Talking about or even referring to illness all the time is horrible. Using technical terms is often unavoidable, but a lot of the terms are a mouthful to say, and even if they weren’t, sometimes the “all the time” part makes people want to tune out, but for those of us who have no choice, we often simply get sick of those words… No one wants to hear about yet another injury all the time, nor do they want to hear why I can’t climb down on all fours and get under the bed or the coffee table to retrieve something… Nor does anyone want to hear me mention being in pain. But it is not helping me any longer to pretend that I am not in pain or struggling, and so sadly that creates quite the dilemma. So where is that middle ground where I can be real and congruent and yet not bore others to tears or make myself feel that my illness is defining and owning me? I make a point of not complaining as such, but I need to learn to communicate my needs without feeling like I am being a burden on others or even worse, living nothing but my restrictions. Not to mention that I am more sick of it all than anyone else!!
I have also learnt the last six months that explaining why I need help rather than just asking for something to be done, makes those around me way more responsive, …but on the flip side, explaining means talking about the why, and the why is repetitive EDS stuff which is quickly falling into all the above categories; a mouthful, repetitive and annoying! As a family we have always somehow organically developed a bit of a language for all kinds of things and I started noticing pretty quickly that we are developing a bit of this language for the chronic illness and injuries now too, …. and that this is helping us to take out the formalities and bring some personality to this stuff and make it less clinical.
It is also helpful to have short words or phrases that mean a TON all rolled into one so that we don’t have to explain too much too often. It’s a bit like a family referring to “the tennis racket incident” rather than constantly having to say the entire story… “that time when Johnny threw a tantrum about not being able to find his tennis racquet and ran out the front door leaving it open so that the dog got out and was nearly ran over and we all got so mad at him that he hid under the bed for a week”. It’s somewhere between (and probably all of), a code, a shortcut, a lightening of something otherwise quite heavy, a coping mechanism, and a way of acknowledging the big fat elephant in the room without letting him dominate anything!
A few weeks ago I introduced you to the name Mah Eeeds (short for my EDS), but there are a bunch of other names that I think are also worth mentioning as I will often use them now with my writing as well, so this will help explain them along with some examples:
Mah Eeeeds Knees:
…. Cleaning out the dog’s chewed up tissues (yup, snotty tissues are her favourite snack!) under our large coffee table is simply not an option for me any more, and is a major disaster for Mah Eeeeds Knees. So many different parts of me have so many problems and some of the problems are old and others are current. So when I talk about Mah Eeeeds Knees, the family knows that it is just the same old same old pain that I am referring to rather than something new that needs tending to but that I am having a bad time of them right now. It’s kinda short for “my knees are bad right now, but it isn’t anything new for you to worry about and I don’t need anything, but I am in pain and I can’t do as much as usual and could do with a little bit of TLC and understanding today….”
An example could be as simple as someone asking how I am and I can answer that “I’m doing well today thanks, other than Mah Eeeds Knees, I’m pretty good”. Or I can ask something like “can you please pick that up for me, Mah Eeeeds Knees aren’t so happy today so that would be really helpful”.
It is different to saying “oh dear I put my knee out today and can’t walk at all“. That is a completely different story. It is a little like the Cry Wolf story. If I share my knee problem all the time then when I really hurt the family will have tuned out. But because I don’t bore anyone with my knees on “normal” days, yet can lightly say something about Mah Eeeds Knees, when I do say that my knee has gone today they sit up and hear me.
Many many years ago I had one of my ovaries removed due to a tumour. It’s a long story for another day, but we had no idea about EDS back then and so could never understand why I have never totally healed. I have never lost the pain of the surgery and sometimes it appears cyclical and other times quite random. But regardless of timing or cause, there are days that I wake up that it is debilitating. I manage, and I get through without anyone knowing but my husband, but for many years especially long before diagnosis but just importantly since diagnosis, it has really helped that I have been able to say that “my Novary hurts today”, and that be enough. The word Novary is short for NO Ovary, because there is no longer one there, so it is kinda short for: “I have a lot of pain right now, at the site round about where they removed the ovary, and it’s making stuff hard today but I’m OK”.
An example could be when asked how I slept would be something like: “I didn’t sleep well last night coz my Novary was on a roll”. It acknowledges what happened and that it was yuck but again, it is a small comment that doesn’t bore anyone.
I walk into things ALL the time, the arches of my feet are collapsing, I have permanently smashed the tendons and ligaments in both big toes, some of the bones in my left foot are permanently dislocated, and I have done in my right Achilles tendon. So my feet probably hurt as much and in as many places as the rest of my body put together. . meaning that at any given time I could say that I need to rest or I can’t do this or that, because my feet hurt, and it could mean anything from my Lisfranc injury to a brand new smashed off toenail. Most of these injuries are somewhat transitory and simply contribute to the general strain that my feet take and I need to be careful. But my Lisfranc injury is a whole different ball game. The bones of the Lisfranc joints are slightly dislocated and will now remain like that always …and I can’t have surgery to “fix” it. Last July I couldn’t put any weight on my left foot AT ALL, and it took me months and months of two to three hours of physio a day in the pool to be able to walk again and put a little bit of pressure on it enough to go down to one crutch (although I cans till only walk for a short period of time). This gift of being mobile for lengths is life changing and I could damage it and lose it in an instant. It can be easy to forget that, or that to lose it would be devastating. So we need to manage my feet on a daily basis, and the balance between using my left foot in order to keep it strong and damaging it from using it too much is minuscule. Some days I wake up and the dislocations are already extremely painful and I can’t walk much at all, but on other days it feels relatively good.
I can push through the pain of a smashed toe (even though I shouldn’t) but we can’t compromise my Lisfranc injury EVER. So the Lisfranc injury is paramount and different to the other pain. I am sick of hearing that word (Lisfranc Injury) just in writing this post, so imagine what it is like living with it! … and so it has evolved to become Frank. “I need to take Frank home” is kinda short for “My foot hurts, but it is the bad kind of hurt, it’s my Lisfranc injury and it is giving me hell and I can’t push through this and we need to get it home and rested and elevated and perhaps some get some pain killers and anti-imflammatories into me” or “all of the above except it isn’t that bad yet but I’m on the cusp and I don’t want to risk it and spend the rest of the day resting or on medications to get me through….”
So an example would be that when we have walked a little far and my left foot is starting to ache, I simply say “I need to take Frank home, he’s not doing so well” and we all know what it means, and we can make a plan whether it is go home or find me someplace to rest a while.
Mah Eeeds, Mah Eeeds Knees, my Novary and Frank are all short cuts that are helping with the coping and keeping our feet on solid ground, ways of keeping the medical out of the room and helping to stop us tuning out or the Cry Wolf scenario, and in doing so help to keep our lives on some level of normal. I wonder if other people do this in their family?