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.