I have, unfortunately, several invisible illnesses! One would be enough but nothing ever happens like that.
The two main illnesses I have are postural orthostatic tachycardia syndrome, (PoTS) and Ehlers Danlos syndrome (EDS) which I have previously talked about
Each affects me in a different way, neither can be seen, no one can tell I have either and that, in itself, causes problems.
Today I’d like to talk a little about PoTS. I was first diagnosed around six years ago after four years of investigations. The symptoms aren’t good.
Orthostatic intolerance is a term that is sometimes used to describe symptoms of PoTS. It means symptoms that occur on standing and are relieved by lying down. In addition to heart rate and blood pressure, other bodily functions that are regulated by the autonomic nervous system can be affected.
Before diagnosis, my symptoms ranged from mild to severe, tended to be worse in the morning and changed every day. I was prescribed medication to help and some of them are now better controlled.
Orthostatic Symptoms – occur when upright
There are lots of other symptoms, not everyone will get all of them, but most likely everyone will get some of them!
Palpitations are a sensation of your heart pounding in your chest. I hate this…feels like you heart is going to pop out!
- Dizziness or light-headedness or presyncope (almost fainting)
These symptoms usually occur when standing up but can occur with prolonged sitting. Before medication, I had these every time I stood up
- Syncope (fainting or blackouts)
Approximately 30-60% of people with PoTS experience fainting. Some people think that all patients with PoTS faint, but this is not correct. Pre medication I blacked out every day..the most was around 18 times in a day. It happens without notice, just bam! ..down you go. Until you come around you’re not even aware of it..very scary
Chest pain is fairly common in patients and can be worse when upright. The cause is not clear…something I still get but not so often and not so badly
Patients can feel breathless when standing up or with slight exertion. ..this I still get, walking any distance will have me gasping. On a good day I can have a walk with my dog, as long as he doesn’t mind me going slowly
- Shakiness or Tremulousness ..I never got this..thankfully..I dread to think how it feels
- Excessive sweating.. I still get this…constantly having to take things off…then get cold and put back on..then repeat!
Non-orthostatic symptoms
Symptoms may include nausea, diarrhoea, constipation, bloating, abdominal pain and vomiting. Many people with PoTS are told that they have irritable bowel syndrome…these symptoms are awful and have never gone away. I’m now diagnosed with diverticular disease…stomach pains are very bad at times…not recommended!
- Bladder problems ..another no for me..phew
Problems with circulation
This can be described as excessive glare, blurred or tunnel vision…for me I get very dry eyes
- “PoTS feet” (peripheral acrocyanosis)
Purple hands and feet affect around half of patients…yup…looks like I have gloves on!
General Symptoms
These are common symptoms of PoTS and can be an ongoing symptom of PoTS or last for a considerable time after a PoTS flare. I am always tired..I’ve learnt to pace myself which helps tremendously
People with PoTS often complain of ‘brain fog’ which is difficulty in thinking or concentrating.
Brain fog has been described as being “forgetful, difficulty thinking, difficulty focusing, cloudy, difficulty finding the right words or communicating. It may be triggered by fatigue, lack of sleep, prolonged standing, dehydration, and feeling faint. Although aggravated by upright posture, brain fog often persists even after sitting or lying down. ..try studying and getting brain fog. This frustrates me so much..I can be talking and I go blank..can’t think what I was going to say. I know many people experience this at times.. try it every day?!
Approximately 30% of those with PoTS have orthostatic headaches, which means they occur as a result of being upright and may be caused by reduced blood supply to the brain. Many with PoTS also have migraine type headaches…I’m very lucky that I rarely get headaches…but when I do, they last for days
- Exercise intolerance..what’s exercise? I struggle to walk most of the time, so exercise is mostly out of the question. I do try but have to take it slow
- Poor sleep ..ask my very patient husband. I sleep poorly, very fitful. A lot of that is due to pain from my EDS..my joints are so lax that when I truly relax into sleep, they dislocate. I think I’m naturally tense when going to sleep as I’m so wary..
Many patients with PoTS have problems with sleeping. This may be trouble getting to sleep, waking in the middle of the night and trouble getting back to sleep.
(Information of symptoms taken from PoTS UK website. https://www.potsuk.org/symptoms)
As you can see symptoms are many and varied. My medication really only controls the blackouts, which I’m thankful for, but, like EDS, you can’t tell what I’m experiencing. When I go to the shop I get looked at for parking in a disabled bay…even though I need to be near the door. I’m not ancient..yet..I’m about to turn 54..and I’m expected to work, drive, exercise…all the normal stuff people do at my age…but I can’t do them. To look at me you’d never know.
I get up each day and get dressed, clean my teeth, brush my hair…then sit on my bed for 30 minutes to get enough strength to walk downstairs! Making breakfast, a cup of tea and then carrying them to the lounge requires a further sit down afterwards in order to do anything else. Currently everything has to go on a tray as one of my elbows was damaged when it dislocated…trapped radial nerve they think…so I can’t use that hand or arm.
I plan my week of jobs very carefully…Monday..wash dishes, Tuesday, hoover..Wednesday..clean bathroom..(well..bath..or sink..)..and so on…one task a day or I’m done.
I sometimes look back at what I used to do..two jobs, five children..a house to run..and me at the helm…and I loved it, every minute. Now just thinking about it makes me tired.
However, there are many good things. In 2019, for Lent, I gave up negativity. An odd one I know but I thought I’d give it a try. I promised myself to try and see the silver lining in everything. I enjoyed it so much I’ve continued…for example, not being able to walk fast, or too far, with my dog means I get chance to look around, to enjoy everything around me. I notice the birds singing, the water trickling past along the canal. I take time to sit on every bench I pass and just watch people going by. I would never have done that. In times gone by taking a dog out would have been just another chore to be done as quickly as possible, now he is the reason I leave my house.
I had to leave my job when I became ill with this..but later on, when some years had gone by it made me rethink my life. I went to college, then uni and now do a job I love every day..before this I might never have got the chance. I get to help people, every day, from my home..perfect.
So…next time things seem bad, slow down, take a breath..look around you and marvel at the world, at its beauty..give yourself chance to breathe xx
thelifeandtimesofcate 