It has been a few months since I posted – I have been so busy! We went to Mexico in April and had an amazing 11 nights away in paradise, drinking and eating anything we wanted. The heat made me feel SO good –since 2012, I found it really difficult to socialise and meeting new people scared the hell out of me; I really shocked myself (and Daniel) as I talked to so many different people without feeling super self conscious!
I didn’t do too much whilst I was there as I didn’t want to push my body and make myself poorly. Since being back, we have socialised every weekend with friends or family and we have been to Wales twice. This last weekend, Daniel climbed Snowdon for The Pituitary Foundation, raising over £1,200 in the process. It is something that I would really liked to have done, but my mobility is still pretty rubbish! I can’t even express how proud I am of him, he continues to help me each and every day and I genuinely don’t know what I would do without him. He’s taken on the role of Ambassador for The Pituitary Foundation, he’s done countless speeches, he’s the Charity Rep for his business area at Lloyds and we will both be running a Friends of Rotary group, supported and backed by Rotary International to raise awareness and make change in the community. His passion and determination is amazing and I can’t thank him enough for doing all of this as well as looking after me.
The rest of the time, I have been thinking long and hard about a new career path that is more suited to my “new” brain and body. Initially, I was more concerned about my physical appearance over my mental health. However, I know that I won’t ever be stick thin, I have to accept that my body won’t return to how it was before due to all of the damage that cushing’s did and the fact that I am on lifelong medication as well as having other health issues. I am who I am and I need to learn to love myself.
Mentally, this journey is the hardest thing I have ever faced. After my surgery, I ran away from my thoughts and tried to block out feeling low. I’ve now grown to accept that cushing’s and subsequent adrenal insufficiency can really affect your mental health and anxiety. Rather than take tablets that the GP gave me, I am trying to self heal. I’m not hiding from how I feel anymore and it’s good to talk. I try my best to smile and if something is bothering me, I deal with it. It’s absolutely normal for cushing’s patients to feel alone, it’s a very lonely illness and you often end up spending years fighting against medical professionals and even family and friends.
It’s taken a lot of adjusting since my surgery and now it’s been confirmed that my brain has physically changed shape, so I will find it very difficult to concentrate for the rest of my life and it’s likely that I may suffer from dementia at an early age as well as my life expectancy decreasing. I’ve almost accepted that, even though I do get a little emotional when I really think about it. My dream was to go into education and try to inspire people; however, that’s now virtually impossible, so I am still exploring other options.
I think it’s incredibly difficult to deal with your body and mind changing so much and knowing they’ll never return to what they were before. I’ve been left with so many hormonal issues, meaning that I will have to rely on medication for the rest of my life just to function each day and knowing that I may be infertile is a tough pill to swallow. Every single day, I am learning new things about myself and no two days are the same; some days I wake up and feel great and focussed but most I wake up feeling like my body has been set in concrete and my brain is full of dust.
It makes me incredibly sad that I can’t work like I used to, I can’t travel alone and that I can’t guarantee how I will feel day to day. BUT, I am so grateful to still be on this beautiful earth and I have learnt so many life lessons since May 2017.
It’s now only 3 weeks until we go to Kos again and I can’t wait. I feel so lucky to be going on my 3rd foreign holiday in just 9 months and it does make me realise how far I have come in such a short space of time. Life is a gift and I know for a fact that I used to take it for granted before I became poorly. I know that the last 6 years, I have overcome challenges that many people won’t ever have to deal with in their lifetime and I don’t think I give myself enough credit. This journey has definitely taught me that I am capable of so much more than I assume and that there really is no point caring about what others think. I live each day for ME, if I have a few days feeling like crap, that doesn’t matter, because I am still here, this is my new life and my second chance, so make the most of it. I
I have had absolutely terrible brain fog over the last week or so, so apologies if this isn’t very well written but I felt like I needed to write today!
As always, thank you so much for making an effort to keep up with my story. As I have mentioned before, I am not a medical professional, so I can’t give anyone who is pre or post diagnosis or surgery, any medical advice – I CAN be a listening ear and I can relate.
I’ll try write again before I go away.