1. Allodynia (Hyper sensitivity to touch)
One of the weirdest symptoms I’ve dealt with since I was diagnosed is called Allodynia. Its a sensitivity to touch but this isn’t your typical type of sensitivity. Imagine feeling like every piece of clothing you put on your body feels like scratchy wool no matter how buttery soft the material. That is what allodynia feels like. At least for me. It makes it hard to do anything because I literally am so distracted by the sensations all over my skin that all I want to do is…well…wear absolutely nothing. I know, super weird. But its an issue I’ve dealt with on and off since before my diagnoses. Post diagnosis I finally got a name for it. While I don’t deal with this symptom constantly…thank the universe…when it hits its quite frustrating.
2. Foggy vision
Is it foggy or is it me? I’m guessing that’s not a question most people ask themselves. But it's one I ask myself from time to time. Imagine you are looking through a weak fog or camp fire smoke and you get the experience of what this symptom is like. Now I feel incredibly blessed that each time this has happened it’s gone away. That is not the case for everyone. Some people start getting foggy (aka blurred) vision and their normal sight never comes back. For me this symptom comes on rapidly, lasts a few hours to a day and then subsides. I usually need good resting sleep to get it to go away and that is not always possible
Yes you read that right. One of the weirder symptoms I deal with is speech changes. For me this has manifested in certain words suddenly being spoken with a different accent. Not all of my speech, mind you, just a word here or there. I’ll be talking and all of a sudden I’ll say “about” with a more Canadian accent, or hello in a British one, the most amusing yet was when I said good morning to a friend of my with a clear southern US accent. We both looked at each other for a solid minute and were like “what just happened to your voice”. I’ll also have pitch breaks or slurred speech now and again. While most of the time this is funny it can be VERY ANNOYING!!!!
4. Crazy Hands—aka loss of fine motor control
Imagine you are typing on a computer and you suddenly lose all control of your fingers. You’re typing away and suddenly the words on the screen start looking a bit like this: I haev no cnrol fo my fingers rihgt nw. Some of the words are fine and you can generally tell what I was trying to write but the even the computer is like “What????”. It can’t figure out what I meant to write. Luckily when this happens I’ve gotten skilled at the talk to text feature and simply switch tactics and start dictating my emails and other work/life related communications. I often laugh quite hardily as sometimes as the creativity of auto correct. This feature has come up with some pretty unique translations of my gobbledygook. One of the funniest ones was when I attempted to write “grant opportunities” and it some how corrected to “great titties”. I still laugh about that one every time I have to write opportunities. At least this weird symptom has had the side effect of hilarity. hahahahaha
1. You’re not going to get better (necessarily)
I know it sucks. I wish I had some better news for you. But this is one of the lessons I wish I learned sooner rather than later. Getting diagnosed felt like a relief. Like I finally had validation that something was actually wrong and I wasn’t losing my mind. But along with that diagnosis came some hope that maybe I’d get better. Now I’m not against hope. I’m all for hope, but I also want to be realistic with the possibility of recovery. The truth is that the medical community, in my experience, knows so little about ME/CFS/Fibromyalgia that a “cure” is a long way off. What I wish I knew when I was first diagnosed was that the reality of this lack of knowledge we have surrounding these conditions creates inability to really cure the underlying causes of the condition. If we don’t understand the underlying causes then we are left only treating the symptoms. Which brings me to my next bit of wisdom
2. Treatments can make you worse…
Oh boy can they make you worse…so much worse. I’ve been through a myriad of different trials to treat symptoms. Some of which had the opposite of the desired effect. Whoopsie! We meant to help you sleep not cause insomnia. Whoopsie! we meant to reduce your migraines not cause them.
Thanks a bunch peeps…I really appreciate it!
I just lost another week or two of my life—like I hadn’t lost enough of already.
Finally I stopped trying most drugs because they just seemed to make everything worse. I wish I had known this sooner and been more cautious and inquisitive with my doctors. I really wish I had asked more questions and understood how bad these drugs could make me feel.
I will say that not all of the treatments I’ve tried had horrible consequences but many of them did and I simply wish I had known the likelihood that treatments could make me worse before I even tried them. Which brings me to my next point.
3. Become a self advocate
This part kind of sucked but if I’ve learned anything from being in and out of various medical systems, seeing a wide assortment of specialists and trying a myriad of treatments, some of which I shouldn’t have even tried, it’s that you have to self advocate. One of the best things I’ve ever done is brought a second person with me to important appointments. Not only is it a second set of eyes and ears but it’s someone who can provide support if you feel overwhelmed or forget the questions you wanted to ask. They can be the note takers and nudgers to remind you to ask the uncomfortable questions that seem to slip my mind as soon as I see the white coat. More importantly they can support you in your advocacy because they are someone who understands, is on your team and rooting for you. I can’t tell you how many times it’s been beneficial to have a second person with me at important appointments. They often get more information out of the doctors than I do alone. It’s almost like having a second person there who believes what is happening is really happening makes the doctor less like late to brush you off. Everybody slows down. Which is good because these conditions are complex and need more time to discuss. I wish I didn’t have to say or write that but that has been the case with my experience. On to the next…
4. Your dominant symptoms will change
This is a hard one. It's very difficult to navigate a chronic illness when it's constantly changing. But who doesn’t love an extra challenge. Am I Right? (HAHA) I’ve found that my symptoms are always changing. More importantly which ones are most prominent or dominant shift. This makes it really hard to manage and more importantly hard to treat because it's an ever moving target.
I wish I had known this going into it, and understood when I was diagnosed that my symptoms were going to constantly, and I mean constantly, change. No one day is ever be the same and a treatment or medical device I might need one day I won’t need the next. It's like an unpredictable target that disappears and reappears at random. Try getting a bullseye on that one. HA.
5. People will give you unsolicited advice
So this isn’t a new phenomenon people get this in all walks of life but my advice…
Haha…here I am giving you unsolicited advice on unsolicited haha. Well maybe because chose to read this it isn’t totally unsolicited…so here it goes
Everyone deals with unsolicited advice from time to time but the most annoying thing about having a diagnosis is when you share a diagnosis with people it seems to open up the room for conversation about what they think you should try or do to feel better. While this often comes from a place of kindness and caring it can be grueling to constantly have these conversations. So if you like giving advice stop, please, just stop, unless I bring up the topic myself. Thank you in advance.
Most of the time when people give me unsolicited advice I thank them say yes maybe I'll give that a try and then usually courteously somehow get out of the conversation by changing the subject or simply walking away. Walking away is usually a non-option if it's a family member, friend or you are in that awkward I’m cornered situation. (SOOOO AWKWARD).
Now not all advice is bad advice, unsolicited or not, but it can get grueling when it's a constant topic of conversation. I guess all I want people to know is that this is a journey and while I welcome most thoughts and conversations, please don’t perseverate on the topic. It already takes up enough of my time and energy and I’d rather not spend extra time dwelling on it if I don’t have to. Instead let's talk about ice cream, or the weather…anything other than the latest treatment or cure all.
Thanks...now on to the next lesson...
6. Get good at listening to your body.
This is honestly one of the hardest lessons that I had to learn. We live in such a go go go society that learning to listen to your body and what it's telling you is an incredibly difficult. I don't know about anyone else but I have been incredibly well-trained at ignoring what my body is telling me. It has taken time and constant awareness to make sure that I actually listen to what my body is telling me. This is had two major benefits. The first is that when I listen to my body I'm able to more accurately workaround or treat whatever symptom is more dominant at that moment in time. Being able to focus on reducing that particular symptoms impact on my life allows me to be more productive and happy in the long run. The second is that I'm much more able to predict and prevent certain symptoms because I know their major triggers, or at least a constellation of scenarios that seem to make certain symptoms worse. I'm not always successful and sometimes I have to accept that its just out of my control but by listening to my body I can sometimes reduce the severity of a flare.
7. Slow down!
We live in a fast paced world. I get it. It’s about how much you can get done in the shortest amount of time. But in my experience I pay a heavy price if I push myself. This goes hand in hand with the previous lesson. Learning to slow down has been a humbling process full of very active days followed by weeks of recovery. I’ve learned that if I just slow down in the first place I’m able to maintain a consistently higher level of activity. But there is a sweet spot and as soon as I pass that narrow place between just right and too much I pay for it. By listening to my body and treating feedback its giving me I have found more balance and stability.
This goes hand in hand with my next piece of advice
8. Learn to say no.
This one is really hard. Probably the hardest. I haven’t mastered it but learning to say now is vitally important to finding balance. What I have learned about saying no is that honing this skill has allowed me to say no to things that are less important so that I have energy and time for the things that are most important. I think that's a piece of advice and wisdom we could all use a little more often our lives. Well it is not easy practice makes you better at it. And I am still practicing.
So those of eight things I wanted to share and well I know there are probably many more I felt like this was a good start. As always thanks for reading, take care, and remember… it's about the journey…
I’m an imposter—at least I feel that way. I’m afraid. Afraid people will label me as a fraud and recent experiences have only reinforced this fear. But I can’t live in fear and I realize that fear is part of my problem because it creates the very feedback loop currently trapping me.
You see, my body is a mask and like wearing a mask, my body tells one story through its appearance when underneath, another, very different story is playing out. As a result I am constantly torn by the outer worlds feedback that I’m normal, while my inner world is crumbling, unable to cope with a myriad of symptoms that ravage my systems, invisible from the outside. And yet, again and again I’ve caved into the outer worlds story line, giving into the fear that if I stand by the truth I experience people will just call me a wolf in sheep skin. We call them like we see them here in America. What ever happened to “don’t judge a book by its cover.
But I’m done. I can’t pretend that I’m okay when I am not. Because pretending reinforces that I’m an imposter. But this is not a fake it till you make it scenario. I can’t fake the symptoms away. I may look fine but my reality is that
I haven’t digested food for weeks, resulting in malnourishment.
That I have a migraine piercing my brain like being stabbed with an ice pick on top the skull.
That I feel that prickling sensation, like when your foot falls asleep, all over my body for days.
That I spend nights staring at the ceiling hoping I’ll sleep but never do.
and so many more…
I’m an iceberg, you see one tenth of my reality. My pretty face, blond hair, blue eyes and trimmed physique. You do not see when I have to call family to pick me up. No, I don’t me give me a ride in a car, I mean literally carry my collapsed body. Or the days where the only seat I see is the toilet. Ain’t that a pretty picture.
I recently realized that if I go along with the outside worlds story I betray myself and I give permission to the world to disbelieve me. But my reckoning has come. I’ve felt the consequences of pretending “I’m okay”. I lose. So I’m going to tell my story because honestly I’ve already lost and what happens when you find yourself at the bottom. You realize the cavern you thought existed, the one you feared and actively worked to stay away from blinded you from the actual one in front of you. The one I’m at the bottom of right now.
So that’s it. I’m baring it all. Letting that facade crack so you might have a glimpse of my disability. I’m vulnerably speaking my truth and hoping that despite my pretty face you’ll have the courage to believe my words because I know that you too are more than what you appear to be.
Hi, I'm Liz. I like to write about life and the wisdom I cull from it. I use words and images to inspire empathy and connection with each other and the world.