Laura: Every day may not be good..... but look for something good in every day
My name is Laura and I'm 29 years old.
Up until April 2015, I lived a pretty normal life. I have suffered with chronic headaches for the last 18 months and have had high blood pressure on and off but it was manageable. In April 2015 I fell ill with a kidney infection and was admitted in to hospital. Just before I was due to be discharged I started passing out. The hospital ran multiple tests but discharged me with a possibility of PoTS and asked my other local hospital to look in to it.
Unfortunately the faints were occurring more often and one of them landed me in hospital needing multiple surgeries on my leg. I spent about 4 weeks in hospital while baffled doctors tried to work out what was wrong with me. It was also mentioned that it was all in my "head". I discharged myself as felt I was getting nowhere with the hospital.
I had an amazing GP and with a complaint to PALS I was brought back to have a tilt table test which confirmed I had PoTS. I carried on having more falls and had a lot of hospital admissions because of it. Most of the time the doctors looking after me were clueless and this added to the emotional stress I was going through. The hospital admitted they didn't no how to treat me and I was referred to the Autonomic Unit in London. I went to see them once and It was extremely helpful and they suggested I came back for some tests. I never returned for the tests because my depression kicked in, and didn't want to face the long journey again so went back to my local hospital.
I started to become more and more depressed and it took me a long time to accept this. I lost a lot of friends because I was off loading on to them and not being honest with the healthcare professionals. Eventually I got the help I needed and since them have started a few courses of CBT and am on anti depressants, which I hope to come off when the time is right. I also found blogging helpful and am also a member of a PoTS group on face book.
My PoTS is still a daily battle and at the moment I take a huge cocktail of drugs and am unable to work. Some days I can't even get out of bed, I cry with the pain ,feeling dizzy and feel very alone. I'm still having my fainting episodes but they are fewer now and I am beginning to recognise the symptoms and lay down. I'm also still suffering with my depression, some days are darker than others and I feel very down and sad because I am grieving my old life. I think about what others are doing my age and how my life is going at the moment. PoTS is an invisible illness and because people can't see a lot of my symptoms they don't understand it, which is hard for me as people assume I'm a fit and able young lady. Just this morning this lady in the chemist asked if I was on my lunch break and did I want to go before her, when I explained I didn't work due to an illness she turned her nose up to me.
The purpose of me sharing my story is to try raise more awareness, help other people who may be at the start of the journey and to help them feel they are not alone.
I've made some amazing friends since becoming ill with PoTS, we are all warriors and I'm proud to be trying to make something positive out of what I am going through. They are all at different parts of their journey and helps me to understand that I am not alone. I now also have a new GP who has a good understanding of PoTS and see's me fortnightly to review my medication. My goal for this year is to learn to carrying on accepting my condition and anything else that comes along. I didn't choose to be sick but I can choose how I begin to deal with it.
As I said Every day may not be good... but try look for something good in that day
Update May 2016
I felt it was important to update my story of my journey with PoTS and other health issues. I have to try help people realise its not just an closed book , PoTS carries on being part of your life.
My PoTS is still a battle and to add to my PoTS i now have issues with my Blood Pressure going very high up to 200 at its worse and down to unreadable at its worse and also problems with my iron levels. Faint wise i am much better, my body had began to recognise when im having a PoTS flare. I lose my hearing and then my sight. This gives me enough time to lay down even if that's in the middle of Morrisons. I wear compression stockings at times but i feel very ugly and unattractive wearing them. Winter months were better because i could wear them under my leggings but in this heat im struggling to wear them and to maintain my PoTS to a manageable level.
I still suffer with awful migraines, palpations, dizziness and fatigue. I saw my cardiologist ( a new one ) back in February who told me to go home and learn to live with my PoTS. I have heard alot of patients with PoTS have been told similar. Its such an awful thing to say to us because if we could manage it we wouldn't be going to hospital. Ive had 2 hospital admissions this year due to my PoTS and it frustrated me the lack of support the on call consultants gave.
I have had to fight the hospital to get the help and support i so badly need. Im so lucky my GP is brilliant so supportive. I now have a different cardiologist who i saw a couple of weeks ago ( i was under his care last year in hospital as an inpatient) and he has referred me to Barts Hospital in London.
I finally gave in and applied for PIP. This has been a massive help to me to help me get to appointments and buy aids. I felt awful applying for it and my blue badge. I always get awful looks when parking in a disabled bay again because people think im fit and well and shouldn't be parked in a disable bay. This often reduces me to tears because they have no idea.
Depression wise, that is very up and down. I think when im unwell and have other issues going on it takes a massive impact on my mental health and i get frustrated with my body. Recently i have had to cancel so many plans because im not well enough or to fatigues to leave the house. I have also started using the Samaritans to help me , which im ashamed of but its the only way i can get my self feeling happier again. People dont realise that most people with chronic illness suffer from depression and that makes our situation even harder. I have a very close group of friends who we called our self the *unicorn warriors* and we talk everyday and when we are down we are all there to support each other. Those ladies and a few others i no mean the world to me
For all the PoTsie people reading this keep fighting and take it day by day.