My Story

Ok so this is quite hard for me to write but I have decided to try and write my story of my battle with my chronic illness. I've been procrastinating this for months but I need to write this. (Apologies if this seems all over the place, I just tried to write down my thoughts.)

 I find it hard to talk about my illness, I actually hate talking about it, I always try just to laugh it off whenever people ask me about it or I try make it sound easier than it is but I decided to write this for personal reasons, I think to get stuff sorted out in my head but also for you to understand where I'm coming from. And also so I don't have to explain my self multiple times, just makes it easier for everyone. >.<

So I guess I just start from the beginning...
My illness started in the beginning of 2015 (Jan-Feb) ... Going into the school year I was really tired and couldn't shake it and then the headaches started. 
Every day I had constant pressure in my head and pounding headaches, my left eye felt like knives were bring stabbed into it. I couldn't concentrate in class or do schoolwork in or outside of school. Because I was so tired and these headaches just wouldn't stop.

I gradually stopped going into school, I saw my friends less and less, and I didn't have the energy to pursue anything I loved.. I stopped choir, playing piano, viola and eventually stopped taking photos of my dolls.
I had a blog that I set up in 2014 but I just couldn't keep it up anymore. I just didn't have the energy to take photos, and to be honest the reward wasn't worth it. I was so unhappy with my life and my photography just wasn't what I wanted it to be. So I stopped. At the end of 2015 I stopped posting on my blog and taking photos of my dolls, really doing anything with them. My girls just gathered dust in their boxes and my camera lay forgotten in my room.
I cut the last thing I enjoyed out of my life.

My days just became confused in this painful, hazy fog that I lived in. I didn't leave the house much, when I did it was to walk around the block or go to the supermarket with my mum and the only people I socialized with was my family because they were at home. 
I grew attached to my dog, we would spend all day together.

1 year went by, and my family moved across the country so that we could get better health care. Because where we were living, no doctors would see us. We got excuse after excuse, I was too young or too old to see a doctor, my condition wasn't serious enough. I got so angry at the medical professionals because they just wouldn't see me, it made my self esteem go down and I just felt worthless because I apparently wasn't important enough to be seen by anyone. So my parents made the decision to move to a city with a better healthcare system.

I struggled in the first 4-5 months of moving, I still didn't touch my dolls but I yearned too! I was just so angry with myself for being sick and that my blog wasn't going anywhere, and I just couldn't explain what was going on because I didn't know myself! And it became a cycle of me having no energy to take photos, and me not posting on the blog or commenting on other peoples blogs.

I tried to read other peoples posts, but it made me so sad that they were out enjoying their dolls and posting and I wasn't. I just felt more and more isolated and became very withdrawn from the doll blogosphere and life in general.

No doctors have diagnosed me, they've thrown around ideas like chronic migraines, chronic daily headache, it could be something to do with the cyst I have in my head, a hormonal thing. But no one has given me a straight answer and a clear pathway to recovery. And I understand that it's difficult to diagnose neurological problems but I have just spent months at being angry at doctors, for refusing to see me because my problems aren't that severe. I'm just jumping from medication to medication but none of them seem to be working.

I slowly found that I didn't have anything worth being happy for in my life, nothing to pursue and that really took it's toll on me. The first few months I was fighting hard and staying positive, but when you are constantly banging on a concrete wall with your bare fists it gets tiring after a while, and harder to smile. And when you have nothing on the other side of that wall to keep you fighting than you just want to give up.
And to be honest there were times when I wondered what was the point... Living in this constant pain and fog, I used to be one of the smartest kids in the class and now I couldn't even read a page of a book, or reading a blog post made my head hurt even more. I couldn't remember or understand what I had just read and I forget things so easily. I struggle to find words and I just sometimes stop mid sentence because my brain just blanks on me. I rarely go outside without sunglasses on because the sun gives me even worser headaches. 

Everyday I have a headache, I don't actually remember what's its like to not have a headache. Whatever I have is not considered 'life threatening' but life is meant to be enjoyed, and loved and lived to the best it can be and this illness has definitely threatened that. I found it so hard to enjoy it when I had nothing but the pain in my head.

I eventually decided that I couldn't continue along the path that I was going, I had nothing to live for in my mind. Nothing that made me want to get up in the morning or to keep fighting. I felt really depressed all the time, even though I didn't show it on the outside I felt so empty inside.
So I wanted a clean slate where I could focus on doll photography and improve, my first step was saving up for an editing system. This immediately allowed me to play and have much more creativity with my photos but it also gave me that spark that I needed to propel me forward.

I started to take pictures again and it was one of the greatest things ever. I was finally giving my girls some attention and together we both gave each other a small bit of joy that I hadn't felt in a long time.

I decided to make a new blog and in June of 2016 I made Lydia's Dolls, I created this blog so I had something that keeps me accountable and I am making myself post something every week so I can say I did something enjoyable every week, so that I don't slide back into that depression.

I set myself goals, and use my dolls to fulfill those goals, whether it be sewing to use my concentration or to go out and take photos for a longer period of time, or typing up a blog post. But you must understand, everything is an effort for me. Looking at a screen, I find it hard to type when the headaches are bad so I type as slow as a nana and taking photos always leaves me so exhausted.

But I am not going back to where i was a few months ago, I need something of the other side of the wall to keep me fighting and my hobby, and my little family of dolls, are that. 

I also created an doll Instagram account to keep me accountable to, and I set a goal to try post daily so that means I have to take photos, even if I don't feel like it. And I have had so much support over there, every single like and comment and follow just means the world to me and makes me want to keep going!

So if you are here, welcome! Dolls are my lifeline at the moment they are helping me out of a very deep and dark hole that I thought I would never get out of and some days to be honest I don't, there are days when I just sit and cry because it's all too much and I can't handle the pain anymore but then I remember my promise and I try me best to stick to it.

Thank you so much for taking the time to read this, this was mainly for me to get my thoughts in order because after months of constants assault it can get a bit muddled in my head, but please realize, I wrote this for you to understand what is going on for me at the moment. I wrote this so that I could be honest with you, I am an extremely happy person and I am quite quirky, but this illness has really taken it's toll on me. And I just want you to know me as a person! I'm Lydia, I love dolls like theres no tomorrow but I also have a chronic illness that limits me in some areas.

I believe we are all on a different journey and this is mine, my dolls and my hobby are playing such a vital part in my recovery. So if I ever talk about myself not feeling well you know what I'm on about.

I also want to say thank you for supporting me, you may not know you're doing it, but just you guys following my account makes me want to keep taking photos and just enjoy life as best I can. My family has been so supportive and have helped me so much and I cannot thank them enough. And I like to think of you guys as my doll extended family lol :)

These past few months since setting up my blog and insta account have been so amazing, health wise not so much I have my ups and downs, but I have made friends here that are so kind and share the same passions, and I have inpirations that keep me pushing my creative boundaries, my brain is constantly creating even in the pain. 

Thank you so much for understanding and I cannot wait for the day when this illness is in the past, but for now I am still fighting, I stumble and fall a lot but this blog and my dolls are keeping me going and are on of the main things that keep me going.

Happy Doll Loving
Lydia

October/2016

16 comments:

  1. Wow. I knew that you had some chronic illness, but I never realized it was that bad! I hope that you can find a cure Lydia. (Also, I want to say more, but I'm terrible with putting thoughts down)
    Bella

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    1. It's Ok Bella! I understand hon! And I hope we find on too :-*
      -Lydia

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  2. I have episodic migraines, and my mom has them too. She used to have chronic migraines, and had to have Botox Migraine shots, and they worked for a while, but then stopped working. If you don't mind me asking, have you taken Imitrex, or Sumatriptan? They are what I take, and really the same thing.

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    1. Oh wow! I've never taken Botox Migraine shots, but I have a massive fear of needles! I haven't taken those yet! But if they work for you I should ask my doctor and see if they agree! Thanks so much for telling me :) xx
      -Lydia

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    2. You're welcome! My mom has taken the shot form of Imitrex/Sumatriptan, and I take pills. I used to have a nose spray form, so if you end up taking it, I am sure you would find some form that pleases you ;) I have personally not taken the Botox, I don't think I could handle it. I have to travel an hour to get to my neurologist. I am glad you're feeling better, and I hope you reach the point where you are episodic. It feels much better than chronic. I am glad I have helped another person with one of my health problems! Maybe we could chat sometime!

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    3. Also, your dolls can actually really help you. When I was 6, I went to a hospital 4 hours away. I've stayed in a hospital near me, and one of my dolls is a mini-me, right down to the migraines. Even hugging your dolls during a huge migraine, or taking them to doctor appointments help. My doctors have seen all of my dolls at least once, because I take them to almost all of my appointments.

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    4. Hiya! Yes I had an appoitment the other day with my neurologist (We finally got to see one!) And she started to talk about the botox and I freaked out! I have a massive phobia of needles and she was like ok, we don't have to that! Haha! You have definitely helped! Thank you so much, it's nice to know I'm not the only one struggling! Yes my dolls are a great distraction for me when its bad :) Yes I cannot wait until they are episodic and I can find out what my triggers are and avoid them! >.<
      -Lydia

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    5. Lydia, I have to say, you are awesome. You are the first blogger I've "met" that has health probs too, and it is nice to know people like that.

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    6. Thank you hon! That means so much to me!! :)
      -Lydia

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  3. That was a most beautiful touching blog post! I am tearing up as I write this. You are a amazing individual, so strong and brave. I am in awe of your strength and so happy dolls give you such joy and motivation. I know they have made an incredible difference in my life.
    I wish you all good things and hope you soon live pain free. I know one day you will go far! 👍💕

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    1. Aw thanks you so much Alison, yes I won't lie, I cried a bit writing this. You are so kind and your words are so encouraging :) Thank you again!
      -Lydia

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  4. Hope you get well soon! Praying for you. :)
    <3 , IrishAG

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  5. Lydia, you are so very brave and I admire you more than you know!

    I was diagnosed with an incurable disease at age six and I know how hard the fight can get. But my God still does miracles - and every day, what the doctors diagnosed as incurable, is slowly getting better with none of that horrible medication. I just have to keep believing and standing on the Word of God - By His stripes, we were healed!

    You are so brave and inspirational not only to me but to so many others! I'm praying for you - and not just saying that. I really mean it. :) If you ever want to chat, I'm constantly on DelightfulWorldofDolls.com (I'd love to comment back and forth with you any time) and I hope to set up a contact page soon. :D

    Once again, I love your blog so very much! You're so brave and inspirational and amazing. I can't say it enough... you're phenomenal!

    •Madison•

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    1. Ahh you don't know how much I'm smiling at the moment, that you so much for your kind words. I definitely think the reason I was able to stay so positive was because I believed that god would heal me. And even though he hasn't done a miracle with my health he has definitely performed other throughout my family's life recently :) I'm sorry to hear about your illness hon, yes and if you ever feel like talking please feel free to :-*
      -Lydia

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    2. You're so very welcome, Lydia! Just keep believing and never give up - you're so awesome! :)

      •Madison•

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