Our Journey Begins

Hi. I’m Natalie, a 20 year old living in the UK. I suffer with Fibromyalgia, Depression, Chronic Anxiety and Skin Lupus. I’ve suffered from Depression and Anxiety since I was 12, Skin Lupus since I was 17; the Fibromyalgia is more complicated. I suffered from the condition since I was 11, but I wasn’t officially diagnosed until December 2017. When I was 11 I began experiencing massive amounts of pain, especially in my knees. So I was diagnosed with Osgood Schlatters, which is a knee condition common in young people. However, as I got older, my pain increased and began to spread; which started to affect my sleep and my mood (which didn’t help with my Anxiety and Depression as I didn’t start taking medication until I was 16). The next thing that went was my wrists. One i just couldn’t move them without being in horrific pain, so off to A&E I went. I was then diagnosed with Tenosynovitis (which i’m terrible at explaining so google away if you’re interested), but basically it made writing very difficult and on a bad day could really effect my daily activities. The older I got, the pain got worse (beginning to see a pattern here?) and it eventually got to a point where I couldn’t take it anymore. On a good day I would ache everywhere, sleep was almost impossible so I became used to feeling like a zombie most days, I was beginning to get use to the constant pain i had in my knees when I walked, but not in my wrists, which meant writing was kept to a minimum and I began to type everything (which did improve my typing skills, so there’s a positive). Now, on a bad day, I couldn’t walk, I could barely lift up my TV remote (since thats pretty much all I can do on a bad day, thank goodness for Netflix), forget about sleep and just imagine every square inch of your body being completely stiff with the feeling of 100 (very heavy) weights on top of you. I began having really bad nausea, dizzy spells, pins and needles, my restless leg syndrome (continuously bouncing my leg up and down) got much worse (and more annoying for my mum lol) and a whole bunch of other symptoms that will just go on and on. Around this time I started developing red and purple lumps on my legs (which are now also at the top of my arm swell) that itched like a hell fire (yes they burned) so back to the Doctor I went. Hospital referral, after hospital referral (which takes ages in the UK as the NHS can be very slow, but having free healthcare is awesome so you learn to deal with it; sort of) and diagnosis came into its final stages (the biopcie on my leg was not fun) and finally in December 2017 my consultant said that I have Fibromyalgia and Skin Lupus. I was relieved at first as finally i’d get the right treatment and could put a name to what I was suffering from, but honestly it’s still setting in. I have to wait for my referral to a dermatoligist before i can get treatment for the Skin Lupus, so that is still a pain, but i’m starting to feel a small difference with my Fibromyalgia, I still have good and bad days but my sleep is improving which is amazing.

Another thing about me is my family. When I was sixteen my dad was diagnosed with a rare kidney condition called Nephrotic Syndrome. He became extremely ill and was emitted into hospital hanging on by a thread. Unfortunately, he had a massive brain bleed to his right temple lobe. We were told to prepare for him to pass away. When the specialists from London came to the hospital they couldn’t believe that my dad was sitting up and talking (although not much of it made sense), they called him a miracle. Sadly a few months after this, my dad had a stroke. He lost movement in his right side, which he managed to gain back quickly (another miracle). It took a long time for him to stabilise, and when he did he was a slightly different person. This was pretty hard for me to accept, I was in complete denial, I didn’t want to believe what happened to him so I didn’t. It took me a long time to accept what happened to one of my favourite people in the universe (the other being my mum), and even now I know what happened to him, I understand what happened to him, but if i’m honest I don’t know if i’ve really come to accept it yet.

Although my life has had it’s downs, it has had a few ups. Getting into University was a massive achievement for me 🙂 And my brother Gary is a guide for visually impaired skier Kelly Gallagher MBE and are both currently in PyeongChang about the compete in the Paralympics which begins Friday 9th March 2018.

I have an incredible family, and the most amazing parents. My mum has always been and always will be my best friend.

I LOVE film and television, I like reading and I have a serious passion for writing, from screenplays to poetry (I actually had two poems and a short story published when i was younger through young writers UK. I’m pretty opinionated, but i try to be as open minded as I can about other peoples opinions, so when I post my view on something feel free to comment and have a discussion 🙂

So thats a relatively large snapshot of me. I’ll be posting at least once a week about a variety of stuff, my thoughts can be quite random, but most of all I want to talk about my experiences with the various illnesses I have and what i’ve experienced with having a family member become seriously ill and hopefully help someone out there who’s going through the same thing. My twitter is at the bottom on my page (that feels weird to say) so get in touch if you want to chat, or leave a comment on here and I will reply 🙂

So thats it really. I’m not sure how i’m going to end posts yet, so for now I’ll go with the flow. Whoever has taken the time to read all this God bless you because its bloody long. Thank you for reading and you will see me soon.

Featured post

It’s okay to be scared sometimes. It’s okay feel down sometimes. It’s okay to feel anxious sometimes. It’s okay to hate everything around you sometimes. It’s okay to be angry sometimes. It’s okay to not be okay. You shouldn’t feel ashamed for not being okay. For not being this idea of ‘perfect’ that thrust upon us all. It’s okay to feel. It’s not stupid to get upset or to be worried or afraid if that’s how you feel. Your feelings are always valid because that’s how you feel. Your feelings matter because that’s how you feel. It all matters. You matter.

Don’t be afraid to feel. It hurts. It royally sucks. But it’s how you feel, and if you push that down and hide it away, it’ll come back with a bloody vengeance; trust me.

You can get through how you’re feeling, even though it feels like you can’t. Things will get better even if it seems completely impossible right now. You will be okay in the end.

[if you need help, if you need anyone to talk to, please seek help. Your parents, friends, family, your doctor, just talk to someone, it will help.

http://www.samaritans.org – 116 123 uk helpline, for global helplines please go to http://ibpf.org/resource/list-international-suicide-hotlines]

Another day, another diagnosis.

So this week I got a new diagnosis, turns out I have absorber condition called joint hyper-mobility syndrome. Basically from my current understanding (as i’m still learning about the condition) when I move my joints it cause micro damage because they’re so weak. I’m still learning more about it so i’m not 100% on it yet but as I learn I will continue to update my progress on here.

So now I have 5 conditions, i’m getting pretty greedy huh? Lol.

Well i’m gonna keep on trying and I will be posting about different ways I deal with my chronic pain and other conditions soon 🙂

Lots of love,

Nat 🙂

This months current stress…money. To be honest money is every months stress. Having no money sucks, and not just cause you can’t do stuff but because it’s fucking stressful!!!

I do not deal with stress well. At all. I’m an expert at freaking the fuck out. I hate when people tell me not to think about it or just relax, it’s like don’t you think if I could do either of those things I would do I’d stop obsessively worrying every five seconds? Know what i mean?

I know they’re just trying to help but that stresses me out even more cause I feel bad for telling them they’re not helping in the slightest.

My point here is I can never win with stress and that is something i’m trying really, really hard to work on, cause let’s face it stressing out isn’t fun.

One action.

An old fisherman stood on the beach watching a young boy at the shoreline. As the fishermen approached, he saw the boy was picking up a starfish, which had been washed ashore by the waves, and was throwing them back into the sea. When the fishermen had caught up with the boy, he asked the boy what he was doing. The boy did not stop his effort as he told the Fisherman that he was throwing the starfish back into the sea so they could live. If left until the morning sun, the starfish would die. The Fishermans eyes scanned the beach, revealing thousands of starfish ashore. He said, “But, son, there are thousands upon thousands of starfish on the beach. What difference could your actions possibly make?” As the boy hurled another starfish into the sea, he looked Fieldman in the eye and said, “it makes a difference to this one.”

– Minnesota Literacy Council, quoted from Heide 1994.

Don’t doubt yourself. You can achieve happiness, a good life. You will find happiness, you will find your reason for being as long as you don’t give up. Don’t give up on yourself, don’t give up on life, no matter how hard, how dark, how unbearable life gets keep moving. Keep pushing forward. Keep climbing, rising and falling because you can do it. You are strong enough. You are amazing. You can achieve what you want in life, just don’t give up. Please don’t give up.

You shouldn’t have to feel embarrassed about how you feel, about how your mind works. You are you. You feel i’m your own way. Instead of making people feel ashamed or embarrassed, let’s start helping people.

Reality is a funny thing…

I make these fake reality’s in my head, and I know there’s some psychological term for it cause I remember reading about it in A Level psychology, but anyway I make these fake realities and I know it’s unhealthy. A part of me always says to myself ‘stop living in your head and actually go out an live’, but I can’t. I guess it’s because i’m so used to it? Making these alternative worlds in my head.

When my more rational side, most likely my medication, makes me come out of them back into the real world, it hurts; like really hurts. My heart aches, my stomach does flips (in a bad way), I feel so sad almost broken, and every time it happens, every time I realise there not real and there’s like a 0.1% of them ever being real, I tell myself ‘stop doing this, it’s the same every time, you’re happy for a moment and then reality literally slaps you across the face and you have to build yourself back up all over again’. Yet I still continue to make these fake worlds.

I’m not as bad as a used to be. I’ve learnt to stay in reality, I’ve learnt they’re just day dreams, but sometimes I slip. Sometimes I really wish the reality i make up in my head is real, why can’t I just go there, why can’t it just be real right now in front me.

It’s not that I don’t like my life. I LOVE my parents. They are my heart and soul. They keep me going everyday. My home life had always been amazing, I couldn’t ask for a better home life. Yet I still made up these realities. I suppose it was largely due to the bullying I faced at school.

I like my life. I love my parents, my dogs, what i’m studying, my home, but for some reason I always feel like something is missing. This is what i’m working on. Learning to love every single part of my life, because I know I have it good. I may not be rich, but I have two parents who love me and I love them. I have a roof over my head, food in my cupboards, and two amazing (absolutely crazy) dogs.

I want to be okay with myself. I want to be confident in who I am. I want to stop caring about everybody else’s opinions and just be.

I’m working on it, one step at a time (ha see what i did there *insert wink here*).

I hope everyone’s well, and remember if you need to talk to someone talk. Someone will listen. 13reasonswhy.info has loads of information and links to various kinds of groups that can help you if you feel down, alone and scared. If you feel like your drowning, please reach out to someone.

Lots of love and hugs,

Nat 🙂

Life is hard, complicated and frustrating. Surviving is strength. To keep going, to keep living is huge. I always say to myself that if i’ve set my bed today that’s a massive achievement. I’ve got up. I didn’t hide under the covers. I opened my curtains and let in the light. Breathing, letting in air, is you letting in the light. It’s you fighting the darkness. No matter what’s going on in your life, remember that you are breathing. You aren’t drowning, you may feel like you are, but your still breathing. Still fighting. Even if you don’t know it.

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