Like all of our question series we answer everything separately and don’t read each others answers till we’re all done writing – keeps it more fun that way. Today we’re answering the question ‘What daily symptoms do each of us experience?’
Here we go!
Emily’s Daily Symptoms
Em: First let me start off by saying that any person with a chronic illness will know that the intensity of these symptoms varies a lot from day to day. From personal experience, I know that this is sometimes very hard for a ‘healthy’ person to grasp. The notion of ‘how could you do this yesterday and not today?’ can be confusing, but it is very common for me to have a day where I can participate in everything a person with no health problems can do, then be flat on my back the next.
My daily symptoms (at this point in time) come in waves. Sometimes I don’t feel too bad, sometimes it’s very bad, sometimes it’s bad for days on end but then it will get better and the cycle starts all over again. Frustrating, but it’s much better than being consistently incapacitated (as when I was first diagnosed).
The actual main issues that I deal with are nausea, fatigue, muscle and joint pain, low blood pressure problems (headache, shaky, fainting episodes), back pain (from Elhers-Danlos Syndrome), and an overall flu like feeling.
My least favorite of all of those is easily the nausea. Dealing with never ending extreme nausea for days or weeks on end is miserable and my heart goes out to anyone going through this, because I know the endless frustration and limited lifestyle that accompanies it (I will post my tried and true tools I’ve used over the years to combat it). The best advice I have for anyone dealing with chronic symptoms is to have your own set of remedies in your back pocket that provide some comfort to you, mentally and physically.
In the past, I used to get really bad anxiety about planning activities because I would be worried that while I was out, I would suddenly get very sick and not be able to function. Having tools that help alleviate my symptoms is a huge comfort to me and helps me feel like I’m being proactive when things get rough.
Kate’s Daily Symptoms
Kate: With POTS, SLE, EDS and all of the other random diagnosis I have, different daily symptoms seem to flare up and become more problematic at various times of my life. Right now, one of the more major symptoms that I’m struggling with every day is fatigue. I’ve been battling what seems like a never ending flu/virus and it has been making my fatigue at an all time low.
I find myself in a constant state of exhaustion. I wake up beyond tired and I have absolutely zero pep in my step. It’s hard to explain this type of exhaustion to someone unfamiliar with chronic fatigue. It’s unlike a normal ‘tired’ from missing a few hours of sleep one night or waking up early for work, it’s all encompassing and fully takes over my life. I’m forced to take naps during the day regardless if I want to or not. The tiredness gets so intense that it almost feels exhausting to just breathe. To battle these episodes of extreme fatigue, I try to make sure I’m up on my B vitamins. I notice that taking my Bs make the biggest difference in my energy levels and combating my exhaustion.
Another main health symptom I constantly struggle with is low blood pressure. Due to POTS (Postural Orthostatic Tachycardia Syndrome), my blood pressure runs very low even though I take multiple medications to try and bring it up. Because of this, I get very dizzy, nauseous, experience chest pain and experience an even higher heart rate (which is already VERY unwanted with POTS). This is a super common symptom with POTS, and it can make even the smallest of tasks seem daunting.
Besides taking my medications there are a few things that I do to try and combat my low blood pressure. First, (which I’ve mentioned in previous posts) I try to stay very hydrated by drinking tons of electrolytes throughout my day. If I feel myself dipping, the first thing and easiest thing I can do is drink more! Second, I consume an extremely large amount of salt- I literally put an insane amount of extra salt on all of my food (that will hold it). A high sodium diet alongside staying very hydrated usually helps bring my numbers up. My third go to option is to get an IV infusion. That just means going into the transfusion room (where I have a standing prescription) and getting a liter of saline water put into my veins. I don’t try to rush to this because I try to stay away from hospitals (due to my weakened immune system) and because my veins collapse easily, so it’s very tricky to get a good stick. But boy does it help bring me back to “normal” when I need it, nothing else quite makes my chest feel as good as an IV!
There are about a zillion other symptoms I experience on the daily. Usually migraines or joint pain are high up on my list and I’m sure if I wrote this post next week my answers might vary depending on what’s bothering me most on that particular day. But I write this now, with exhaustion and a tight chest.