Which is it…Physical Therapy or Physical Torture?

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Image- The difference between a physical therapist and a terrorist?? I hear you can reason with a terrorist.

 

***The purpose of this post is to give light and exposure to what physical therapy is like for those of us with IC and PFD. This is not in any way meant to discourage anyone from going to PT. PT is extremely beneficial in healing those of us with IC/PFD. I would not stop going to PT for anything because it truly helps me. And the comparison that physical therapy is like physical torture is tongue in cheek. *** 

Every Monday I go to physical therapy (PT) for my Pelvic Floor Dysfunction (PFD) and Interstitial Cystitis (IC). My pelvic floor truly is dysfunctional so it needs it. My PT is not just focusing on the pelvic floor, it focuses on many parts of my body…thighs, abs and back. All of these body parts hurt because of my IC and PFD. 

What makes my pelvic floor so dysfunctional… my muscles tighten up so much that I can’t pee. I am physically unable to pee. I sit down to pee because I need to pee (often due to my IC). And I just sit there. At it’s worst, I’ve sat on the toilet as long as 15 minutes trying to relax enough to just be able to pee. It’s excruciatingly painful in a way that is hard to explain. The more stressed out I get the worse the issue becomes. This applies to my entire body. My whole body seems to want to protect my bladder… so it tightens up to do so and then forgets to release. So I am just walking around all the time in pain because all my muscles in my body are so tight. But PT does help with that. 

And at this time my PT is indefinite…as in there is no timeframe in which I will be going. Usually, people go to PT and they are told this will take 4-6 week or something like that. But in my case, and others like me, who knows how long it will last. I have been going since mid-December 2016 and there is no end date in sight at this time. 

My physical therapist, Jen, is great. She is very understanding and patient. She exudes empathy and always makes sure that I am okay. That being said, I’m pretty sure PT is actually physical torture in disguise.

People wonder and often ask me about how one does PT on the Pelvic Floor Muscles (PFM). Their first question is usually something like you do kegels right? The answer is definitely not. Kegels are the opposite of what we want to do. Although there might be a time and place for them in PT, now is not that time.

Pelvic floor muscles are inside of us, so needless to say, a lot of the work in PT is done internally. Not every physical therapist is trained to do this. This is a specialty that can be difficult to find and often insurance doesn’t cover it. Not every Joe Schmo physical therapist is qualified to do this job and if they say they are…run far far away. We need proof of that…because these are our personal bits. My lady bits are not to be trifled with by someone who wasn’t properly trained to trifle with them.

And yes… it hurts. A lot. There was one moment that I can recall so vividly when my physical therapist was putting pressure on a trigger point inside of my on a pelvic floor muscle and it hurt so badly I almost threw up. It’s not like that every time, but it’s always painful…just like PT tends to be. 

Generally, after PT, I leave in excruciating pain…I can barely walk for a few days up to a week after. I tend to flare up for a least a couple of days afterward too. But I always remind myself that it will help my pain in the long run. And I have seen improvements since I have been going…it usually one step forward and two steps back. And I also remind myself that I have to get worse before I get better. The pain that is caused during PT is temporary and over time will benefit my body immensely. 

I also have at home PT exercises to do. I have a walking program which is “simple” enough …where I have to purposefully walk to improve my walking daily because I struggle to walk any distance these days. 

And recently she added the bridge and clam shell exercises. The bridge is when you lay on your back with knees bent and lift your body up while your hands are pressed on the ground. The clam shell, or clam jam as I prefer to call it, is where you lay on your side with your legs bent with one leg on top of the other and lift the top leg up which gives the look of a clam opening. The clam jam is one that I struggle with the most right now because I am very tight in the hip and thigh area.

There used to be a time when I did yoga daily and I was so ridiculously flexible…it wasn’t even that long ago. It’s like out of now where I am no long able to do yoga like I used to. I can barely do a clam jam, let alone walk a given distance.

My last home exercise uses a tool called a Therawand, pictured below.

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Image- Therawand, a long 8 inch curved PT tool, similar to a dildo or G-spot stimulator, on a white board. Arrow point to tapered end says “tapered end for insertion/thinner diameter” Arrow pointing to opposite end “use as handle or insert”

As you can see it looks like a dildo or G-spot stimulator, but I promise you that there is no stimulating going on when the Therawand is in use…TMI? Too bad. This whole blog is TMI in a way. I want people to understand what people with PFD/IC and other similar chronic illnesses go through and the only way to do that is to share my story.

The Therawand is used to press on trigger points to relieve tensed muscles which is the same thing my physical therapist does when I go see her. The difference is I have control over this and since I am at home I tend to be in a more relaxed setting…so in theory,  it should hurt less. Although it usually doesn’t hurt less.

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Image- Bottle of lube called Aloe Cadabra Natural Aloe

The Therawand does not get used alone, that would hurt way too much… more than it already does. Lubrication is required. And because I am very sensitive I am very careful about the lube I use. For this, I chose Aloe Cadabra which is a natural and organic aloe lubrication. I just use the regular “unflavored” kind but they do have different flavors or scents.

PT is a special kind of hell that has the ability to hurt so good and just plain freaking hurt until the point of wanting to vomit. But if you’ve ever had PT then you know that it takes awhile to see the progress and pelvic floor therapy is no different.

After my hellish week last week, I went to PT this past Monday and told Jen about said hellish week. And she was like wow okay that is rough. So we did minimal internal work because of that darn speculum from when I was at the gynecologist, which really did a number on me that flared me up something fierce. She decided to work on my head some after that because I told her about my allergic reaction monster migraine from hell.

She squished my head on both sides and it was oddly relieving. And then she squished my head on my forehead and the back of my head…and again…oddly relieving. She did all kinds of PT things that involved pressing on my jaw, head, and neck. And while it hurt it also felt good like it was relieving something. My entire head had been tensed up and had all kinds of trigger points from that monster migraine. And she did PT things that left me feeling very weird and but also reduce the tension in my head as well…which was good.

So what am I getting at? Well… that’s hard to say but I think my point is that PT sucks. And I genuinely just want people to know and understand what goes on during PT for IC/PFD…because it’s not all kegels and dildos. It’s personal, private and even embarrassing for many people to talk about. 

It is not fun. And I’ve seen people talking in the IC support groups, saying stuff like their partners don’t understand why they go to PT or what they do in PT. Or even that their partner accused them of going to PT to “just get off”…which is not only mean and just a jack ass thing to say…but it’s also categorically false. There is nothing fun about pelvic floor therapy. It’s painful and can be traumatic.

PT isn’t for everyone but for those of us who need it…it helps tremendously. Having a chronic illness is never easy. And putting ourselves knowingly and willingly in more pain each week never feels good…but we do what we must and we just tough it out with the hope that one day we will find the relief that we have long been seeking. 

 

rules-of-physical-therapy
Image- Rules of Physical therapy Never say you can’t…because you’ll do it anyways -Never say “it’s easy” because we’ll just make it hard -Never say I want to go home, because you’ll just stay longer -Never lose count because you’ll start at one again -Never complain because we never listen -Never argue because you’ll never win -Never scream or cry because it only encourages us -Never look like you’re enjoying it because we’ll put a stop to it -Never hold your breath because if you pass out we have to fill out paperwork -Never lie or cheat because we know the truth and you’ll live to regret it.
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Taking back my life.

 

[Image description: If you change nothing, nothing will change]

To start I had physical therapy this morning with Dr. Jen. After the last session before the holidays which left me crippled and barely able to walk and flared up in pain beyond belief for almost two weeks, I was actually starting to feel a little bit of an improvement. Well…that’s the point of PT right? Just the last couple of days I have noticed less straining to pee. 

So today when I saw Dr. Jen, I told her what happened. And she said maybe we should take it easy. But I told her I’d rather push a bit harder now because I still have off of school for two weeks and I want to see more improvement by then. So we pushed and she said I handled a lot more pain today, much better than last time. Although she was doing some manual trigger points internally and at one point she pressed a muscle and it hurt so badly, I almost threw up. Wow, it was just so intensely painful.

On a less painful note, I recently got a book called The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Written by Patricia A. Fennell, MSW, LCSW-R. 

Fennell discusses the four phases of a chronic illness (pg 37-38). It reminds me of the phases of grief in a way (Denial, Anger, Bargaining, Depression, and Acceptance) Although outside of these phases there is a huge grief cycle that people with chronic illnesses go through. And I am no different. Here are the phases that Fennell describes:


Phase one: Crisis 

This phase is characterized by crisis and chaos. And seeking relief of pain and hurt. 

Task: you and your support system are to deal with the immediate hurts or traumas of your new illness


Phase two: Stabilization

This is a plateau of symptoms and they become more familiar. You start to think that maybe you’re getting a little better but still continue to experience chaos. You keep trying to behave as you did before you got sick and this attempt frequently leads to relapses. These are very upsetting and feel like a personal failure.  

Task: Begin to stabilize and restructure your life patterns and perceptions

Phase three: Resolution

By this point, you have learned how your illness behaves and how the world responds to it. You’ve also finally learned that you can’t be the person that you used to be before you got ill. This can be a devastating perception. 

Task: Develop a new, authentic self and to begin to locate a personally meaningful philosophy to live by. 

Phase four: Integration

You are now able to integrate part of your old self from before the illness with the person you are now. 

Task: Continue to find ways to express your new “personal best” to reintegrate or form new supportive networks of family and friends. In total integration, you arrive at a new, whole, complete life, of which illness is only one part, even if it is an important part. 


I think I am somewhere between phases two and three. I’m just starting to realize that I can’t behave the same way I did before IC. I am in the process of learning that I can’t be the person that I used to be before IC.  I don’t think that the phases are static, they seem fluid and it would be easy to take one step forward and then two steps back.

Working with DeafBlind people was my entire reason for being. It was my passion, my motivation and my goal for years. I worked for two different organizations part-time as a freelance Support Service Provider with DeafBlind clients. And I volunteered on the Board of a DeafBlind organization for 3 years called Metro Washington Association of the DeafBlind (MWADB). These jobs were everything to me. I went to Gallaudet University (the only Deaf liberal arts university in the world) and got my BA in Deaf Studies with a focus on DeafBlind. I always said the Deaf Community is my home but the DeafBlind Community is my passion. And it gave me drive. But that changed. My health changed that. I am now in grad school to be a social worker, and I am hoping to specialize in working with DeafBlind people. But the issue is that working with DeafBlind people is all-encompassing. Even though there are such a variety of communication methods, working with DeafBlind people is a give it all kind of job. It’s mentally, emotionally and physically exhausting and that was one reason I always found it so rewarding. However, my body and my health disagree. My body can no longer handle to constant tactile signing or guiding people. My body can no longer handle how mentally exhausting it is to describe the environment to the best of my ability. 

When I could no longer give 110%, I knew I could no longer do these jobs. I had to resign…this just happened in the last week. And it has shattered my heart into thousands of pieces. I have met such amazing people in the DeafBlind community. And of course, I will still talk to them. But I was planning the long game in the DeafBlind community. That was my entire future. And now I am unsure if that is a reasonable goal. I have to take care of myself first. #selfcare

So yes…I am trying to take care of myself. I promise. I am solely focusing on grad school when this next semester starts. 

 

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[image description: A picture of a cartoon bunny saying “Your health and happiness come first. Never feel guilty for taking care of yourself.”]