The Spoon Method and a mental health update…

Today, I had a really testing day but I also learned so much. I learnt more about myself and my condition, which is strange because when it comes to Addison’s, I’m usually the smartest person in the room. So I thought I’d share my day with you guys. I apologise now for the awfully long post, but on the bright side, you don’t have to read this.

At half 9 this morning, I had to attend the outpaitents department at my local hospital to have a short synacthen test done. Now I know many of you don’t know what one of those is, so let me explain it. They take your base blood and then inject you with this awful liquid that was imported from Italy, because there is a national shortage of it here, the same as my emergency injection kit, but i’ll get into that later. Then they wait half hour and an hour after injecting you with the syrum so they can see how your adrenal glands react. I had to have this done because after I gave birth to my little lady, some idiot doctor took me off them, when my blood pressure sky rocketed due to an infection. I then had to fight just to be seen by an specialist in Endocrinology just to get my tablets back because my gp was saying that my diagnosis wasn’t there so I didn’t need them. For the last 14 months, I have gotten sicker and because I haven’t had my steroids, I’ve had to taken extra care and a lot of extra naps, just to get me through the day. Hopefully after having this test today, ill be back on normal steroids again!

I was really grateful that the Endocrinologist nurse that was going to be doing the test was Jennii, because I already knew her and she remembered me. With a name like Ferrari, i’m a little harder to forget. I met her back in March 2013, when she was the nurse who gave me a day curve. . Again, this is another blood test, only this time, they are testing your blood to check if you’re on the right amount of steroids. I had the day curve on the Friday, which I slept through because I was actually quite sick and then on the Monday, I was in hospital with suspected appendicitis. For someone who cannot stand needles, I absolutely hate these tests. Yet, she remembered how much I couldn’t stand them and tried her hardest to keep the cannula open because she only wanted to give me one needle today. With a lot of hard work and pumping, we managed to keep the cannula in all day! We got talking about how I had been since she had last seen me and that she was surprised to read that I had given birth and even more surprised when she found out it was at the same hospital I attended today. And I mentioned everything from mental health to my blog and my novel and she was the one who gave me the idea for this post.

I have had so many people ask me about my condition and it wasn’t until today that I could really explain it. I mean sure, we can discuss the medical terms of what it is. I don’t produce the hormones that I need in order to fuction. I have no immune system and my body attacks itself. The adrenal glands are little glands that sit on top of your kidneys, they release hormones at different points of your day and get you through it. Before you wake up in the morning, your body would have already released cortisol into your system and that’s why you have the energy to get out of bed in the morning. Mine don’t work to an acceptable level which is why I was on steroids right up until Luna was a week old. Instead of fight or flight, I have fail. My body goes into a crisis when under extreme stress and then it shuts down. I have two hours to inject myself and in extreme cases get to the hospital because I could go into a coma. How do you explain to a healthy person what it’s like to be sick? How do you explain what it’s like to have an autoimmune disease? How can I explain to everyone else the daily struggles that my life became at the age of 19? Well today, Jennii told me the answer and its the ‘Spoon Theory’ by Christine Miserandino, I would strongly suggest checking out the actual article, The Spoon Theory as I really will only give you a cliffnotes version.

She explains that Lupus, another autoimmune disease, is like starting the day with 12 spoons. Healthy people, don’t have to worry about their spoons, because they have a seemingly endless supply most days but for those that are sick, they have these spoons. You can never drop or forget about the spoons, the same way we couldn’t forget about our condition. You lose spoons for each activity you do throughout the day, because your body isn’t physically capeable of everything, you have to act accordingly. You can’t do as and what you please. You cant write a list of things to do for that day and expect to get everything done because your body can’t handle it. Before even starting the day, you have to get up and take medication. You have to take them, knowing they are what are keeping you with your spoons. You lose spoons before you’ve left your bed if you didn’t sleep well and even more so if you’re sick. The rest of day, you are limited and everything you do will cost you. Things people take for granted like doing the chores, can take me hours because I have to rest or my body pays the price with more spoons. I can take spoons from tomorrow but that would already put me on a deficit. Unlike healthy people, everything I do, I have to account for. I have to account for all the walking and exercise, for the lack of meals and lack of sleep. I have to account for physically stress that I put on my body as well as emotional and mental stress and most of the time, I use up all my spoons. So just hold on, because even though my life is limited and the pain can keep me in bed for days at a time, I still choose to socialise and even that costs me.

Now like I said, it was my understanding of her article that made me realise that if I explained my condition in this way, it might make a little more sense. Maybe people might understand why, especially at times when my body is attempting to battle an infection, that I’m a bit more reserved. Because I have less spoons to start the day and most of the time, its not enough.

After learning about the spoon method, I had to attend a therapy session and talk about how I was feeling. I had to talk about things that had gotten to me in the last month (I was quite poorly the last time I was supposed to have a session and then she went on holiday so it took longer than expected) and I just broke down in tears whilst she sat there and wrote goodness knows what down on her little notebook. She asked me how I was feeling and how I was coping. She asked about Luna and my eating. She just asked all these questions and I literally just cried because I was so exhausted from holding everything in that I just rambled. At the end of the session she had decided that I’m having a referral to a dietician so we can get me on supplements to make up for my lack of eating… So not only am I taking steroids, I’m going on supplements? Maybe I should hit up the gym and get massive… then again, maybe not. She also sat there and told me that my biggest problems and greatest drawbacks were confidence, self belief and self doubt. I have too much self doubt and not enough self belief or confidence. She said that I don’t see my self worth, I think that little of myself that I destroy everything good because I hit self destruct. I see myself as the problem for all the crap that I have had to deal with, and I carry it around to the point that it suffocates me. I think that little of myself, that I question why anyone would stick around, why anyone would care. And I need to change that. I need to believe in myself the way others do. I need to learn to love myself the way the most important people in my life love me. I need to believe that I deserve to be happy because right now, I am the only person standing in my way.

She doesn’t need a perfect mummy because they don’t exist, but she does need a happy healthy one.

I hope you are okay. I hope that you haven’t been too exhausted and that you’re smiling. Because believe me, the world needs to see your smile. Until the next time, Ferrari.❤️

Facing my fear… take two.

So a fortnight and a day ago, I wrote how I was supposed to be going to the dentist. It never happened. I had a massive panic attack and couldn’t face it. I couldn’t get out the door, I was physically sick and exhausted my body because I couldn’t sleep. I made sure to shut people out and I avoided answering questions about it. However, I made another appointment with the hopes that I could get myself out of the door. That appointment was today.

There weren’t too many people that knew it was today because I didn’t want to make a big deal about not going if I couldn’t. I woke up at about 3 from a bad dream and knew today was going to suck. Luna woke up about 4ish and didn’t go back off to sleep for ages, so my nights sleep was broken which meant I was shattered. It was about 8 when I woke up properly to Luna playing which is so cute and then reality hit. I got triggered because I was scared about something going wrong, I was scared about having a bad reaction or not being able to come home because my blood pressure had dropped and I didn’t want to go.

I was in a state and that lasted most of the morning. I cried so much that my eyes were swollen and I just wanted to sleep and yet I knew I couldn’t. Luna was being funny so I didn’t want to leave her without Kieran so it meant I had to find someone else to come with me. Which caused drama! Finding a replacement chaperone isn’t the easiest thing last minute, but it had to be done. Thankfully, I have a lovely neighbour who agreed to come with me and it was pretty awesome because we had a cool catch up and it had been a while so it was really nice to hang out with him even in the circumstances. I also have an amazing best friend who told me I could do it and every chance they could. And I am beyond thankful for them. I’m pretty blessed!

Before I had left for the dentist, I must have cried about 10 times. Every time I would stop and then 5 minutes later, start crying again because of nerves and fear. Yet, as soon as I left the house, I knew I would do it. I knew I had it in me because I found my strength. And I went. I met up with him on the tube and we chatted the whole time about life and silly things. By the time we got there, we had covered everything from fashion to Netflix and it was pretty interesting. After going up 26 floors and waiting for what felt like an eternity, I was called and I walked to the chair that had kept me awake and yet I didn’t have any work done!!

I sat in the chair under the impression that I was beginning the sedation and thank goodness, I WASN’T!! I had worked myself into such a state over a bit of pink mould and some imprints of my remaining teeth. It was so strange and it was like nail varnish remover was in my mouth. (It wasn’t. It was from the stuff they put on the mould to stop it sticking to the gum shield thing.) I swear, when she was getting the top mould off I thought she was going to take my remaining teeth with her. It was uncomfortable. But that was it.

I sat in the dentists chair and I didn’t cry! I did that! No tears at the dentist for me today! That’s an achievement and I am so proud of myself for doing it. Although I was scared and had worked myself up, I managed to sit there and not get upset. I kept my emotions in check whilst she checked my teeth and took the imprints. I did that and it may have taken years but I know that I am stronger than fear.

I want you to push your boundaries. Face your fears. Because that’s the only way we can grow. Today, I felt a sense of pride in an achievement that two weeks ago, seemed impossible. I want you to embrace life because fear needs you to be scared in order to win. And I know I don’t want to live in fear of the dentists anymore. One visit down, a fair few more to go. But that’s one step closer!!

I hope you are all well and having a great day. Thank you for reading. And I’ll write again soon. Ferrari ❤️

Imagine we embraced the things we loved rather than criticise what we don’t.

So I was looking through google to find a quote that suited my previous blog post regarding my recovery through an eating disorder and originally posted it along side my usual update on Instagram (if you don’t follow me already, go check out OpenUpWithMe and give it a follow, thank you) but decided the picture with my delicious meal was better suited so sorry if you say the same description for two pictures. I forgot that I used to post a quote along side my work and wanted to do that again, and this quote seemed like the perfect one.

Imagine if we obsessed about the things we loved about ourselves. – http://www.HealthyPlace.com

I am a sucker for always looking at my flaws. I hate my smile, my teeth are repulsive, breast feeding destroyed my boobs, I would do it every time. I have stretch marks in the weirdest places, not places I originally thought id get from pregnancy, a forehead you could land planes on, a snowman has more of a tan than me, I burn like a lobster and then get freckles… not even fair, and I hate my thighs. I think that I’m too fat and that I have three chins, I mean I do, when I make it that way but not naturally. However, this isn’t a post to go on about the things I hate about my physical appearance or my mental state of mind but rather to focus on the things that are positive and I do like about myself. Shouldn’t take too long.

Firstly, it will always be my eyes! Eyes are the first thing I notice about someone and I truly stand by the saying that your eyes can tell you the most about a person. I absolutely love blue eyes, I could stare at them all day. Yes I am aware how creepy that sounds but they are beautiful. I mean I think it’s because Kieran has gorgeous blue eyes and I look at his all the time, however, if I’m being honest, it goes Blue, Green and then brown. I can honestly say that light eyes are better. BUT, the person who has the best eyes to me is my daughter and she has my eyes. I have very big brown eyes, and when I do my makeup, I spend the longest on my eyes, because they look amazing when done properly.

Granted a filter has changed the colour of my eyes but I love them.

Secondly, I love that I have such a big heart. I mean I know that it means I get taken advantage of but I wouldn’t want to change. I always look for the best in people and will generally forgive a lot. I care deeply for my friends and family, without asking any of them in return. I think that has a lot to do with being emotionally sensitive but I am lucky to know love in huge amounts. I love that I am always there for people because even for a moment, I’m generally making them laugh and taking their mind of the shit in their life. I love that on a good day, I am approachable and bubbly, because I have met some of the greatest people, being the way I am. And those are the people that have never asked me to change. I love that I am completely unique. I know there is not another person out there like me and I wouldn’t want to follow the crowd. I may have anxiety but I’d rather stick out for being different than conform to the norm.

Lastly, I love my hair! Now it has taken a very long time for me to be comfortable with my hair because I have battled alopecia for years. It was back in 2011 that I started to lose my hair and I hate it. The first patch I got, was basically the top of my skull and no matter how I tried to style my hair, you could see this patch. My confidence suffered so much that my mum brought me a wig just to see me smile again. Since then, they come back but they are tiny. When I started to lose my hair, it decided to change from naturally straight to curlier and its been an adjustment. I remember for years saying how I wanted curly hair and now I get to have it. It just sucks straightening it as the wind will change my hair, so I spend an hour straightening it for the air to fudge it up within minutes.

Its taken a while but…
I finally love my hair!

There aren’t many things that I love about myself but slowly the list is growing. I mean I know I’m vain, and if I think I look good, I will share a good selfie but that’s generally because I think my eyes look the best. I hope that one day I can love myself the way others love me but for the moment, I am happy with it just being a few things. What do you love about yourself? Embrace them! Until the next time, I hope you’re having a great day wherever you are in the world. Ferrari.❤️

I wish I could eat…

Have you ever tried to live with an eating disorder? Let me tell you, it’s the worst!!

I can’t remember the last time I ate properly. To actually eat at least one meal. I just can’t. I can’t physically bring myself to eat and I know it’s stupid. Okay! I know that I can’t control my emotions so I control my eating. Granted, I’ve stopped forcing myself to be sick after eating, now I’m just starving myself.

It’s not because I want too most of the time. I’m just not hungry. That’s the truth. See, starving yourself shrinks your stomach. You don’t feel hungry, you just feel sick. And then you eat, and you feel worse. So you question the point of eating. But not eating steals my energy, steals my sleep and still doesn’t stop. But I can’t bring myself to eat properly. I lost four stone in two months because I thought I was too fat. I weigh less than 8 stone and I think I’m too fat. You can all sit there and tell me I’m not, but you’re not my head so it doesn’t matter. My head tells me I’m fat. I look in a mirror and I see the fat faced chick that I was and I hated it. I looked healthy and I hated it. (I had not long given birth, so my face was still carrying pregnancy weight, yet I didn’t see it like that.)

I was pregnant with my little beauty and would look in the mirror and think I was fat. I hated being pregnant. It didn’t matter that I was carrying my baby, making sure she was healthy and eating enough to satisfy her, yet I couldn’t stand myself. I wouldn’t change it. But I couldn’t stand the fact that I went from 7 and a half stone up to nearly 12… she weighed FIVE POUNDS yet I had gained over four stone. So as soon as I stopped breastfeeding, I cut my eating down again and never picked it up.

I wish I could eat properly. I wish I wasn’t so paranoid about my weight. I wish I could enjoy all the foods I used to love. Maybe one day I will but for now, I just wish I could eat something. Anything. Because every time I do, I gag. I’ve tried eating little and often, I’ve tried supplement drinks and I’ve tried training my brain to think of a small plate as less food. Nothing is helping. Maybe. That’s what I’m holding onto. A maybe that the clinic will help me. Because I can’t be like this.

I NEVER want to be that size again.

Thanks for reading. I truly appreciate it. Ferrari❤️

#TimeToTalk

If you’re on Twitter, you’ll have seen this hashtag flying about. It’s about mental health and how we need to end the discrimination and stigma surrounding it.

I’m quite fortunate because I have a means of expressing myself through this blog and that’s my way of coping right now. But many people aren’t that lucky. They suffer in silence because they are scared to talk about their problems. That isn’t fair. But there are always options.

Now, I went to the doctor in order to get referred but you can do a self referral to mind and they are great. But there are people that you can talk to. And you shouldn’t feel ashamed. Plenty of people have an issue with their mental health but that doesn’t make you any less of a person.

Since I went to see my local GP, I got put in touch with the Access and Assessment Unit at my local hospital and have seen them twice with my third coming up in a few weeks. We talk about all sorts of things, and she just listens. Although she has a pretty good idea what’s wrong, and I’ve got one of my definite diagnoses, but I’ve still got a long way to go. She sat on the phone and just listened to me rant for half an hour because she knew I had a bad weekend. Just having someone to listen, helps.

She’s spoke to the psychiatrist who is willing to see me to start the weekly therapy process and I’ve been in touch with a dietician. That’s three different professionals who are helping me overcome my many issues. That’s three people that listen and help. They aren’t tearing me down every chance they get.

However, I know there are people that are going to read this and want to speak out and I will listen. If you need an ear, well I have two. If you need a distraction, well, I can try my hardest to make you laugh. You honestly don’t have to go through this alone. Mental health is normal. So many people have and will be effected in one way or another. Speak to people who want to listen. The ones who won’t tell you how you should be thankful because people have it worse. They won’t belittle you and make you feel like you don’t matter.

It’s okay not to be okay. You don’t have to have it together 24/7 and nobody should expect you to. But there are brighter days just beyond the horizon and you’re not alone.

I’m not afraid to speak out. #TimeToChange

Thank you for reading. Ferrari. 💝

Positive thought #1

To live would be an awfully big adventure. – Peter Pan

I said I wanted to post one positive thought a day in order to encourage myself to think more positively about life. It may not just be on my blog, but it will be on Twitter and the page dedicated to the blog on insta and Facebook. And today, I wanted my positive thought to be about appreciation.

Most people around the world would have celebrated New Years by now, which means it’s the start of 2019. A lot of people, myself included would have gotten drunk and celebrated the new year whilst others probably slept. But it’s still the start of a whole year.

This year can have endless possibilities. This year starts off blank and we get to fill in each day like it’s a page. And we have the choices on what we put in there and what we don’t. So let’s make this the best year yet.

I want to thank so many of you that have stood by my side throughout last year. I want to thank those that messaged me words of encouragement when I need it the most. I want to thank those that helped pick me up each and every day without once complaining. I know I can be a handful and those that are still here help me see that I’m still worth it.

Every single person that has read any of my blog posts from last year. Thank you. Thank you for taking time out to read the words I write and the emotions I displayed. Thank you to those that have shared my blog with others. It means a lot. I’m thankful that you guys help me write. Whether it’s my blog or my novel, I gain inspiration most days from you guys. And I thank you.

I’m thankful that I get to have the most beautiful daughter I could ever imagined. She’s truly perfect and I couldn’t ask for anything more. I’m thankful to the people who love me more than I love myself at the moment. Because that love is what truly says more than I ever could. I’m thankful that I have the most caring, loving, devoted father in Kieran because he would move heaven and earth if he could for that little girl. And that’s all I ever wanted for her.

Im thankful that I’m still fighting. My Addisons hasn’t and won’t beat me, my mental health hasn’t and won’t beat me. People haven’t and won’t beat me. I will not become a shadow of who I am to please what people want me to be. I’m thankful for who I am because I am one hell of a kick ass woman and I will not be defeated!

Thank you to everyone who helped me in 2018 and may this year be so much better for you. ❤️

To my readers❤️

The last time I wrote here, I said I’d do three posts about reflection and yet today I’m sitting here writing an entirely different post. I am sorry for that but don’t think I have forgotten. I just wanted to explain. I wanted to write again today even though right now, if I’m honest, I don’t really feel like writing.

First off, I wanted to say thank you to the 464 views I’ve had from 307 visitors. Each time my blog is read, I am encouraged to want to write more. That’s why I’ve tried to write something every week. The fact that some of you, have read post after post and followed since the beginning touches me. I genuinely feel like I have a voice and it’s being heard (or read as the case may actually be).

I may not be the best writer or well written but I always try. I may have failed my English qualifications but that never stopped me from wanting to write. I always wanted to keep a journal but I lacked commitment. I found it hard to write every day, and I didn’t just want to write “hi”. I found that when I did want to write, I could write for hours. I would write about whatever came to mind. So it didn’t matter how many times I got pulled up on punctuation or spelling, I always tried.

In the last month, I have found myself wanting to write less and less because the truth is, right now I’m not okay. I can paint a smile on my face and pretend for everyone but it won’t change how I feel on the inside. Now, my daughter brings me huge amounts of happiness and she does make me smile. But she can’t be awake 24/7.

On Monday I started my new job, I thought things were looking up for me. I felt confident and on top of the world. I was finally going back to work so that I could provide a decent future for my baby girl and give her a life that she is worthy of. I completed my first day and I felt great, even if all I had eaten was a few bites of a sandwich to take with my tablets. I went to sleep. Tuesday, when I woke up, my body was heavy. I had no energy. I couldn’t move and I didn’t even want to open my eyes. I felt horrendous. Yet I still got up, got dressed and walked the hours walk to work. I doubled my tablets like I was supposed to and was readyish to start back at work the second day. Even though I felt like a sack of shit and could cry because everything felt so heavy on me, I was in work ready to start. My boss saw that I was a completely different person and wanted a chat. We spoke about how although I was able to do the job in question, my body was my enemy. My problem wasn’t with my capabilities, it was that my body couldn’t handle the shift I did yesterday without paying for it. She tried to find some part time work for me to do so that I could come back to said job as soon as my body got used to being at work again. Unfortunately however, all the part time jobs had been taken so I was let go.

The hardest part wasn’t losing it and feeling like a failure because I hadn’t managed to keep it. It was because my body has limitations. I can’t jump feet first into stressful situations. It was that no matter how much mentally I am ready to be back at work, my body is telling me to slow down. Yet, I’m still not giving up. There’s a job out there that my body can handle. It’s just not the one I just had. Go figure. 🤷🏼‍♀️🤣

I will continue to write and you will get the posts about reflection. It’s just going to be a little later than anticipated. (They are in the drafts, I just want to make sure that they are showing a true reflection of the person I am.)

(Because I cant take a picture without a filter. My first day at work.)

Much love and thank you for reading;

@RariAyliffe