Thoughts from a Pituitary Patient: What It Feels Like To Live With an Invisible Illness
I’m sure you might have noticed that my content over the past few months has been really travel focussed, which is obviously a good thing given that I’m running a travel blog(!!), but I wanted to do something a little different today. I haven’t done any personal posts for a while, and, although I love writing about my trips, I’m conscious that churning out travel guides and hotel reviews will make my blog seem less informal and less ‘me’, so I wanted to inject a bit of personality into this post and put myself at the forefront of it. If you know me personally, or you’ve been following my blog/social media channels online, you’ll know that as well as being a travel blogger I am also a proud ambassador for The Pituitary Foundation, a small UK based charity which supports patients, and their families, who are suffering with a variety of pituitary related conditions including Cushings Disease, Diabetes Insipidus and Prolactinoma’s. I have the latter condition, which is basically a benign tumor on the pituitary gland in the brain, and was diagnosed 7 years ago as a young 18 year old girl. I first told you about my condition in this post 2 years ago, and have since shared my story with The Daily Mail and even wrote something for Contiki Holidays last summer about how to travel with an invisible illness, but it just so happens that October marks National Pituitary Awareness Month, so I thought now was the right time to give you another little insight in to my world, and what it’s really like to be a Prolactinoma sufferer on a daily basis…
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Today is National Rare Disease Day, so what better way to share my news about a new challenge I have set myself this year… last year I turned my town orange, the year before I ran a 5 mile fun run, and this year I'm going all out and CLIMBING A BLOODY MOUNTAIN!! 🏔 For those of you who don't know, I've been living with a condition called a prolactinoma for the past seven years. Put simply, a prolactinoma is a small tumor on the pituitary gland in the brain and it's something which affects me every day. Although I'm on life long medication, I still need to have tests, scans and consultations regularly throughout the year. After becoming an ambassador for The Pituitary Foundation last summer I'm trying to raise as much money and awareness as possible for a wonderful charity who have supported me every step of the way during my diagnosis. I'll be climbing Mount Snowdon in June with my wonderful friends and family in the shape of my mum, dad & my lovely friends Tiff and Flo (if shes better as she's currently poorly!!) and can't wait to take on my biggest challenge yet! I'm trying to raise as much as I can, so please donate if you are able to – no matter how big or small, every little helps! 💰 In order to kick start the fundraising I will donate 50p for every like that this status receives over the next 24 hours… go go go! Please help me raise some cash for an incredible charity who are fairly unknown in this country. Please read my story on my JustGiving page (link in comments) and donate whatever you can! Thank youuuuu! Lots of love, Jess and the Snowdon team 😘💖 xxx #pituitaryfoundation #pituitaryawareness #charity #fundraising #mountsnowdon #uk #charityevent #ambassador #justgiving #prolactinoma
Back in 2011, when I was just 18 years old, I started to notice major changes in my body. I was tired all the time, had horrendous headaches every day, blurred vision and constant nausea, so I knew something wasn’t quite right. Weirdly, I started lactating from my breasts and I’d come home from sixth form with cotton wool pads stuffed down my bra because I was worried I’d have patches showing through my top. Up until that point I wasn’t overly worried, but when the lactation started that’s when I knew I had to see a doctor. Was I pregnant? Was I going through some strange hormonal condition? I had no idea and, at first, neither did the doctors! I had MRI scans, heart scans, blood tests, hormone tests and every kind of investigation you could think of. After endless tests, prods and scans I was passed between the hospital, GP surgery and MRI departments until I was finally diagnosed with my condition. At 18, I was told I had a tumor in my brain. The medical term is a Prolactinoma, which is a small (benign) growth on the pituitary gland in the brain. That doesn’t sound so scary when you break it down, but when you’re 18 years old the only words you hear are ‘brain’ and ‘tumor’ and hearing those words together in the same sentence truly scared the life out of me. I was immediately put on long term medication (Cabergoline) and told that I most likely would be on them for the rest of my life.
My Daily Symptoms
The following months were a blur, but I do remember my symptoms starting to disappear as the medication slowly worked its magic on my body. The headaches became less frequent, the blurred vision eased a little and the lactation pretty much stopped completely. Fast forward seven years and, whilst I still get headaches on a daily basis and still suffer with nausea, most of my original symptoms have now disappeared. The medication lowers the level of the prolactin hormone in my body and helps to keep it under control. Whilst the medication does reduce the size of the tumor and improves my day to day wellbeing, there are inevitably some side effects which do impact me daily. The tablets cause horrendous mood swings; some days I’m so low I can barely get out of bed and all I want to do is curl up in a ball and cry, other days I’m loving life and am as high as a kite! It’s ridiculous, it’s stressful and sometimes it’s really embarrassing. I would say 70% of the time I’m happy and I’m pretty content with life, but I do suffer with terribly low moods and there are genuinely days where I’m just on auto pilot and I’m merely existing, not living, and that’s really upsetting when you’re a bubbly, outgoing person like me who tries to live life to the full every day.
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So this morning while everyone was tucked up in their beds I woke up at 3.30am, took 3 ski lifts to a height of 3300 meters, and attempted to watch the sun rise from the top of one of the highest mountains in #Switzerland! Sadly the sky was too cloudy to see the sun come up, but what an amazing experience to be surrounded by so much snow! Whilst I was halfway up I began feeling really poorly and started suffering from one of my #pituitary related headaches, but this one was so bad I could barely open my eyes. After we started our descent and had breakfast in an igloo at 2900m I started to cry. I cried because I was in so much pain and I didn't know what to do to make it stop. And then I realised that I could either let it get me down and ruin my Swiss experience, or I could wrap up warm, push past the pain and try to make the most of every second of my journey. With the help of my wonderful new blogger friends I chose the latter option. Sometimes being poorly is unavoidable, but today I made the best out of a bad situation and still managed to have an incredible bucket list experience. Travelling forever leaves me speechless, and it'll always teach me to enjoy each moment, live each day and remember every second. 💖 #InLoveWithNendaz
How I’m Affected
Sadly the medication affects my life in other ways, and one of the biggest worries it gives me is that I may not be able to have children or conceive naturally if I stay on the tablets. If I come off them though, my tumor will most likely grow and I’d be back to square one. This is something that plays on my mind daily, despite being nowhere near ready to settle down and have a family, all I’ve ever really wanted to do in life is be a mum, and it breaks my heart to think that this dream might never come true for me. As well as living with my condition, I also suffer with recurring cysts on my ovaries and found out at a recent ultrasound scan that I have a tilted womb – it’s totally back to front – great! So even if I can have kids, I think I’d have a pretty horrendous pregnancy/birth/life for those 9 months! Obviously I try to push this to the back of my mind as I am not ready to start a family yet, but I’m 25 and the reality now is that I do think about this every single day. On a day to day basis though, I just take things one day at a time and deal with the headaches/nausea/mood swings first before allowing myself to be overwhelmed with thinking about the future, and what that means for me and my condition.
For the past 4 years I have taken part in a series of events to raise money for The Pituitary Foundation, and in doing so I have met sooo many people who suffer with the same or similar conditions to me, and who are in some way impacted by problems the pituitary gland can cause. In 2015 I ran the Big Fun Run in Milton Keynes and raised over £350 for the charity. In 2017 I was honoured to become an official charity ambassador and turned my local town orange for The Pituitary Foundation’s Go Orange Day, raising over £100 as well as capturing press coverage in 2 local newspapers. This year I took on my biggest challenge yet as I climbed Mount Snowdon and helped to raise a whopping £25,000 for the Foundation which is absolutely phenomenal and such an incredible achievement for the entire team – we got press coverage for this event too! To put it into perspective, £18,000 covers the yearly wages of an endocrinology nurse to be available at the end of the phone and to offer support for patients – without this money from fundraising, support simply cannot be offered to patients in need. Next year, I’m joining the Snowdon team again, but this time we’ll take on Ben Nevis and this will undoubtedly be the hardest thing I have ever had to do, but I am more than ready for the challenge so BRING IT ON! I absolutely love raising money and awareness for The Pituitary Foundation, and for my little known condition, and will continue to be an ambassador for this fantastic charity for as long as they’ll have me!
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Every muscle in my body aches, every step that I take hurts, every move that I make causes me pain but every memory I have of climbing #Snowdon will stay with me forever 🌟£22000 raised so far for @pituitaryfoundation and I've never felt prouder to be a #pituitary patient! 💖Next challenge… Ben Nevis! Don't think I'll ever stop pushing myself to my limits and my mums probably fed up with me for causing her too much worry but I wouldn't have it any other way 🌍 #MondayMotivation #MountSnowdon #Fundraising #Charity
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Massive thankyou to everyone who helped me turn my local town orange for #PituitaryAwarenessMonth! Shops hung up their banners and balloons, I collected donations from kind friends and family and I even met another lady who has the same condition as me and we're going to team up next year to organise a joint fundraising day! Such a great turnout and I'm so proud to be ambassador for this amazing charity 🍊💖 #Witney #GoOrange #Pituitary #HappySaturday @pituitaryfoundation
My life nowadays consists of 3 monthly blood tests, 9 monthly eye tests, and annual check-ups at the hospital with my consultant to see if I am responding to the meds or if the tumor is growing. Things have pretty much remained the same for the past few years, but as I get older and my body continues to change, and as I inevitably discuss potential options for having children, I think I’ve still got a long road ahead and will continue to battle this condition for the rest of my life. If I want to come off the meds and want to consider surgery as a different option, this is something I can discuss with my consultant, but it involves evasive brain surgery (through my nose and up into my brain) which is something I am absolutely terrified of as it has dangerous implications and I will try to avoid at all costs! To look at me you may not ever think that anything was wrong with me, but that’s the trouble with living with an invisible illness – you can never see it, but it’s always there. My consultant and the endocrinology team at the Oxford Churchill Hospital (OCDEM Ward) are fantastic and I wouldn’t have got through the past 7 years without them! As well as that, the team at The Pituitary Foundation have been a constant source of help and comfort throughout my diagnosis and ongoing struggle, and I couldn’t have been more thankful for their support over the past 7 years. Not many people know about the charity, or the conditions that can affect pituitary glands, so I’m extremely proud to be an ambassador for them and will continue to raise awareness and money for them for as long as I can!
I hope this honest and personal post gives you a little insight as to what it feels like to be part of my world. It’s not all doom and gloom, I promise! I have good days and bad days, I take each day as it comes, and I always try to remain positive despite sometimes feeling like my world is caving in around me. I’ve learnt to live with my condition, and cope with it in the best way possible, whilst always putting things into perspective and reminding myself that people are suffering with far worse conditions on a daily basis. I’m stuck with this condition for life, but I’m sure as hell not gonna let it hold me back! I’ve worked hard since the age of 16, bought my first car, ran my own business, owned a successful travel blog and travelled to 25 countries, with many more on my bucket list! I’ve helicoptered over the Grand Canyon, celebrated Independence Day in New York, done extreme water sports in Menorca, climbed Mount Verbier in Switzerland and ticked sooo many physical achievements off my ever expanding bucket list. I will not be defined by my illness, and I will not let it hold me back! A huuuuge thank you again to the fantastic team at The Pituitary Foundation – I am honoured to be an ambassador for your incredible charity, and I hope I can continue to work alongside you for years to come. I also want to thank my amazing family and friends who continue to support me in every way possible, especially my amazing mum who is my absolute rock and the only person who can pick me up when I’m down – sometimes she literally has to pick me up off the floor when I’m crying and tell me that it’s all going to be okay. Sometimes I don’t believe her, but I know things will work out in the end, and if this post helps even one person suffering with this condition too, then it will have all been worth it.
Love Jess x
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🏃♀️WE DID IT! 🏃♀️ What an amazing day!!! 33000 steps, 4000 calories burnt, 18 kilometres walked and 7 hours long! One of the best things I've ever done, and definitely the hardest thing I've ever done, both physically and mentally. 🏔 Didn't think I would make it up to the top at one point but these amazing people got me through!! Couldn't have wished for a better group of people to climb #Snowdon with, and am hoping we've almost smashed our fundraising target! You can still donate if you want to 😘 Collectively our group have raised over £22000 so far for @pituitaryfoundation which is INCREDIBLE!! My illness gets me down sometimes, but when events like this bring people together I wouldn't change it for the world 🌍 https://www.justgiving.com/fundraising/jessica-bucks-team
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