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

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