After posting a bit about my experience with Adenomyosis on Instagram over the last couple of years, Ive has a few messages asking me to talk about it more in order to provide information for others and to raise awareness.
I had an operation on 16th May 2018 to have a laparoscopy to investigate my ongoing stomach pains, this was the day I finally found out what was going on with my body. I have Adenomyosis ... but what's that? what does that mean for my future? is there treatment? will I need more operations? I had so many questions. After months of debilitating stomach pains and two medical procedures the only answer I got was Adenomyosis ... I was given little to no information on this condition and the doctors seemed just as perplexed as me. I soon learnt that Adenomyosis is a condition in which the inner lining of the uterus breaks through the muscle wall causing chronic stomach pains and cramps as well as heavy periods. I have learnt that my Adenomyosis makes me more susceptible to UTI’s. Over the years I’ve discovered that when I get a UTI it tends to flare up the stomach pains and leaves me in a lot of pain for well over a week. So how do I manage this? Well going to the toilet regularly is a pretty normal thing for me...but when I can’t get there in time, that’s when a UTI flares up. I have to have the correct things in place to manage this. I use very mild antibiotic due to my body not being able to cope with normal antibiotics but a mixture of prescribed medication, paracetamol, warmth and rest tend to help me. To help manage my Adenomyosis I was put on a combined pill. This helps to balance my hormones and I cannot even explain how much this has helped. I have far less flare ups now of my Adenomyosis since taking Millinette, this pill contains both Oestrogen and Progesterone. I tend to take my combined pill for 3 months at a time and then come off for a week in order to have a period. The reason I have 3 months at a time is because having a period is far heavier and more painful when you have this condition. I take iron tablets 3 times a day when I’m on my period to help with the dizziness and nausea and get a lot of rest. I hope that talking about this subject can help someone out there. I think it’s so important to talk about these things and to stamp out the stigma around these conditions. Adenomyosis is a condition I’m still learning a lot about and trying to understand. But I think the most important thing is that you listen to your body.
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Sunday April 15th 2018 was the day I decided to take control of my alopecia and brave the shave!
A year on and I can say that was the best decision I could have made. The first few weeks of having a buzz cut where definitely the hardest. I felt like I got stared at all the time, I didn’t know how to dress to suit my hair style and I felt completely different, but over time things got better. I now feel more confident than ever and I’m proud to show off my buzz cut. It took me a long time to find my new fashion style but when I found it I felt amazing. I now feel more confident to wear bold patterns, bright colours and edgy styles. It’s all about having fun really. Alopecia has been a heck of a rollercoaster and I know it will be for the rest of my life. But accepting my difference and helping raise awareness of all types of alopecia has helped me to grow in confidence. May 2018 I suddenly started loosing my hair and a week later I began to have daily seizures. My whole world was turned upside down. I could no longer work and I completely lost my independence.
Six months on and I’m still battling with daily seizures and my alopecia continues to take my hair but I have grown in strength. Although I may not feel strong today, although I may feel down, lost and broken...I am still stronger than I was six months ago. Mental health shows itself differently in everyone. This is what mental health looks like for me ... One thing I’ve learnt since being diagnosed with Dissociative Seizures is that it’s important to keep the mind active. For months after my initial diagnosis I’d often hide away in my bedroom and try to avoid activitys which only led to my seizures increasing.
In the last month or so I’ve been working really hard to come to terms with my seizures, learn about them and try to do everything within my control to reduce the impact they have on my life. It’s no easy living with daily seizures and I’m definitely still working hard to battle them but I’ve learnt that keeping my mind busy and concentrating on activity’s that I enjoy seems to lengthen the time between my seizures meaning I have less each day now. My Neurology specialist explains that it’s important to understand Dissocitive Seizures in order to combat them. Trying to carry on with normal day to day life as much as possible is something that can really help to reduce the frequency of Seizures, however this is easier said than done when your collapsing in shops and on the street, but surrounding yourself with supportive people will really help to make this a little easier. I’ve had a few messages recently from other people who have recently been diagnosed with Dissociative Seizures and they are just starting their journey with this...I want people out there to know that you are not alone. All my life I’ve hidden my freakles, felt self conscious of my figure and battled with self esteem...but now...I’ve learnt to love myself a little more.
Loosing my hair knocked my confidence for ages, and if I’m honest...I never thought I’d feel beautiful. It’s taken a lot for me to get to this point in my life but I’m finally learning to love my appearance. I’m hiding my freakles less and less, embracing my hair loss and learning that my body is a canvas for me to express myself upon. Wear the clothes you want, express yourself through makeup or embrace your natural beauty...however you chose to express yourself adds to your personality and individuality. YOUR BODY IS A CANVAS 💙 Since losing my hair due to Alopecia I have adapted my style to suit my new short hair. Much of my wardrobe doesn't suit me now or I just don't feel confident in it. In this blog post I will talk about my favourite new clothing and makeup styles and how I make my new look work. I've always been into big, oversized jackets as they are cosy and use to go with most of my outfits but since losing my hair I feel as though I look like a pin head in them ... I love to wear bardot off the shoulder tops or tops with small straps as I feel they look more feminine and I feel more confident in them. When I started to lose my hair I never thought it would change my style this much. My makeup style has mostly stayed the same aside from my eyebrow routine. As I’ve recently lost most of my eyebrow hair, it now takes me twice as long to draw in my eyebrows. I use Benefit cosmetics eyebrow products which I find do not budge throughout the day. Losing my eyebrows has made me use different techniques and products on my brows that I’ve never used before and I now find myself using a lighter shade as it’s more complimentary to my short hair. Alopecia has changed my style and my outlook on fashion and makeup. I have been more adventurous with clothing styles and look forward to experimenting with glitter makeup looks for this upcoming festival season. 💙
A week after my hair loss started I had a friend's birthday to attend I found it particularly stressful trying to hide my hair loss and the fact that hair was constantly falling out. In the early hours after the party, whilst taking to my mum in my bedroom I had my first seizure. As you can imagine this was quite an alarming experience for my mum, she recalls my whole body shaking (I have spoken to my family while writing this post to write it as accurately as I can). My parents called for an ambulance and I was taken to hospital to find out what was going on. In the space of 6 hours I was regularly having 6/8 seizures an hour and I was very confused between them. While I was in hospital, they completed a CT scan and bloods but all was fine. At this point doctors questioned weather the seizures may be due to some medication I was on. I was discharged from hospital despite still regularly having seizures (around one and hour). My seizures went on like this for another 11 days, seizures every couple of hours all whilst I was still losing my hair. By day 11, my seizures had started to increase and I was having 20 a day, even in my sleep. Frustrating as I wake at the end of every seizure! On day 11 I was taken into hospital for further observations. I was in a bed in a room with three other ladies and definitely felt self conscious with people looking at me with the hair loss…. I could tell they were wondering what was wrong with me! After 3 days in hospital, I finally had a visit from the neurological team to say I had been put on a waiting list for an MRI and EEG. 1st April 2018...Easter Sunday I had my MRI and a week later an EEG at King's College hospital. My EEG at King's was made a lot more bearable by the lovely nurse who tried to make it as fun as possible...drawing a smiling face on my forehead. Two weeks later I attended a family wedding, my hair loss was becoming impossible to hide dispite the best efforts of my lovely hairdresser Sam. My mum managed to hide the biggest patches and I managed to get through most of the day without my head scalf. But it was that weekend that I decided I was going to take control, I couldn't control the seizures but I could have some control over my appearance and the stress the hair loss was causing me. On the Sunday as soon as we returned form the wedding my family helped me to shave my hair (you can read about this in my previous blog post).
A week after I shaved my hair to take control of my alopecia...I was back in hospital after a fall following a seizure, all was fine but my seizures escalated again following the fall. The following day doctors got hold of my EEG and MRI results and I finally had my diagnosis...Non-Epileptic Seizures. This diagnosis was a small relief to myself and my family as we all know epilepsy can be very restricting. But that still left a lot of questions...What are Non-Epileptic Seizures? How do I manage them? When will they stop? So here is what I have learnt. Non epileptic seizures can happen when there is a temporary problem with the way the brain is working. The brain may become “overloaded” and “shut down” for a short while when faced with some kind of threatening feeling, situation, thought or memory. Although it is thought stress plays an important part in these attacks, people can have these seizures at times when they do not feel particularly stressed. I certainly don't alway feel stressed, in fact I can be having a really lovely fun filled day. Yet my seizures will continue to happen... Non-Epileptic Seizure are definitely a rollercoaster to deal with and I'm extremely physically and mentally drained by them but I am determined to battle with them and one day win! 4th March 2018, while plaiting my hair I noticed a small chunk of hair fall into my hand…I wasn’t sure what this meant but as the night went on the small little patch where I was loosing hair started to get bigger and by the end of that night I had a 10p size patch of hair loss. I’ve always had very thick hair and losing some while brushing/washing was normal but this…this was different. As the days went on the patch of hair loss grew, my hair would tangle and matt as the lose hair would fall, it was truly heart breaking. Just 4 days after I initially noticed I was loosing my hair I chose to have my hair cut short, mostly to reduce the tangling but also to feel more in control of what was going on. 27th March and it was time for another chop … this time a lot shorter. For just under a month I was able to hide the majority of my hair loss with this new haircut but that didn’t stop the upset of watching my hair fall out. I would absolutely dread washing my hair, the aftermath was just horrific. 7th April 2018…a month after my hair loss started…I was diagnosed with Alopecia Areata. I mean lets face it, how do you react to that. It was shocking to both me and my family and I am still trying to come to terms with it. As well as loosing alot of my head hair I have also lost most body hair and I have been loosing my eyelashes, eyebrows and recently nose hairs (you need those to keep the boogers in). I try to keep as positive as I can but we all have our down days. A week after my diagnosis I decided to brave the buzz! For me, I didn’t know when/if my hair loss would slow down or stop so I decided to take control. It was a family effort, my mum dad and sister all took part in shaving my hair which helped ease the experience. I feel so much more confident and in control of my Alopecia now and I hope to raise awareness of Alopecia and help others
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Thank you ...
I'd just like to say a huge thank you for all the love and support. I really appreciate everyone that reads my blog, views my Instagram and supports me in life. |