This week is National Invisible Chronic Illness Awareness Week, or Invisible Illness Week, for short. My daughter has the invisible illnesses of life-threatening food allergies and asthma. I would like to share with you, today, a little bit about my own invisible illness.
I have a muscle-weakness condition called Hyperkalemic Periodic Paralysis, or HyperKPP. You can find a description here, but the condition presents itself differently, in each person, to some degree. Here is an excerpt:
What is Hyperkalemic Periodic Paralysis?
Hyperkalemic Periodic Paralysis (HyperKPP) is a rare inherited muscle disorder which causes episodes of paralysis or weakness. It's estimated to occur in only one of 250,000 individuals, though since it is inherited there may be several patients in a single family. It was only recognized as a separate disorder in 1955.
Why do I get weak during episodes?
During attacks of muscle weakness, potassium moves from the muscle cells into the blood, causing an imbalance in the ratio of potassium inside and outside muscle cells. This makes the cells unable to contract properly.
My potassium level is always normal yet the doctor says I have Hyperkalemic periodic paralysis. Why?There is another variation of this condition, that is more prevalent than HyperKPP (1 in 100,000) and that is Hypokalemic Periodic Paralysis. They, basically, have the reverse problem - their potassium gets too low, in general. In the most general terms, Hypers have a low-potassium diet, whereas Hypos eat a high-potassium diet. Either way, we all experience bouts of paralysis.
The term 'hyperkalemic' is somewhat confusing, because in most patients the level of potassium in the blood does not rise above normal during attacks. 'Hyperkalemic' refers to the fact that attacks may be triggered by eating potassium-rich foods or by giving the patient potassium.
The paralysis episodes were more frequent and more pronounced in my younger years, as I wasn't diagnosed until I was 18 years old, even though my symptoms started in early toddler-hood. That's too long a story to cover in this post, though. After diagnosis, I started taking a medication that dramatically reduced the number and frequency of full-body paralysis episodes. However, I still had plenty of episodes of partial weakness. Sometimes it would be one leg, one arm, weak knees, a "floppy" foot, etc. The full-body paralysis episodes came when I got very sick, like the times I had food poisoning (how many times can one person have food poisoning?!) or some other depleting illness.
Let me explain a little bit about what full-body paralysis is like, for me. It does not come on all of a sudden. It's often a gradual process, that sometimes happens during sleep, though it has happened many times during my waking hours. I can usually sense it coming and lie down. If it happens in my sleep, then I wake up, and basically, I can't move. It's not a rigid immobility, though. I can sometimes wiggle my toes ever so slightly, or my fingers. I cannot lift my head, but I can usually turn it side to side. I have full sensation, so my body isn't numb. Sometimes, the most torturous part is when I get a strong itch, somewhere on my body, that I cannot reach. It also causes great discomfort when my legs are immobile for a long time and it feels so wonderful when someone picks my legs up and moves them around for me. I am lucky not to experience pain during these episodes, as some do, with myotonia. The only time this causes me pain is when I have what they call "abortive attacks", where I don't go into full-paralysis, but perhaps one leg is weak and the other leg has to pick up the slack, and then there's soreness from that.
As I lie on the bed, depending on the severity of the attack, I might be able to rock myself back and forth and flop my arm over me, in an attempt to grab the sheets on the other side of the bed, so I can attempt to pull myself onto my side. If I am too weak for that, I will need help. When someone helps me sit up, I might not even have the stomach muscle strength to keep myself upright and will need support. I can be in this state for a few days, with my strength levels fluctuating.
It's best if I am kept warm, as cold can be a trigger for me. I have to eat throughout the day, to keep my strength up. I am always surveying the landscape, even on my "good" days, looking for bumps, dips, and things which might trip me up. A trip can lead to a full-blown fall, without enough strength and ability to really catch myself, depending on the angle of the fall. I have trouble with stairs a lot of the time, but I can usually walk up a short staircase, on a good day, if there's no alternative. I can't run and haven't since I was a child. Sometimes I can't lift my leg up at the knee, from a sitting position, but I'll be fine walking on a flat plane, for a longer distance.
I have a handicapped parking pass, and I've read so many threads by people who complain about seeing others who look "fine", yet are using passes. I'd like to explain that these passes are prescribed, with physician approval, for a wide range of conditions. I, personally, use them on days when I'm feeling weak in the knees, and need to be close to the ramp, avoiding the curb. A longer walk through the parking lot provides more opportunities for tripping and falling on uneven, gravelly surfaces. Once I am inside a store, I can lean on a shopping cart for additional support, etc. I also, sometimes, use my pass at large theme parks, which may seem strange, at first, since you know I will be walking quite a bit. However, that is precisely why I need to park close. Once we're done, I will be spent, and again, getting to my car ASAP is helpful, without navigating the busy, pitted parking lot. I don't use my pass when I am feeling fine. Nobody has ever approached me about using my pass, but I ask if you ever think to do that to someone, please consider that they might have an invisible illness. If they don't, it's on their conscious.
I don't usually focus on what I *can't* do, but I've mentioned some of my limitations, in this post, to explain the nature of my condition. I have been so many places and done so many things in my life, but I cannot deny that having this condition affects every single facet of my life, in some way. I was lucky enough to participate in a clinical trial that pretty much gave me a year off from my condition, but since it's a rare disease, the funding ran out, there's no interested manufacturer, etc., we may never get that drug on the market. (It has been in the FDA approval process for *drum roll* 22 years!)
I know there are so many of us out there, with a wide variety of "invisible illnesses/conditions", and the effects of these conditions vary and affect everyone differently, so please consider that, in your interactions with others. There is a video on the Invisible Illness Week website that you might relate to, if you have an invisible illness. (The first 15 seconds comprise the intro and it's not a malfunction.) If you don't have one, I especially urge you to watch this video, so you don't say these things to your affected friends.
Thank you for reading. Please feel free to share any invisible illnesses that you may have, so we can all learn more about the struggles that hide in plain sight.
Selena, I appreciate this post to no end! Your plight is challenging and yet, you dedicate yourself to others to educate about allergies and eczema and so much!.ReplyDelete
You are one UBER incredible lady and I hope you know this!
Also, I never knew this week existed! What a great talking point!
Thank you very much, Caroline! There is so much I have to say on the subject, but I have a hard time narrowing it down and finding the words to express all that I want to express.Delete
I didn't know this week existed, either, until a couple of days ago! I agree that it's a great talking point, as it applies to so many issues.
I thank you for your sweet words and hope you also know how amazing YOU are! (((HUGS)))