The Spoonie Sagas #1: Coping with Chronic Illness (CFS, FMS, Migraine)
Updated: Sep 30, 2019
I haven't been very vocal about my health issues, but that changes now. I was waiting so long for a concrete diagnosis. I felt like I couldn't speak out about what I was going through until I had a label to put to it. But, after yet another disappointing appointment, another prescription of pills to treat just one of my symptoms, I realised so many others are facing the scary thought I am: There may never be a definite diagnosis. Or, if there will be, it's going to take a long ol' time to get there. There's not much out there for people with undiagnosed chronic illnesses. So, I figured it's time to brave it and tell my story, in the hope of helping others like me.
// Trigger Warning: Themes include prolonged illness, including vomiting, mental health and prescribed medication. //
My name is Hannah, I am 20 years old and I am a spoonie!
Dictionary Corner: Spoonie is a recent term, which refers to somebody with a chronic illness;
usually physical, but occasionally the term is also used for people with mental illnesses too. The
idea is that a sufferer will have a limited number of spoons per day - a low spoon day suggests
the sufferer has little energy, whereas a high spoon day may be more productive.
Last October (2018), I began to experience episodes of dizziness, nausea and weakness, which came with intense migraines, fatigue and feeling like I was going to faint. These episodes were initially happening roughly twice per week, but became more frequent, until one day, when performing in the band of a musical theatre show, I became very ill, unable to sit up without vomiting and passing out. I was taken to hospital in an ambulance and hooked up to an IV for 23 hours.
My life had suddenly come to a grinding halt.
I was placed on bed rest for a minimum of 2 weeks, with the advice to extend it to a month if my symptoms had not improved. I ended up confined to my bed for 3 weeks, after which time I could move around the house a little more. I expected to be better quickly; rest a bit and then get back to my very active lifestyle. I expected to wake up one day and everything would be fine again. That day, so far, has not come around. Instead, I have to take each day as it comes, working out how well I feel and planning my day accordingly.
My condition comes with a whole host of seemingly random, unconnected symptoms and 'flare-ups'
Dictionary Corner: A Flare-Up, sometimes shortened to Flare, is a period of time when symptoms
are escalated, or worse than is normal for the sufferer. They vary from person to person,
depending on the condition and which symptoms normally occur daily.
Personally, my symptoms are as follows. This is in no way an extensive list for other chronic suffers - each person experiences things differently and each condition comes with a range of different symptoms. These are mine:
High heart rate
Low blood pressure
Sensitivity to sound
Loss of voice/sore throat
The symptoms in bold are ones I experience daily. The symptoms in red are ones I can have during flares. Other symptoms listed occur less frequently, but are still things I have to watch out for..
I've been for all the tests, all normal. There is no more measuring to be done. In some ways, that's a good thing. It was a relief to know all my vitals are alright and I'm not in any imminent danger. But, it also means I can't physically prove anything. Every appointment I go to is full of patronising phrases like:
"Are you sure you're not exaggerating?"
"It's in your head."
"Everyone gets a little bit tired sometimes."
Always the same. I go home feeling invalidated, disappointed and frustrated. I have a cry, I get stressed, it causes a flare and I have to go to bed.. It's saying something when even going to the doctors is becoming a trigger for me.
Dictionary Corner: A Trigger is something which causes a flare to occur. More on these later.
Officially, my condition is likely one, or more, of a few things: chronic migraine, fibromyalgia (FMS) and/or chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Often, these conditions go hand in hand and a sufferer of one will have another too. Either way, it's a lengthy process of elimination for any kind of diagnosis, which makes a lot of things difficult.
Some of the challenges I have met include:
Having to explain my symptoms over and over again to every new doctor I meet.
Trying to convince friends and family that what I am experiencing is more than being a little burnt out, or tired.
Adjusting my life so I'm never going out two days in a row and having to pace myself, taking breaks all the time, to lie down and rest.
Those are some quite generic consequences of most chronic, invisible illnesses. There are, of course, others which are specific and personal to each sufferer. The most painful one? Having to say goodbye to your old life, before you became ill.
As much as I always tell myself it could be a lot worse, it could also be a lot better. So, to anybody suffering, or anybody who knows someone suffering, here are some things I have learnt about coping with chronic illnesses, since this all began.
Told you we'd come back to these! Triggers are important to identify, so you can avoid them. It took me months to figure out some of mine and it is by no means an extensive list. However, it has helped me to manage my condition to the best of my ability and leads to less flare-ups overall.
Reflect on the last flare-up you had. What were you doing right before it happened? What had you eaten, or drunk? How were you feeling? Record all of this, even if it seems irrelevant. Next time you have a flare, record the same information. Once you have a list of three or more, see if any patterns emerge.
Through doing this, I discovered some of my triggers. The current ones I know about include:
Excess sugar (i.e. sweets, sodas/fizzy drinks)
Emotion - being overexcited/angry/stressed - I always say I have to be between a 3 and a 7 on the emotional scale!
Some forms of exercise - spinning, turning upside down, core/ab work, anything which places too much pressure on one part of the body.
Sleep deprivation (which can be hard to manage considering insomnia is a major symptom of mine!)
Knowing When to Call Time
If you are a chronic illness sufferer, you will have heard the phrase 'listen to your body' more times than you can count. But, I have something to add to it! Listening to your body is great, but what happens if you can't just cancel today? Sometimes life gets in the way and as much as it's important to pace yourself and rest, in a busy world that can be tricky. So, it's important to find balance and know when enough is enough.
Say you've booked a doctor's appointment for this morning, then you're meeting your friend for lunch. You organised it on a good day, but you've woken up and it's a really bad day.
Dictionary Corner: Good Days and Bad Days are referred to by sufferers as the intensity of their symptoms on that particular day. Synonymous with spoons, a good day would be a high spoon day, whereas a bad day is a low spoon day.
It's all about finding the balance. It's not going to be practical to do both, but there are ways to work around it. Your doctor's appointment is important, so if you can make it along to that, great! If not, see if there's an alternative - can you ask your doctor to call you later? As for that lunch date, can they come to you? Think about pacing. If you manage to get out for the appointment, you may need to rest - can you get a takeaway together in the evening?
It's important to remember that a chronic illness does not have to stop your life completely. It's all about the small adjustments you can make to live life practically!
Those are my biggest tips for today! The next instalment in The Spoonie Sagas is going to be a big ol' list of all the ways I treat my symptoms. If you have any tips for certain symptoms, please let me know in the comments below, or contact me on my social medias at the top of the page! Also, if you are a chronic illness sufferer, or you know someone who is, I would love to hear your stories. Pop me a message - perhaps we could start a 'Share My Story' segment in these Sagas!
That's all from me today!