Why self-care is my resolution for the new year

 

[Image description: It is not selfish to refill your own cup, so that you can pour into others. It’s not just a luxury. It is essential.]

There is a trend going around the world wide interwebs of selecting a word to represent your new year resolution. I like it. It’s simple and poignant.

That being said, the word I have chosen is: self-care

self-care

Part of my self-care for the year was starting this blog. This blog is a therapeutic outlet for me to express myself. How else will I engage in self-care?

  • Take time for myself
  • Ask for my needs to be met
  • Rest
  • Play
  • Eat well/ eat to match my needs
  • Enjoy and love my cats (Blinken, Stanley, Marzipan, and Ziggy)
  • Accept help from others
  • Meditate
  • Walk (when possible and I’m not hurting too much)
  • Take a bath with Epsom salt
  • Read a book
  • Get enough sleep

Self-care is important to me as a chronically ill person because I did not get to this point by caring for myself. I do believe that chronic illness impacts people who don’t take care of themselves. Chronic illness forces us to slow down and focus on self-care…which is both beautiful and unfair at the same time.

Having IC and migraines really forces me to take care of myself to an extent. But I can easily half-ass it which is why my health degraded so badly in recent months. I can no longer allow myself to continue on this path of self-harm. Not when I know it just truly hurts me further; it exacerbates my IC and my migraines. I can no longer tolerate it. Nobody should have to tolerate their health going downhill when it can be taken care of by self-care.

People who have chronic illnesses must take care of themselves. There are no if’s, and’s, or but’s about it. Chronic illnesses are energy-depleting and life-consuming. Self-care helps us renew our energy and heal our bodies. When we give our bodies time to heal it gives us that extra bit of energy to do the things we want to do in our lives. For me, that is going to grad school, doing school work, seeing friends and co-parenting with my boyfriend. All of these things are really important to me, but when I don’t take care of myself first I take away my ability to do the things I want to do in my life.

Is self-care selfish?

Unfortunately, our society frowns upon self-care. Our culture is all about beauty, fashion and needing more stuff but just mention needing some time to yourself for self-care and people act like you are being selfish and greedy. In a way beauty is a form of self-care, isn’t it? For the people who go to spas or do at home face masks, manicures and so on. All of that is a form of self-care. But I guess because it has a different intention behind it… it means something different. The intention being that I need to look my best because that is what society expects from me at all times. But if I do spa treatments, not to look good, but to take care of myself… that’s selfish. That seems quite backward.

I don’t have time to spend hours and hours focusing on my beauty routine. The best I can do is spend some time focusing on my self-care routine and hope it will help my chronic illnesses. I will not make excuses for needing self-care. Everyone needs some self-care at some point in their lives. That’s not selfish… that’s life.

When we are on an airplane and they tell us what to do in case of an emergency, whose oxygen mask do we put on first? Ours or our children? Ours. Why? Because if we go to put our children’s on first we could pass out from lack of oxygen, putting both ourselves and our children at risk. This might be an extreme example, but this is what self-care is. We take care of ourselves first so that we can better take care of others.

How will I incorporate this one word throughout my entire year?

This one word is not just a word anymore… it’s an important theme in my life. I will make it a tangible thing that is so important to me that I can’t live without it. I have written it in my day planner. Yes, I have a paper day planner…I am a grad student, we need to write stuff down…plus I’m old-fashioned. I wrote self-care on every page of my day planner to remind myself what I should be doing every day no matter what is happening. I have goals set…like create a blog, take care of myself, and all the stuff listed above. I am holding myself accountable by having people in my life know that I am supposed to be actively self-caring.

image-bluegreen-heart-with-hand-written-text-self-care-is-an-act-of-self-love

What’s your word? How will you incorporate it in your year?

Advertisements

Why I am struggling to recognize myself

 

[Image description: a warped picture of Rachel Bob’s face]

I am at a place in my life where I am really struggling to recognize myself. I am giving up things that I love left and right because of my chronic illnesses. And it feels like I am losing myself, my identity. The fact is that chronic illness is more than just physical ailments, although there is plenty of that.

There’s a book, which can be found on Amazon, called Good Days, Bad Days: The Self and Chronic Illness in Time by Dr. Kathy Charamaz. She explains that there’s a very narrow view of suffering that tends to be defined as physical symptoms which only ignores or minimizes the broader significance of suffering. She says:

The loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally new ones.

Dr. Charmaz also explains that all of the experiences and meanings upon which the chronically ill person had built former positive self-images are no longer available.

So in my situation, I have spent years building a foundation, reputation, and life working with, advocating for and being a part of the DeafBlind community. But now that my health has progressed to the point where I can no longer do that I feel lost. The identity I built and cultivated within the DeafBlind community was/is a huge part of who I am because it is difficult to talk about myself without talking about my passion for working with the DeafBlind community. Being that most of what I did was directly related; my jobs, my volunteer work, my BA focus and my MSW focus. That carefully cultivated life I watched grow and bloom around me… has come crashing down and now I have no idea what’s left.

It’s not to say that I can’t be me without the DeafBlind community. I can and I will get through this. And yes I have other interests that I can and will pursue. But my goal and passion have been this for so long that to no longer have that be my goal feels wrong. It’s a betrayal to myself and to the community of people who I love.

My loss of self-started about one and half years into my diagnosis of IC but Dr. Charmaz says loss of self can start even earlier – sometimes even before a diagnosis is made and it will continue to grow from there.

Pre-diagnosis: Doctors can easily discredit our definitions of self when we are seeking help for early symptoms. Without a diagnosis, sometimes doctors view patients with undiagnosed illness as neurotics whose symptoms are either nonexistent or psychosomatic,

Beginning of illness: At first, family and friends demonstrate interest, attentiveness, and assistance, but as time goes on involvement tends to dwindle.

-Worry about burdening others:  Especially your significant other.

-Unpredictability: Having a chronic illness is unpredictable. There are good days and bad days. This can disrupt their lives far beyond physical pain, to the point of quitting work, limiting socialization or even avoiding activity.

-Limitation of life: People with chronic illness might be forced into limiting normal activities to protect their health. This can have a big impact on self-image.

-All Consuming focus: Chronic illness can overtake one’s identity. Illness becomes the focus of one’s life as treatment, living with constant discomfort, medical appointments, and issues with daily activities take over.

What it comes down to is that if you have a chronic illness and you have to give things up that you love… you are not alone. I am right there with you. Thousands upon thousands of other people are standing right there next to you. And we need to recognize this so that when we feel lost we can say that and not feel like we are morons just because we lost our identity. We are more than just one identity… but the feeling of not recognizing yourself is valid.

While reading through information in preparation for this blog I came across an article in Social Work Today called Grieving Chronic Illness and Injury – Infinite Losses. Which is relevant for two reasons, 1) I have chronic illness 2) I’m in grad school to be a social worker. But I think it should resonate with many people because it really hits the points that I’m emphasizing in this post that grieving through chronic illness is okay. It is something that people (i.e. Social workers) are trained to help you cope with.

Isn’t it kind of a relief to know that if social workers are being trained that means it must be somewhat normal? well…somewhat. Either way, the grief might never end. It might just continue on but the best thing that I can do (and you can do) is continue on and try to find the most meaningful life you can live.

 

Food as medicine

 

[Image description- blue and white plate with spaghetti and homemade meatballs with a side of zucchni] 

After months of debilitating pain and frantic searches for meds of all sort, I have decided to do myself a solid and change my diet completely. I will be cutting out processed foods, sugars, carbs. My body is literally screaming for help at the top of it’s lungs and if I didn’t listen to it… not only would I be making myself miserable, I would have nobody to blame but myself for my own misery and pain.


After a lot of time in the IC Support group online, it seems that the people who have the most success in remission are people who drastically overhaul their diets. And use food as medicine. Approaching food as medicine and looking at the body in a holistic way makes sense for people with a chronic illness, like IC. 

After a lot of time in the IC Support group online, it seems that the people who have the most success in remission are people who drastically overhaul their diets. And use food as medicine. Approaching food as medicine and looking at the body in a holistic way makes sense for people with a chronic illness, like IC. Very soon I will be drastically overhauling my diet; cutting out carbs, sugar and processed foods. I never thought I would get to this point. I never thought I could or would. But I never thought I would give up orange juice or spaghetti sauce but I did because of my IC. And the pain continues. So the question becomes…what wouldn’t I do to make it stop? Maybe those foods don’t harm me, but I suspect they do. And yes they are delicious, but is it worth the pain they cause? Some people think so.

I understand that we have backward values here in America. We worship the carb, comfort food, and the fast meal. But we are killing ourselves, our children and future generations as painfully as possible by doing this. Chronic conditions are cropping up in droves among 20-30 somethings. Is it a coincidence? It could be. But it’s unlikely. We are products of the DNA we carry, what happens to us in the womb and of our generation. All of these factors are starting to add up and create chronic illnesses en masse where there was once none.

And it really doesn’t help that the medical community looks at us as body parts.

It has often been my experience with doctors, that they want to focus on the part of you that hurts. Where is the injury? IC is in the bladder; therefore we treat the bladder. But hey, here’s a crazy thought, I am more than my bladder. I could just be a giant bladder with long red hair… sometimes I definitely feel like that but in reality, I am a whole person. And IC needs to be treated that way, holistically.

Here’s a prime example of the medical community looking at me and just seeing a giant walking talking bladder. When I was first diagnosed with IC, I immediately began researching food to eat. I found that celery is extremely beneficial to people with IC so I made it a habit it to put it into my food every single day. So what can this celery do exactly? It can lower inflammation, reduces uric acid in the urinary tract (which is good to prevent UTIs and good for the burning while peeing that IC warrior’s experience). 

So… Celery! Who knew? Not my doctor, that’s who. I went to her bi-monthly in the beginning and I went to see her and told her this information. And she told me she never heard that before. I was flabbergasted. I realize that the medical community doesn’t care to look at the body as a whole and doesn’t teach food as medicine, but in all her years as a urologist working with IC patients…nobody ever told her that? or she never went a did a little extra research on her own??
When you, or a loved one, have IC, Migraines or other chronic illnesses, it is so important to do the research. Doctors serve a role and they do the job to the best of their ability. IC is a systemic issue that needs to be looked at and treated holistically. 

 

Image result for celery joke
[Image description: Celery is 95% water and 100%, not pizza. Below the wording is a logo from NBC that says The More you know floating on a shooting star]

 

 

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. 

 

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

 

 

 


Having a support system

 

[Image description: from left to right: Becca, Rachel, Aaron and Shelby standing next to each other and smiling]
A strong support system is crucial for people with chronic illness to survive and thrive. A support system can include family, friends, support group, doctors, other medical or holistic professionals. My support system is coming together nicely. 

 

The players:

Rachel – The One with IC and more

Debbie – The Mother

Aaron – The Boyfriend

Becca – The Thoughtful One

Shelby – The Cautious Optimist

Christine – The No Funny Business-er

Blinken – The Fluffy Cat

Stanley – The Ninja Cat

Marzipan – The Biggest Little Baby Cat

Ziggy – The Not-So-Nice Cat

Now that we have met the players and their roles. It’s important to understand how all of them will work on a macro and micro level. I know my relationship with each of these people as individuals so on a micro level it’s easy. But on a macro level, the system as a whole should work together fluidly. 

It’s important to find people who you trust, will be there to support you, have your best interest in mind and can be part of a team effort. This can be a difficult task to find a group of people. And for me, as an introvert, I don’t love the idea of having a group of people discussing my well being. But I need a solid plan and a strong support system. Each person

Each person in the support system plays their own role. One or two of them might be better at emotional support. While one might be better at providing support through actions, like someone who comes to see you once a week and cooks you dinner. They are showing you they care about you by being there for you regularly, even if they might not be the best with emotional support. And that’s okay if you have a strong enough support system then it’s good to have a variety of people who can provide different kinds of support. 

I will be planning a huge lifestyle diet change coming up within the next week or so. On Saturday, January 7th, my support system will have a round table discussion of what my diet will look like so that we are all on the same page. So I can go hang out with Becca and she already knows that I can’t eat tomatoes because of my IC and there’s a good chance I’ll cut out sugar and processed foods and so on. Everyone who is in my life already knowing will make it easier for me to follow through and be held accountable for my actions. 

 

Image result for creating a support system quotes
[Image description: Real friends support you no matter what. If you want to be a tuna fish then it’s my job to encourage you to be the best damn tuna fish that you can be.]

 

New year… New you??

 

[Image description: People treat New Year’s like some sort of life-changing event. If your life sucked last year, it’s probably going to still suck tomorrow.]
It’s a new year already. 2017. Wow. How does that even happen? The whole year flew by. 

 

Almost two years ago this March I was diagnosed with IC. 

One year ago this past December I met my boyfriend, Aaron. And on January 14th will be our one year anniversary, which is crazy because it definitely feels like 6 years. 

I am almost 31 years old; on January 18th. This is not where I expected to be at this point in my life. I’m not exactly sure where I expected to be. But I promise you it did not involve me starting a blog chronicling my journey with chronic illness. But here I am. I have given up so much in the last few months to be right here in this exact moment.  These chronic illnesses have kicked me until I was down and then pounced on me some more. I’d just like to take a moment and image what that would look like. I’m picturing a little brain (representing migraines) and a little bladder just jumping up and down on top of me. 

Anyways…back to the point, I never thought this would be me. Being forced to give up the goal and passion of mine that I have been working towards for years because of my health. It is heart-wrenching. Whenever I think about it I can’t help but cry. I will get into this more later…it’s still a very raw topic for me.

The only positive is that I am still in graduate school for Social Work and I have decided I want to add public health as a specialty so that I can work with and advocate for people who have chronic illnesses. 

 

new year? more like same shit, different year
[Image description: A Cartoon image of Batman looking like he is thinking and words overlaid that says New year…? More like..Same shit, different year]

On coming out

 

[Image description: Close up of an ornate key in an lock with the door cracked open]

I was diagnosed with IC in March 2015, so almost 2 years ago. And I always thought it would just be easier to not tell people. The less people that knew the better. If people knew, it would just make things more complicated. It would create more questions. People might question me. They might question if I am actually in pain or if I actually have this disease/condition/illness/whatever. There’s the dreaded, “But you don’t look sick”. That every chronically ill person loathes.

And what if they looked at me differently after I told them? What if it makes me appear weak? Or like I can’t handle the stress of whatever comes my way?

I didn’t want to have to explain it. Maybe I was embarrassed too. Who wants to talk about their bladder and lady parts or [insert body part here] with their family? Or friends? or strangers? or whoever? It’s personal. It’s uncomfortable.

But guess what? That’s my life. My life revolves around my bladder now. I have slowly started coming out and telling more people. It started last year… one year ago during Chanukah when I was kind of forced into telling my Aunt Ro. And I am so glad I did. It is one of the best things that has happened to me since I was diagnosed. And one day I hope she reads this and knows that I feel so fortunate having her support me through this. She works at a urologist’s office, so she knows what goes on with people who have IC. When she found out I have IC she started checking in on me. Which might seem like nothing to some people, but to someone with a chronic illness… it means a lot.

People who have chronic illness often feel isolated and alone. I am no different. I have a wonderful support system. My amazing boyfriend, Aaron, who is there for me every day. My friends Becca, Shelby, Christine, and Nai. And, of course, my mom. And a few other people. I am so lucky to be supported and loved. But I still feel alone in my pain. Because as much as these people love and support me, they can’t feel my pain and they can’t understand what I am going through. I joined a support group online early on. And I have become very active in the group recently. There is comfort in knowing that I am not alone.

But back to my point. Over the last year, I have started telling more people. I told 2 out of 3 of my teachers this past semester. And I will tell all my teachers this upcoming semester. I’ve told a couple of my cousins about it. And last night at my family Chanukah party I told my Great Aunt and my Uncle. It feels like a huge weight is being lifted off of me every time I tell someone. Yea…it’s uncomfortable. But that’s my life. That is life. Why should I struggle through this alone when I have people who care about me who are willing to help me carry the load?

And like many chronically ill people, I do worry that they will get tired of me and start thinking of me as a burden. That is a frequent worry of mine. But I have to trust that these people love and support me and will always do so.

Coming out to friends and family as chronically ill is never easy. I waited until I was ready to tell people and that’s okay. If I never told anyone…that would be okay too. But feeling less burdened because other people know what I am going through and can help me through it… that’s a good feeling too.

 

Coming out as anything is never easy, and in the case of people with invisible chronic illness,.png
[Image description: coming out as anything is never easy. and in the case of people with invisible chronic illness, there comes a time when if you don’t tell people it starts to negatively impact your health]