Amy Norris, 23, from Southampton has postural orthostatic tachycardia syndrome (PoTS) and chronic fatigue syndrome (also known as myalgic encephalomyelitis) (CFS/ME).
As part of our, You Don’t Look Sick series about invisible illnesses, Amy chatted to Metro.co.uk about living with both conditions and how most people still don’t understand chronic conditions.
PoTS is caused by an abnormal response to the autonomic nervous system, which means blood is not pulled downwards when you sit or stand up and there is a drop in blood supply to the heart and the brain. The heart rate speeds up to compensate. It causes symptoms including dizziness, feeling sick and frequent fainting spells.
CFS is a condition that causes extreme and overwhelming fatigue that doesn’t go away with rest or sleep.
Amy was diagnosed with CFS first when she was 13 years old as she was suffering from extreme exhaustion.
She was diagnosed with PoTS after she started to get new symptoms in 2013, while she was studying at college.
Amy explains: ‘I noticed I started to feel a lot iller. My symptoms were different from CFS – I kept fainting and couldn’t walk, I kept getting breathless and I couldn’t cope with any heat.
‘I was feeling sick all the time and had extremely severe dizziness. I was totally exhausted all the time. My vision kept going fuzzy or after standing or walking, it would my go black and I couldn’t see.’
When Amy started having fainting episodes, her mum bought her a wheelchair as they realised that she would collapse when she was walking.
Amy says: ‘That was my biggest challenge as I was worried about what people would think of me being in a wheelchair.
‘I also don’t like the motion of them – it can make you feel like your on a merry-go-round, but I’m learning to love that wheelchair and those crutches.’
Amy was eventually diagnosed with PoTS when her grandma read an article about the condition and they realised how many of her symptoms matched.
She was referred to a doctor specialising in the condition who carried out blood tests, tests on her heart and a tilt table test, where Amy was laid down, strapped to a table and moved up and down, while doctors monitored her heart rate and blood pressure.
The test showed that her heart rate was very high and her blood pressure kept dropping, which was what was causing her to faint, and she was told she did have the condition.
She says: ‘I finally knew why I was feeling so horrible all the time, but hearing there was no cure for PoTS was something I couldn’t bear to hear.
‘There have been so many days where I have cried for hours about how ill I feel. My biggest worry is being ill for the rest of my life, but somehow I just take one day at a time and try not to worry about the future.’
Amy has been living with PoTS for six years and her parents are her full-time carers as most days she struggles to get out of bed.
She says: ‘My life is certainly different from any other 23-year-old. It can be frustrating, infuriating, and incredibly emotional. It’s one heck of a rollercoaster.
‘Having PoTS makes me totally disabled. I totally rely on crutches around the house and a wheelchair when I have to go out. Sadly I can’t get out much because of how rough I feel. I’m at home 90% of the time and if I have to go out it will mainly just be for appointments.
‘It takes me all morning just to get out of bed. I have to force myself to get up every day. I use a shower stool when I wash as I am no longer able to stand in the shower because of the number of times I’ve fainted. I’ve honestly lost count the number of times I’ve fainted.’
Every day, Amy’s heart is constantly racing and when she sits or stands up, it gets faster. Often her heart rate will be 176bpm when the average heart rate is between 60 and 100.
‘I have constantly got horrific dizziness and vertigo,’ she says. ‘All I can feel in my head is this spinning feeling. I constantly feel sick in my stomach and I feel faint all the time.
‘Then there’s the lightheadedness and wooziness, which affects my eyesight making my eyes blurry.
‘Lying down is my most comfortable position. I can’t stand any longer then five seconds, if I did it would make me even fainter, or I would pass out.
‘I have extreme exhaustion. I have to force myself to stay awake, so any little thing I do will completely wear me out even more.
‘I’m in constant pain. I get hundreds of migraines, stomach pain, muscular pain, back pain, leg pain, chest pain, nerve pain, joint pain, and the list goes on.
‘I’m constantly breathless and it feels like I can’t breathe. I always have purple feet and purple hands. This is to do with bad circulation and blood pooling.
‘I constantly feel boiling hot, like I have a really bad temperature. I can’t handle any heat so I won’t go anywhere near a hot bath. I hate hot radiators, and can’t handle boiling hot weather.
‘I also have constant gut problems and I have sensitive ears. I can’t stand any loud noises, or someone shouting, thunderstorms, basically anything loud. My eyes are sensitive too. I don’t like bright lights or flashing lights and I’m constantly disorientated. I feel like I’m in a dream land and feel like everything around me doesn’t feel real. It’s a very strange feeling.
‘I would list all my symptoms but there are just too many. My everyday life is a constant battle but I will keep fighting till someone finds a cure.’
Amy was prescribed medication but suffered so badly from side effects, she stopped taking it and now her condition can only be managed by lying down as much as possible to prevent her heart rate getting higher.
Dealing with the condition has been very difficult but her parents, family and friends are a huge source of support for Amy.
She says: ‘My parents have taken care of me day and night. They have helped me with my meals, washing, getting dressed, helping me off the floor when I’ve passed out they help me with literally everything.
‘I feel I can’t ever repay my parents for everything they have done for me.
‘Coping with PoTS and CFS is something I can’t even put into words. I’ve accepted it more now that I have a long term illness but I will never stop believing and praying for a cure.’
Amy has found comfort in reading about other people with the same illness, particularly through Instagram.
She adds: ‘It made me feel less alone. For so long I thought I was the only person in the world who must feel this way but when I started reading other stories on people going through the same illness as me, I thought wow, people are going through the same thing.’
Although her illness means she spends most of her time at home, Amy still has interests and passions that help her get through each day.
She says: ‘I’ve been studying piano since I was 17 years old and I love photography, plant based diets, and story writing.
‘When I became ill I started telling stories to myself and then I thought why not try and put those stories onto paper. It’s my dream one day to have my stories published.
‘I make it my goal each week just once a week to do a little something even if it’s just for five minutes. I try no matter how rough it makes me feel.
‘When you’re poorly, it’s so hard to do anything, but you’re still making that big effort to try, and just from trying, that is an achievement.’
Amy also has a strong faith and takes comfort from her belief in God.
‘I believe that God can take even the really bad things that happen to you and bring something amazing out of them,’ she says.
‘I keep praying and believing that God will bring something wonderful out from all of this. Being ill has brought me so much closer to God and I will be forever grateful for having a real true friendship with him.’
Although the condition has a huge impact on her every day, Amy says most people don’t understand what it’s like to live like this.
She explains: ‘The most frustrating thing I’ve found is how you look well and healthy, but that is not how you feel at all.
‘It can be so hard to get people to understand how I’m feeling. People say things that make you think they just don’t understand my illness.
‘I’ve had so many people say so many annoying things to me, like “Oh you look well,” “you don’t look sick,” or “you’re looking better.”
‘I can’t stand it when people say these things. I have to bite my tongue because I never feel like that – I always feel horrible.
‘I feel what people need to understand it’s not how you look and it’s not how you sound, it’s how you feel.’
Amy posts about her conditions on Instagram and wants to raise awareness to help more people understand the reality of living with chronic illness.
‘I’m very passionate about spreading the awareness of PoTS and finding a cure.
‘PoTS UK has set up an awareness month this year for October. I’m so happy that they’re trying to get the awareness out there.
‘I’ve been taking part in the PoTS UK challenge this month, which is taking a photo every day on your social media throughout October and saying on each post how the condition affects your daily life.
‘I think from doing this it will help people to truly understand what it’s like to live with this every single day.’
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected]
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
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