I know it’s been nearly 3 months since I last posted but I’ve been quite busy! I’ve finally caught up and replied to people all over the world sending emails – mostly supportive and asking questions and also a few trolls but hey ho, my advice is, if you are only going to send hate mail after reading my blog, then don’t read it. Again, for all those that are emailing me with questions, I am trying my best to advise you based upon my personal experience, I am not a doctor and would always advise that you seek an opinion of a medical professional. Finally, there are different ranges for different labs, countries etc! For one, I know many endocrinologists dismiss cushing’s if they receive results that are borderline or only slightly above average, whereas others, will accept lower results as proof of cushing’s, therefore, everyone’s journey is different.
I also want to say a huge thank you to every single person that has read my blog and kept up to date with my journey! It has now reached over 1.3 million people all over the world and I have been contacted by hundreds and hundreds of people that have felt isolated and scared about a potential diagnosis.
Anyway! After that spiel I’ll ramble on about how my recovery has been since my last blog post and what’s been going on in my life too. I’ve had a total of ELEVEN infections since surgery and suffered a third adrenal crisis. September was one of the worst months, in my opinion. Worst than the first three months put together, mentally. I had a third adrenal crisis as I had two unknown infections, a tonne of tests to check whether my pit has woken up yet and if I’m honest, my anxiety seemed to come back with a vengeance and I felt super low.
I had a day curve at the end of September which showed that my pit hasn’t woken up which means the surgeon got rid of the tumour 100% and also tested my other hormones – they’re still all over the place and will take a long time to become balanced so I am on a few other hormone replacements and have been referred to gynae to see if I am fertile anymore. After being put through the menopause at 23 and cushing’s, it’s pretty unlikely, but here’s hoping!
October was a different story, I still felt really weak but my mood did pick up and we went on holiday to Kos for 11 nights. I know it sounds cliché, but it was just what the doctor ordered, for both of us. I couldn’t do much due to my mobility but we had a private pool and I managed to swim 25 lengths without stopping (OK, it might not be 25 lengths of a normal sized pool, but I was still pretty proud!) Flight home wasn’t too good and I had to be put on oxygen because of the air pressure.
When we returned, it was all systems go to finalise the arrangements for my Go Orange event for The Pituitary Foundation. I felt like I didn’t have time to even breathe that week which was quite nice to feel somewhat normal, but it really took its toll after the event.
The event itself was a HUGE success, we managed to get local and nationwide businesses, newspapers and radio stations on board. We had 6 fabulous acts, a massive raffle and we raised over £3,000! We were also honoured to be asked to become official ambassadors for The Pituitary Foundation and of course, we accepted!
I feel so proud of that night and was overwhelmed with how many people turned up and I couldn’t have done it without Daniel by my side (well, me at the back of the room whilst he did his MCing because I was so nervous!).
That was now two weeks ago. Since the event, I feel like something has switched on in my body and I am FINALLY starting my recovery process properly. Without input from any infections, crisis’ or other pills. I am hoping my hormones and body are starting to balance and that my muscles are starting to wake up. My brain fog is definitely shifting, I feel much more motivated and determined in terms of what I want in life and exactly what I want to achieve. Just because I had to pause for a little while due to cushing’s and the recovery, doesn’t mean that my whole life is paused. Now I am starting to feel a little bit more like myself, I want to make the most out of my life, to see and do things I want to do.
The thought that I have to rely on 3 tiny tablets to keep me alive was so terrifying and daunting at first, but now it just seems the norm and I have accepted that I will probably never get back to how I was or who I was because cushing’s changes your brain, literally. So, this is who I am. I definitely think and look different to how I used to, maybe not to others, but I see it myself. Most people now seem to think that I’ve had the op, so I must be better. I really wish it was that simple. But I am happy with my progress, I wasn’t in September, I was beating myself up every day, thinking I could do more than I can or should do more.
In a weird, probably twisted, way, I am quite grateful that I have been through this at a young age because it has opened my eyes, put things into perspective and really made me evaluate things and appreciate things I never appreciated before. 1, my relationship, 2, my family and friends, 3, my career and life goals.
1 – I can’t even put into words how I feel. I’ve just spent a solid 15 minutes just staring at my keyboard. Daniel and I started our relationship about a year into my cushing’s journey, when I didn’t know what was going on, I had no explanation for my weight gain, mood swings and God knows what else. Yet, he stuck by me and made me his wife. He fought to get me my diagnosis and I have never ever seen any man so devastatingly upset when I had my surgery, it broke my heart to see the person I love more than anything, go through it. Since my surgery, he’s done everything for me. He’s been my husband, best friend, carer, counsellor and the list goes on. Together, we planned the event for The Pituitary Foundation and he is continuing to campaign to raise awareness and make sure more people know about pituitary conditions. If we can get through something like this together at such early years into our marriage, then we can face anything, I am confident of that.
2 – times like this DEFINITELY show who cares and who doesn’t; whether that is friends or family. I honestly thought I was lucky and when Dave married my Mum, he came with a really supportive and tight knit network who accepted me as Dave’s new daughter. Well, it seems in hard times, that certainly isn’t the case and I felt really emotional and quite hurt about it at first but now, post Brian, I really do not care. Dave’s Mum and Dad were always really generous and kind with Sam and I and I now believe they were the glue that held everyone together. My family used to have quite good relationships with Daves two brothers and sister (he has another sister but never really been close). And now, there’s little to no relationship and I actually don’t understand why. Even if they have something against me and my Mum, I honestly think it is disgusting that they show zero support for their own brother, when he would do anything for them. Especially when he has had a REALLY shitty 5 years. But, I guess there’s nothing weirder than families, which extends to my own because I believe there are people that have shown their true feelings and colours in my own family. I used to be a people pleaser and since my op, I have defo had a change of opinion there. I probably shouldn’t have written about that but it’s my blog and its a way of expressing feelings and opinions – freedom of speech, right?! There are kind, supportive people out there though in our families, I’m not being a cow and slating everyone, just the ones that have done nothing in terms of support and I don’t mean for me, I mean for my nearest and dearest! I’ve received well wishes from Mums extended family, Dave’s extended family, Daniels family and extended family and Hollies family, which is really heart-warming and appreciated more than I could ever explain! The last 6 months has opened my eyes massively, I’m not gonna be fake and pretend to like someone, if I don’t and it’s also proven to me who my real ‘friends’ are. I’m not really bothered anymore, because I’m now closer to some people than I used to be and weirdly, cushing’s has brought two new people into my life that truly know what I have been through and understand how I feel. Helen and Lizzie are both cushing’s patients and don’t live too far from me. I feel really lucky to know them both and I know that if I am having a down day, I can just talk to one of them and they get it. I’m not saying other people don’t get it, but they REALLY get it.
3 – my career. Being told I’m not allowed to work for a good few years was heart-breaking. However, it’s really made me re-evaluate what I want from a career. So, I’ve decided to apply for an MA in Terrorism & Insurgency from next September. There aren’t many places so there is only a slim chance that I would be accepted, but, I can keep my fingers crossed!!
This blog post I have literally just rambled, I usually take my time and do drafts and edit but I’m just gonna throw this one out there. If you have made it to the end of this, thank you and I apologise for droning on and on and probably sounding like a miserable, selfish bitch (sorry, Mum) but I swear I’m not, I just feel very passionately about certain things and people!
I feel like I am on the right path now and I can only get stronger and stronger!
Now, to get on with Christmas shopping and MA application! I will try and post before Christmas but I have quite a lot of plans with our weird friends Kim & Gav, going to the theatre and going to see the one and only LG.