Making Relationships a Priority When I’m Tired and Everything is Important

Taking a break to watch the salmon swimming
while on a bike ride with friends

I didn’t worry about needing to consider my social life as it related to my health before I was diagnosed with MS.  The downside was I also pushed myself beyond my limits and consequently averaged two exacerbations per year. Unknowingly I was adding stress to my body and accelerating my MS disease activity.

Spending time with friends and going on adventures were something I believed I should be able to do, and I didn’t see fatigue as a symptom of something larger and more serious. I still believe I should be able to spend time with friends and experience adventures, but I now weigh and budget the energy it takes with the joy I’ll experience.

The Harvard Study of Adult Development tracked men for 75 years (and counting) and showed that people with good quality relationships with family, friends and community are not just happier than people without good relationships, they are also physically healthier. They experience less memory loss, pain doesn’t affect their mood as much, and they’re generally more resilient.  

As such, I see my relationships as imperative to my future health.  Investing time in my social relationships is not optional.  MS symptoms like fatigue can make it more difficult to build and maintain those social connections.  When work, bills, housekeeping and everyday tasks take more energy than a person has, it’s easy to turn down invitations to social gatherings and become isolated. 

Rethinking beliefs: 

I grew up believing that school came first and only after you get all your work done can you get the reward of playing with friends. As an adult with a chronic condition that affects my energy level, I’ve learned that this approach feels like constant punishment. It also neglects the human need to have more in life than work. I’ll never have enough energy to do enough of the good stuff I want to do after all the work is done.  To compensate, I pace myself on things I need to do, reduce the effort it takes to do them, and save enough energy for the good stuff in life. Among the good things are spending time connecting with other people.

I’ve heard the saying that to be rich, a person can make more or want less. I translate that as to be more energetic, I can make more energy or use less energy. I can do things that recharge my energy level, and I can conserve my energy by reducing the effort it takes to do things.

I boost my energy by exercising, eating nutritious food, being organized, pacing myself and resting. I’ll conserve my energy by streamlining, prioritizing, and delaying or delegating tasks. Doing these things allows me to feel confident that I’m doing the best I can, and it allows me to feel justified in placing a high priority on fun and relationships.

Prioritizing Joy and Relationships:

A terrific method to maximize joy with limited energy is to double up on the benefits by combining things that need to be done with social interaction. I’ll go for a walk with a friend to combine exercise, social engagement, time outside getting fresh air, and time not eating or doing other things I should limit.

If I need to do some shopping, I might go with a friend who can drive and help me find what I need. I make sure to allow time to rest before, during, and after the excursion. It often changes the experience from one that can be draining to one that is invigorating and recharging.

I’ll reduce the effort it takes to participate in social events.  I’ll shorten the length of time I’ll stay, but I’ll still show up. Sometimes I choose events that are easier to do and less physically taxing.  Other times I’ll choose events that may require a lot of energy but are rewarding and worth the effort.  If I love it, I make sure I streamline and reduce other activities so that I can have enough energy to do the one that’s a big deal.

The level of effort it takes to engage socially vastly ranges. I can choose how I want to connect at any time based on my level of energy and the relationship I want to maintain:

• Text
• Write an email
• Write a letter or send a card
• Call them on the phone
• Skype
• Meet for coffee or lunch
• Go to a movie together
• Exercise with a buddy: Go for a walk, hike, bike ride, swim, etc.
• Go to an event: Attend a concert, museum, or dance
• Plan an adventure 
• Take a trip, visit family, explore new places with someone

It also helps to explain to the people in your life how MS might limit your activities and that you’ll do your best to stay connected. While talking on the phone with my sister one night, we were having a very engaging and fun conversation when I hit the metaphorical wall.  I interrupted her, “I’m sorry, but I need to go now so I can go do nothing.”  We laughed at the time, and I still crack up that I could say that to her without being rude and without her feelings getting hurt.  It’s important and empowering to recognize when to push myself to be socially engaged and when to quit while I’m ahead.

Coping With An MS Diagnosis And What Helped Me

Everything can feel urgent when you’ve just been diagnosed with an incurable disease. Remember that you’ve likely had MS for years. You may have increased symptoms and be in the midst of an exacerbation, and you don’t know if your symptoms will dissipate or be your new reality. My advice is to try to relax. I know, it’s easier said than done.

I remember the pervasive fear I had of not knowing if what I was doing was unknowingly worsening my MS. Wondering how I was going to learn to live with MS and what my future now held overwhelmed me. The lack of control over my body rattled me. It felt like I’d been sucker punched.  While I looked the same on the outside, my waking thoughts were now consumed with, “I have MS.”

Coping with an MS diagnosis is a lonely experience, and I can’t think of any other life lesson that prepares you for it. When I was diagnosed with MS, I’d already lived through and recovered from a 110 mile per hour impact car accident, I’d lost my mother in a plane accident, I’d experienced and healed from family drama and trauma that affected me deeply.  And yet, being diagnosed with MS required me to pursue healing in a new way.  The threat was within me, and it wasn’t a one-time event.  This was something that would continue and likely progress. I lost all sense of control and the stability of feeling like I could trust my body. My mantra became, “I don’t know how I’ll learn to live with this, but it will happen.”

My path to making sense of things and being at ease with them will differ from others. All I can share is what I see in hindsight helped me and what I use today to maintain my health and sanity.

• If you’re able to, find a counselor you like and see them regularly until you feel like you’ve found some stability.  My thought process at the time of diagnosis was that I wanted to have a counselor on deck that knew me and would be available if I needed them in the future. The person I saw validated my feelings, allowed me to vent on things that might have injured relationships if shared with the people involved, and helped me cope with a huge life shift.  I can’t stress enough that the counselor needs to be a person you trust and feel comfortable with.  Don’t push it.  If it doesn’t feel right, find someone else.
• Look to people with attitudes about adversity that inspire you. For me, two exceptional people who gave me hope were Kris Carr and Cami Walker. Kris Carr has successfully lived with Stage IV liver cancer, used diet and attitude to keep progression at bay, and was living a full, productive life. Cami Walker wrote the book, “29 Gifts,” and describes how she found a way to accept MS and see her value in life through giving.
• Non-profit groups like MSAA and NMSS provide a wealth of information on MS symptoms, treatments, and medications. Search their sites for specific symptoms you’re experiencing, and try the suggestions that fit with your lifestyle.
• Patients Like Me, www.patientslikeme.com, is a site that allows you to create a profile and track your symptoms and have access to other people with MS in an anonymous format.  This site is terrific for learning about other people’s experiences with medications, knowing methods for their success in treating symptoms, and tracking your own health. Entering medications, symptoms, exacerbations, and general health information is invaluable for monitoring my own health. It’s important to know that this information is used to help researchers try to further the understanding of diseases, assist in treatments, and hopefully find cures.  Some people aren’t comfortable sharing this information, but I’ve found it to be useful and confidential in my experience.
• Local MS Self-Help groups are a tremendous resource for building relationships and sharing information. These groups involve meeting people who have experienced my challenges and can share their advice. While the information they provide is helpful, I find that meeting people who have lived through the challenges I’m facing and thrived despite symptoms that scare the heck out of me is a huge benefit beyond the suggestions and advice.  These people inspire me and reduce the fear I have for potential disability.  They provide an understanding ear when I need to talk, they encourage me when I’m nervous, and they share the humor in living with MS. 
• Facebook groups that focus on people with MS are a more recent addition to my ongoing education and inspiration since they didn’t exist when I was diagnosed.  These groups may be public or require you to be added to a closed group.  Join to the level that you’re comfortable and that won’t jeopardize your career.
• Accept that you’ll likely need a medical team, not just one doctor. In addition to your primary care physician and MS neurologist, it’s helpful to have additional specialists available. When you’re newly diagnosed, you don’t need to fill out the team immediately.  Just know that one provider isn’t going to be an expert on every issue you’re experiencing, and they won’t be able to help in every instance.  When your neurologist or primary doctor can’t help you with something, consider adding people with expertise in other areas like a physical therapist, counselor, naturopath, or urologist. Tell every provider you see about every issue you’re having. I’ve been pleasantly surprised when my physical therapist was able to solve issues I thought my neurologist would solve but couldn’t.

Be cautious when interacting with people who have MS such as in groups like Patients Like Me and Facebook, and try not to take it personally when people are harsh or say something that feels hurtful.  It helps me to remember that other people in these groups are struggling, may be experiencing depression, and may just have terrible communication skills. None of these resources and sources of support will fill every need I have in dealing with my MS. It’s helpful to learn which ones help me in different circumstances depending on my mood and needs.

Overall I don’t expect everyone in my life to understand what I’m going through.  Instead I have a menu of resources and a list of people I turn to for support depending on the issue.  It’s taken years to create this list, and I keep adding to it.

I realize that my suggestions may be overwhelming.  I’ve only taken on one thing at a time since my MS diagnosis.  I’ve read suggestions and followed what made sense at the time given my biggest issue. I also discard comments or things I read that don’t fit with my experience. 

Other than increased numbness, fatigue and clumsiness, the only thing that changed immediately after my diagnosis was that I knew what was causing my symptoms.  It helped me to remember that my health hadn’t changed; only my knowledge of it had.  It took me time to learn what helped me, and giving myself permission to take time to adjust helped ease the stress.

Relationship Questions I'll Ask Now That I Live With A Chronic Illness

Here’s the hard thing about relationships when you have a chronic illness. At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us. And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either. The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice. I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other. 

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out. 

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.”  My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things. 

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

1. Can you be gentle and respectful to me when my health inconveniences you?
2. Can you respect and appreciate me if it gets messy?
3. Do I like how you treat me when I’m sick or not doing well?
4. Do you continue to treat me as a partner when taking care of me? 
5. Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
6. Are you there for me because you don’t want to be the bad person or because you want to be with me?
7. Will you go to doctor appointments with me and share my experience?
8. Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
9. How resilient are you? How do you handle stress?
10. Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible. 

Frostbite and MS: Building Resilience

One of my sisters is significantly younger than I am, and she’d never heard the story of my frostbite that occured over four decades ago. She knew I had it as a child, but it was only recently that it came up and I told her about my experience nine years before her birth. It was a story that was obvious to me, but it never occurred to me to tell her about it. Somehow it came up while we chatted, and I told her the full story.

At five years old I walked to school on the last day of class before winter break. Excited for our Christmas party, I carried a trash bag full of home popped popcorn in paper lunch bags for each student in my kindergarten class. We lived in Ontario, Canada, and I walked to school with another of my sisters three years my senior.

With the wind chill bringing the temperature to 20 below, my sister and I were bundled up with winter coats, mittens, and scarves for the cold walk to school. I carried the large bag of party treats in my right hand. On the way, I cried I was cold. By the time we arrived at school, my eight year old sister was carrying my bags and had given me her hat and scarf to wrap around my hands. I’m not sure how far or how long I carried the bag without moving my hand, but it was long enough to do irreversible damage.

My sister saw me wheeled out on a gurney from the school. I endured a month of soaking my hand daily for a half hour at a time in lukewarm water. For years I was convinced I soaked my hand in boiling water. With the severe frostbite on my hand, lukewarm water felt like it was boiling water. A large blister covered my right index finger from middle knuckle to fingernail. Twice doctors peeled an outer coating that grew and encapsulated my hand like a lobster shell to reveal raw skin beneath.

Years later I learned there was discussion of amputating my right index finger. They spared it, and I’m lucky I have full use of my hand. The bones grew in a way that stunted the length of my fingers and expanded the bone at the knuckles. My right hand is about ¾” shorter than my left.

People notice my hand doesn’t look normal, but rarely do they ask. Some people assume it has to do with my MS. Others are just shy and wonder. If they ask, I’m open about explaining why it looks odd. But mostly I don’t think about it. It’s just a part of the way I am. It’s a part of my history and experiences as well as my physical body. I don’t flaunt it, but I've stopped hiding it. For me it’s a lot like how I feel about having MS.

My hands are significantly different from
having frostbite. I was lucky that I was able to
avoid amputation & retain full use of my hands.

We all have scars. Some are emotional, and some are physical and visible. I’m not ashamed of having MS. I don’t rejoice in it, but I choose to embrace it and rejoice in life. I can’t cure myself of MS, but I can accept the limitations it places on me and maximize my joy and life experiences. My MS, like my malformed hand, is a part of who I am. And given I can’t change either of them, I’m okay with them. I choose to look at the bright side. Experiencing severe pain as a young child that couldn’t be avoided helped me become resilient. My resiliency is probably my strongest asset in living with MS and living through adversity in general. While I wouldn’t choose the conditions that taught me these life lessons and built up my resiliency, I appreciate that something good can come from them. 

Relationship Changes: How An MS Diagnosis Can Change Relationships

The personal growth that can come after an MS diagnosis affects our relationships drastically. In facing our fears, the unpredictability of MS, and grieving the future we envisioned, our relationships can’t help but change. The experience reveals the dynamics that no longer support our mental and physical health or the future we now need. A friendship or marriage can blossom, or it can crumble from the magnitude and pace of change. And the outcome doesn’t dictate the value of the relationship, determine the efforts taken to maintain it, or judge each person’s character. 

I may have been on a life path where my way of interacting would have evolved this way without an MS diagnosis, but I think the diagnosis definitely accelerated my need to take care of myself. 

I don’t relate to people exactly the same anymore. I strive to notice when I’m contributing to a poor dynamic, own my words and actions, and distinguish between my issues and other people’s issues. It allows me to have some control over my life instead of unconsciously reacting to circumstances. It also reduces the stress that comes from feeling responsible for other people’s feelings and actions and trying to fix everything.

Some people saw this as rejection or abandonment. Others embraced it, and our interactions flourished. To me it felt like I was supporting them with new behaviors that weren’t at my expense and inviting them to join me. 

I appreciate all of these relationships regardless of where they are today.  These people are all a part of my life and history. I want to support them in their own life paths that are best for them whether our paths continue to cross or not. 

When Is It An MS Exacerbation?

Hands down the hardest thing for me to learn after being diagnosed with MS was discerning when I’m having an exacerbation (new MS disease activity where the immune system is attacking my nerve insulation), when it’s just existing symptoms acting up, and when it’s something not related to MS. Feeling confident in being able to tell the difference has been the biggest stress reducing skill I’ve learned, and it’s allowed me to relax when symptoms occur.

During the first few years after being diagnosed with MS, I couldn’t tell at any given moment if my immune system was acting up and I was in the midst of an exacerbation. Living like that is stressful and created a loop of worry that the stress would trigger an exacerbation. It took years of monitoring my health and reviewing the MRI scans with my neurologist to reach the tipping point where I feel I can distinguish between MS disease progression and life as usual.

My MRI scans showed I’d obviously had MS for years when I was diagnosed, but I only recalled fatigue as an issue. By paying attention to symptoms between MRI scans and then comparing how I felt to the scan results, I could make conclusions about what was or wasn’t an exacerbation. Having a couple of scans that didn’t show new MS lesions were extremely helpful, because then I could conclude that symptoms I’d felt during that time period were pseudo-exacerbations.

Each person with MS has different symptoms and disease activity, and each person will have different triggers. By sharing my mental checklist for self-diagnosis with examples, perhaps it will help you create your own:

1.    What are the symptoms? Have I had these symptoms before? What was the cause last time I had them? Would it make sense for it to be that again?

2.    Decide if it’s a pseudo-exacerbation where old symptoms are temporarily acting up:

a.    If it’s an old recurring symptom, is it occurring after a workout or at the end of the day?  Is it hot or cold out? Do I feel hot from anxiety, exertion, or the weather?

b.    Does it go away after a couple hours or by morning?

3.    Could it be something other than MS:

a.    Is a cold or flu making the rounds? Does anyone I know have it? Are my symptoms similar to theirs?

b.    Would an injury explain it? Any changes in medications or food lately?

c.    If the symptom isn’t usually MS related, what does Web MD say? 

4.    Consider it may be an exacerbation:

a.    Is my fatigue at an extreme level or more than usual for me?

b.    Is the symptom something I know to be typical for people with MS?

c.    Is it an old symptom for me that seems to be worse than in the past?

d.    Is it a new symptom for me, common for MS, and scary? I would immediately call my neurologist if I ever experience blindness or paralysis.

I’ll have old symptoms act up after a workout, when the weather is hot, after a long day, and sometimes after an alcoholic drink. Symptoms triggered by hot weather or a workout will usually subside after a couple hours of cooling down my body. Numbness from a long day or alcoholic drink (or both!) will be gone by morning. 

If it’s likely that it isn’t MS related, then I’ll take care of it myself or call my primary care provider. It’s important to take care of any infections quickly since they can lead to an exacerbation.

If it’s a new symptom that is typical for people with MS, I’ll call my neurologist and talk it through with him. My neurologist encourages me to call whenever I feel the need. I live two hours from the clinic, so I appreciate that he’ll talk to me over the phone. These conversations allay my concerns, confirm an exacerbation, or make it clear I need to see someone else to figure out the problem.

Life is extremely stressful when worrying an invisible disease could be active in my body at any time.  Doing some detective work on my health has been the best way to reduce stress, build confidence, and enjoy life. It takes a lot of effort, but it’s worth it!

New Year Goals and Designing My Life

My approach toward New Year resolutions is to just pause, think about things I want to accomplish or do in my life, or stop doing for that matter, and make a plan. It’s less about making resolutions than focusing my energy toward goals I’d like to achieve and living a life I’ll love. I think of it as designing my life and using a new year to motivate me to consider and organize my priorities. 

Articles online say people fail their New Year’s resolutions within a very short time into the New Year. I’d rather commit to change and effort than to a specific task-based resolution that isn’t always achievable when health issues or life obligations interfere. It’s also easy to get sidetracked. If I have a plan and a mechanism for remembering what I’d like to accomplish, I’m more likely to succeed.

This approach was very successful for me last year when I signed up for a marathon. I stretched a 20 week training plan to 36 weeks. It allowed for plenty of setbacks without the pressure of failing. It also helped keep it fun. See my post, “Adapting to My Limitations and Doing a Marathon Anyway.”

Considering my MS disease progression will likely include mobility issues in the future, I prioritize being active. I think about things I want to do in my lifetime that I will enjoy and that I may not be able to do if I lose my mobility. My goal is to try to do them sooner than later. If I don’t do some of these things, it won’t ruin me. But I want to be conscious of them and incorporate them into my life now if possible. I enjoy planning and doing them now, and I will enjoy them in the future while reminiscing about them. 

None of the changes I want to make are done in the first month of a new year. Instead, my intention is to prepare. I’m not setting up resolutions to do things perfectly all year long. I’m creating a plan with routines to make progress toward living a life I love while enjoying my life as it is today.