This post is going to a tough blog for me to write. I has taken me four days to put together and have the guts to share with you. In my goal to raise awareness though & try to bring to your attention the seriousness of my goal to spread the word & help all I can I feel likes necessary.
I rarely share the full story to how I am feeling, due to embarrassment, thinking it was me and of course never wanted people thinking I was weak and can't put up with a few aches & pains. Though it's not always straight forward.
I apologise to my friends, family and loved ones if ever I have caused you any hurt & pain!! I have never, ever meant too! That is what I always try to avoid SO much. I love you.
I'm sorry,
My life is a little bit complicated,
I wake up feeling like a prisoner strapped to my bed, I can't feel my body. Too weak to imagine lifting myself up but need to get moving - face the pain. It's either a good day or a tough one. I may just feel a little sick but stronger than yesterday. Getting showered and changed doesn't concern me. Others days I want to be sick, I feel hungover, dizzy, achy and weak. I panic about having to get on with my day, get dressed, move around and make my arrangements.
I have a wardrobe full of clothes I adore, but I have nothing to wear. Nothing that looks right, noting 'quick and easy' to pull on because I am so cold I need the layers.
My arms ache so much I can't lift my arms up for long, cutting food, lifting and carrying aren't easy.
How far do I have to walk? Am I strong enough to take the stairs, do the shopping or take a walk? I don't want family to think I am not coping - smile! And man up!
I am 20 odd, an adult and should be independent. One of the only things I have left and am clinging onto.
What if I get half way through and event or destination and struggle- nobody can see me break down.
Get a grip
I must drive, but my head is banging. I am dizzy and am constantly bumping into things. What if I reach my destination but can't face driving home?
I get up to greet you a little too fast and have awful ringing in my ears - I can't hear you, only see you through blurred eyes. I will simply nod and say hello, not truly knowing what you have just said. Hating myself for it.
My hands ache and are cold. I struggle to write. If left and I don't move them for a while I can no longer feel them.
I can't take notes effectively, I am not quick enough to write down or remember what is being taught to me.
I can sit and watch a film or a programme with you but ask me what it was I will vaguely tell you. I simply can't remember. You often get mad at me for coming over and watching what we have already watched but I can't remember ever watching it.
I am scared, scared people will see my pain. So I isolate myself and cut myself off some days. Some days texting is too tiring and often I will text for a while and have to stop. My brain is frazzled and my arms are too tired.
I am out in a group and want to make conversation. I talk, listen and enjoy but then zone out. My throat sore & and too exhausted to get my words out. You aren't boring me I am just mentally exhausted. I panic. I am no longer in the room but watching you all behind a glass screen, enjoying your lives - laughing and joking. I need to retreat. My mind can't think of conversation and I feel tired. We are out with a group though, it's a taxi on your own or waiting for a coach? Panic. You don't want people thinking you are bored of them or ignorant and you don't want people to come away because of you! They deserve to have fun! You don't want to be the party pooper or cut someone's night short. Quick you will miss your ride, get up quickly- fudge, I can't see! Dizzy! Just run and hope for the best!! Thank god sight is back, where am I, okay! Don't act like you are drunk ( when you aren't ) get sat down quick. I am on edge, my legs I can't keep still. I am irritated! Upset with how the evening has gone. I want to be able to stay there for longer & later. I look a bore! Get a grip Sophie.
I love social events, but I tire quickly. I may be part of the party at first and then become the invisible girl in the corner.
So Sophie what are you doing with yourself? Not this question again!
Wow, you enjoy my company - yay! I am worthy. Want me at an event? I'll be there. Gosh, three days! It will be fine, it will be fine. You always work it out. This is your time to enjoy good company be noticed for you. Have a purpose! Nobody chooses you. Take it now.
I can not drink and enjoy the food everyone else is lapping up as anything could easily trigger reactions. Eating out especially is embarrassing and a stressful time for me.
Fussy eater, anorexic, a pain.
What to wear, oh what to wear? Cover up. You are embarrassed you know you are a fighter and warrior inside but your body tells a different story. You can't have people thinking you are weak but you have to face them anyway.
Talking, wow I sound like a smoker. My throat is so sore I am struggling to get my words out. I mumble, embarrassed and losing energy. Speaking uses a lot of my energy and may suddenly just stop or begin to struggle to make sense or get my words out.
Oops the chef didn't understand my diertary requirements. Now I can no longer focus on who I am dining with, my head is banging, stomach cramping and my throat is closing up.
I want to cry. You can't cry - you aren't a little girl. Quick go to the toilet and calm yourself.
You are bulimic you disappear after most meals. But you need the toilet. You have drunk the same as everyone else yet your bladder seems to feel differently. Like I have drunk two tonnes of water not two litres. Your throat looks like a camels back! Lumps all down it! Can you get any unglier? Don't cry, don't cry. Turtleneck tops & dresses it is then for outfit choices. Just walk out and talk yourself through your embarrassment.
You are too cold to move though. Going to the toilet means you will have to unwrap yourself and face the chill. But you are frozen to the spot not wanting to move, muscles tight and stiff in order to keep you warm, shivering so much you are giving yourself a headache. All you can think about is getting in a steaming hot bath because that's the only thing that will warm your core. Adding more layers at this point simply does nothing, your core is frozen, more than just skin deep.
Yay- family time, get comfy on the floor because your elders deserve the chairs ( always remember manners.) Bummer you are stuck, your muscles have tensed up, how are you going to get up without looking like you are struggling. Laugh it off ' you are getting old!!' But damn that hurt. Smile.
That washing needs taking upstairs and hanging up. Oh boy stairs. 'I am not lazy.'
Bumping into walls but getting to the top. Quick, act calm you can do those stairs easily you are 23 you aren't tired out. But you are!
Please may you help me but the bedding back on? *Roll of eyes.* I am putting people out, Jesus you can't even run your own home. I am such a let down. I can't lift the mattress well to tuck the sheets under or fluff my duvet up. It's so heavy. Gosh, it isn't like it's bricks Sophie. A simple 15 minute task ends up taking 40 minutes. But you did it!!! Sit down a moment, feeling dizzy!
Best cook dinner. What do I want? Flipping decisions. Where is the broccoli? *look at fridge.* I have just been there to get it so why is it not on your chopping board? Ouch, that's it just walk into the cardboard door and nearly knock yourself out.
Phone rings - 'let's meet up! What do you want to do?'
I want to go, but what to do? I can't drive far, I can't eat out, I can't go out dancing and drinking, my house is a mess & I live and work there - I need a break.
Err coffee? ( living the crazy life - exciting ).
Response - Too far, maybe another time.
Okay. Acceptable. What can you do? Sit alone wondering what to do with yourself. Feeling alone & crazy.
I'll be at yours for 10am....I have been awake all night worrying about what to wear, if I am going to feel ok, the event, taking my med's early, eating breakfast early, packing my things up.
11.15.... 'are you near?' 'Just setting off!' Exhausted I have taken so much energy through anxiety, stress and being up early to make that 10am planned time.
On edge I need a sit down and a rest.
What do you want to do? How do I know, making a decision on what to have to drink is a task!
'I'll come round!'
Fudge! My house is a mess, they will think I am lazy. Hoover, mop up, clean up. Wow damn, I am exhausted. Sit down.
A party - yay! This is life, this is what 23 year old should be enjoying. Oh. What do I wear? Should I take snacks? Or do I just look weird? Let's not worry we will have a bath to warm up, put some make up on, make an effort and smile.
Oh god, everyone looks at you. I am uncomfortable. I will just talk my way through the awkwardness. Ok food. Fudge, pizza! I really want some. Nope, carrot sticks it has to be - fun. My legs are tiring. Look cool and lean on the counter. No chairs, damn. Erm. Okay. Nobody to talk to, everyone is drunk by now. Only been here 45 minutes, I can't leave yet. What to do, what to do! oooooo, maybe I'll have a drink and some pizza crusts. Oh no, feeling sick now and stomach is cramping. Need to leave. Look at your watch 10pm. Wow all that effort for an hour, and gosh you dirty stop out - 10pm! Living life.
Warm up in a hot bath, I am freezing. Ok. I am awake. The nights just give me nightmares. Maybe we should stay up in hope I tire and sleep. Let's just check the socials - lovely everyone living it up in the city using their Saturday nights well, wow look at those amazing travel experiences, adventures to cherish for life. I wish I could be doing that. Oh nope. Sleeping isn't on the cards, pain flows through my body, worrying about the next day, if I drop off, tomorrow may never come. Damn, anxiety attack. Quick open the window, splash my face to stop the sweating and LIE DOWN quick! Dizziness, sickness and my heart is racing. Think of a beach. Calm down! Calm myself. Nothing can be done.
Finally, the sun is rising. Damn I am so tired. How can I go on with my day.
Treatment - hospital after hospital, pills after pills, a pin cushion. You are crazy! It's in you head! Once you heal your mind you will be on the mend.
Med's make you sicker - adding more side effects on to what you already have to deal with. I can't deal ! I can't fight any longer.
How are you today? Me? Fine, yep I am ok.
*Lie*
You are fighting SO hard but you don't want to trouble people.
I feel sick, I don't trust the doctors or the hospital. I do endless research to fight my own war because for years and years I have been ignored, dismissed and made out to be an attention seeker.
I scream- but nobody can hear me drowning.
I am too stubborn to admit my true struggle and laugh it off.
Always there for appointments, family events, outings etc. Never late, always in the best mood I can be in!
Snap out of it Sophie! You are putting strains on the family. Isolation is my only option. But I miss my family I don't want to miss out on memories with them.
So I face them, embarrassed and on edge. So upset! I don't want to hurt them. I am letting them all down but I have NO idea how I can make it better.
I try to smile and be positive. Hurting deeply.
You won't see my pain.
A holiday yay! I love travel, it's the only excitement I have left. But wait, packing, cleaning the house and choosing what to pack leaves you exhausted. But you are 23 go with the flow, live life you are heading to the sun.
'You look ready to with loads of energy.' *Sarky*. Panic. Quick hide away your tiredness and pain is showing. You don't want to bring others down this is an exciting time. You have waited for this moment for months, weeks! But packing, unpacking, cleaning the house, getting the case down the stairs and arriving at the door - you are exhausted.
Yes get to bed, early start. Oh god. Get up two hours before your ride comes because you most probably won't want to move, feeling like death. So plan ahead. Lots of walking and heavy bag carrying tomorrow I need to be on top form.
Damn panic attack and night sweats again! You need rest!! Irritated, you watch the clock because now if you fall asleep you might not wake up.
Anxiety. Airport stress. Lots of people, standing, walking and heavy bags.
Finally on the plane sat down. God I want to land my legs kill but I don't want to because I can't face having to carry bags and roll cases - I don't have the energy.
Oo hip cracks - don't worry just getting old. Just stiff from the trip.
Get in the taxi! The movement my head is on fire. Lights flashing everywhere my eyes sting - rub them, no don't you have actually bothered to wear make up today.
Panic, more unpacking and suitcase carrying. Perfect offer a deal you carry jackets and bags they get the cases. Damn just jackets tire my arms.
Oh god what an idiot you look! Coats & layers in the sun, I sit covered up watching loved ones, laugh and have fun. They jump in the ocean not a care in the world. Picking fun at me for being unable to get in without becoming freezing cold and not being able to warm up for the rest of the day. Stupid body unable to control my temperature. Girls looking gorgeous, rocking their 20's hot body's in their prime. I am hiding away, taking all the 2 per cent courage I have left to walk and try and act like I don't care I am comfortable in my own skin.
Smiling, whilst tears of pain, upset and jealousy burn behind my sunnies.
When did life's goal become just simply surviving through the day?
Now is my time to live without a care.
I miss me - the giggle fits, the energy, NO pain and a more relaxed person over-all.
Here I am fighting for the air in my lungs, my heart beat and movement in my limbs.
I am not living, only suriving. Yet I try to live the best I can, with a smile on my face and the light still in my eyes. The flame still burns within.
Hi, I am Sophie. Lovely to meet you. You will never see my pain from the surface & I won't allow you to see the pain I hide behind eyes and within my soul. I am too stubborn to do so. You can judge me & say what you wish. I will simply smile and fight on regardless. Leaving you to believe I am perfectly fine and must be crazy. My strength is worth more to me than your judgement. I may be fighting to simply get through the day and praying my body fights with me but I have bigger dreams & goals and those are what I will share with you.
The strongest people have the toughest roads.
Fight on warriors & be your own hero!
Thank you so much for reading.
If you know someone who is suffering in any kind of way please always be respectful of their condition, needs and overall self.
We all have our own problems we deal with everyday. So instead of making judgements, offer a hand and show kindness. Kindness costs nothing - it's FREE and means the world to someone, especially on their darker days and through their tougher battles.
I dedicate this post to my Mama. She is my diamond 💎 rock, my hero, best friend and soul sister! She has made me who I am today & inspires me to keep motivated and fight on every single day.
I also want to mention my Nana who also a diamond 💎, always offering me a shoulder to cry on, support, kind words and a good old cuppa!
So much love and peace to you all!
S
Xoxo
