Tuesday, May 24, 2016

Letting in a Caregiver on Your Chronic Illness Journey

I was a sophomore in college when I met my husband, T. I mentioned on our first date that I had “this arthritis thing” that made some days rough, but left it at that.

Us circa 2007

As time went on, T expressed more curiosity about my illness. I did not know much about it either, so I took to the Internet. First, I started blogging so that I could help T see what kinds of issues I was dealing with without talking directly to him. I didn’t have the best emotional support growing up so discussing a chronic illness was scary. 

Describing my arthritis through writing removed some of the emotion from the situation. It also allowed T and me to develop ways to research medications and other issues on our own, but to then also come together to discuss once we both had an understanding of the issue at hand.

I refused to think of T as a caregiver for a long time. Even now, I hesitate. There can be such a negative connotation to that word. It implies some loss of dignity that doesn’t need to be there. Even if my husband occasionally has to help me walk to the bathroom or wash my hair, that doesn’t mean I am worth any less than him – and he’s not worth less than me. My husband has helped me understand diagnoses, find medications, take care of myself and accomplish my dreams. He takes on so much more at home when I cannot function as well. He pushes me to take care of myself and helps me get better care from my healthcare team.

If there is a better definition for a caregiver, I don’t know it.

Us at Crater Lake in 2010

Our relationship is unique in the fact that T has health issues of his own. We routinely find ourselves on a see-saw, switching from more balanced in health to ups and downs. The fact that we figured out how to talk about my health issues has helped us work on his as well.

It took a long time and a lot of work for both of us to get to the point where we started understanding my physical limits. For a long time, the biggest issue was that I wasn’t communicating my needs or pain to T. Without doing that, it made it hard to recall issues to bring up at medical appointments and more. I had to break the wall I had built initially so I wouldn’t scare him away, and it was the hardest thing I’ve ever had to do. There is a vulnerability inherent in sharing your intimate life with someone in such a way. 

It’s easy to celebrate the successes with others, but harder to include them in the struggles.

The biggest turning point happened when I was still in college. We were driving somewhere and listening to 10,000 Maniacs. T searched for a song called Trouble Me and asked me to listen to it, saying that it reminded him of me:

Trouble, trouble me
Disturb me with all your cares and your worries
Trouble me
On the days when you feel spent
Why let your shoulders bend underneath this burden
When my back is sturdy and strong?
Trouble me 

I lost it and started crying. I was so used to having to cover up my illness issues to make other people feel comfortable.

Us at our wedding in August 2014

I know that I am incredibly fortunate to have such a supportive and helpful husband. T supports me wholly in managing my disease and treatments. He has a better memory than I do about my pain. We sit down before most rheumatologist appointments and discuss what has happened since my last communication with the clinic. We routinely look at medicine changes. 

Heck, we do that with just about every healthcare provider I see. I always text him after appointments with the key points and then we discuss once we’re both at home. This helps me to remember the important things.

This post is especially timely as I’m wrapping up my last two weeks of working in my current position. I currently do not have another job lined up. I’m nervous, but also excited. See, leaving my job was T’s idea. I’ve been in a flare-up of my fibromyalgia and missing at least one day of work every two weeks if not every week. The strain of my illness activity along with immense stress at work has taken a toll on both my physical and mental health. 

It was hurting me to keep pushing and it was hurting him to watch the cyclone of pain continuing to grow.

If I wasn’t sharing so much with him and allowing him to carry some of the weight of my illnesses, this would not have come up. By allowing him to share fully and wholly in my life, we’ve bettered ourselves as people and our relationship. 

Another amazing wedding picture

We certainly laugh a lot more.

I have learned that it is okay to ask for help and be unable to do things instead of stubbornly trying and winding up in pain. 

I still choose how much information I share with him. Some days, it is because I know he is under stress or dealing with his own illness issues. Other days, it is because I don’t want to admit to myself how I am truly feeling. As long as we are both involved in what affects our quality of life as a couple, we do well. 

This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.

Check out the Joint Decisions Facebook page to connect with others in the online RA community, and visit JointDecisions.com for RA resources and tools.

Sunday, May 22, 2016

Spiritual Self-Care

I was introduced to Self Care Catalysts when I attended ePharma back in March. I really had a great time speaking with the SCC team and am extremely happy to say that I will be participating in their Self Care Mvmt at the end of June in Toronto! 

O, Canada!

There is some great buzz out there already on Twitter using the tag #selfcaremvmt. The movement centers around how important it is to care for ourselves as patients with chronic illnesses and to celebrate the moments where we have been able to care for ourselves.

For the next few weeks, I'll be posting on some self-care topics as a part of the lead up to this awesome event - and my foray into world travel. 

It is important to mention that I am being compensated for these blog posts and my involvement in the Self Care Mvmt. However, all thoughts below are my own and have not been influenced by said compensation.

Today's topic is spiritual self-care.

The word 'spiritual' often leads us to conjure up ideas of someone interested in religion, but it means so much more. I personally am not a religious person.

To me, spiritual self-care is something that allows me to recharge my batteries, help me unwind, and where I can simply exist. There are a few things that bring me to that place - most notably, exploring and spending time with loved ones. 

Many of my loved ones aren't physically close and, to be honest, being in nature in Wisconsin is really hit or miss.

I am leaving my job at the end of this week because it will allow me the ability to take better care of myself. This is something I will touch on in the next few weeks in more detail, but it plays a role in my spiritual self-care as well. Without being tied down to my current job, I will have more opportunity to be in the community and outside on the few good days we get here.

It also allows me the ability to travel much more, something I find my heart glows from.

It's the thing I love most of all.

Traveling and exploring can take a physical toll if I am not careful. My multiple chronic illnesses, especially my systemic juvenile idiopathic arthritis and fibromyalgia, don't do as well with certain types of travel. I really need a lot of time when flying somewhere to unwind after the trip or, sometimes, after a flight.

Traveling, for me, helps me to work more on staying in the moment, being present. I am no longer thinking about my history of abuse or the toll my illnesses may take. The only worries and anxieties I encounter are related to engaging in something fun.

I meditate, though not enough lately. I use an app called Buddhify, which I know I've discussed so much before, but always deserves mentioning. The Health Storylines app, from Self Care Catalysts, has great guided meditation as well as an area for social support.

Part of my goal with the time I am taking off of work will be to set a schedule for myself that includes physical and spiritual self-care methods so you'll have to stay tuned to see how that goes!

I anticipate that this move will increase my quality of life, though.

What are some things that you do that could be considered spiritual self-care? Are there any apps that you utilize to help you do so?

Saturday, May 21, 2016

Mental Clutter

Spend a little time clearing your mental clutter by writing down everything that's on your mind so that you can release your worries and be more present in conversations today.
Do you feel that your worries have less of a grip on you now that you've taken some time to purge them in this way?
I am worried about leaving my job. I know that I am making the right choice, but I worry still. 

Will I be able to stick to this schedule I have outlined in my mind that involves visiting the gym daily in order to regain my strength and to work on becoming healthier?

Will I be able to push myself enough to get Chronic Sex as a project and potential non-profit off the ground?

At the very least, will I be able to take care of keeping our apartment clean and general housewife-type stuff?

Is this the beginning of the end of real work for me? When will I be bad enough off that I have to look at disability? How does this affect our potential future plans to get a house?

I worry about how this will impact my place of work. I try to act like I don't, but I do. This is the main reason why I have had any second thoughts I have encountered. They're very small, but still there.

Will I be able to pull myself away from taking a break to start all this? Will I really be able to take a break?

I doubt it, but I am going to try.

I'm burnt out. I'm tired. I'm ready to take the next step, to stop working for someone else and do work that is desperately needed.

Maybe it'll help me figure out how to eat again. Even with this prednisone burst, I'm not hungry and that frankly scares me.


I do feel better after writing this out. I enjoy activities like this which allow us to really examine what we're doing and worrying about.

I think it's natural here for me to have concerns. After all, I'm looking at starting like an official organization? It's a little daunting.