Monthly Archives: January 2016

It’s coming 

I can feel health comas coming. There’s nothing you can do to avoid them- small naps, being lazy, nothing. About a week in advance, my knees start hurting, my muscles are tired, my hearing gets bad, and my memory gets worthless. It gets worse and worse each day, until I fall asleep for 16 hours- involuntary health coma. Usually I can clear my schedule and sleep all day; sometimes I can’t, and I drop the ball on some thing. It’s an inevitable and inescapable part of life with this type of disability.

I’ve felt it coming since Tuesday, only identified that it was more than simply tired yesterday (Wednesday), and I expect it’ll hit Saturday. When I have a work training. Hopefully I can hold off and crash Sunday…

If this happens to you, don’t fight it- your body needs this. One of the best pieces of advice I’ve taken and give out is: have one day a week that’s an established day of rest, don’t schedule anything during the day on your rest day.

Side note: useless

I realize that the language I use for being physically useless is very similar to what “normal” people say for when they’re tired or down or feel bad. Which means that I often sound whiny. The difference between me hiking and being down the next day and a friend of mine hiking and being down the next day is pretty serious: they may just need a hot bath and sleep, but can still walk around the house, check their mail, make food, play video games, etc., whereas if I do the same activity, I will be utterly useless the next day. It mean sleeping and hurting all day (which makes for restless sleep that somehow leaves you even MORE tired), can’t leave the house, can only longingly dream of standing upright long enough for a shower, knees are so swollen that even the thought of walking makes you cry…. And cooking isn’t even a treasured dream because it is so not happening.

A disabled person’s “useless” and “down” is orders of magnitude, is exponentially, more severe than the average person’s “useless” or “down”. It’s not whining, you can’t understand, and I usually don’t want to explain so I’ll just nod and laugh about you cracking jokes about my stamina.

Spoons: Explaining systemic disorders

It is incredibly difficult for people who are in general good health and physical shape to understand the demands of chronic diseases and conditions. A lady named Christine Miserandino published the 20160117_153139-1Spoon theory, which is widely popular to explain energy/effort rationing. It is quite effective and while other examples can be used, the popularity and acceptance of this explanation simply makes it a more effective tool.

I have friends with whom I have never discussed this theory reference it when we are talking, so I truly love how people are starting to understand the concept of energy/effort rationing for those with chronic conditions.

However, the theory starts the understanding, but does not cover it all. Spoons come in all different sizes and sometimes, not only do we need more spoons, we need bigger spoons. Or we used bigger spoons. Sometimes, the spoons have holes that we don’t expect and have to compensate for. And sometimes (although not pictured), our spoons are actually sporks – and wind up hurting us.

It’s a humorous threat to kill someone slowly with a spoon….

because it hurts more and takes longer.

I can feel great, go shopping, and then not be able to walk from the car to the house. I have crawled into my house more than once. It’s humiliating, humbling, and necessary. My wonderful husband calls it “hitting a wall.” Can’t predict it. Just suddenly, my body says no  more. All the spoons disappeared into a black hole and stabbed me on the way out.

People with chronic conditions have to decide what it more important – pride or functioning. Of course, I speak of my own experiences and opinions – no one else’s. We have to learn how to ration our efforts and determine whether we have to take it slowly for several days in order to have a night out with dinner and a movie. We wind up cancelling social events, because at times, they are simply too much work. This often isolates us and stresses our friendships. And yes, people who love us should understand, but all too often, they simply stop inviting us, because we never show anyway.

This happens professionally, as well. We sometimes cannot make meetings – or cannot make them in person. We cancel events. Or we put so much effort into not risking our professional standing that we have absolutely nothing left for home. A common complaint from loved ones is “How can you have enough oomph to manage work, but you come home and can do nothing?”

Because it takes everything we have to get through work. We rely on home to be safe and we can stop faking, we can stop exerting so much effort just to be “normal.”

It’s hard on our loved ones who just don’t get it. They see us looking so healthy and accomplishing so much and feel that we are faking whatever it is we think we have – lupus, fibro, sjogrens, whatever…it’s just in our minds.  Trust me, we would trade what we have to be “normal.” No one wants this. We don’t ask for it. It just is. And the emotional trauma of being accused of being hypochondriacs is truly stressful on us who are simply trying to live in a world that doesn’t accept us, trust us, believe us. Sometimes, this skewed view physically endangers us if it’s a case of not being able to get meds, stay on a schedule, see the doctor, get the test – whatever it is we need to address either the chronic condition or the acute issue. This attitude physically harmed my children when relatives refused to accept the situation.

So, I love the spoon theory as an entry point to understanding the complexity of our conditions. Just know, our conditions are so much more and spoons just start the process. But it’s a start. And no, you cannot loan us spoons, but you can give us acceptance and understanding.


imageI took a buddy and my dog and set out for Lost Dutchman State Park. It’s a fine park, you can just hike around the mountain on nice, level ground; or, optionally, you can get to the midpoint of your planned 2.4 miles hike, gasping for precious life, and decide that taking that detour to get up closer to the mountain would be a grand idea.

We took option B.

We are less than smart, but we made it.

There was a bit of an incline, and I know from experience that inclines of any sort make my legs hurt and end up with me throwing up on the side of the trail. Today was no different. I’m a total pro and it’s no big deal- I just step aside, heave it out, and keep going. I even came up with a flawless cover that makes concerned do-gooders laugh and (most importantly) leave me alone: “I’m fine, just had a rough Friday night… Hoo-yah,  amirite?” Works every time.


So my legs are useless noodles and thank goodness it’s a three day weekend, because I will not be productive AT ALL tomorrow. Totes worth it, though- I got 9300 steps in today and it’s only 3:30, and I’m beating my dad for the week (whole family has fit bits and he WAS the undefeated champion).

anyhow. 3.3 mile hike. It sucked but was pretty and interesting, gonna pay for it but it was worth it.

Advice: have a funny cover story ready to get concerned good Samaritans to leave you alone, because you’re a pro and don’t need that conversation constantly. Save your breath for sucking in sweet, sweet oxygen.

Pride goeth before a fall: the story of three women and a wheelchair

For someone who is not visibly disabled, using a wheelchair is humbling. I have learned over the years though, that the ability to enjoy a vacation with my family is much more important than my personal pride.

December 26 – January 2 we took an Eastern Caribbean cruise on Norwegian Cruise Lines (never again, but that’s a story for later). My husband and I in one cabin; my mother and two daughters in the other. NCL messed up the reservation and did not put us in disabled cabins. We were able to get their room changed, but not ours. Thank goodness, I am not in a wheelchair full-time. In fact, I am usually only in one for extremely long physically challenging days (like doing Disney World or something). But we take a travel wheelchair and a cane just in case.

fatesBut like the three blind fates sharing an eye, we had one wheelchair to share among us. Turns out, my daughter and mother used it more than I did. In fact, I don’t think I used it at all – although I could’ve benefitted from it.  Canes often hurt more than they help, because of my wrists.

In addition, we also forgot the for my mom, holding her feet up hurt worse than walking.

We provided our tips for traveling, but here are my notes for traveling with a shared wheelchair:

  • Be prepared to have to explain to the crew (ship and plane) ad nauseam how one is disabled and sometimes in a wheelchair and sometimes not.
    This includes working with airline personnel for assisted boarding of one or more of our party who may or may not be in a wheelchair or using a cane. Mobility challenged is not always visible. In my case, my biggest challenge with flying is balance issues on the ramp.
  • Be prepared to explain it again.
  • Learn to ignore the looks of disdain on people’s faces when they see you out of the wheelchair. 
    People can be unknowingly cruel. Sometimes they are outright insulting and demeaning, but there are times when they are genuinely confused. Unfortunately, most people choose to first go to the insults and scathing doubts. Meeting this so often can have a chilling effect on us using a mobility aid, which then has a chilling effect on our enjoyment of our outing.
  • The wheelchair can serve as a walker.
    Oh, this is the best benefit of all. One can sit in the wheelchair and the other can push it, effectively using it as a walker. Or even if no one needs to sit in it, it can easily carry belongings (and shopping bags) that would be impossible for us to carry. This can detract from shopping (gasp!), so in this case, the chair really does help. Yes, a cart would help as well, but 1) pulling something makes my arms go numb – which is why I cannot pull a suitcase and absolutely love the 360 swivel bags and 2) most carts cannot serve the dual purpose of a walker.

As stated in the beginning, sinking my pride does not compete with being able to enjoy vacation time with my family. I rarely have to use a wheelchair, but the number of times I have collapsed in public because my legs gave out or my back seized up (and I truly mean seized like a Norse god slugged me with Thor’s ginormous hammer) has convinced me that an ounce of prevention is worth that pound of cure. Although – some paramedics are incredibly hot. That kind of thing truly puts a damper on a family outing.

So we sink the pride and try to ignore the judgmental idgets sharing the air around us.

– and by the way,  it is amazing the number of IQ points one loses between standing on two legs and sitting on 4 wheels. The unconscious discrimination is appalling.


- How much do you know?

at the Heart of Privacy

K Royal (@heartofprivacy)