I just want to introduce myself for those who do not no me. My name is carly im 26 years old, i have a 10 year old daughter and the most amazing husband. I have decided to tell my story about the condtion i have. Its not been an easy decision to tell the world my life story, but i want to share my story and raise awareness about my condition as not a lot of people have hurd or no about it. In doing this i want to raise money towards this charity and raise awareness and if i can just make one person come forward and speek up about any health problems they have this would make me a very happy person. Its ok not to be ok 

Hears my story....
Back in july 2018 i started to feel unwell, i started to feel realy shakey and tired over the space of a couple weeks, But i just put it down to drinking to many energy drinks. So i stopped drinking them but still no change. One saturday after i finished work at the salon i went to B&M to get a birthday prezzy for my daughters friend and to get some accessories for the bathroom as i decided i wanted to paint. When i was in the shop i started to feel realy dizzy and just fainted. I was on my own so it was really embarrassing, the first aider rushed to me and got me some water, i soon felt fine and brushed myself off and got back up and carried on shopping, i wasent leaving there without my diamante toilet roll holder lol. I just had no idear this was the day my life changed over night.

Anyway after that i felt fine i went to a friends house had a bottle of wine and takeaway. The next day was a sunday and i got up and started painting i was fine appart from feeling this shakey feeling. Anyway the next day i went into work at my other job care assistant and i told one of the nurses what had happend and how i have been feeling. She told me i should get a doctors appoinment and get it checked out. I agreed and carried on with my day. I was just getting ready for lunch time when i started to feel unwell and i then again fainted in the hall way. The nurses rushed to me took my blood pressure ect and said my heart rate was going realy fast i think it was about 146bpm if my memory surves me right. After i came round the nurces told me i had to go to A&E to get checked out. Work was so amazing one of the nurses took me, she waited with me untill i got seen. My check was ok all my tests she done come back fine. And she told me if i had any more problems to ring the doctors. I was fine after that and drove back home. The next day i went back into work and around lunch time the same thing had happend. The nurses told me to go down to the walk in centre. Again another amazing nurse took me there, when we got there we relized it was closed. So she told me to ring the doctors, which i did and they did ring back straight away. Over the phone the doctor said im not realy sure what i can do its quite common for people to faint and you have had fainting attacks befor. (A few years prior to this i fainted at work) anyway i got back in my car and went straight home not knowing this was the last time i was gunna work there. When i got home i was so upset i rang my family on a face time chat. cutting the story short i fainted multiple times in the space of an hour so they decided to call an ambulance and my husband. When hubby got back he was a little mad they had rang an ambulance and he said you dont need it. at this point he had no idear how bad it was. ill take you to the doctors instead he said. At this point the first aider had turned up and i just appoligised and said im gunna take myself to the doctors. So straight after it was time to go and i fainted just befor i left the house, getting me into the car was another story between my house and the car i fainted about 4 times, my husband then relized how bad it was. He did get me into the car eventually and took me to the doctors. When i got there i had to stand to sighn myself in and i then fainted again, when i come round they sat me in a room to waite for the doctor. Soon after i seen the doctor and she had no idear what was wrong with me she said she thinks ive got a urine infection, so i done the wee sample and it came back fine. But she wanted to send it off to the lab and she still belived i was ok. Things got quite heated between us both because she dident understand what i was telling her and she just thought i was ok. Her words sometimes people just faint! I left there and was mortifide i was so upset why wasent she listerning to me i new i dident feel right.

The next day was a Wednesday and again i just dident feel right so i face timed the family and again i just kept fainting so again they took it upon themselfs and called an ambulance. I cant rember weather i called my friend just befor it happend or my family did, but she was up hear like a shot! And i just kept fainting she sat with me and my family was on the phone mortified and dident no how to help. Eventually the ambulance turned up and done some tests and it all came back fine, they atually rang the doctor who i seen the day befor and asked her what should he do. Her reply was just take her up to the hospital. They took me in and i was fine had a bed was just waiting to be seen i needed a fag so i went out stuped thing to do as i fainted when i was out there. Luckly i was on the phone to my sister at the time and she got her husband to ring up and send them out me.

The next few days was hard they said i may have somerhing called POTS (Postural orthostatic tachycardia syndrome) affects circulation (blood flow). POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down. I was on a monitor over night and they kept doin regular checks. The next morning i had to be moved to a diffrent ward as the monitor they put on wasent working properley or storing the information. So over the next few days i spent in hospital with my husband mum and step dad by my side. And my sister who was on the phone to me the whole time day in day out! The terrifying moment when the doctor comes round to discharge you! How can you discarge me when im still fainting. By this time he said that he thinks i have a condition called vasovagal syncope (VVS) he dident tell me much about it just that i need to figure out my triggers and drink lots of water and lot of salty snacks and stay away from the sun. He then told me that i could no longer drive and i had to be faint free for 6 months. I was heart broken my independence just gone! How was i going to get to work could i go back to work? He then gave me a sick note for 2 weeks and told me that i would be ok to go back to work after that.

Over the next few weeks i went to my sisters house in devon so she could look after me and my daughter. I had a few fainting spells but nothing to major, the end of August i even went on holiday in north devon, and i diddent faint once. I told myself that it was because i had been over working myself pretty much 7 days a week in both jobs. I new i had to have a tilt table test done and in the September it had come throught. I had been fine with no faints leeding up to this test. After having the test done i dident feel right and i began to faint agin and havent stoped faintinng since. I then got diagnosed with VVS. I have been though a tough battle trying to get doctors and consultants to help me. Every time i would go in they would tell me i was going to be fine and i will be back to work after 2 weeks ,4 weeks then it was 6 months. As the 6 months went by there was still no change! I would go in and cry my heart out and tell them something not right the medication is not working and all they did was dose up my meds! Even tho it wasent working! They put me on heart tablets to slow my heart rate down but that dident help. yea it slowed my heart down but the faints was unknown i dident get any warning befor i fainted. Eventually i begged for someone to help me and take me seriouse. And finaly they did.

The consultant told me he was going to refer me to a specialist in london. I was overwhelmed i was going to finally get my life back. Then in april 2019 i had my first appoiment in london. I came out still no better off it was a 5 minute appoinment and he told me i needed another tilt table test in london. And that he would arrange that for me. A few weeke later i got my appoinment throught it was for april 2020. When i opend it i just cried and i rang them to ask weather they had got it wrong but no they dident .so i am still waiting for my appointment. Now as it stands i dont have help or support from the hospital i havent hurd from them since i went to london back in april. However i have manged to find the most amazing doctor, he cant help me realy as they dont no whats wrong but he listens and understands. you see because they are unsure of why it happens they are scared by this. They dont understand and they dont want to listen. Ive told them what happens befor i faint how i feel how its effected me. But they stare you like your a zombee. And all they say is tou no its not a disability right? They sit there with there text book and tell you whats happerning. But they have no idear whats realy wrong. And how can you sit there and not belive what i am telling you! This is is me its happerning to me i no more about my illness than any doctor! But they chose not to listen. I found out that the triggers of me fainting is standing for to long, walking, heat to many people crowded shops ect. So i have to prevent that but its not easy some day i can clean my house from top to bottom i have to take it easy and do little bits at a time. And other days i cant get the hover out even if i wanted to. If i go out at the weekend im probably going to spend the next few days in bed unable to get out. Ivs spent a whole week in bed as my body just cant function. My faints are very random and happend any time any place any were! They happen daily, some days i may not faint at all other days i can faint 8plus times a day. And even if i dont faint i still have side effects just this overwelming feeling exhausted like i cant move i feel weak. I feel nauseated i get tummy pains headaches. Dizzy And the list goes on! The worst side effect for me is chest pain i have all the symptoms of a heart attack but all tests come back fine! I generally get scared every time. But they have no idear why we get chest pain with this condition. The doctor said it may be spasms but he doesn't atually no. But it makes me relived a tad so i no im not going to have a heart attack. I now have a mobility scooter as i can not walk very far befor i faint, this is hard im 26 and never did i seen my life like this a year ago. People look at you and you no what they are thinking the older generation is the worst! But who am i to let other people judge me. Im in wheel chair for a reason and i no that and its took me a very long time to be ok with that. But im not in hear by choice i chose to get this because it makes my life easer! I can go out into town at the weekend now i couldent befor. I would walk around tesco and spend most of the time on the floor. Now i still faint but its safter for me. The heart breaking thing is your lasts! The last time i took my daughter to school, the last time i drove my car, the last time i worked and the last time i could leave the house on my own. The lists goes on. Now there's no cure for my condition they dont whats wrong yes they have diagnosed me but my faints are now classed as unexplained. You can get diagnosed VVS from just fainting a couple times in your life and the doctors are ok with that but mine is extreme and they dont no how to help. Im scared to what my futcher holds im 26 i want to be able to live a normal life. There are days when i cant i cant even shower by myself. My daughter who is 10 is amazing she helps to get me water and feed it to me when i have fainted and cant move. I dont want this for her i want to be her mum again. I want to go to McDonald's after school.to treat her without her dad. I do have good days and i do have bad days. And i also suffer with depprestion coming to turms with this condition and way of living is not easy and i have had to ring samaritans on many occasions this year. But some how i still keep fighting and trying to keep my self positive.

Its hard when you seen someone you no and your in a wheel chair and they dont no why. But im still me yes its changed me but im still me. And through all this i have to thank my family for all there support! My husband and daughter i couldent of done it with out them they are my true rock my husband has mow taken on my life too and he works so hard im so thankfull thay i have him. And my sister the one person who will always Laugh at me when i have fainted even when i fainted down the stairs last week. But i need that in my life and when i recover we laugh together and yes its not a laughting matter but it helps me get throught this i can ever laugh or cry and i choose to laugh (sometimes cry) lol One thing i have lernt throught all this is never take life for granted you never no whats round the corner. And please for anyone who has read this long winded post share it share this page and tag away! Im doing this to make awareness and to raise money to help people like me and find a cure! Im happy to answer any questions if you have any and i will be posting a part so you can understand my condition in detail. Thank you so much for reading and i will keep posting the good with bad

But for now i will keep fighting even when it gets tough i have no choice i have to be grateful for what i do have. And whem my body says u need to rest i will but the next day j get up and show the world whos in charge ❤

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