A Pea Size Problem…weight

It’s been a while but I thought NYE would be the perfect time to reflect and bash out a post. One I’ve been wanting to write for a while but too scared to let the words out. For some reason today the words flowed around around in my head and I felt able to download.

This one is on the tricky subject of weight. I mean weight is pretty much something we all stress about illness or no illness, but It’s now something that plays on my mind daily not just when I am getting ready to go somewhere. Honestly; I feel guilty that something so materialistic can get me so down. Shouldn’t I just be thankful to be alive instead of feeling crap about the extra pounds (stones)?

These feelings frustrate me as well, as pre illness I really battled with my weight, never feeling confident about how I looked, always worrying that no guy would ever fall in love with me and I’d be on the shelf forever. When I look back now at photos I think how crazy that was… I would do anything to go back to looking like that now. I mean I wasn’t the skinniest or prettiest and never have been, but I was in control of my body. Now I can be on the strictest diet and not even budge a pound. I also think about all the energy I wasted worrying about my weight and get so angry at myself.

I think the hardest thing for me is looking in the mirror and not recognising myself. Steroids as wonderful as they are (life saving in my case) change your face the most. Moonface. I’ve had people I’ve known for years not recognise me and whilst outwardly I will joke, laugh and smile through it… this stings. I am after all still me. This is one of the toughest things with a silent rare disease. People just assume you ate all the pies/ are pregnant (the answer is…I wish…to both the pies… well doughnuts I’m not really a pie fan and pregnant who knows if I can or can’t get pregnant…another battle for another time) and I can’t blame them really as how would they know? I don’t go around with a Steroid dependant tattoo on my head and their mighty list of side effects, but I do wish we lived in a society that was less judgemental.

Quite often some people (not many)usually those who have not experienced loss or illness and are therefore oblivious to the scars, physical and emotional that those experiences leave, are less empathetic as a result. I often wonder how they would cope, but I wouldn’t wish it on them. What it has done though is made me less judgemental of others. No one knows what’s truly going on with another individual so why make assumptions?

Girls (I can’t talk from a male perspective…sorry lads) naturally fret about how they look, are their clothes too tight? which diet to go on next? can you resist the next chocolate? This is not always vanity it’s just how we’ve been conditioned to think over the years. It is part of natural everyday conversation a joke here and there, and yet I now find it excruciating to listen to these casual comments/banter. Once upon a time I would have joined in but now I’m afraid to, not wanting to draw attention to myself and embarrassed about how I look. Not wanting to eat a chocolate in front of people in case eyebrows are raised. Now, what I have learnt and tried to understand over the last 4 years is that most of these issues are my own feelings about myself. I have therefore tried these last 12mths to feel more relaxed, to try not to care what people might think. I could eat a lettuce leaf everyday (not recommended) but on my current cocktail of medication it would still be hard to shift even 1lb.

My consultant is delighted that for the last 12mths I’ve maintained my weight and the 12mths prior to that I managed to lose 1stone. For me I’m desperate to lose more but I am also not going to put my health at risk by starving myself. Life is too short and can be taken from us at any time. A lesson we often learn too late.

Patience is one thing that Pituitary patients must have in spades. No two Pituitary conditions are the same and even if you have the same condition as another individual it’s unlikely your treatment will match as our bodies all react differently. There is therefore no quick fix, no magic combo of drugs. There are rarely the answers that you want or seek just a reassurance that together with your consultant you can carefully understand what works for you (and what doesn’t), a lottery of sorts and definitely a gamble at times.

For me even after 4 years I am still on two steroids, hydrocortisone and prednisolone as it’s the only thing that has helped prevent me from going into Addison’s Crisis. Over these last 4 years I have tried many times to come off prednisolone (probably the main culprit of my weight gain) and that is still the end goal I am working on. Many (not all) Pituitary patients are on hydrocortisone alone as this tries to mimic the body’s own cortisone levels and is therefore less severe on your body (once you get to a maintenance dose). For me getting off the pred is a slow and painful process. Many times I have had an Addison’s Crisis, ending up in hospital. I am however, lucky enough to live in an area where I can be red flagged by the ambulance service and paramedics have been able to administer emergency hydrocortisone which is life saving. Some of my fellow patients are not so lucky and The Pituitary Foundation are tirelessly campaigning in these regions.

I have been distressed and frustrated that I am still not off the prednisolone but I am comforted that at least it is keeping me alive. This year I have been able to significantly reduce the amount I’m on and am slowly starting to notice changes in my face, less moon, more me. This is a small victory and has really only happened in the last few months. Yes, I have had a few beginnings of crisis but thankfully not landed myself in hospital, just on a return train back to Kent from London (not quite making the office which is annoying but avoiding hospital which is a victory) stress dosing hydrocortisone on the journey . So back to the word patience – my consultant is not worried about my weight so why am I? Patience is what she says. So whilst it is a constant niggle, I am trying hard to silence it.

My Diabetes Insipidus ( the inability to control water not sugar which is a different diabetes) also means that I can gain 4lbs in a day… and the next day be fine again. I mean talk about the universe being against you. I have clothes upon clothes that I have had to buy not for pleasure but just to make sure I can go outside (not naked!) I held my breath this month as I had the greatest honour of being asked to be bridesmaid for one of my closest friends but I knew that whilst the dress may fit one day it was a stark reality that I could wake up and it not fit the next, but nothing made me happier or prouder than watching her get married and I wouldn’t have turned down the honour for the world due to my own fears as it was far more important to support her after all the support she has shown me. I am grateful for a lot of things but on the day most of the thanks went to Spanx!

It’s an expensive business being a Pituitary patient in ways you would not even think… new clothes, constant drinks, travel to hospital appointments, overnight stays but I am so thankful for the NHS. I read stories of people in other countries who can’t afford their medication or operations and I just can’t comprehend what life would be like if that were the case for me. Would even still be here?

Exercise is another challenge and not being able to do it has undoubtedly contributed to my weight gain. Not exactly a gym bunny before but I knew I needed to exercise to keep fit.

I started to overcome this challenge and fear of exercise that had set in last year after seeing an advert for TM Active Challenge. My mum thought I was crazy and that I would never be able to partake. I was scared and terrified, yet determined that if I didn’t try, how would I ever know? I submitted my application and to my delight and amazement I was selected for 12 weeks of PT and free gym membership. I decided that this was a safe environment to try, an amazing opportunity and that I should go for it! I was so nervous and terrified that I would have an Addison Crisis and in fact found myself in hospital a week before I was due to start but I picked myself up and managed to start with the other 3 ladies. The instructors were fabulous and trust me, did not take it easy on us. The fact that the four of us had one PT session and one class to commit to a week, meant we all carried each other through not wanting to let anyone down. Frustratingly whilst I did not lose much weight I did feel fitter and I also gained a confidence that I thought I’d lost and a realisation that I could do things alone again. I also felt reassured that I was doing everything I could to lose weight so it must be the medication at play and not just an excuse I was using. Whilst my consultant had always told me this, I thought she was just being kind… seeing is believing after all. This all helped me to feel that I was starting to get my independence back. This also fired me up to feel confident enough to abseil the orbit in The London Olympic Park in July this year.

My body has been through a lot physically and emotionally that I know I need to try and take care of it. When I was first admitted to hospital I lost so much weight through non stop vomiting (now known to be secondary Addisons) that I had gone from a UK Size 12 to a UK Size 8. Once out and on steroids I went from an 8 to a 12 much to everyone’s relief but then to my horror post Pituitary surgery I carried on going right up to a size 20! I was so embarrassed and felt like I needed to hide away. In fact I honestly think that if I didn’t have to go into work each day I would have hidden away. My job saved me. I took a deep breath each morning and walked in as if nothing was different although for me everything had changed. When colleagues I didn’t see everyday ignored me in the corridor I knew it was because I looked so different and the change had not been gradual. When suppliers I had been working with for years said nice to meet you I smiled through as I didn’t want them to be embarrassed , but inside I was crying. This did however carry me through. It’s amazing how far a smile can carry you and after a while I just got used to it. After all there are more important things and you can only worry about the things you can control not the things you can’t. A smile on the outside can soon make you smile on the inside too.

For me it wasn’t so much being a size 20 but the fact that when I looked in the mirror I felt I couldn’t see me. I felt lost. I didn’t know how to be me. The change happened so quickly there was no time to get used to it. My poor body stretched from a 12 to a 20 in 6mths. Humour as always gets me through and being able to laugh with my Mum, Dad and sister unites us making us strong when we feel weak.

At all stages of my illness I learn something and the weight side of things has taken me a long time to speak out about. Fear of judgement, fear of others being embarrassed for me and not sure what to say, fear of admitting I’m not in control of something. This has taught me you have to be kind to yourself. The people that are true friends love you no matter what, stick by you through thick and thin, they don’t see the outer they see the inner. Neve my 3 nearly 4 year old niece has only ever known me like this. She loves me and my wobbly tummy. In fact she thinks I’m a human bouncy castle… not so easy if I was a size 12 but even if I was she’d love me no matter my shape or size, she’d just find a different way to bounce along, just as I am doing.

So it’s a long one (blog post)… a long road to recovery… a lot of patience to reach your goals… different days mean different things…be kind to yourself as you would be to others…if they offer you a seat on the train/bus because they think your pregnant, take it, it is much easier than saying I have a hidden illness can I have your seat!! If they look at you with disgust or make jibes on the tube about trying to get around you(trust me this happens)… don’t rise to it let it wash off you… it probably gave them an extra wrinkle thinking and saying the mean thought aloud…don’t assume you know everyone’s story… ill or not ill we all have our own path to travel, our own rollercoaster to ride our own struggles.

This year for me has had great highs and great lows but a realisation that without the lows would you ever truly feel the highs and ultimately that I can still feel. It feels at times 5 years rolled into one, so much has happened but then in a flash the year has gone and it’s January again. As my troubles started in December 2015, Christmas is always an emotional time and New Year a time for reflection. This year I laughed hard, hid less and was a part of some magical moments. Make memories and capture them too as eventually that will be all that is left. Nobody knows when their time is up, so live in the moment. Happy or Sad…it’s ok to feel all and every emotion as that is our bodies way of reminding us we are living.

Dream big but remember to dream small too and you’ll be surprised at how much and how often you achieve. Be Kind Always 💓 and you’ll find a way through.

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A Pea Size Problem…Support

It struck me when I was first admitted to RCHT and my parents had left for the evening on my first night how lucky I was to have family around, in fact I even mentioned this to the Dr who was assessing me. Some people less fortunate than me go through struggles like this alone and sadly with no one looking out for them they may not make it.  That is a reality I think about every day. I’ve always loved my friends and family but I think since my illness began I have a fundamental appreciation for all the little things as well as the big. The hidden gestures that are there and that mean so much. The small glance to check you are OK when you have a smile plastered on your face. The text, the e-mail, the cards, the hugs, and the jokes they all mean so much to me. My friends and family have helped me to stay me. The silent understanding that actually things can be pretty shit but I’m still me just a slightly modified form who has to think more carefully about what she does.

When it was suspected that I had mumps my Mum & Dad decided enough was enough and they were going to drive up and get me. At the time they were living in Cornwall and it would be a six hour drive ahead of them. I begged them not to come feeling sure I just needed to ride it out but they were insistent. The GP had asked that I come back to the surgery that week so on the way home to Cornwall we popped in. The GP I saw this time said I was dangerously dehydrated from all the vomiting and asked me to go to A&E to get re hydrated and checked out.  We have had many detours on the road home to Cornwall in the past but never to A&E. I just wanted to get home to Mum & Dads but to be honest by this point I was too weak to argue and they bundled me back in the car and off we went. To have my parents making the decisions and no longer feeling alone was amazing.

Often people comment to me that I am so strong but quite simply I don’t believe I would be strong without those that support me. Part of that is obviously the support they give me but the other part is a determination in me not to let them down, to see me sad, to see me weak. I do find it terrifying in letting those really close to me know when I’m not OK but as time has passed I am finding it easier to be more open. I can only put this down to the fantastic support I have received from friends, family, family friends and friends of friends.  I say terrifying as I don’t want to worry people, become a burden. I want to help others not be the one needing help. This has probably been my biggest battle over the three years.

When I question this I remember that this is my issue as the most incredible people have supported me in many different ways. I won’t mention names but I have decided instead to try and give you a snapshot of the kind of generosity that keeps me afloat because sometimes the smallest things means the most.

I have a friend that when in that terrifying December it all felt too much to tell my stressed-out Mum & Dad how scared I was feeling, I sent a message telling them how frightened I was. She didn’t freak out she reassured me. Just having that line of communication is so precious.

I have a friend that was convinced she was going to come from London to Cornwall to visit me and after repeatedly saying no… I finally said yes, seeing no end to my time in hospital and the strain on my parents face… and she came no questions asked… to Cornwall FOR THE WEEKEND…not even to see the sights…just a right sight which was me in a hospital bed!

It turns out I had not one but two friends that were going to drop everything and come and see me in hospital when another one messaged me to say that no question, she was coming with her Mum on a road trip! Lucky for her and my guilt she didn’t have to make the road trip but she did trek across London once I’d transferred and stayed with me until visiting ended so that my Mum could have the night off! Having done a full day at work and then a full stint at St Georges, she then had to make the trip home to Bedford whilst pregnant!

I have some family friends or more accurately friends that are like family who I have known all my life. Despite being terrified of needles, blood and most things medical, they still came and visited me. Whilst I could easily take the piss out of him (his wife has a stronger stomach!), which would be my default position, I also know how he felt as that would be me pre hospital stay, so instead, I hid all my cannulas so as not to freak him out! It was so lovely to see their faces even if I had been peeing into ‘hats’ all day (water deprivation test day). My lovely Cornish family.

We have beautiful friends that gave my Mum & Dad lifts to the hospital so that they could try and carry on and go to work in a tag team style. This meant that one of them was always with me. They sent cards and messages of support and it meant so much to us all knowing that my parents had friends they could count on and confide in.

My Dads lovely bosses let him work at my bedside and giving him that flexibility and peace of mind is something I’ll always be grateful for. They were also so kind to send me flowers and a card which I received on the way into theatre…it couldn’t have been more perfectly timed.

I have friends that came to St Georges as soon as I was transferred back to London. Then once out of hospital came to my flat making me laugh, telling me stories, making me feel normal and not minding the fact that I had to wee every two seconds! (Diabetes Insipidus is annoying now but when I think back to those early days I’ve come a long way… now it’s just every half hour lol!)

I have a friend that travelled all the way from Southsea to make sure I was in one piece and continues to be an amazing support and who I know I can always confide in without being scared of her reaction.

I have my fabulous 3 that pick me up, laugh at me and always make me feel a part of their lives even if I can’t always be there.

I have friends that have forgiven me for not being able to make their weddings, births of their babies, knowing that I will still care and share in the memories. Trust me I’ve shed a fair few tears of disappointment when the realisation sets in that I won’t make it.

I have the most amazing work colleagues (well actually so much more than colleagues they are fabulous friends as well) sending me treats and cards to hospital… A giant windmill, that brightened up my bedside, plush toys that came with me to scans, gourmet jelly sweets and chocolates that fed the gorgeous Drs & nurses whilst I went from investigation to investigation.

I have a special colleague that found the time to write to me despite putting in ridiculous hours at work, entertaining me in the hours after my parents had gone home and making me still feel part of the team.

I am lucky to have so many people looking out for me at work but another special mention to a lovely lady who entertained me with e-mails and stories of her family. She also in turn let me keep her posted with my stories… believe me life in hospital is never dull! She continues to be a tower of strength for me to this day and a lovely friend.

My flatmates were super stars sending me messages of support but most importantly taking my parents in when I was transferred to St Georges. Not having to worry about where they were going to stay gave us a chance to focus on my recovery.

Hospital can be a lonely place and I saw many patients who didn’t have the constant stream of visitors that I had. Even when I didn’t have visitors the messages and cards rolled in. As I gained my strength I used my time in hospital to reply in what I refer to as correspondence hour. This was the time when Mum or Dad had gone home and the wards became silent. Because of these messages, it never felt lonely and I will be forever thankful for the love I received. I had the biggest sea of cards at hospital and at home. It was lucky I was in a window bed in both hospital wards as I could display them all around me!

The enormity of what My Sister, Mum & Dad have been through and what they have done for me will never leave me over these last 3 years and I can’t put it in to words right now.

The kindness of the Drs, Nurses, Consultants, Surgeons, Health Care Assistants, Porters and Radiographers will never leave me.

The support & kindness didn’t stop once I left hospital. Three years on I am once again overwhelmed with support as I take on a challenge in support of The Pituitary Foundation. I would have liked to have taken on a challenge such as a trek or a marathon as they feel big and momentous, but sadly I am not strong enough…YET! I have therefore decided that this year abseiling, although a smaller challenge for some would be equally terrifying but also within my reach. In fact I can’t quite believe looking back over the last three years that I am even well enough to attempt this. Tentatively I decided to make this public to see if anyone would join me and to date not one, not two, but 12 friends are joining me. When I think about it too much I want to cry so instead I am just over the moon happy with the thought that these magical people will help me raise much needed awareness for the wonderful Pituitary Foundation.  7th July is just around the corner and I can’t work out if I’m brave or stupid but either way I am determined to highlight the work that this small charity does to help support people like me who had their lives turned upside down (and back to front) They are a passionate team relentlessly campaigning for a greater awareness so that patients don’t feel isolated and alone, so that they don’t go untreated and most importantly they can live a ‘new’ normal life by learning how to manage their rare diseases.

If you would like to donate even just £1 then please find my Just Giving link here. If you can’t afford to donate then I please just ask that you share my story, follow my blog and raise some much needed awareness for Pituitary diseases.

It’s true what they say ‘throw kindness around like confetti’ It is free after all and you never know that one little smile, message, gesture, kind word might be enough to keep that person going for another day.

Love & hugs Sarah xx

A Pea Size Problem…Fatigue

Hello! Sorry I’ve already broken my New Year’s resolution of a weekly blog by missing a couple of weeks (oops) but I am back and here are my thoughts and feelings on Fatigue which many Pituitary patients suffer with.

‘When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.’ Henry Ford

Fatigue sounds like a fancy way of saying you’re tired but believe me it’s not. Fatigue can mean different things to different people but for me fatigue is all consuming.

In the early days I really struggled but I was accepting of it. I was just out of hospital and tiredness was to be expected. I was very weak as I had only just managed to eat again after 6 weeks. We all struggle after being ill so for me this was all part of getting back on my feet again. I lost the ability to concentrate on reading and even watching TV felt exhausting. Sounds ridiculous but that’s how it was for me. Audiobooks became my saviour both in and out of hospital.

To start with I used to take myself out with my Mum who had been camping in my flat. I was still living in London at the time and my parents in Cornwall. Luckily my lovely flatmates were very understanding and accommodated the extra bod in the house (thanks Amerland ladies)! We used to literally only do a circuit around the block and then I would have to have a nap. Eventually, I remember sending my very reluctant Mum back home to Cornwall and feeling confident I could handle this on my own. In my head it was no biggie, I was ready to get on with things, desperate to get back to work for some normality, and she needed to get back to her own life. The first solo walk out of my house… I am not going to lie…was scary. I was quite shocked at how vulnerable I felt. What would happen if I went too far and didn’t have enough energy to walk back? What would happen if I forgot to take a drink with me (Diabetes Insipidus) or there wasn’t a toilet nearby (also Diabetes Insipidus)? Thankfully overtime I built my strength and confidence up but I had to adapt to a new way of thinking. I got the bus to places I wouldn’t have thought twice about walking too. I avoided strange looks on the bus, and the nagging guilt that I should be walking when I only hopped on for a few stops (prob more in my head then those around me). I remember once walking part way to meet a couple of my colleagues (lovely Amie & Jo) who met me for brunch in Putney (as I had yet to return to work) and getting a bus the rest of the way. This was a route I used to walk all the time without thinking and now it came with so many things to think about before I even left the house. My sister bought me a Fitbit which has been amazing in showing me my progress over the last few years, I would definitely recommend. The steps I do now are incomparable to what I was able to do then. It really helped me see when I was having a good day and still does. It helps me to justify to myself why I might feel more tired without just thinking it (fatigue) has hit me again.

As a laid back girl used to living a spontaneous life in London. My life consisted a busy job, drinks after work, seeing friends at the weekend in and out of London, the odd cheeky date, travelling to see my sister in Kent or my family in Cornwall but crucially never really having to plan too far ahead. I once quit my job to go travelling on my own because I had no ties! I guess therefore for me the ‘fatigue’ part of My Pituitary condition has been the toughest to handle and in some ways feels like it has robbed me of that spontaneity. It is the hardest pill to swallow and despite having to take a nice selection of physical pills each day, they are a piece of cake compared to this!

The best thing about writing this blog is being able to see how far I’ve come as I am still frustrated daily on all the things I miss out on. Don’t get me wrong I am also thankful for all the things I can still do, and the new appreciation it’s given me. It would be an absolute lie however to say I don’t miss the freedom of catching up with friends without thinking. Happily I can say, 3 years on I am just starting to plan some of these things but that’s the thing, I do have to plan which kind of takes some of the fun out of it. Some of the things I have to consider are my plans the next day (can I recover)? Will I have enough energy to get home (hitting a wall is not fun when you still have to actually get home)? What does my work week look like (am I in or out of the office)? What does my weekend look like (Can I schedule naps)? Have I remembered to bring enough medication? (Do I have buffer)

Fatigue can also creep up on you and as such has made me reluctant to make plans for appearing like a flake to my friends. This is not a reflection on them as they are unbelievably AMAZING, but a reflection on myself (yes, It has been said that I worry too much). Once back at work I spent many a weekend in bed having an actual ‘duvet day’ recovering from just the sheer energy of being at work again therefore seeing friends was out of the question. I felt so guilty about these especially when the sun was shining outside but I couldn’t physically get myself up and in time I realised it was best to give in and not fight it so that I would be ready for the week ahead.

Mornings are the worst for me as I don’t produce any cortisol. Whilst most normal people to start to build this naturally through the night ready for the morning, for me this just isn’t happening (click here to read more). It makes me even less of a morning person! I now set my alarm super early so that I can take my meds and then get out of bed once they start to take effect. Taking them once I was up was actually putting me at risk of an Adrenal Crisis (something I only found out after having an Adrenal Crisis, an unpleasant lesson to learn!) by taking them once I was already up and getting ready.

Fatigue can be lonely. Sometimes I went to my sisters for the weekend and this was both lovely and tough. It was great to be with my family and spend time with my beautiful niece Neve but on bad days I wasn’t able to play. I couldn’t explain to her why I couldn’t pick her up or play and the temptation to join in was too great as she is so much fun. Sometimes watching on the side lines was just too hard and I’d take myself off for a sleep. I would worry that when my friends and colleagues asked me if I’d had a nice weekend or what my plans were that I had become the most boring person known to mankind!  I felt like I was losing my personality.

I managed to Phase back to work in April 2015 but just as I was making progress I had to have a Pituitary Biopsy (more about that in another blog). Undergoing neurosurgery meant I had to start this process again and I was devastated. I am lucky enough to love my job and I thrive on being busy and this just felt like a major setback. I am pleased to say I did successfully return to work BUT it was tough and probably tougher than I admitted to myself at the time.  I was happily just going from one day to the next day, with a sole focus on surviving the day. I remember days when I left the office tired, but feeling OK, and by the time I got to Charing Cross I could barely climb up the stairs. I physically had to tell myself to put one foot in front of the other just to get myself on a train and safely home. Whilst I was managing work fine, they saw me at ‘my best’. Lucky for me (and those bills I had to pay) my peak hours were working hours, as that’s when my hydrocortisone (replacement steroids) would have kicked in. I had no energy in the morning and none left in the evening. I would be in bed by 8pm at the latest (rock and roll I know!)

I attended a Pituitary Conference in 2016. This was approximately 18mths after I had first become unwell. My sister accompanied me as my parents were still living in Cornwall and the conference was in Leeds. It was a real eye opener to me. There were a couple of introductory talks that really resonated with me and these were by the lovely Sammy & Pat at The Pituitary Foundation. There was one quote in particular I wrote down by H.Jackson Brown Jr

‘If you can’t change the direction of the wind, adjust your sails’

This was lightbulb moment for me. I couldn’t change what was happening to me but I could change the way I do things and thought about things. I was used to being so independent, and hated asking anyone for anything but I realised that in order to move forward I needed to ask for help.  I had batted away so many offers of help over the last year as I felt so much guilt for being so ill and causing so much worry that I found it very hard to let people help me. After listening to Sammy at the conference I realised that asking for help wasn’t failing but would probably actually help those close to you feel better as they would physically be able to help you when they felt so helpless. After this sank in, I sat with my Mum and we agreed that she would do my washing & ironing for me (amazing) and help me out with housework (could do with a little more dusting!). Joking aside it really took some effort to let my Mum do this, as she has been by my side throughout. My Mum has made some pretty monumental sacrifices herself as a result of my illness, not least giving up her own job and moving from Cornwall to Kent. As she constantly reassures me she is happy to do all this for me and I would do the same if the situation was reversed (this is true we are a very close family). By letting My Mum help me this has meant that if I do have some energy at the weekends, I do not have to save it for chores but instead can enjoy a tea and catch up with friends or playtime with Neve which is invaluable. You only have so much energy a day so spend it wisely on the things that will make you happy or make sure you don’t blow it all at once, pace yourself. (More wise words from Sammy). I think the analogy Sammy used was if you have 1 hr of ironing to do split this into 4 lots of 15mins so that you still achieve it but without wiping yourself out. I try to apply this to a lot of things now (not ironing…I mean Mum enjoys ironing, but I did not get that gene) and if a task feels too hard, I don’t say no, I just break it down into manageable chunks.

I am pleased to say that 3 years on (is it really that long, I thought I would be cured within days!) I am managing much better. I have started to be able to see my friends and take longer train journeys. Just last week I stayed overnight at my friend’s house in Southsea, which was a bit of a milestone for me for all sorts of reasons (thanks Rach for having me, a wonderful friend and therefore the best guinea pig for a trip!) 12mths ago I would definitely not have been able to manage that, maybe not even 6mths ago. I am now even starting to be able to exercise again which has been great as it has given me an energy and confidence back that my condition had taken away from me.  I try and strike the balance of pushing myself so I feel I have achieved but not tipping myself over the edge. Of course I do not always get this right, I am human after all, but I have wonderful family and friends who pick me up when I fall and that’s what life’s all about. Illness or no illness, supporting each other is key to a happy life. So far 2018 has been great (I realise we are only in Feb, but let’s celebrate!) I had a positive MRI result. I completed the TM Active challenge. I have signed up to Abseil the orbit for The Pituitary Foundation (visit my just giving page for more info). I have hosted a small tea party for some of my lovely friends. I went to Centre Parcs with my sister, bro in law, niece and nephew and instead of being a spectator on the side I was able to join in (not necessarily keep up with…let’s be realistic) with the gorgeous Neve and Logan. 2mths into the year and so many gorgeous memories made, and here’s too many more to come.

My biggest learn over the last 3 years is not to be afraid to ask for help, it is not a sign of weakness but a sense of strength that together you can tackle anything. Good Days and Bad Days as my lovely Jnr Dr told me at RCHT. I saw a quote recently that said ‘Every Day may not be good, but there is something good in every day’. That is so true, I treasure the little things and I store up all my happy memories for when I have a tough day.

If you’ve made it to the end, congrats! I ramble I know! You’ll probably all need a good sleep. Thank you so much for your recent support following the articles on Metro Online & Mail Online. I have been overwhelmed by all your kind comments. It was a bit of a gamble as I know how the press like to jazz things up. I am very conscious that Pituitary conditions effect everybody very individually and that is part of the complexity of diagnosis and treatment. It’s a snapshot of my journey, which is very complex (and journalists have a word count) but I hope it was insightful. To reassure you I am still on a journey but I am in much better shape than 3 years ago. My main reason for agreeing to talk to the press was to raise awareness for the wonderful Pituitary Foundation as they are a dream team who are making real differences to patients’ lives. They are a small charity, with a big heart and a wealth of knowledge, ready to support patients and their families.  I can’t thank them enough.

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Says it all

Something I have to remind myself of

Weekends in bed, amazing what you find on your phone...Must have been reassuring my Mum via whats ap that I was in bed resting! Can't beat a bit of Neighbours (no judging, we all have our guilty pleasures! It's nostalgic and strangely comforting watching childhood programmes!)
Weekends in bed, amazing what you find on your phone…Must have been reassuring my Mum via whats ap that I was in bed resting! Can’t beat a bit of Neighbours (no judging, we all have our guilty pleasures! It’s nostalgic and strangely comforting watching childhood programmes!)
My Fave little Niece and I making memories!
My Fave little Niece and I making memories!
Its the little things in life that make us smile.
Its the little things in life that make us smile.
My niece reminding me that even when I'm napping she reminds me we had fun. Those stickers get EVERYWHERE
My niece reminding me that even when I’m napping she reminds me we had fun. Those stickers get EVERYWHERE
My poor Mum camping out!
My poor Mum camping out! Plus a whole host of get well cards from my amazing friends and family!

A Pea Size Problem…When nobody tells you your eyes are wonky

2014/15

This still cracks me up… I mean I know I couldn’t see out properly but being in bed both at home and then in hospital meant I hadn’t looked in a mirror for a while. I didn’t exactly appreciate what other people were seeing and why my ‘I’m fine, I’m fine’ (Ross from Friends Margarita style… love that episode, Friends fans you know what I’m talking about!! I’m FINE) was not entirely convincing anyone!

My Mum sent me these photos today as there is one specific story she loves to tell about my eyes. It’s the time I insisted she take a picture for my Big Sis (Kate) to prove that I was fine and hospital was treating me well. That she didn’t need to worry and should concentrate on getting to full term with her pregnancy. As I think I mentioned before we are very close sisters and she was beside herself not being able to get to me as I was in Cornwall and she was in Kent. Her exact words at one point were ‘get this baby out so I can get to my sister’. She does has a flare for the dramatic and pregnancy hormones were raging but I felt she needed reassuring. I mean seriously, she’s my rock but there was no way I would have let her put her or the bub at risk for little old me. I also had my two other rocks… Mum and Pops by my side… and they pretty much never left it, apart from when I forced them home to get some some sleep. Lucky is too simple a word to sum this up, they are magical, as is my Pops’ employer who supported him in supporting me, laptop and all at my bedside. Mum gave up her job too to look after me. Magical are also all those on the Wheal Coates Ward at RCHT who waived visiting hours so that I wasn’t alone. Human kindness is a wonderful thing (something you’ll hear me say often), costs nothing and is priceless. I hope one day to be able to pay it forward.

Anyway with that in mind I asked my Mum to take this picture. I did briefly wonder why she was so reluctant. I mean for anyone that knows my Mum she’s a snapper… there with the camera whether you want it or not (Most of these Hospital photos she took, and at the time, I was not exactly a willing participant or even occasionally a knowing one but today I am glad she did as it really documents my journey and shows me how far I’ve come). The picture in question is quite horrific (below for your reference) and my sister’s immediate response (although they didn’t tell me) was what the hell have they done to her?!’ Well ‘they’ lovely sister, as you so eloquently put it had done nothing BUT The Pituitary Gland had done something or rather the inflammation surrounding it. The inflammation was actually so large at this point it was now pressing on my Optic nerve (all information I found out later as we either didn’t know or hadn’t digested.)

This inflammation meant that for me outwardly I couldn’t see properly without closing one eye or covering it. My two eyes were simply no longer working together. I knew that everything was a blur and that the hospital lights were adding to my headaches and nausea but I had no idea why. I often had to have the curtain drawn around me to block out the light, much to other patients bemusement, as I think they just thought I was trying to block them out!

The whole time I was in RCHT & later St Georges I had no idea what was wrong with me but I was just quite frankly relieved to be there, with someone looking after me and thankful for the brief periods I was not vomiting. I therefore just went along with all the tests in hope that we would get to the bottom of why I was so poorly. For those of you that know me, the fact that I was relieved that I was in hospital was quite something and a clear sign I was in some kind of trouble. For those of you that don’t, I am THE most squeamish person… scared of blood, scared of injections, scared of hospitals, you know the kind of person that watches Holby or Casualty behind their hands. ( I now watch 24hrs in A&E…Am so proud of my graduation, even if sometimes that is also behind one hand!) I am completely in awe of anyone who works in a medical capacity, true super stars and so thankful for the NHS.

As well as an MRI, I was sent for a visual fields test… My Mum wheeled me down with the Porter and after a long wait and a brief lie down on a bed, (as I couldn’t really sit or cope with the lights in the waiting area without feeling like I was going to pass out or be sick…Or look at my mums blouse for that matter… it looked like a magic eye puzzle!) my test began. Visual Field tests are fun aren’t they… you know you’ve all probably had one if you’ve ever had an eye test. The one where you press a button as soon as you see the light… well hilarious for me with my wonky eyes BUT interestingly even with my eyes streaming by the end, as it seemed to go on forever, I came out with a good result. This is because independently each eye was OK, but because of the inflammation pressing on my optic nerve they were not working together. Whilst we were waiting for a treatment plan we came up some temporary fixes to try and help me… tissue… a cotton pad… and my personal fave a pirate patch…. yep from a fancy dress shop, no expense spared (thanks Sue!)

I must point out that I still had no idea that looking at me from the outside was quite an experience as one of my eyes quite literally had a mind of its own…! It was only when my lovely friend Claire came to visit me (from London, I KNOW, incredible right) and my Mum was insistent I wore my patch, that this was bought to my attention. I said no it’s fine, I’ll just cover my eye with my hand if it gets too much and it’s alright if I sit at this angle. Mum stopped me and said that quite simply, it wasn’t about how I was feeling but that I would freak Claire out!!! I asked what on earth she was talking about and she showed me. OH! Thanks Mum for making me wear the patch, I’m sure Claire was very grateful! What also bemused me at this time was my sister, who can cope with pretty much anything and yet she couldn’t cope with the eye thing…something she wasn’t too subtle about… ‘put your patch on’ was often shouted at me from 100’s miles away if I answered a FaceTime call.

Over the course of the next 6mths I intermittently had problems with my eyes and in fact that is probably the first thing that signalled that things were still not OK (along with nose bleeds and headaches) after I was discharged from St Georges. When this happened the patch went back on, so that I could cope with walking around as it can make you really disorientated and nauseous. I spilt drinks all the time in and out of hospital as when pouring from the jug I was always pouring slightly too far to the right. I had to adjust my mind to pour too far to the left so that it hit my cup spot on… skilled I know!

When I was out of hospital recovering, my eyes went wonky again…The patch was my saving grace, particularly outside, otherwise I had no spacial awareness. I always felt like people were walking too close to me or that I would bump into them. Hospital corridors and supermarkets were problematic and going downstairs certainly made life more interesting. Some days it felt like the crystal maze just getting out of bed!

Undeterred and desperate to reconnect with the outside world, I arranged to meet one of my friends. It was also a test run to see if I could cope with the commute. I was sure this would not be a problem as if been doing it for years but my Mum needed some convincing! I decided to meet my friend Lizzi at the Southbank via Waterloo (one of the busiest stations) in what was probably not one of my most intelligent suggestions. As somebody so used to rush hour and tubes that I’m often on autopilot, I was quite shocked at how overwhelmed, disorientated and vulnerable I felt. It was like being a tourist but in a city I loved and knew so well. Everything just felt unfamiliar and like I was having an outer body experience. People whizzed by me without a thought and I couldn’t walk as fast as them or see them in time, consequently getting in their way (Karma quite clearly catching up with me, for all the times I have moaned about tourists). Walking down the steps at Waterloo to the South Bank was quite comical as I kept thinking I was going to miss a step and take a tumble. I figured if that did happen then I’d just have to style it out and use it as another funny story to tell. I was determined to find a way to carry on as normal. I was thankful that I still had the use of one eye, some people are not so lucky and I am well aware of this. Anyway I did get to my destination and the gorgeous Lizzi soon put me at ease. We chatted about her wedding plans and the fairy tale it was going to be (it was and I’m sure it will feature in one of my blogs!). It was going to be fit for a princess (of course, as she is one). Lizzi was just generally being the amazing person she is, treating me like the same old Sarah, which is exactly as I wanted… I was after all still me, I just looked different, mostly like a pirate.

Friends are just the best and I am forever thankful on a daily basis for mine.  I had SO SO many people sending me messages in hospital that despite my wonky eye, I tried to message back to each and every one. I did this in what I called ‘correspondence hours’ (the time after my parents had gone home and I was alone in hospital). So thank you , to you all for keeping me sane, making me feel loved, and making me laugh. It meant so much and I’ll never forget it. Apologies though if you got some odd messages or typos… you may now realise why if you’re reading this! I’m pretty sure too that all my cards were the envy of other patients and lucky for me I had a bed by the window to put them all up!

From the medical side of things I was referred by my wonderful Endocrinologist (literally she is the loveliest) to an Ophthalmologist (eye Dr to you and me). Quite a common combo of medical professionals for Pituitary patients…throw in a maxillofacial consultant (as you do) and I did and you’ve got the trio! If you really want to you can add a neuro surgeon! I had a great one but more about that another time.

I am very fortunate as my consultant endocrinologist manages to get me the fastest possible appointments and advice. By being under care at St Georges I am also very lucky as my Ophthalmologist was part of Moorfields (specialist eye hospital) as they run a clinic at St G’s. Not so lucky for me is that that place is busy busy busy (Just preparing you in case you ever need to go) and probably my least favourite waiting room. It’s very chaotic which for a Pituitary patient, with an eye problem, is not ideal but I know they have given me the best care and I’m very lucky. I’m also very used to waiting rooms these days and now have some coping techniques in the form of mindfulness (Sarah style). As a result of my first Moorfields visit I wore a prism on my glasses for a bit which definitely helped if anyone else finds themselves in this situation, I would recommend, particularly if you need to work. That was one of my main concerns with my eyes. I worried that it would slow down my recovery back to work and I was already itching to get back as I had been off work for a substantial amount of time. I needn’t have worried as as soon as the prism had been fitted I was able to function at a computer screen and some sort of normality began to resume.

Fast forward to Dec 2016 when I had a eye problem of a different kind… I woke up one morning to discover my eye had swollen. Odd but hey odd things happen to me these days. I was not overly concerned, other than the fact it meant I was probably going to be late for work whilst I sorted myself out. I thought maybe it was a sty or an infection. I thought I’d just monitor it but eventually I had to give in and took myself to the GP. I don’t like to bother them unless it’s serious and has become far too much of a regular already! After a few trips the GP, I ended up at my local A&E on my GPs advice as it was baffling him too. With my now mounting medical history, we didn’t want to take any chances. On the plus side I’d not been to this A&E before so could check that off the list…well not through the front door unaccompanied by an ambulance anyway! My pops came prepared to keep me distracted and entertained… by reading his newspaper and book (lol).

I took them through my history (in the form of a ringbinder… so many hospital letters and photos filed as it helps explain the history to date and stops me forgetting the order and the medical terms… it’s exhausting but necessary). From here they decided to refer me to a specialist as although concerning it wasn’t an emergency (in the same way a piece of glass in my eye might be…quite right by the way I would rather that patient was seen over me!)

Alongside this I also emailed my Consultant as everyone was getting quite concerned. My consultant spoke to my ophthalmologist who didn’t think it was Pituitary related but they wanted me to get checked out by another Moorfields specialist (this triggered alarm bells in my head… but I remained calm on the outside). Back to St G’s I went, and met with a lovely consultant who was of course mystified by me. She sent me for a CT scan at Moorfields (Old Street) and said potentially I would need a Biopsy. Well I thought, at least it’s out of my hands now and I’m seeing the best people…what more can I do, so I did what I always do…carried on as normal for the next couple of weeks. Work distracted me and all was fine, until the phone call. I was actually at my Grandad’s for a pre Christmas gathering when I got the call. Sure enough a Biopsy was required and I needed to come ASAP in Jan. The emotions I had unknowingly bottled away came flooding back… surgery again! However, after a brief cry on my sister, I pulled it together and thought that’s fine I can do this, I’ve been through worse and survived, this is just another blip and hurdle to conquer. Annoyingly I had to tell work I’d be off again but hopefully a week at the most and I’d be back as soon as I could. My boss was incredibly supportive and I was booked in for pre op straight away.

My main concern with operations is not the surgery itself but my Diabetes Insipidus & steroid dependency (I will write a blog on this) as you have to be nil by mouth. Hard enough at the best of times but for me virtually impossible. I had to explain all of this to a new set of medics as Pituitary conditions and D.I are rare. Luckily by this point I was a bit more practised and understood the conditions a bit better myself. My Super Star Mum had made me a pack of all the information sheets from The Pituitary Foundation and this proved invaluable and the Drs were very appreciative. The nurses and Drs were lovely as always and I was taken very good care of. I can’t stop pointing this out as I know how worrying going into hospital can be and I just want to reassure you that everybody works so hard to look after you, that the thought is often worse than the actual event. Surgery I am pleased to say went well and my consultant, as promised left with me with the tiniest of scars! I wasn’t really worried about this, I was more worried I wouldn’t be able to open my eye again! I didn’t actually voice this fear…as I felt, as I always do, that there are people far worse off. As long as I was alive that’s all that counted and I should stop being so silly! This is slightly irrational I know!

Thankfully after an anxious wait (as these results always take time) my biopsy results confirmed that it was not cancer (I can’t tell you the relief I felt). It also showed that it wasn’t anything else scary either. I am however none the wiser as to what might have happened but likely to all be interlinked with whatever caused my Pituitary problem in the first place. The inflammation had gone solid and was full of lymphocytes. This time a huge dose of steroids coupled with my normal steroids (more about these wonderful/hideous things later) reduced the inflammation and with part of the lump being removed during the biopsy, I am relieved to say there is no lasting damage that I know of. In fact nobody would know unless I pointed it out!

The ambiguity of my condition is hard to manage and probably the biggest emotional rollercoaster. I can be heading upwards one day or for months and then all of a sudden I tip over the edge as the enormity of it all hits me. Thankfully as time goes on, I know I can climb to the top each time with the support of those around me. Physically my body also goes on a rollercoaster ride. It always feels like I’m finally getting somewhere and managing to stabilise when something else happens. I was so disappointed with my eye, as I had just started to feel better. It had been a long 2 years of putting my life on hold and I thought 2017 was the year I’d get back on track and be able to start reducing my meds and start seeing my friends again but there was obviously a different plan for me. At times like these I always remember what one of the junior Drs said to me when I left RCHT to be transferred up to St G’s. ‘There will be good days and bad days Sarah.’ I didn’t quite realise she meant 3 years on…but I held on to the fact that there would be good days to come again and there were…lots of them! I am regularly discussed at MDT’s for my Pituitary condition BUT Touch wood one year on and my eyes have remained drama free! The rest of me not so much but I’ll save that for another time.

Honestly, eyes are useful and we take them for granted (understatement of the century!) Oh and I can’t not mention, that as a get well present, my parents got me two Where’s Wally Puzzles. I know jokers the pair of them! They didn’t even intend it to be funny just something to do whilst I was recovering…. seriously you can’t make this stuff up! Pure comedy duo! (Love you Mum and Pops… one year on I have completed one of the puzzles, just in case you were wondering)

Enjoy the pics… I look like a beauty as always… I mean you think you look rough in a selfie! Looking at these now, I can’t quite believe I was surprised that when I went to work like this my lovely colleagues were very concerned. I also can’t believe how ill I look in the early ones at RCHT. I knew I’d lost a lot of weight as I’d not been able to eat for a month but I didn’t really think I looked like that. I definitely don’t think I processed how ill I really was (sorry everyone for all of the worry caused) but inside I was calm and fine and happy to still be here.

If you’ve made it to the end thanks for reading! You probably deserve a medal! I have a tendency to waffle…but hey that’s me, and I want this to be as honest as I can be!

For those of you that can spare a pound then please feel free to donate to my Just Giving page. Me and some of my fabulous supporters will be abseiling in July in support of The Pituitary Foundation. Click here to read more  If you can’t then that’s OK too, please just keep sharing my story to raise awareness for the wonderful Pituitary Foundation as I will no doubt be needing their support for years to come.

The Infamous Pic… Cheers Big Sis, I’m fine so stop worrying! I mean I can’t imagine for one second why she freaked… ooops
Cheeky Nap
Here she is again with the camera… thanks Mum!
And when Pops is in charge of the camera… (a bit of his phone case and fingers I expect… Love you Pops!)
Me checking that I’m respectable to go out in public… questionable even before I was ill (lol)
Me & My Niece Neve… she looks as impressed as me!
Jan 2017… The Mystery Swelling at its finest
Excuse the eyebrows… didn’t want to scare the threading lady! They are still neglected one year on… ooops. Although that swelling is giving me an impressive arch!
Quite Bulbous in this one, had started to go solid, was soft to start
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Pre op in the waiting area… I’d just come back grinning from seeing the consultant and anaesthetist to my parents wide eyed chuckles/ hysterical laughing…! At least they weren’t going to forget which eye!
Post op selfie to let everyone know I’m fine… prob on reflection not the wisest! (I blame the general anaesthetic ,makes you do and say some funny things… sorry to all those that received… I was fine though!!)
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Important note… Wear your Medical Idea Bracelet if you are steroid dependent and or have DI as in op they will need to know this and may not have been briefed and equally post op in recovery whoever is looking after you will need to know! They may not have been the person you spoke to before op.
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Neat Stitches… the complete opposite of my hair and eyebrows!!
First look after taking my bandage off! Apart from a little stinging and discomfort all good!! Amazing surgeon
And one year on... puffy face from steroids... but normal eyes and enjoying life with my two of my faves... Niece & Nephew!
2018. One year on puffy face and huge weight gain from steroids but enjoying life with two of my favourites… Niece & Nephew cuddles!

A Pea Size Problem… Diabetes Insipidus

As a result of my Pituitary Problem I now have another rare condition called Diabetes Insipidus (Water Diabetes). Probably the most complex part of my condition and hard to understand.

I was diagnosed with D.I whilst in RCHT January 2015. It was one of the last investigations I had before being transferred up to St George’s.

I was so relieved to have something concrete, in some form of diagnosis after 3 weeks in hospital that I think I’m probably the only person to ever have cheered at this result! For those fellow D.I sufferers, don’t worry I didn’t cheer for long as I am now fully aware of the reality of living with D.I

The reality for those that don’t know is that most days I want to drink a lake. This is not an exaggeration! When my D.I flares up I will want to drink anything and everything. It’s like an outer body experience and I can’t really focus properly until I have quenched the thirst which is an impossible thing to do. So basically I just keep drinking until sometimes I feel like I want to pop and yes you guessed it I can also wee for England! It’s a hard balance as my body can become dehydrated or overloaded if not managed correctly which can be dangerous particularly if it starts to effect the sodium levels. I have been known to get up in the night and search for anything to drink even though my body wants to be asleep my mind is actively seeking to quench the thirst

Diabetes insipidus is not diabetes mellitus , which is the diabetes that we are more familiar with and also a horrible illness.  The amount of times I’ve had my finger pricked for blood sugars in hospital is quite unbelievable but hardly surprising as most medical staff will never come across a patient with Diabetes Insipidus. I now carry a card and information pack from The Pituitary Foundation as it is much easier that way, especially as I am most likely to be admitted to hospital in an emergency situation and potentially not able to speak for myself. To be honest you’ll prob still get your finger pricked and every time you meet a new nurse or Dr you’ll explain again but that’s why The Pituitary Foundation is so important as they are constantly trying to raise awareness on our behalf to keep us safe. If you’d like more info on D.I or to download and create your own info pack then I would recommend visiting The Pituitary Foundation website where there is a wealth of info. Please click  here

The two main symptoms of diabetes insipidus are:

  • extreme thirst
  • passing large amounts of urine

According to NHS website in very severe cases of diabetes insipidus, up to 20 litres of urine can be passed in a day. TRUST me I’ve been here. I can only tell you it is utterly exhausting but entirely possible.

Before I knew I had Diabetes Insipidus I just thought I was really good at drinking water! You know how ordinary people struggle to meet the daily intake… not a problem for me. It’s quite the opposite… I drink too much. As I became ill that September, I did have this excessive thirst that could not be quenched, I now realise that was DI. Once in hospital my pops was forever refilling my water jug whilst other patients were struggling to even drink a glass…Then there was the night of the lemon barely…orange juice…Ribena…protein drink thing that was on my table as I couldn’t eat. I consumed the lot I was so thirsty and couldn’t get out of bed. I felt quite ill after that and I still can’t look at lemon barley in the same way but that is how it is, when you need to drink you need to drink and all reason goes out the window… it’s insane!

When I was told they were fairly certain it was Diabetes Insipidus (Water Diabetes) but to be sure we could do a water deprivation test… I didn’t really know what to think. Me & My Mum decided that nothing could be worse than some of the tests I’d already been through so some discomfort for the day would not be too bad especially if it would provide us with some answers. I have to say whilst it wasn’t pleasant it wasn’t the worst thing I encountered. So if you need to have one be reassured that it isn’t painful just uncomfortable. Try to have someone with you to help distract you.

A water deprivation test is just as it sounds… Being deprived of water. So I was nil by mouth that day. I had to have regular intervals of blood tests, my weight taken and my urine or ‘pee’ (as they like to call it in hospitals, me I prefer wee) measured. See the thing is with D.I is that even if I wasn’t to drink I would still need to wee all the time!! My body can’t regulate water properly so there is no easy fix to this. It is utterly exhausting. The test itself was fairly straight forward. A lovely nurse looked after me ( I think I was a bit of a novelty from her normal day), she had the lucky job of measuring my wee… I was pretty much a pro at this by my 3rd week. Filling up cardboard commodes and we had a good giggle along the way. I even had a commode chair by my bed which my Mum said to the bewildered nurse… ‘These are quite cool really, a bit like something you’d see in Ikea!!!’ I mean Mum trust me nobody actually wants to wee in one of these much less have one in their living room!! I wasn’t really sure what the test involved or how it would play out so just went with the flow.  I was pretty desperate as the day went on as having nothing to drink and continually weeing had left me in a pretty sorry state. I remember wanting to lick condensation from the windows and it was so bad at points that I was fixated on a spot on the floor where somebody had spilt a drink. My mind was all over the place, I couldn’t concentrate, I couldn’t sleep. My Mum arrived at some point through the test to sit with me which helped a lot. Around 3pm the Drs came back but this time they didn’t take any blood and instead told me the test was being abandoned. I remember feeling distressed thinking all this for nothing but the reason it was being abandoned was that I had lost so much weight from the test that it was unsafe to continue. It was evident to them that I definitely had D.I. As soon as I was allowed to drink I downed jug after jug of water which in hindsight was not the best idea as I started shivering uncontrollably and I had basically overloaded my body. I had an injection to stop the thirst and this took effect pretty quickly and as my Mum tucked me up in all my blankets, I returned to ‘normal’ whatever normal was at that point and enjoyed a much needed hug and chat with my Mum who had taken to climbing on my bed with me (good job she’s only little)

These days I take Desmopressin in tablet form and over the last 3 years I have successfully managed to reduce my dose. I am trying even now to reduce this further. I have some days where I don’t need my meds until early afternoon and some days where I need it as soon as I wake. Sometimes the Desmo doesn’t work at all and I’ll be weeing every 15mins but this apparently not uncommon but as yet nobody knows why. Its advised that you have a break day to give your body a chance to reset but this is only good if you can spend the day at home as you will need to be in the comfort of your own home surrounded by drinks!! I always need my evening dose or I can guarantee a night of weeing every 15mins even if I haven’t drunk anything.

In the beginning I found it very hard to manage and often felt quite panicked as it can disrupt even the simplest of days, like chatting with friends or going to the supermarket. Everything felt like super human effort to leave the house. Commuting and going to work was challenging and there is one memorable time that I left work and was so thirsty by the time I got off the tube at Embankment and onto a train at Charing Cross that I was gasping and had bought every drink I could carry… as soon as I sat down, I laughed out loud at how ridiculous it was and I took a quick snap with my phone, sent my mum a messaged to say I think I have a drink problem… I think she was thankful it was all soft! My money is no longer spent on clothes but drinks as I can never be without!! I will never travel anywhere these days without ensuring I have a drink on me, I try and make this water but sometimes there is an overwhelming craving for something cold and fizzy. Apparently that’s to do with the nerve endings at the back of your throat being momentarily satisfied.

I can tell you a few stories about living with DI but I’ll hold back for now, it definitely makes everyday activities more challenging and at times your tongue so dry that you feel like a dog with their head hanging out a car window but after a while you get more practised, prep better and learn a few tricks that help you to just get on with things. I don’t let it stop me , it’s just a part of my life now! I used to be really embarrassed but I have found it helpful to talk and laugh about it with my family, my colleagues and friends so that if I have to dash to the toilet then it’s not a big deal or if I have to down lots of drinks or leave a meeting mid way through there’s an understanding there. If your comfortable with it they’re comfortable with it!

I don’t think anyone can quite understand this condition even if you have it and especially if you don’t. My parents are wonderful and have been my rocks throughout but my Mum quite often says to me oh I’ve drunk a lot today too… by this she means she’s managed to drink the recommended 2L for once… for me I quite regularly drink 9 Litres a day!! I hope that all this water keeps my skin youthful & my nails strong… I mean there’s got to be some perks!

My Mum knows I have had a bad D.I day as my face becomes ‘puffy’! Her words not mine and whilst puffy would not necessarily be my word of choice it has become something of a code word for us and it is good to have someone looking at you like this as it is not easy to notice these things yourself. I am lucky to have a family that has stuck by me on this rollercoaster ride and tries to find as much info as possible for me to make it all easier to manage. They make me laugh constantly so I can forgive ‘puffy’ as it is after all just another part of me and my journey!

My family are often on watch and flag if I’ve forgotten to take my desmo.. it’s obvious to them as I start downing drinks to me it’s less so as I’m so used to it. Its more unusual for me if I don’t drink constantly. So it’s a balancing act and although a lot more manageable I still haven’t managed to get it right.

I have since learnt from others with DI that this is not out of the ordinary, lots struggle and I love hearing other peoples stories at The Pituitary conferences or via their blogs. Dr Steve Ball an endocrinologist speaks at The Pituitary conferences about DI and I have been lucky enough to be in his workshop twice. He has done much to demystify DI for me and my family. The thing I am most concerned about is when I have an adrenal crisis and find myself in an emergency situation. This has been quite scary as nobody in the hospital is really sure whether I should take my Desmopressin or not and as I am being pumped full of saline to recover it’s a confusing one. If anybody has had any experiences of this and how to manage I would love to hear from you!

Next steps is a more social one and to treat myself to a cheeky Gin every now and then with friends…Since having DI and being on a truck load of steroids for my Pituitary I have been nervous to drink alcohol as the desmopresssin puts the ‘plug in’ and that just means alcohol would flow around my body with no way out. Quite a change from a love of an after work gin or cocktail and weekend of socialising with friends (wistful sigh, those were the days and another part of my life I’ve had to let go). Over Christmas though I did enjoy a cheeky Gin (my favourite drink), a nice Baileys and even some prosecco and I seem to manage this OK, so cheers to that, definitely progress made!! Gin friends be warned I may be back (Lizzi, Claire & Rach!). I’m just a cheap date these days which I’m sure the men of the world will be relieved about!

In July this year with a team of friends I am abseiling down the Orbit in London to raise support for The Pituitary Foundation. To read more about the challenge and if you can spare a couple of pounds please visit my Just giving page in the link below.

Orbit Challenge

Always ensure there is water around if there is not going to be anybody to help you!
Bloods Bloods and more Bloods 
The Rainbow that appeared through the condensation of my hospital window and kept me distracted 
My Water Deprivation schedule

A Pea size problem… where to start!

A Pea Sized Problem…

Hello

I’ve been wanting to write a blog since 2015 and here we are in 2018…but I didn’t ever know how or where to start or if there had to be an order! I’ve decided this year no more excuses, just dive right in and take it from there… so here we are.

This is a blog to document my rollercoaster Pituitary journey…highs and lows, thoughts and feelings. This is mainly so that I never forget all it has taught me (lots) and so I can see start to see the progress I’ve made through the fog. I am also writing (jotting, rambling) in case there are others in the same boat. This illness can be very isolating, complex and confusing and I hope they can take some comfort that they are not alone just as I have done silently reading their stories over the last 3 years. My first post is actually the first contact I made with the wonderful Pituitary Foundation who have been a huge support to me once I discovered them! If you haven’t discovered them yet then please get in touch with them as they have a wealth of knowledge, advice and empathy which comes from real life 1st hand experience! Please don’t be afraid, reach out, when you’re ready. https://www.pituitary.org.uk

Email to Pituitary Foundation Oct 2015
Hello

I am looking for support after what has been a challenging year to say the least. I have been on your website many times but not quite managed to call the helpline as I am very emotional. I thought it may be easier to write first as I also find it very tiring to recall all that has happened.

Last August (2014) I became very unwell with headaches but I had had a very stressful year at work and just put it down to being run down. A small marble lump appeared on my face by my right ear. I proceeded to keep going to my GP even though I hate going to the Drs as something just didn’t feel right and the headaches were so unusual with nothing shifting them. A CT scan showed nothing in late September. October and November I still felt very unwell, with the headaches they would get worse but nothing would shift them. I struggled on at work trying to ignore them but my joints had also now become very painful.

In December I became chronically unwell, I was non stop vomiting at this point but my GP now thought it could be mumps. My face was starting to swell and I ended up at my parents in Cornwall (via A&E in Kingston on my GPs recommendation for dehydration from all the vomiting) so that they could look after me. December became a cycle at home of non stop vomiting and trips to emergency Drs and A&E, with only anti sickness injections able to prevent me from being sick and each one having to be stronger every time. This all resulted on me being on a drip at home before finally being admitted to Royal Cornwall Hospital (RCHT) on 3rd Jan (who by the way were amazing, I can’t thank them enough.) My joints by this point had become so painful that I couldn’t even unwrap my Christmas presents, my mum had to help me. I still can’t quite believe this happened to me.

At first they thought Parotid Cancer, but I was only told this the next day when instead they thought Lymphoma (this was supposedly good news as lymphoma was treatable but I can tell you now I was incredibly frightened and in utter disbelief). Having to to tell my parents this, was very traumatic and what was scaring me the most. My sister was also 8mths pregnant at the time and up in Kent, we are very close and I was supposed to be supporting her with what was likely to be a tricky birth, how on earth was I to tell her I was so unwell. MRI scans, CT scans, Lumbar Punctures, Biopsies, theatre , drips, followed but nothing gave a diagnosis and therefore no treatment as they didn’t want to mask anything. Neuro Sarcodosis looked likely but it looked like a pituitary biopsy was the only option to help diagnose. I was therefore transferred to neurology at St George’s in Tooting ( my local hospital at the time, I have since moved to Kent to be closer to my sister). The day before I was transferred I did a water deprivation test and was diagnosed with diabetes insipidus. St George’s did their own investigations MRI, Lumbar Punctures, Nerve testing before discharging me without a pituitary biopsy as at the time they thought the risk outweighed the benefit to me. After a month in hospital it was daunting being discharged without a treatment plan or diagnosis. I had a week of being Ok before almost ending up back in A&E. The GP did not want me to go as I was too poorly and complex a case to wait there and therefore a day of the GP paging the hospital proceeded. I finally managed to get an emergency appointment with my Endochrine consultant who I didn’t meet in hospital as I was in under neurology. At this point I have to say she is a lovely lady and I am grateful to be under her care as she is truly wonderful. I’m routinely discussed at the MDT meetings as I remain a mystery. I’ve had 6 MRIs in as many months ( something pre my illness was my biggest fear I’d ever have to have one, makes me laugh now!) lymphoma and tumours seem to be taken off the table and then in the next breath back on which has been confusing and left me feeling a little naive although at my last appointment my consultant assured me it was not cancer.

I’ve been on prednisolone since Feb but every time I reduce down everything starts to go wrong. I had a pituitary biopsy in May which I didn’t really prepare myself for how invasive that would be (I didnt even realise it was neurosurgery!) as I’ve tried to remain calm and positive at all times for my friends and family as I don’t want to create worry. I haven’t felt able to ask for help as I’ve had no concrete diagnosis. I now have a diagnosis of probable lymphocytic hypophysitis , hypopituitarism, diabetes insipidus. I had an Addison crisis beginning of August which terrified me as I had no idea I was at risk of this but now realise I am steroid dependant so I hope if this was to happen again I would recognise the signs earlier. I was aware my body was not producing cortisol but had no idea what this meant. I have put on a large amount of weight which I know is a small price to pay but it is another thing making me feel not like myself.

I am back at work, and am lucky to be surrounded by wonderful supportive colleagues. Work also provides a welcome distraction and focus helping me to feel normal.

It would be useful for me to talk to somebody to help understand if what I’m feeling is normal. How to cope with diabetes insipidus as just as soon as I think it’s under control it isn’t! Having coped for 9mths of going with the flow, feeling fortunate to be alive, I am now starting to feel incredibly overwhelmed and not sure where to turn for advice. I am very close to my family but this year has been an enormous strain for them and I can’t bear all the worry I’ve caused. I am used to being in good health, laid back and spontaneous, traveling to see my friends at the drop of a hat and I am starting to find myself feeling chaotic and anxious. I can’t remember when I last felt energised.

Anything you can advise or point me in the right direction would be much appreciated.

 

The words I got back from The Pituitary Foundation were amazing. Reassuring and full of advice. I look back at this now and realise how far I’ve come when day to day it doesn’t always feel like that! That’s why I strongly believe it’s good to STOP. REFLECT. BREATHE. And this blog will aid me in doing so as it’s so easy to say but doing it is another thing especially with how busy our days become.

I treasure the little moments they will brighten up even the darkest days so I store them up. Humour can be found in the unlikeliest places and has kept me going at all times . It’s true what they say ‘laughter is the best medecine’

Thanks for reading… more to come… who knows in what order!
Sarah xx

 

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Marble size lump to swollen face…looking every bit the Christmas Fairy (or not)
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Drip at home by the wonderful Cornish acute care at home team. Beyond my wildest dreams
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Playing the waiting game with my poor pops…something my parents  would soon get used to and are (unfortunately) well practiced at. My bed definitely more comfortable than those chairs!
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Smile for your sister…seriously Mum!

 

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