Hi, my name is PottyShauna! — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Hi, my name is PottyShauna!

PottyShauna
PottyShauna Member Posts: 3 Listener
Hi everyone. Thought it was about time I joined the community.
My name is shauna and I'm 27. I've had health issues from a young age. I devolved kidney reflux at a few months old and then due to almost constant UTIs I now have a week bladder too.
When I was 15 I got a bad case of whooping cough, and from that I got asthma.
I was also having a lot of trouble with my joints. They would pop and click and it was soo painful. I got diagnosed with Joint Hypermobility Syndrome. 
By the time I was 18 I was caring for my mum. She's had health issues all her life, 2 kidney transplants, lupus, perforated bowl most recently. Unfortunately my mum is also a narcissist. Living with and caring for her was extremely difficult.
I started to notice my heart rate feeling elevated during times it really shouldn't have. Simply standing or one flight of stairs. I mentioned it to my doctor and I was told it was a side effect of my asthma inhalers. I took that as an explanation and carried on. But other symptoms starting showing up. Heat intolence and difficultly standing for long. I went back to the doctor and was told I was overweight. I needed to start exercising and get fit. So I did. And it was the worse experience of my life. It got to the point where just stretching caused me to pass out. During all this I was having to deal with being a carer to an emotionally and mentally manipulative mother. My doctors excuse that time was stress but I just wasn't having it anymore. Enough was enough. I was fed up feeling like a hypochondriac.
I managed to get the doctor to take my pulse sitting and stand and she knew right then and there she had messed up. My heart had jumped 40 beats. 
By the time I got a cardiology appointment, I had been searching the Internet for possible causes. It wasn't till I was reading up on Joint Hypermobility Syndrome on the NHS website that I found one sentence about PoTS and how they can sometimes be related to each other. So I looked up PoTS and oh my god. All my symptoms where there! It wasn't in my head. Everything made soo much sense! 
At the cardiology appointment I was told she didn't think it was PoTS, all my symptoms were the same as dehydration. I was told to go home, drink a lot more and she'll see me again in a couple months to check I'm feeling better. 
That was not going to happen at all. I insisted on getting a tilt table test. You prove it isn't PoTS and then ill do whatever you suggest. She didn't do a tilt table test but she did do an ECG that day and I knew as soon as I was called back into her office that she knew she had messed up too. Turns out there was 2 irregularities on my ECG. I was sent away for a **** load of other tests and they're plan was to sort out my heart, get me on beta blockers and then start the tests and action plan for PoTS.
Unfortunately that didn't happen. I was ment to be transferred over to arrhythmia team but somehow in June of this year, I ended up being discharged.
So that brings me to now. It took me nearly ten years to get anywhere and now I have to start over again. 
My mum hasn't needed caring for, for the last 5 years but I was suck under the manipulations and carried on doing as I was told. Until June of this year. I finally broke free and moved into my friend's house in Scotland. Seen as I had to get another referral back to a cardiologist, I've done it here. My appointment is in December and I'm hoping I don't have to start all the way from the beginning.
I'm studying to be a librarian and I've just got confirmation of a 2 day a week work placement at the local college library. I also got an email from a headteacher of a local school for disabled children asking if I would be interested in helping them set up a library. 
I'm soo excited to get back into work. I had originally trained in child care but I'm just not physically able to keep up with the energy levels that requires. 
However I find mornings very difficult. My friend has been great, not wanting rent or anything till I get back on my feet but Im starting to feel useless again.
I realise I've gone on a bit. I guess I just had to vent. Sorry about that. But yeah, that's my story. Hi. I hope I get to know some of you better. 

Shauna

Comments

  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,941 Disability Gamechanger
    Hi @PottyShauna welcome to the community!

    Thank you for sharing this with us and I am sorry for all that you have experienced.

    Yesterday, I was having a conversation [email protected] about how people, like myself, resort to using the internet to find a diagnosis. I understand both sides as we know our bodies better than anyone else and if we feel that we have been misdiagnosed then we are left with 2 choices, ask for a second opinion or end up doing our own research. 

    However, I empathise with edical professionals as they know about all types of conditions and how they remember them all I shall never know. I appreciate that they don’t get it right the first time , it can take time. Yet this leaves us feeling frutrated which is completely understandable.

    I really do hope you get a solid diagnosis at your appointment and I hope they find the best treatment for you to enable you to become a librarian!

    All the best! :)
    Disability Gamechanger - 2019
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    Hi @PottyShauna, and a warm welcome to the community! Great to have you here.

    Thanks for sharing this with us. It certainly sounds as though you've been through a lot. Invisible conditions like PoTS can be so tricky to diagnose, so I'm really glad to hear you finally found some support and answers. I'm sure many others will be able to relate to your story!

    Do get involved with the community, and if we can be of any assistance, just let us know!
  • PottyShauna
    PottyShauna Member Posts: 3 Listener
    Thank you  :)
    Hopefully I can start treatment soon and then make my claim for PIP, I'll definitely need advice from everyone here for that one
  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @PottyShauna

    Good Afternoon & Welcome to our online community/family.

    “Wow” you have been through a “right old journey.

    I’m one off the “Community Champions” on our site.

    Please please let me know if I can help you further????
  • PottyShauna
    PottyShauna Member Posts: 3 Listener
    Thanks @steve51, I'll be sure to keep that in mind

Brightness