Reset

One of the Lloyd Ladies took this of me today. I’m standing in my skates on the ice.

I can be just a bit of a control freak. And that almost caused my skating to go off the rails. Other things caused me to only skate a few times in the past six weeks as well, shin splints, an eye infection, a spree of nausea induced head aching, Even new shoes and a blister. But what was really causing a bigger problem was my control freakishness.

Here is an example: A popular thing for blind people to do is tandem bike. Often, you go to a blind people recreational event and there will be biker volunteers with their tandems for you to climb on back of and ride away on. Its cool. But not for me. I HATE tandem biking, because I am a control freak. I hate being on the back of the bike and feeling like I have no control over where it goes, what it does, how far it leans, etc. So, what do I do? I drive the tandem. I have the (very courageous) volunteer make tactile gestures on my back for left, right, break, etc. And I drive. Now, I’m not an idiot. I wouldn’t do this on a major street with a bunch of cars and stuff. I would only do this on a bike lane that is fairly unpopulated. But still. I think driving the tandem is fun, but not being the rear person. Even better is when I have been able to ride my own bike behind or beside a person riding a bike. But I can only do this on a really easy straight route.

So, doing my lesson with Anthony kind of felt like being on the back of a tandem bike. I felt like I was being driven around. Now, I just want to say here, if any one ever reads this who knows him, I don’t think Anthony did anything wrong. This is nothing to do with him, its all my psychosis. Its a level of not being used to skating with a partner, not being able to see while someone is pushing you around the rink at a speed you aren’t used to, not being able to confidently do the steps independently of him, and not being able to control the pain in my legs I have sometimes when with someone else. Its overwhelming and I was dreading skating. I did not want to dread skating.

But I also see where Anthony could really help me out eventually, so I think if I take these things one at a time, I could get to where I am not feeling like I am on the back of a tandem bike and having a control freakout. So, I think I am getting healed with my shin splints and the time off was good for that. I still did shin/ankle/leg exercises the whole time. I think if I could do most or all of the individual steps independently then I would feel more in control when skating with him. I could also have more confidence with the speed. Then the only thing left is just getting used to the whole not seeing and skating with someone else. I think when I learn the dances better, like where I should be on the ice (I mean they are pattern dances, this is not hard) that will help and then it will all come together.

So, I’m taking a coaching break. Anthony was all cool about it so its good. I returned to skating today after only skating like…twice in the last 6 weeks and got my mojo back. I had very little pain. I mainly only worked on forward stroking and some edge stuff. I’m ready to go back to my list of basic skills and start chopping away on them. And it was my birthday today, so my motto for the year is #48skategreat!

I know in the grand scheme, no one really cares that I skate and its just a frivolous little hobby of mine. But it has been “skate therapy” in some unexpected ways. Stuff like the above comes up, where my personal anxieties and issues come in and I have to decide to deal with them or quit. Its good to push through and work outside of your comfort zone (within reason.) But other stuff is getting worked through my head as well.

I was a caregiver for disabled people for around 28 years. Most notably, I was a primary caregiver for a quadriplegic family member for 22 years. It wore my down. It screwed with my mental and physical health, it was hard on my family, but it was no one’s fault. It just was a difficult situation. Near the end of my time, I would walk over there and feel like throwing up I had such burn out. I quit in late 2016 after finding hired replacements for myself. But it was a hard adjustment I still feel like I am going through. A year after I quit, a lot of things fell apart for this man and he ended up losing his apartment and is now living in a nursing facility, which is not ideal. I feel a lot of guilt over that.

There are three reasons I am even able to skate now. One is because my kids are older and more independent, another is because my husband’s business is doing well and the work I do for him I can do on a very flexible schedule, and the third is because I am no longer a caregiver. While his life declined, mine got dramatically better. Our business got better because Nik and I were not so stressed out trying to take care of him and had more time to sleep and manage things. The kids are not so stressed either and we have more time and energy to hang with them, help them with school, etc.  I was able to focus more on my health, eat, sleep and exercise more. Everything got better for me while everything got worse for him. I still see him in the nursing home regularly and we still text and stuff. I still help him out with small tasks from time to time when I can and bring him things he needs. But it is a complex emotional trip. It became one of those “put the oxygen mask on yourself before you help another” things, and I know if we kept it up, our business might have failed and my health  may have more rapidly declined. And he is not helpless, much of his decline happened because of some poor choices on his part. But I see daily that it is all an awful system that he has to contend with as well that is just really really challenging to be successful in. Its just…sigh. In the last year I’ve been spending a lot of time working out stuff in my brain about the whole thing.

So, I try to keep skating as a happy place, an anxiety reducer and unclouded by controversy and drama. I want it to stay that way because it is important that I have something that can be that. I think this means that I have to take things very, very slow. No rushing into dance lessons, no rushing to gain skills when my muscles aren’t ready. I’m 48 and I can still skate. I’d like to keep it that way.

Death by Shin Splints

My 8 year-old helping me do my shin stretches today by holding a strip of theraband while I pull it with my foot. And yes, my house is atrociously messy because nothing got done this week and my husband’s guide dog sheds 4 medium sized dogs’ worth of hair a day.

Ok, you all may have surmised that I had a little trouble getting a coach who would take me. I started at Winterhawks and didn’t even get any “no” responses, I got completely ignored. Emails and calls went unanswered. Friendly “hellos” at the rink got nervously rushed away from. So, when Anthony agreed to work with me, I was very appreciative, and I always attempt to make the newbie comfortable with me with a combination of telling them what I need for it to work but not making it be too much that I need for it to work. I try to be competent and fun to work with (hopefully) and sprinkle any education about my disabilities over time as we go to not be too overwhelming.

Last week went well. But this week was crazy bad. It was not his fault, nor too much my fault. So, my kidney illness that makes me have to count spoons manifests itself with these symptoms: headaches, nausea, kidney pain, and a lot of fatigue, in various degrees and intensities. So for the past four days, I was struggling to manage headaches, a bit of nausea and trouble eating, and fatigue. But, even though I took some Tylenol at 2:00am, I was good to go on Monday morning.

However, transit was not good to go with me.

It was fleet week in the lovely PDX area, and I skate across the river. The Willamette River, on Monday morning, was saying good bye to a bunch of navy ships that had been docked there. To do that, it needs to close down and lift up a ton of bridges. It took me two hours to get to the rink, and I ended up walking onto the ice in a hurry just one minute before my lesson was supposed to start.

Remember how last week I was happy because I took ten days off skating and thought my shin splints had all but healed? Well, without warming up both off and on the ice for my usual 45 minutes, they decided to come back with a vengeance. So, I had a trace headache, I had taken some tylenol and that always makes me woozy, I hadn’t been up in 4 or so days, I can’t see functionally at all when I skate with Anthony, and I had the worst shin splints I’d had in maybe…ever, after we started skating.

Do you know what your tylenoled, 4 days of no activity hungover, blind brain does when its being manhandled around the ice while in sharp pain? It panics and stops working altogether. He was telling me steps and left foot right foot and I was just like, “Wha?? Ow, ow, ow. Feet? Ow. Ow. Trip on toe pick, scrape, lose balance, ow.”

Here is what a smart person would have done. A) Asked the woman who has lessons after me if she would have switched times with me so I could warm up. She was RIGHT THERE, I could have asked… or B) told my coach to forget it, I’d pay him for the lesson but we either needed to quit or slow way down and just work on some really easy, basic stuff.

But instead, I just kept going in a blur of brain panic and blinding (ha!) pain because I didn’t want to be wimpy and have my needs be too overly “special” (barf) and so thus reignited my stupid shin splint pain. After the lesson, I had to get off the ice immediately and recover with skates off. I thought I would just take a break and maybe go pay for a public session so I could skate past the Hooky Club time, but when I got back on the ice, the pain was still dizzying. I even almost contemplated Uber-ing home because I thought I may die on the walk, but the billion dollar price tag encouraged me to tough out the walk. I ended up just getting back on the train after almost maybe 40 minutes of skating.

Ok, but WTF, Shins? Can’t we be friends again? I know at 47, I am not going to do as well as I used to. I know that it is more important to warm up and all that. But, really? I can’t let my illustrious ice skating career be killed by shin splints, can I? How stupid. Here is a video of a 95 year old man that skates twice a week. If he can do this, I should be able to do this, right? I’m nearly half his age! (Seriously, this is pretty cool, though.)

So, I’ve iced them. I stayed off of them for the rest of the day yesterday. Today, I went back to the Dr. Jo videos and did those series of stretches and exercises. They have improved a lot today. But I’m wondering if its something more. My skates? My orthotics? A more mechanical injury?  Should I stop with lessons for a while? Should I stop skating for a while? I am completely confused as to whether I am over or under doing it. Do I actually have to go to the doctor over this? Annoying. I did go to a podiatrist years ago for my plantar fasciitis issue (which seems to be no longer a problem once I put orthotics in my skates) but I never had this much of a shin splint issue before. Someone said to try compression sleeves? I’m getting very high maintenance in my old age.

Dr. Jo (I have been using her videos a lot, lately.)

Spoons, Spoons, Skates and Spoons

This is a graphic that explains Spoon Theory a bit by categorizing different tasks into how many spoons they might take up for a person.

I thought I would write a little about chronic illness management, because it has come up this week and it seems to be such a tough subject for people to understand. I did not skate on Thursday because I was sick. I was not so desperately sick that I couldn’t have done it if I really wanted to, but its an issue of pacing and management and where skating sits on the priority of my life.

So, you may have heard of “Spoon Theory.” If you haven’t, it may help to go read this.

I’ll wait.

So, yeah. Only I think it is more complicated than even she makes it because for me, I don’t know how many spoons I will get a day. It could be anywhere for 5 to 50. Also,when I refer to chronic illness, I am referring to my kidney disease However, my dual sensory loss also plays a role in spoon management.  The same task may vary greatly in amount of spoons it takes based on how well my vision and hearing is accommodated. Say I go to a social event. It is an event with a bunch of blind people so all my blindness needs are met, and since they are disability savvy, they are better than average but not perfect about my hearing. That event will take much less spoons than an event that is not disability aware, just everyday people. In this event, NO ONE is going to tell me who they are, where the food is, what is going on, they will point and say things like “over there, ” I will have to go to them because most will be too afraid to talk to me, and when I do, I will have to answer a bunch of monotonous questions about disability and go into “education” mode even though I would much rather talk about other things. This event will take maybe triple or quadruple the spoons of the disability aware event. The other thing that is more complex is that I don’t necessarily start with a fresh supply of spoons every morning. If I used too many spoons yesterday, I may have less today. If I decide to use too many today, I may be borrowing them from tomorrow. Its complicated.

Here are some of the things I do to try to make sure spoon management is more of a physical thing to deal with than an emotional stressor:

• I put things into categories. I’m lucky that I rarely have too many days where I can do absolutely nothing. So, I can arrange to do things from a less demanding category or a more demanding one based on my level of energy. For example, most desk work, I can do unless I feel so shitty I can’t concentrate. So, there is always something I can usually do to make myself more productive at home.
• I don’t think of sick days as days where I am just waiting it out getting better. I know that there will be a time when there is no more “waiting it out.” This is it. I don’t waste days being sick. So, I have a running list of tasks in all different spoon categories. There are always low spoon tasks. And even if I can’t do a whole day of low spoon tasks, I could do one…or two, or three. At the very least, I can hug my kid or my dog or my husband and try to be a good family member for a few minutes. Then I have not wasted a day.
• I have back up plans and more back up plans. Life for myself, nor my kids or others should not stop if I’m sick. It may be rearranged, but there should be no wait around to get better type of things.
• This is important when making commitments which is almost impossible to do when you have a chronic illness. Its scary. So, I give people advance warning and I tell them what my back up plans are. For example, every term I have to volunteer for 4 hours for my kid’s school to get a tuition break. I tell them upfront about my situation. I pick three things on three different days to do. I prepare substitutes for myself. And then I will be able to get one of those days done without too much letting people down. In college, I would talk to professors at the beginning of the term and say I may be here for ever class or I may miss too many classes. Lets negotiate what I can do if I miss too many. How many is too many? What alternative assignments or learning can I do to make up for missed days? It worked so much better to do that upfront.
• If I do commit to something that absolutely cannot be changed. There is about an 85% chance that I can push through it no matter what. But then I make sure that there is recovery time both before and afterwards. I would schedule easy days around it.
• I don’t listen to any kind of talk about my being “not sick enough” or “too lazy” or any of that shit. I and only I decide what I am well enough to do. No one else can judge me. I see what other people call “sick” and its bullshit. People who are well all year and then get a cold and take off a week and whine about it. The same holds true if they say “You are too sick to participate.” Chronic Kidney Disease is not contagious. Only I decide if I’m too sick to participate in something.  I know I’ve done way more sick than they’ve ever done, so its just impossible for others to judge you appropriately. I try to do my part to lessen any impact on others if I can’t do something, but that is where my responsibility ends.
• I also have a responsibility to take care of my health and try to work at as full capacity as possible whether that means going to the doctor, eating the right foods or understanding how to use Braille with a computer or finding a communication method that works. But I also understand that these things are ever changing, my body is ever changing, science is ever changing, and there is no way to always know the best way to take care of and manage my disabilities at all times. I do my best to keep up with it all, I’m not perfect, and I’m not going to feel bad about not being perfect.
• I understand and appreciate the concept of partial participation. With skating, I know that I cannot skate every day, do every class, competition, test, etc. I appreciate what I can do and don’t have an all or nothing attitude about anything. I try my best and measure myself against that and not what others can do. Doing a part of something is better than doing nothing at all.
• I prioritize based on my own priorities as much as possible, not others. Its not always possible. There are some bullshit things you have to do in life, like paying my water bill every two months by hand because the stupid water company won’t let me set up auto billing. Its stupid, but no water in the house is a very bad thing, so I do it, (fortunately its on my easy list.) But many, many other things do not have to be done, nor done by ME. This sometimes means my house is messy or the kids are eating McDonalds food. But my priority is that my kids get fed, healthcared,  educated, and feel included and loved at home. How I do that is sometimes fantastic and sometimes (McDonalds) just getting by.
• I am extremely lucky to have been able to set up a very flexible schedule for myself where we still earn enough money for the necessities of life (largely thanks to my husband, who is a workhorse and entirely supportive of me.) I know that this is difficult and not everyone can do this. But more and more work is getting more flexible and things like telecommuting, gig economy, work-life balance programs can help with this. As much as humanly possible, I’ve tried to build a life where my disabilities and illness are not obstacles but can be used as strengths. I am lucky to have several outlets where I can help my husband earn money, help other people, be creative and have a meaningful life even with disability and sickness. There are sacrifices to this. I could have had a more prestigious career, made more money, etc. But really? Perhaps not if I was always failing because I was sick all the time or unaccommodated and killing myself to make it in a full-time working world.
• I know that life is precious, at any time an instant could change your whole life, and there is only so much in my control. I try to make the best of what I have control over and forget the rest. I have a good inner core about who I am and what I can do. I don’t get concerned with who I am not or what I can’t do. I try to just expand upon what I can do and who I am. We are all in a decline, I know that there will be day I can no longer skate or remember who I am or fill-in-the-blank here. I can’t be scared about that. I can take advantage of what I can do today.
• Whining is extremely irritating to me. I try not to do it (much.)

None of this ever works perfectly nor do I always have the perfect attitude about it. But it tends to balance out in the end. I come back to this core. I was disappointed to have missed Thursday skating, I would have rather gone and done my group lesson (Its been three weeks!) But I did some other things and that day is done. I can’t get hung up on it. And I plan to go back Monday and so I am still a skater.

I’ve often said, oh-big deal about being Deafblind, but CKD is kicking me in the ass and making me feel like I can’t be who I want to be. It has been what feels like an “impairment” vs. the other stuff which just felt like an identity that has brought me more good than bad. I’ve often wondered why I can’t seem to look at CKD in the same light as my sensory disabilities. And…I finally think I’m starting to a bit more. This is who I am. I can do this today. I can’t do this today, maybe tomorrow. I’m not going to feel bad about it or apologize to anyone for it. I’m doing as much as I can and that’s enough. That’s me.

 

Ten Day Absence Made the Heart Grow Fonder

I have a confession. I was so unmotivated and disappointed by the skate I did at Winterhawks on 5/25 that I just wanted to quit this whole thing. I was in constant pain, I look like shit. The Winterhawks people seem to barely tolerate my existence. I have a busy life which is filled with work, kids, a loving husband and friends. Why am I making more problems for myself when my whole point in this was to feel better. Here is some video from that session which i did not want to show, but why not? (Someday I will actually show improvement and this will be the sad “before”….I hope?)

Winterhawks 5-24-18 from Lisa Ferris on Vimeo.

So last week I did nothing. I did not skate for ten days. I think I might have done 1 Daily Burn and maybe a few walks and only worked out for like, 2:30 hours. Then, I remembered that I have two paid skating sessions left with the Hooky Club as well as an appointment with my new coach. I should keep the appointment, use my last two sessions, and see how it goes.

It went great! First of all, I think the ten days off helped my shin splints heal. I had almost NO pain today. I did not even take off my skates and they felt pretty good. It was really the first time that throughout the whole session, I didn’t have pain. I did feel a bit out of breath, but that was probably more to do with the fact that I literally did almost nothing for ten days physically.

OK, so coaching. My coach was a dancer, and he almost immediately launched in to teaching me the dutch waltz. Which we did in parts together with the Killian hold. Except for that one time I practiced with a precision team, this was the first time I skated with another human where I have to keep together with him. Now, He was giving me A LOT of support, and I’m sure I looked just as bad as that video if not worse. But! I felt the familiar edges, The muscle memory of some of those steps started kicking in, I don’t have the muscle and balance ability to hold those positions on my own, but with his support I was able to get the feel for them. It was challenging and fun.

And a bit scary. Speed has always been a problem, and although I am sure he was slowing way down for me, I was going his speed. Visually it was a bit overwhelming. I could not orient myself at that speed. Then he would say stuff like, “left foot toward the center or the wall” and I would be like, “I have no idea where I am in space and time, I don’t know where the wall is!” I think that will get better when I’m not so freaked out about thinking about what steps I am doing, keeping balanced, and going so fast. Although I could still see a bit of light and color, that was really skating blind. Everything was just whipping by in a blur that I could not cognitively/visually interpret.

So, if I skate with a partner, I suppose that would be the easiest way to accommodate this. As a kid, I knew that I could never compete because of figures. I couldn’t see them. I did test in freestyle a bit, but that was it. Back then, it never occurred to me to try pairs or ice dance. That was for older adults. And Ice Dance, well, it was for Russians! There was not ice dance in the US (I thought). Although clearly JoAnn Schneider Farris proves me wrong, she was totally ice dancing then with a whole US team at the Broadmoor. In my twenties, I wanted to learn ice dance but I could not find a coach or partner. Partners for women are rare, especially for ones who are already in their twenties and just starting. The adult competitive scene was just getting started then and was not developed as it is now.

So now, I just figured I would learn solo dance because that has developed a lot in adult in the past twenty years. But now I recently found out that at the lower levels, you can dance with your coach as partner. Hmmmm, maybe this is the way to get past my speed problem. Dancing with your coach is expensive, as you have to pay all the expenses instead of splitting them, but it might be something to think about.

My husband, Nik, said he wants to learn ice dance with me. And although he CAN skate–he is Swedish Canadian so he was practically born with skates on–he is totally blind so would not be able to serve that role as guide. We could do it, and we might just for fun. But the bigger problem is that he really doesn’t get how much work and dedication it takes and he doesn’t have the time when ice is available. Besides, my plot to get him on the water in his own sport seems to be working. He is really liking rowing. (Here is a video of him on the dragon boat. He is the very last rower in the boat in the forefront that is moving ahead.)

So, I think I have recovered from my funk. And I think it might have been a good thing to take the time off. I had been skating in pain for over two months. Maybe things just needed time to heal. So, this week the plan is to skate today and Thursday, Finish up the last of my “Daily Burn: True Beginner 8 week program” which has taken me significantly longer than 8 weeks, and work up to heading back to the gym. This week and next week have lots of end of school year obligations and event for the kids and then we have dragon boat races on the weekend to go to! (He trains for 6 weeks and he already gets to race in a top-tier boat! I spend 12 weeks just trying to get my skates to feel ok. Ice Skating is a hard sport, you guys.)