You’re a Mystery…

I think that he hardest thing for me thus far has been coming to understand how something that has such drastic physical change to your body can be so hard to find from a biochemistry perspective. My specialist opened my follow up with “you’re a mystery but we will solve the puzzle…”

So the Dex test was ok and so now we move on to the 24 hour urine and CRH test (which is tomorrow 🙈) I said to my insurance today that I have a CHR test and followed it up with, no that doesn’t sound quite right! CHR being a car of course! At least I got the right letters!!!

I did however have a really great weekend in the Malvern Hills, walking and spending time with friends. 6 months ago I was so fit and would have happily walked for miles and miles. Although I did walk pretty far and up some of the beautiful rolling hills, it was a struggle and of course I looked like a pregnant, red stripey zebra by the end! It truly is one of the strangest things to have.

I’ve taken to a half the face selfie, turns out that it is so much better for hiding the moon face. It has also gotten to a point where I have had to start telling people. I have had too many “off ill” days at work and I look so different that I think I owe it to people now to tell them. Not for their sympathy or offerings of help but for the future and not having to worry about whether people notice that I’m wearing certain clothes of try to hide that I look and feel terrible etc. I think that if the shoe was on the other foot then I would want to know and so that is why I have told more people.

To be honest Friday’s appointment was incredibly upsetting, I am trying so hard to be brave here, to see the positives, to remain calm and focused but the longer I go without a treatment plan and the worse I feel, the harder it gets. When you want to be doing more, feeling more, experiencing more and the only thing letting you down is your physical body it can be the most frustrating thing in the whole entire world! Meditation and doTerra essential oils (if you are interested in either of these please get in touch and I can recommend!) have always helped me but At this time they are note of a lifeline. Serenity, Balance and Vetvier have been particularly helpful!

At this stage I do have to give a HUGE shoutout to my incredible support system. I do believe that it is in times like this your true friends shine through and mine are shining brighter than ever. Just this evening I was having a panic about my test tomorrow and a very dear friend who happens to be a nurse called me after a text I sent. She calmly talked me through what would happen tomorrow and gave me some great tips for tomorrow. I am so incredibly blessed to have such great people around me and for anyone else going through any struggle or life in general I urge you to surround yourself with good people. A saying that has stuck with me ever since I heard it is that if you surround yourself with 6/10s you will only ever be a 6/10 but if you surround yourself with 9 or 10/10s then you have the ability to become a 9 or 10/10. When I first heard Eric Thomas say this I immediately re wound it and played it again. A leadership director whom I am fortunate enough to call my mentor and friend, often reminds me of how you are who you surround yourself with and that you must always stick to your core values. You will hear me talk about values quite a bit because I have come to learn how important they are! I think that is how I would like to close today because the past couple of days have tested my values and the people I have around me and ultimately my values and my 9 and 10/10s have come through.

“Winners focus on Winning, Losers focus on Winners.”- Eric Thomas

The Journey seems to have only just begun.

10 Weeks ago if you had mentioned the word “cushings” to me I wold have only associated it with horses and even when my GP gave me his diagnosis I had absolutely no idea that this disease even existed.

Let me take you back a little, In about March 2018 I started to see some changes in myself. As a very active and positive person I take exercise, nutrition and work pretty seriously and have always kept myself around the 10/ 10 1/2 (130-18 lbs) stone mark. I noticed that i was starting to gain a little weight and so naturally went on a strict exercise and nutrition diet. (even got a PT)  By the end of June i had less energy than ever, I was feeling what only i can describe as ‘mental person,’ my muscles hurt so much and I was slowly growing out of all of my wardrobe (which is every girls WORST nightmare)

I decided enough was enough and I went to see my Nurse, as i wondered whether it was something to do with my contraceptive pill, she sent me off for some bloods thinking that it was my thyroid and passed me onto my GP, who was extremely understanding. If you didn’t know me you would probably have looked at me and said that I looked fine, a little overweight but fine. He sent me for more bloods, ruling our leukaemia etc which came back clear, he then sent me for hormone bloods. It was at this time that i started to notice other things, the red stripey marks, indents in my skin and bruising, all things that really hadn’t happened before and all that seem to come and go in random cycles.

So, I  go back and my Cortisol levels are in the upper quartile, not through the roof but high enough for concern, he refers me to  a specialist in London. A week later I am off to London and my consultant is amusingly straight to the point, he listens and scribes, does all the standard checks, i explained all my symptons and how my body was changing. He asked to see a picture of me from a year ago, I showed a picture from the January (So only 6 months or so earlier) he took a long gaze it and then at me before announcing that it could in fact be a different person! (Not quite what every girl wants to hear! See the picture i showed him below) but i think it was at this moment that I realised that I do in fact look different and now to add to the growing list of symptons ‘moon face’ was added.

More tests were done, my blood pressure had gone from being low to being very high, my BMI had gone from normal to really obese (31) and I had put on just over 3 stone (42lbs) since February to now what was July, I am really starting to feel the mental toughness required. Although people tell you that it’s ok, it’s not your fault, it will get sorted, it is still my body, i have to live with the changes for right now and the frustration of not being able to exercise, lose weight, get on with stuff eats at me every day.

So I decided to join 2 support groups on Facebook and it completely blew my mind at how many people are on this journey too, all at very different stages which is why i have decided to start blogging. Not only will it help me but i hope that by sharing  my story that I will be able to connect with others and let people know that they are not alone. i will try and not make it too morbid my life certainly isn’t. I will share more about me as we go. I have more blood results with my consultant this Friday (14.09.2018) so will post again soon.

If you are reading this, thank you for being part of my journey.

Good company in a journey makes the way seem shorter. — Izaak Walton27656948_10215557394589365_4832499005739614776_n