Keep Fighting - The POMC Series

Hey again,

Hope everybody is well, this next post will be a short one as I'm lacking in energy today but definitely have a couple of posts coming up that you should find interesting.

I wasn't going to post today as me and the family went out for the day but I've decided that if qany day is a good day to demonstrate the reality of how POMC can affect people it's today.

Beautiful Whitby Town - North Yorkshire

Today was a really bad day, to be honest. I woke up feeling pretty good, well rested and such and I knew me and the family were heading off to Whitby for the day, one of my most adored places I've ever been to, and I was visibly excited. After a cup of tea I went to get s cold shower because I could feel myself beginning to overheat, despite windy and pretty cloudy weather, my body temperature kept going up and I was just sweating more and more so I took 5 minutes, tried to keep myself hydrated as much as possible and got myself dressed quite quickly. 

Me and Simon got into the car and went to Subway for our lunches, we decided to go there as I'm not keen on just grabbing whatever I can wherever I can, I've learned that food is best planned well in advance so I know what I'm putting into my body compared to the energy I'll be using up, I just feel it's the most sensible decision for me. Other people are different though. Anyway as I was driving I honestly felt like my body was slowly turning to lead, as if I weighed twice what I do now but I pushed it to the back of my mind and hoped I was going to get a good day out of today. 

Nanna and Granda, who we went with, eventually got home and I packed a bag with inhalers, water, phones and everything else we would need and headed off. While I was in the car I could feel my legs turning numb, my granddad's car is very low to the ground compared to mine and I find it extremely difficult to get out of, the seat belts also don't fit around me without an extender so it's not the best car to travel in. Anyway  like I mentioned I felt the numbness creep up my legs and a dull ache hit my lower back which was there all the way to Whitby, along with the overheating feeling which was exacerbated with the weather turning sunny and hotter the closer we got to the coast. By the time we got to Whitby there were no parking spaces so me and Simon tried to get out to walk on ahead; I don't think I managed getting 12 metres before I was sweating in pain with my back and my knees started to ache. I've always been self-conscious of looking like the stereotypes version of an obese person, someone who is so large they cannot walk properly, mainly because when I've tried to explain that I'm not simply over-eating the wrong things without exercising and have a genuine medical condition I am met with looks of disbelief and dubious scrutiny. At this point I walked a little further and had to stop where my anxiety got the best of me as I was convinced everyone was looking at me. I broke down and cried on Simon, insisting I go home and we go for a walk privately around our local area later today when I feel better. So, not only did I not get the day at Whitby we all wanted but I feel I've held back my family and boyfriend, something I'm not unused to feeling. 

Somehow though me and Simon are still determined to do that walk, determined that pain won't stop me from cooking family dinner later and it will not stop me being a happy person overall. The point of this post was not to complain or whine or make people feel sorry for those of us with such problems, it was to remind parents of children with POMC or any genetic obesity disease and those directly dealing with POMC/genetic obesity themselves that no matter how hard the days might seem, how much you want to give up fighting or feel hopeless always remember that the condition you have is there to be fought and we are all warriors in this battle, nobody is alone with a strong support network around them of family, friends, partners and even medical professionals who help you cope. You are a strong person with better things to do and live for, than to give in to anything at all! Even if is is easier said than done at times, please keep fighting! 

Thanks for reading. xo

My Story - Adolescence to Adulthood - The POMC Series

Hello again lovelies!

This is the second instalment of my story, recounting my journey from birth to present while living with POMC. I must give a warning for this post as it will contain slightly more specific information on my development through my teenage years and so and information is, once again very sensitive and personal; however, please feel free to continue to share and like these posts as every little helps!

My first day at comp - 11 years old

I ended the last post by claiming that at the beginning of adolescence was where the real battle began, hopefully you'll understand why. After finishing primary school the next big thing was on to comprehensive and I can honestly say that was the worst time of my life, no exaggeration. By 11 years old I fully understood what I was expecting to happen to my body in the process of "becoming a woman" if you catch my drift, all of the usual things happened I gained more weight as I aged, my body changed shape so I got more of a feminine figure and I started to hold my weight differently. I mainly help my weight in my lower stomach, things and face which did absolutely nothing to help the curve in my spine, that got so bad that even to this day I cannot walk 6 metres without feeling the numbness and pain creep up my calf, thigh and up to my hip and lower back. Honestly, the pain is agonising, I get sweaty, sickly and dizzy with how much it hurts. All of this at 11 years old, although Ive admittedly gotten better with dealing with it, it hurts nonetheless. Yet, somehow at 11 I had reached a massive 16.5 stones in weight, my blood pressure, sugar and cholesterol had all stayed on a level of someone who weighed around 7 stone; at least I had that. 

My 13th birthday

The bullying continued into secondary school, I couldn't walk through the corridors without having some form of abuse shouted at me, some nasty remark. Comments like "You should go and kill yourself" and "you're so ugly you should've been aborted" were regular occurrences, almost daily to be honest. I never got anymore beatings but I feel like a beating a day would have damaged me less than the cruel comments I got did.

By my 13th birthday I'd contemplated suicide and self harm on a number of occasions, never believing I would do anything, only wishing I had. I was put on anti-depressants at 14, I never ever left the house, and to show how serious it had become I developed a sensitivity to the sun that is now so severe I cannot be out in the sun for more than one minute without blistering, literally. All because I couldn't bare getting abuse thrown at me as soon as I left the door. I dropped countless days at school, didn't do anywhere as well as I could've done, teachers allowed me to leave the classroom 5 minutes before bell went so I could get to my next class without  getting abuse, I was allowed a toilet pass to leave whenever I needed to as by this point I had developed severe anxiety as well. But I had managed to find an outlet in playing the piano, clarinet and singing lessons. 

From ages 13-17 (the picture to the right is me at 16, almost 17) my weight gain did continue but at a much slower rate, despite that being the most inactive time of my life, like I said I didn't go out at all, probably ate worse than I should have as I simply didn't care about myself by that point. Everything developed as usual expect one aspect of my body. I hadn't developed certain aspects of puberty, menstrual cycles being one of them, at 15 I was put on Medroxyprogesterone so as to induce them. That's been going pretty well ever since no changes there really. I did however get diagnosed in January 2014 with Polycystic Ovary Syndrome via a routine blood test, and an ovarian cyst indicative of Endometreosis in 2015 as I was rushed into hospital with severe lower abdominal pain in late April 2015. Doctors have told me this cyst can be removed but nobody is willing to operate on a woman of my BMI, I get me with a resounding "lose weight first" even after explaining my situation. Sometimes it seems impossible to get professionals to listen to you no matter how much you tell them. Recently, I have discussed my Gyno concerns with a professional who specialises in POMC and I was told that they are not aware whether or not POMC can cause such problems and have advised I continue to keep an eye on it. If any female with POMC does read this I would advise going to see a specialist about the issues right away. Keep it under control as soon as you see it. 

After finishing school/sixth form in 2014 and beginning a course at New College Durham, who may I say were reluctant to believe my condition was real, despite being registered disabled because of it, bullying had died down significantly in a more mature environment although had not fully been resolved. By 18 ears old my hunger had not lessened but my diet and exercise regimen was improving massively, I was forcing myself not to give in to my hunger, some days were terrible others not so bad. I would usually keep myself busy and whenever I felt hungry remind myself of how disgusting I was... clearly my mental health and self-esteem.image was not on the up at all, I still never left the house or went anywhere really. Not much else can be said for my 18th year. I just plodded on. 

By 19 years old I had started to seek help for my body image, using a number of self-help leaflets, talking more to friends and family, being open with lecturers and teachers about what I needed and gradually my opinions on myself improved, I did really well in college and managed to secure a place at the University of Sunderland studying social work, which as it turned out I wasn't suited to, and changed to Sociology. All the while this is going on I was in a relationship with the most wonderful man I could've ever wished for, he has dealt with a lot and will hopefully be posting about being in a relationship with someone who has POMC sometime in the future. 

Very dark! Me and the best friend on my first night out earlier this year :)

I am now a 21 year old woman, my self-esteem has never been better, I'm engaged to the man I love, I'm getting out and doing things and I have a life that 13 year old me never dreamed I could while having this condition. However, in recent months, this past year, I've noticed my weight has increased more than it should have, in the last 5-8 months I've gained 5 stone while maintaining an exercise regime, I have developed a condition where my knees have turned in opposite outwards directions of one another (pigeon toes) and my spinal curve is stopping me sleeping as it's impossible to find a sleeping position. I have also developed sleep apnoea, a condition where I can stop breathing at any point throughout the night because my throat can close and there is significant pressure on my chest, something that people with POMC must look out for, I had also developed an overactive hypothalamus, meaning my internal thermostat has stopped working properly and I have a tendency to dehydrate extremely quickly and overheat. I am also now double the weight I was when I was 16, terrified of dying young because of this awful incurable and untreatable (as of yet) disease, all support and help goes towards stopping young children with this feeling so scared, maybe there will be a treatment soon enough! 

POMC is, as I have been told by professionals specialising in this area, supposed to lessen with age  in their exeperience, the weight gain in their experience has in some circumstances evened out as has eating habits in some, I am living proof that this disease does not play by the rule book. Bear in mind also that I am one of the lucky ones, there are people out there much worse off that I am, those are the people that need this support and awareness most of all! 
Please if anybody had any questions, comments or so on, do not hesitate to contact me. I'm available all the time so if you want to share your story of living with POMC or a genetic obesity disease get in touch and I'll be more than happy to help! 

Have a great day all! 
xx