare, then have strangers on the street telling us we are putting a strain on our healthcare system by being overweight... as a side note I will point out that it is not our weight that most often is wasting money or time for healthcare systems around the world, if Doctors were willing to listen openly and actively to our concerns as human beings maybe we wouldn't be wasting appointments constantly poking for new Doctors who understand out current, very personal circumstances. The following are tips and tricks that I have had to develop over the years to get the healthcare that I not only need but that I am entitled to as a human being. 

• Unless your appointment is weight related make it known that you will not be discussing your weight in the appointment - I don't know how many times I have had to do this. I've attended an appointment for dermatology or my chest infection and ended up being asked about my weight. Often times it can make you so angry you want to scream or hit someone but the most appropriate way to deal with that kind of question is simply say "that topic is not relevant to the matter at hand, I am here to discuss my original problem". It is as simple as that and you need not swear, shout or get upset. As long as you are confident in how you handle the doctor and remember that if it wasn't for people using their services they don't get paid, so make the most of your time at the Doctors office by only speaking about what you need to. 

• If your weight is brought up again, without you explicitly discussing or asking about it, leave - Again, unless the appointment was weight related, and you are asked about your weight repeatedly, leave. You have not wasted your time to be hounded by questions regarding your lifestyle which may not be directly related to the problem you are presenting with. I fully understand that weight does play a role in many other health complications but if you are aware  your problem is weight unrelated then leave. I had to do this with the situation with my chest infection, the matter was pushed by the Doctor so I left. I ended up making another appointment later in the week and specifically requesting another doctor who was much more objective. 

• Second opinion - This is a lead on from my last point. If your doctor is blatantly telling you that you health concern is weight related and you feel he or she may be incorrect then get yourself a second opinion and ask for an extended appointment to fully explain your concerns. Your health should be number one priority to all doctors but sometimes it isn't, often times doctors can be too focused on skin deep issues and associate everything with visible issues such as weight concerns. If you're not comfortable with your Doctor's decision, make an appointment at a later date and ask for a second opinion, it doesn't hurt and you might get a different or the same answer but at the least you have tried to ask. If it feels wrong keep asking, keep pushing for answers because you have been in your body all of your life and you know when something is wrong, a Doctor doesn't have that intimate knowledge of your body, this is especially true of those with genetic obesity problems as many doctors do not understand these conditions. 

• Make Leaflets - This is something that I have had to do for a long time and I know other parents and people with genetic obesity conditions have done also. I have created an information sheet and a leaflet outlining what genetic obesity condition I have, what it is, what it means for me and what medications I can and cannot take. I often find that doctors do not read my notes which puts a serious barrier between myself and and good quality healthcare as they often treat me as the average oversight individual which is absolutely not the case. If you have complex healthcare needs I would highly recommend making information sheets and leaflets that tell your doctor everything he or she needs to know, especially if you will be working closely together in terms of your health. Often I do this when I get a new Gynaecologist, dermatologist or GP because they simply do't know about my genetic condition. Make those Doctors read the leaflets, make them understand YOUR healthcare needs because after all YOU are the most important person in that room when you have an appointment. 

So those are my main tips for dealing with weight bias in healthcare on a day-to-day basis. Eventually you will find a doctor who truly understands you it just might take time. Often you have to wade through all of the rubbish to find some treasure. I hope you have found these helpful and I will leave you with some parting wisdom:

Doctors do not know everything! You have been in your body longer than most doctors have been practising, you know yourself and your body so trust your gut!

You are a human being who is entitled to care, good health and supportive healthcare professionals. You can always make a complaint if you feel you've been treated unfairly. 

Bringing a dictaphone to your appointments can be a godsend, especially for those with chronic illnesses or memory troubles, dictaphones are a lifesaver.

You never EVER have to accept the words of one single doctor. There are many more who are willing to give you a second opinion. 

If your problems are weight related you are entitled to ask for psychological support to manage your emotions during a difficult time, even if those psychological problems are caused by your weight. Being overweight or bees is a stress on your mental health too!

Bring someone else along with you, its a lot less scary if you have someone you know will support you next to you during any appointment. 

I hope this has helped you and I shall be back sometime soon, once I have more posts ready to go that is! :) 

Katy xx

Exciting Things Going On!

Good evening all you gorgeous people!

I don't know how many time sI have to say this but I am really sorry for the extended absence, I'm doing my best to stay on top of things. There has been so so much going on lately, last time I posted I think I mentioned that I had finished uni for this year and would be preparing for my dissertation? Well I've finally managed to settle on a topic and have just discovered how much I adore social policy so I'm super excited time 10 to be getting ready for the dissertation. 

In terms of uni I actually found out that I finished my year with an overall first class, same as last year just at a higher degree and I'm hoping to keep that up for my final year and come out with an overall 1st for my undergrad degree. 

At the end of the year I went into uni to have some discussions with lecturers just about how to proceed with research for the dissertation and so on but I actually ended up getting myself and internship throughout the summer which basically involves doing some human rights research and writing a report on particular human rights abuses in a country of my choice. Human rights isn't something I've ever dealt with before but I've got to say it's been heartbreaking reading about some of the atrocities that are happening now throughout the world. Other than difficult and often heavy reading I am really enjoying it and it's something that I can add to my CV. I've also joined the University of Sunderland's Student Blogger team so I've put up a couple of posts for them right now and that's been so fun, I love blogging as you know and I love teaching and my blogging style tends to gravitate more towards academic help and support which is something that I am privileged to be doing and helping others with. 

I've also been volunteering with a company in Sunderland that promoted health and wellbeing and undertaking a few training course, so far I've been trained in emotional resilience and other similar things, I'm looking forward to becoming a fully fledged health champion. I feel like I am doing really well as lecturers at university are wanting to use m work as exemplary for next years students as well as getting some of my work published on the University of Sunderland Social Sciences blog soon so that'll be awesome! 

Unfortunately not everything has been rosy in terms of uni and personal life, I'm struggling with some issues with people in my inner circle, things are being made difficult for me and my mental health is starting to be impacted by it. The only thing that I can say about this topic as, obviously it's very personal to me is that an issue around friendships and supportive relationships becoming toxic to me is getting me significantly overwhelmed so I am attempting to distance myself from situations that I feel will be unhealthy for me. I am actually planning a post about this type of toxicity in your life as soon as I possibly can, it may take a while due to other commitments with the internship and dissertation research but because it's something I feel passionate about it is definitely on of the next posts coming up. 

I have been spending a huge amount of time in hospital lately backwards and forwards from the North East to the West Midlands for care and although I'm not at liberty to disclose any information about what has been going on, I can say that I have never felt this good and things are looking quite positive for me at the moment. I'm hoping to access some counselling services to help me manage my stress and emotions as there has been a significant amount of upheaval in my personal life and with my health and I am a complete advocate for counselling I think it's a wonderful way to relieve stress, learn new ways to cope with changes and sometimes it's better than ranting to family members because at least counsellors are paid to listen haha! I am also planning a post on my reasons why counselling services should be accessed if you're feeling overwhelmed of are struggling because it's a topic that is a real hot one in the media at the moment and definitely is something that needs to be talked about and de-stigmatised, so keep an eye out for that one! 

As you can tell, I have been a bit of a busy been and shall continue to be a busy bee until my feet drop of and my brain melts (if I don't melt before this heat that is) because if I have noting to do I will go mad. I have an exciting couple of weeks planned for self and Simon as we are planning to go to Simon's graduation ceremony for his Foundation Degree on Friday, we have dog trainers out on Thursday (because Luna is becoming a terror!), I'm off to see Pixie Lott with one of my best friends and hopefully another one of my wonderful friends, trips planned to go to Edinburgh, York, Whitby and Beamish open air museum coming up! I'm so excited for the future and honestly, I am overwhelmed at the joy I feel getting to share it with all of my amazing readers. I know I am not the biggest social media mogul or the best, most well known blogger out there but I am grateful for every single person who reads my blogs, thank you all!

P.S. If you would like to see the blog posts that I have created on the University blogging team please go to this link!,

Have an amazing day everybody and Happy Sunday!!!

Love Katy xx

Just me :)

The POMC Series: A Partner's Perspective

Hello everybody!

Earlier this week myself and Simon celebrated our 3 year anniversary of our relationship together, there have been many ups and downs in our relationship but we truly love each other and I wanted to take this opportunity to develop a post that I've been meaning to do for a long time. When I started this blog Simon asked me how he could help. This is his contribution, he has chosen to write and article for the blog outlining what it is like being in a relationship with someone who has a genetic obesity condition, and I myself could not be more grateful and proud of him. I hope you all enjoy his perspective and the next instalment of The POMC Series. Here goes...

"When a person is born into the world, they never have a choice in the cards they hold. Hair colour, the colour of ones eyes, even down to their individual personalities, nobody ever gets their say on what they want. This is no exception when it comes down to medical issues, issues that can be, or is, the bane of our existence. Personally, Asthma is my Achilles heel, one which has affected my whole life (Thank you, asthma!) yet it is a condition which I will never hope to submit to. However, there are some people in this life who really suffer much more that what we could ever comprehend, ones which we could never hope to understand unless we walk in their shoes. This post aims to shed a perspective in the life of my long-term partner, Katherine Simpson. 

The first, and best, picture I ever saw of this gorgeous woman

Me and Katy (her preferred name) have met under weird circumstances but we have that chemistry that just simply took off. No idea how she puts up with my randomness but that’s respect for you! We have had many dates out, however, it wasn’t long until I noticed problems with the way Katy was walking. She needed to stop on occasion and this only escalated the more I’ve been with her. Katy mentioned early early in our relationship that she suffered from POMC, Lordosis and a very unique genetic coding which is beyond my understanding. I have attended multiple doctors appointments and assessments as support and even medical professionals struggle with understanding what really makes Katy tick.

From my understanding, Katy suffers from a what-do-you-ma-call-it genetic deficiency in which her metabolism is permanently off. Because the body assumes that it is starving, fat is biologically formed and stored as a back-up energy source, not a great understanding as I mentioned but I wanted to write this without Katy giving me any direction so as to you you all what I see of this condtion. Due to this nature, the body can never truly function properly and this causes Katy to go up in weight. Newcastle RVI and Addenbrooks, Cambridge, are able to explain to a degree, and its such a difficult thing knowing that the one you love do dearly is not able to get treatment or help for an awful condition. Operations, some drugs and even gym has not worked; I can attest to how hard this sweet woman works, only changing shape but not losing weight whatsoever. I have experienced Katy suffer from an ovarian cyst which further compounds how much exercise and activities she can participate in. It is so upsetting to listen to your partner apologise for being who they are, because a medical condition stops them doing things they they desperately want to. 

Personally, I encourage Katy to the best of my abilities to rest and take breaks, yet she always felt guilty that she cannot have a normal life like everybody else in society. Memories with her are much better than distance she can walk and I have bad  short term memory anyway so there is no likelihood I would remember how far we travel anyway! Walking around places like Newcastle and the Metrocentre has always been a struggle, 10 minutes of walking puts a huge strain on her back, legs and pelvis. She is always hungry and finds it very difficult to manage that, she can eat a bigger portion than me and be hungry again minutes later as if she has never eaten at all!, any deviations can physically knock her sick. This is a medical attribute which I am wholly in the dark about and I am still learning more each day. 

I do feel empathy that Katy, no matter how much effort she tries, will just continually struggle. As her supportive partner, we will fight tooth-and-nail for medical and practical solutions but there are very limited channels open. Aspects of our life together have been negatively affected, I can’t express the pain you feel when you are walking down the street, hand-in-hand, with a woman you see as truly beautiful when she gets some disgusting comments shouted at her from afar. You want to go up to them and tell them the whole story but some individuals do not comprehend other individuals circumstances. Because of this, Katy’s confidence with being around others is shot; I wish she could see herself as the beautiful woman I see her as. A medical condition should be no reason whatsoever to make people feel isolated from the rest of modern society. Despite the medical flaws, her conditions does not own her, she aims to own it!!

One of our best nights together at Russell Howard

When I first met Katherine, it was a first for being with someone with such debilitating medical conditions. I was petrified when her cyst flared up two years ago, now I’m so relaxed she jokes that I’m too relaxed! Truth is, If I cannot compose myself to be of help, I should not be a lover at all. I am not size-ist so I do not judge on weight. However, I have have learnt so much about her and myself throughout the three years of us being together. I have adapted to Katy’s needs and as long as we make preparations, we still enjoy days out, even with back pains and struggles and my asthma! My general rule of thumb on looking after people is this;

• Whoever it is you are with, Love them 120%. Yeah, time management is hard, yet, everyone cares for their love. The addition of unorthodox medical conditions are no exception.

• Always keep calm. Managing tasks and looking after Katy is challenging but we always got there in the end. Patience can be low but do not snap and always try and communicate.

• Never go in a relationship if you are not willing to commit. A no-brainer, this one!

• Take time to understand your partner and what makes them tick. They will undoubtedly feel uncomfortable with themselves and they are humans too. No different to the rest of us!

• People can be abusive, what do they contribute to life anyway? You and your partner will be 100% better people than what bullies will ever be. 

People are still people, those with these medical conditions challenge life in hardcore mode, only strong souls can cope, I don’t believe things in life are given to you unless someone, somewhere knows you can cope. Katy copes so well. It is a strain on our relationship at times because I just want to help her but I know I am limited, if I could wave a wand and change things for her I would. Anybody who cares for someone with a long-term condition who loves them would change it for them. The only thing I can suggest for those living with, caring for and loving people with genetic obesity is be there for them and love them and make amazing memories with them, because just like everyone else on the planet, people with genetic obesity conditions are still people and I will always love my amazing partner and accept her for who she is."

By Simon Steel

And there you have it. My wonderful partner wrote those beautiful words as he writes everything else in his life, with passion and meaning. I hope you all found this post enjoyable and enlightening, I am off to give my fella a massive cuddle!

Katy xx

Busy Bee: What I've Been Up To!

Good Afternoon you lovely people!

It's been so long since I last did a post that I've rewritten this several times because I just wasn't getting into the swing of it. I am pretty disappointed in myself for not continuing to blog but honestly I just haven't had much time to myself whatsoever! I'm pay to be blogging agin though and I've got a fair few posts ready to write for the next fee weeks, so lets get on with this one which will basically just been a roundup of what I've been up to recently!

As per the main reason I haven't been blogging is university, I've just finished my second year and will be going into my last year come September which don't get me wrong I am super excited about, but at the same time I really don't want to leave! This is a big change for me as I have hated every single place I have studied from primary school through secondary, sixth form and college! Uni is brilliant though and I love it so much. With going into my last year I've been mulling over dissertation topics for the last few months and after having like 9 different ideas I think I have finally found a topic that gels with me and that I'm really passionate and excited to write! Next year will be heavy but so fun so overall I'm looking forward to it and I'm actually quite optimistic about my grades for this year too, so yey! 

Oh the frustrations of a Venflo!

I've had a LOT going on with my health lately, as you can probably gather from the image to the right, so me and Simon have been travelling halfway down the country for tests and things, the hospital appointments are really long and pretty boring sometimes so we are bringing books along with us, games, laptop just to keep up busy. I'm allowed to go for walks between tests so it's not like I'm sat on my butt all day doing nothing. Other than that I have been feeling pretty great lately, our puppy Luna is now letting us sleep until a decent time, usually she gets annoyed at us waking her up! We take her for walks everyday and she is absolutely loving it. So are we!

Like I mentioned earlier not much has been going on other than getting loads and loads of Uni work, revision, placement days, report writing and things to get on with which is all done now thankfully but in our spare time me and Simon have been going out to the cinema, we actually managed to go and see Love, Simon (ironically) on the day it came out in cinemas and Oh My God! That's definitely one of my favourite films I've seen recently, I absolutely love anything romance-ish and Nick Robinson is a fab actor so I just loved the whole thing from start to finish, I then went and bought the book so I'm hoping to read that sometime in the summer. We also went to see Infinity War which was way better than I ever thought it would be! No spoilers obviously, I know people who still haven't seen it, but yeah it was really well worked and considering the amount of different characters coming from completely different movies they gel well together and it is so so so funny in many places. We also went to see Deadpool 2, again awesome but personally I preferred Deadpool the original, in fact I prefer the comics but the movies are still fab, definitely getting all of those on DVD when they come out.

A great book!

I've spent a lot of time reading and taking up a couple of new hobbies. I started reading Pornography by Andrea Dworkin. This is a really really good book if you're interested in feminism and topics around patriarchy and pornography, it's heavy reading but very interesting. I've also been reading Fat is a Feminist Issue but Susie Orbrach and this has got to be the most interesting book I've read in a very long time, fatness and social perceptions of fat people have always both fascinated and enraged me and this book captured my attention from the introduction so I would give this a read especially if you're interested in body positivity and fat acceptance type arenas. 

I've recently also picked up a could of new hobbies, because I obviously can't do a huge amount of exercise because of back pain, and a more recent and happy *sarcasm* addition, leg pain. I've started swimming which really relaxes my my back is still a great way to keep fit, me and Simon have also taken up ice skating recently, which is something I struggle at and have to take a lot of breaks with, it tends to take me and hour to get around one lap of the rink and then I'm done after that but still it's a fun day out and something I could hopefully build upon. 

Afternoon walks with Simon and Luna

Finally, I've picked up a few books and CDs and I'm planning to teach myself how to speak German because it's something I've always wanted to do and I'm passionate about, I love the German language and I have no idea why. Hopefully at the end of my third year at Uni I'll be taking a trip over to Berlin or into the Christmas markets in Germany so we will see how that goes, haha! 

So, basically through Uni, movies, books, ice skating and learning German I've been pretty busy but now it's officially summer I am looking forward to getting back into blogging and will hopefully have another post up on Tuesday. 

I hope all of my readers are doing awesome and will see you very very soon! ;) 

Love Katherine   xx

Hello World! Long Time No See: An Update!

Well good day everybody! 

I hope everybody is doing really well? I am so glad I have a chance to be blogging again, the main reason for my absence, as per has been a mixture of university and my health, it's been pretty crappy all round at the moment to be honest. Here in the UK we were hit by the 'Beast from the East' earlier this month so the weather has been pretty crazy, feels like other than going to university I've been stuck in the house for so long! 

Myself and Simon are doing okay, as usual we are inundated with work, things keep going wrong but at least we are still having a lot of laughs along the way. 

I have so much to tell you all and I know these update posts aren't anywhere near as interesting as the POMC posts but thing is, I'm hoping to convey the message to people of what all aspects of life for someone with a genetic obesity disease is like, but I am super super excited to tell you all about something in particular soon! Some exciting things have been going on lately so I believe it is time to get on with the post.

So, in terms of my health things haven't been perfect but when are they? I'm gaining a tiny bit more weight, most likely not helped by the fact I haven't  been able to do as much exercise as usual because of weather and university taking up all of my time, or it could be the fact that my doctors have started me on a new progesterone medication that's meant that I am more likely to bloat and retain water. Don't get me wrong these tablets aren't as bad for my body compared to the last tablets I was on in terms of getting regular hormones but they definitely mess around with my body and emotions twice as much which is fun for all the family to deal with. Anywho, other than that I've been fighting migraines, sinus infections and some serious back pain lately, in fact the back pain has been so bad I've missed university because of it, a lot of the days lately I seem to be struggling to walk and experiencing more pain, I'm hoping to go to a local chiropractor and physiotherapist in the next couple of weeks and see if they can help with some exercises or manipulate my back. Doctors keep telling me to lose weight and my lordosis will improve... yeah because all of us with genetic obesity know how easy that is. Anyway that's roughly about it in terms of my health, there are a couple of routes I'm considering going down in terms of adding things to my diet and exercise regimen, although those are things for another post.

Me and the babies, Dusty left, Luna right.

In my last post I mentioned that our dog Bella sadly passed away, she's left a huge hole in all of our hearts but thankfully we now have two little things to take our mind off of it. Myself and Simon are now the proud parents (yes I said parents, I DON'T CARE IF YOU JUDGE US!) of a beautiful 14 week old little Chihuahua girl we have named Luna. She is THE most adorable little puppy in the world! We love her so much but she is definitely a lot to handle, at the moment she is waking up us every single night between 2 and 4 and then wakes up properly at 7am. Not fun on a Sunday morning I'll tell you that. She has a good little voice on her and will bark at you if you tell her not to do something which I find adorable, but she has an even better appetite, so far she has managed to drink coffee from Si

Our baby Luna on her first day home!

mon's unattended cup which he left on the table and she jumped over to get, she's stolen fish, cheese, toast, tomatoes, carrots, cake, popcorn, carbonated water, milk and lots more! None of this is ever given to her willingly either she's just like a little acrobat when she wants something!

Luna is the first pet I've been completely responsible for and I think me and Simon are doing pretty well so far. My Nana and Grandad have also adopted a 14 week old Chihuahua and Jack Russell Terrier crossbreed called Dusty, he is a total fluff ball, he'll sleep anywhere, loves a good cuddle, is very very noisy, has the personality of an old man and has a huge overbite which Simon says makes him look like he is constantly biting his lower lip in excitement which is hilarious. If you want to see a picture of another adorable puppy I highly recumbent heading over to Instagram and taking a look at the profile Tunameltsmyheart, because that dog is probably the sweetest little thing ever to exist and I live for that IG account. The puppies a

Nana's baby Dusty on his second day at home!

dore each other, they are honestly the best of friends and share the same food bowl, sleep together and are currently having an argument with one another while I write this. 

Other than rubbish health, adopting two puppies and stalking Instagram puppies I have actually been attending university haha! At the moment we are nearing the end of the second semester and it's scary how close we all are to dissertation time next September! At the moment I'm taking 3 modules, one on Medicalisation of society, another on a research module, a third is a placement module with a self-directed research study which I am really enjoying because I have been seriously considering a career in social research. I've got a fair few assignments due in, I started one yesterday and have pretty much finished so I've got through that one quickly, I have 2 assessments for each module so I have 6 things to hand in before the end of May, lots going on heck which is why I have had so little time to blog with university and new puppies. Hopefully I can get all of those assessments in well before the deadline and can finish pretty early, fingers crossed. A few nights ago I had a crisis, well two actually, recently my car has been playing up which has meant I have had a battery change and breakdown recovery out more than I care to think about, and the other is that when I sat down to write my essays up my laptop completely died on me so I had to head out and buy a new one complete with Microsoft, security, an external hard drive and everything else that goes along with a new laptop. Admittedly it is amazing compared with my old one but I bought an Acer and have never ever had an issue with an Acer laptop, in fact I think they're the best type to get for uni and college, just my personal preference mind you. 

My new laptop - Image from Google

Anyway back to the topic of university, last year I mentioned I had a few things happen, such as a meeting with the president of my students union and an interview with a journalist, unfortunately the journalist let me down pretty badly, after giving out personal information for a good cause you kind of expect something to be done about it but at this point I'm so annoyed I don't even want to be involved in it anymore. 

The meeting at the union went great but because of timing and things we never managed to get an awareness day for genetic obesity running. HOWEVER... me and my friend who runs another blog about living with her own rare disease, we have decided to come together ad there are a number of issues at our university which mean people with invisible disabilities are not catered for as much as visibly disabled individuals would be. To myself and Annie this just isn't acceptable, in a world where disability rights movement is pretty strong, people shouldn't have to justify their disability simply because it isn't visible.

Official logo for out new community at uni!

 Therefore, we have developed a community at university, similar to a society, specifically for individuals with, people caring for or those interested in invisible disabilities and disorders; we are known as the Invisible Disabilities and Disorders Community, or I.D.D. for short, we aim to provide a safe space for people with invisible disabilities to socialise without judgement, we want to make people's university experience much more empowering and we want to make changes to the university to ensure it is more inclusive to everybody who wants to attend! I think this is a huge step for the university as well as a major step for myself as this is something I've been passionate about for years and honestly can not wait to get started! 

So, all in all you can see its been a pretty busy month! I am glad to be able to blog again but again, my posts will be sporadic until I am able to get all of my inversely work sorted or at least a bit more manageable, I truly do hope you all have found thing post interesting because I enjoy telling you all when is going on in my life! I would love to hear thing things that you've been getting up to this month! If you have anything to say leave a comment or reach out to me as I'm always here to listen! 

Have an awesome day everybody!

Love Katy! xoxo

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. 

Long Awaited Return!

Hello lovelies!

Wow, it's been well over two years since my last post and SO SO SO much has happened and I can't wait to tell everybody!

First thing's first, I'm very sorry for the long break, my health deteriorated massively for a good while, it's far from being back to normal now but I've recently been slapped by motivation to get back to blogging.

I'll give you all an update about my life in general right now then get on to something more personal and important to me if that's alright! 

Well in 2015 just after I was diagnosed with an ovarian cyst I actually met a guy and we have been dating for 2 and a half years, his name is Simon we are now living together with my grandmother and although it is quite difficult and sometimes cramped we are very very happy. He's honestly the most amazing man I've ever met and looks after me better than I could've expected. On December 14th last year, which happens to be my birthday Simon got down on one knee and proposed, since then we have been very happily engaged for almost a year and are hoping to tie the knot around either the end of 2018 or 2019 depending on finances, although admittedly I have already bought my wedding dress, oh I wish I could show everybody it but it shall have to stay hidden until the big day. 

In September 2016 I started university on a social work degree at University of Sunderland, I was absolutely miserable for two months on the course and got very little support partly because I wasn't able to stand up for myself and tell the lecturers what I needed, however one day after discussing whether or not I should drop out or do social work part time Simon pushed me into the office of the programme leader of Sociology. I absolutely adore sociology and Simon knew I would be happier there, it was a struggle but after a while the leader decided I could change courses and managed to get caught up within a couple of weeks and since then I've been overjoyed studying a subject I adore, I finished this year with 6/12 assignments being first class and the rest very solid 2:1 grades. 

Other than that there have been many ups and downs, me and Simon have both lost friends, gained new ones, had many many new experiences both together and separately, we have tried to move out, been screwed over by our local council, lost that house and moved back in with family but all of it has been a good experience for really growing up and maturing. I've been learning to cook, learning to love myself, learning to go out and be unapologetically confident in who I am, I've seen the Rocky Horror Picture show LIVE (OMG WOW!!!!), I've done things I never thought I would in my entire life, and it's been a hell of a time!

We have attended appointments and the Centre for Life to find out about our fertility as a couple, I've learned a lot more about myself and about my medical conditions which has been very enlightening. 

So, with that update out of the way there's something very important I need to move on to if I may. When I was only a little sprout, about 5 or 6 I was diagnosed with a disease known as Pro-opiomelanocirtin Deficiency Disorder (POMC), which is a very serious and extremely rare condition that causes severe early onset obesity, my dad also has this condition and it affects us both very differently, I don't want to say too much about it as I will get to that soon.  Recently I've been learning a lot more about my condition that affects pretty much every single aspect of my life, I've been looking for treatments, trials and support for people with this and similar conditions, I've connected with some lovely people who have taught me quite a lot in a very short amount of time and one thing I have realised about this condition is that there is not, anywhere near enough information or awareness about this disease for the general public, schools or even in GPs surgeries. Thus, I'm making a major shift in the kind of blog this will be, I am going to be posting a lot more about this condition, my journey and others' journey living with this, I will hopefully be able to contact others and find out about how they live with it. I want to document everyday life of somebody who has POMC, how it affects them, what kind of support there is available. Should I be lucky enough to trial a drug that's being tested to manage it now I want to document the process of taking it honestly, without any faffing or fussing. People need to know the truth of such a condition as it is very serious, life-threatening and difficult to live with as I have found out first hand. I would appreciate it if these posts can be shared as the purpose of this blog now is to raise awareness of POMC even if it is just in a small way, every little helps after all. 

However, do not despair as I am fully planning on keeping the lifestyle aspect of the blog running and I have many more ideas for advice posts, support, general discussions and so on but the posts may be less frequent than before as university is going to get more heavy workloads particularly in years 2 and 3. Please bear with me if posts aren't coming as thick and fast as liked. 

Thanks for reading and I hope you all come back to read more!

P.S. I want to thank everybody who, in the two years that I was gone, continued to read and comment on and share my blog posts, you're wonderful people and you're the reason I came back to this blog instead of beginning a new one! I hope you're all having wonderful lives yourselves!!

Love,

Katy. xo

Health Problems and Indefinite Break

Hey Everybody,

It's been a pretty long time since I last posted anything and I think it's time for a bit of a catch up and some unfortunate news... I've had a few health problems lately, last Saturday I ended up being admitted to hospital after an emergency urgent care and A&E visit. Basically this week has consisted of a lot of pain and I'm feeling very drained and poorly. This post is basically to let all my fabulous readers know that I've not been slacking on the blog because of laziness or anything as I've genuinely missed blogging but to say because I'm so poorly at the moment I'll be taking an indefinite break from blogging because I don't know when I going to get better (fingers crossed it won't be long). 

I'm sorry to say I'll be taking a break and I am hoping I get well enough soon so that I can get back to blogging as most of you know how much I love it, the time off should also give me some opportunities to plan some new posts for you lot which should be fun. 

Thanks to everyone who reads my blog and has supported me in my blogging journey so far.

Speak soon!

Love Katherine. X

Back to College and Catch Up!

Afternoon lovely people,

it's been a fab two weeks off despite the ups and downs but honestly I've thoroughly enjoyed myself. I've not blogged for a while purely because I've spent quite a lot of time out of the house this week with friends, having BBQs, shopping, and such other fun things. overall it's been a rather busy holidays and I had planned to spend them just chilling out, reading, doing some cross stitch and knitting (19 going on 90 here!) but I've really enjoyed what I've ended up doing. 

I hope everybody else has had a great easter break too filled with chocolate and lazing about. With the two weeks off I've managed to get a couple of blog post ideas drafted which will definitely be posted over the next few weeks but most importantly after nearly 2 whole years I've finally managed to book a singing and piano lesson with my favourite music teacher!! I am so so so excited about this because I've been waiting to do it for ages and now i actually have an income I have a lesson for Friday at 5, music is one of my biggest passions and I adore singing and piano as well as clarinet so hopefully within a few lessons I'll have my mojo back and be playing Beethoven's 'Moonlight' Sonata soon enough. 

Anyway, because it's back to college tomorrow *insert sarcastic comment* I thought I'd do a quick post before I have to go an get all of my things together for the morrow, so far I have a to do list that goes onto back and front of a sheet A4 paper, oh the joys. I'm also going to spend some time researching jobs I might want in the future because I seem to be flip flopping and I'm gonna need my personal statement started soon so hopefully that'll help. Anywho, I shan't bore you lot anymore I just want to wish everyone a happy easter and a good start back to the last term in college/sixth form or wherever you are!!

Love Katherine. X