Autumn Rest

For whatever reason, I struggle to write in November. I don’t know if it has something to do with the shift in weather, the pending holiday season, or writing burnout. But every November since I started this blog, I struggle to write. Additionally, dealing with Lytton’s health issues makes it hard to keep up with my weekly writing.

Rather than adding to my stress, I am following my own advice and engaging in self-care. I will be taking the month off from creating new content. If you are a newsletter subscriber, you will still get a new email each Friday morning. If you aren’t subscribed, it’s never too late to join the 2019 wellness challenge.

I will be revisiting some of my older posts for the month on the blog, updating the content with fresh thoughts when appropriate. Join me over at Facebook and Twitter for related articles to my posts.

I will re-start new content on December 2nd, so it won’t be a long wait. I have a gift for all my readers available for download towards the end of the holiday season, so be ready!

Have an excellent November, and I will see you in December.


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Managing Grief with Chronic Illness

“I know that the ones who love us will miss us.”

Keanu Reeves, on what happens after death

Over the past two weeks, I’ve faced an emotion I haven’t dealt with in years. I’ve written about grief before, in the context of coping with a chronic illness diagnosis, but I haven’t reflected on physically losing someone. Relationships come and go, and we mourn losing our connection to a friend, but when death enters the picture, there is a finality to the whole situation we cannot come back. Living with a chronic illness means a strong emotional episode can trigger an exacerbation. That can set us back days, weeks, or even months.

So how do we manage an emotion like grief? 

It’s difficult, because there’s no right way for each person. There are healthy ways to manage grief and unhealthy ways. With a chronic illness, we must find the healthiest way to manage our grief to protect our wellbeing. What shape that takes depend on ourselves.

My Grief

For now, no one is dead in my life. But I have the opportunity to prepare for the death of a loved one. Death can surprise us, or we can have the grace of a timeline. My cat, Lytton, is undergoing some major health concerns. I’ve had Lytton for over ten years, and he’s a significant presence in my life. While he is eleven, I always assumed I would have more time with him.

With each emergency visit and specialist conversation, we are left with the feeling that the end is coming sooner than expected.

Knowing that one of my sources of emotional comfort and napping buddy may soon pass has thrown me headlong into the grieving cycle. I’ve had to reassess priorities and recognize the impact grief will have on my MS if I am not careful.

What follows are some thoughts I’ve had surrounding death and loss. 

Another Thing Chronic Illness Takes…

Chronic illness takes away our ability to grieve in the manner we wish. We can grieve however we want, without regard to our disease, absolutely. But if we have people who depend on us, or we don’t want to deal with a problematic exacerbation, we must keep one eye open to our health.

We must contain and manage our grief.

I am not suggesting “suck it up” or “get over it,” attitudes. No, grieve as long as needed in the necessary form. But be aware of what you are doing and how it might impact your health. Grief is stressful, and if we allow that stress to overwhelm us, we can make ourselves sick.

In the most profound moments of grief, we often do not care about our health. Nothing matters except the loss. Despite how it feels, the intensest moments of pain will pass, and our lives will return to the new normal without the individual. Should we stop taking care of ourselves during our period of grieving, and that helps intensify an exacerbation, the effects of the flare-up may be lifelong. 

To reframe what I mean through an example (this is for illustrative purposes, it hasn’t happened): I allow myself to get so worked up over Lytton’s death that I get an exacerbation. This leads me to lose function of my leg due to numbness, and I must be hospitalized for intervenous steroids. While I have Relapse-Remitting MS, it doesn’t guarantee my leg functionality goes back to 100%. Instead, I leave the hospital with a permanent 80% functionality of that leg. I can no longer achieve the specific goals I had for myself, and I must adapt my life to a new normal. 

I may grieve for Lytton’s death over several years, but I potentially have at least thirty more years to go beyond that. For the few months of intense emotional grief, by not taking preventative measures to balance my health and despair, I’ve impacted the rest of my life. Additionally, Jai loses his mother while I am in the hospital, and I’ve permanently reduced my ability to interact with him. 

I will probably feel guilty for not taking care of myself, needing to be hospitalized, and the impact of the exacerbation on my overall health. All three stemming from a situation where I could have prevented the flare-up through self-care.

Note: with autoimmune/chronic illness, we cannot prevent our flare-ups. They will happen when they happen. We can, however, take steps to minimize them from occurring. It’s remembering to take these steps while grieving to help prevent or lessen the impact of an exacerbation.

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Humiliation with a Chronic Illness

I’ve discussed how frustrating it is for me to ask for help, how the act of requesting help is a perceived admission of weakness. I’ve even highlighted the trouble I, we, sometimes have in the act of asking itself. To humble yourself before someone is humiliating, but this is for those without a chronic illness out there: having a chronic disease is humiliating.

Not being able to remember the details of a conversation I had five minutes prior is hugely frustrating, but typical for me. Having to cancel a social engagement because I am too exhausted causes more anxiety than if I went. Realizing that I am having an irrational reaction to a minor situation, but unable to control it causes a lot of shame.

These are the “in-the-moment,” examples of my MS humiliating me. I also have an unknown future ahead of me. While I try to be mindful and live in the moment, there are times where I must confront my future with the illness. I can’t be a grasshopper in my disease and live every day like it is summer. With a little one, I need to mentally and physically prepare for possibilities.

And these possibilities can be humiliating. The idea of asking for help if/when I reach one of these possibilities heightens my anxiety even if it’s all hypothetical right now.

Debilitating Disease

Has something fallen from your grip, and you know it’s due to the disease and not carelessness? Have you used store-provided scooters to get your errands done? Used a mobility cane to help you walk during an exacerbation, or because of damage done by one?

In each of these cases, you may have dealt with strangers’ stares, rude comments, or well-meaning looks from close ones. Humiliation comes not just from the outward expression of the disease, but how the condition impacts our egos. Each time we must compromise to accommodate the disease, there comes a moment of humiliation where we recognize the deteroation.

Intensifying the humiliation are strangers commenting how we should leave the scooters for those who need it; how we need to get out of their way because we’re moving too slow*; or you don’t look sick, so stop faking.

*I had an elderly stranger get snippy at me when I moved too slowly through the aisles in the days after my hospital stay. 

Admittedly, before I got my diagnosis, I did the same thing. While I kept my thoughts to myself, I often wondered if a person using a scooter or handicap placard needed them. Post-diagnosis, I am more sensitive to the fact that disability is invisible, and I shouldn’t judge strangers for using the tools available to them.

Most of us have experienced some negativity surrounding our illnesses by strangers. When these moments happen, like when the man got mad at me for being in his way at a store, it causes intense feelings of humiliation. It makes it hard to want to ask for help or take advantage of the support available to us.

Chronic Illness: the Humbler

A quick disclaimermy MS/chronic illness looks different from others. It’s the nature of autoimmune/chronic disease: each case is distinctive. I do not have to deal with the same issues as others, and I may never have to experience the same problems, but there is no guarantee the direction my MS will take. I may get worse; I may stay the same; I may get better.

I see my neurologist every year. At this point, it’s a simple check-in with my health. They like to know if I am getting worse or staying stable with my MS. Right now, I am maintaining, so it’s always a quick session. But the questions the neurologist asks are the same, and each time I go in, I am afraid of the day I have to say “yes,” to some of them. 

The question that scares me the most is: “do you have any issues controlling your urine?” My neurologist wants to know if I am incontinent, a symptom of progressing MS. I can continue to answer “no,” but there are moments in-between appointments where I am worried about my control. It might be symptomatic of my MS, or the fact I gave birth

Being faced with that question each time I see my neurologist is embarrassing, but I must be honest in my response. With incontinence affecting 80% of MS patients, there’s an excellent chance I will start experiencing it in the future. The day I answer “yes,” is the day my neurologist and I know my disease is progressing.

Knowing that there’s a chance I will need to wear urine control aids is humiliating. Let’s be realistic: the day I realize I need to start doing so is the day I have an accident. Hopefully, not in public, but it could happen.

Don’t Be Alone

In our most intense moments of humiliation, there’s a desire to isolate ourselves. Please avoid doing that as much as possible. Ask others for help or find ways to adapt to your illness as much as possible. Reach out to others for comfort, so you don’t feel alone.

I’ve said it often before: the chronic illness is isolating enough, don’t allow yourself to become further isolated.

Help is Temporary (and That’s Good)

If it helps you, remember this: everything happens in cycles. Life is one big cycle. Our exacerbations occur in cycles. You may be in a period where you need a lot of help, but it might be temporary. You may not always need as much support. You’ll figure out a way to adapt and do things on your own.

Keep that in mind if you are afraid to ask for help: this may be a short cycle, and you may not need to keep asking for help. While it is humiliating to ask, it will be a blip.

Chronic illness is humbling. Asking for help is humbling. But remember, acknowledging both and not giving into the isolation shows your resilience. The disease takes so much, don’t let it take what makes you durable.


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Reaching Out to Others

I struggle to ask for help. Ash will tell you that he has to drag it out of me when he knows I am struggling. I will get frustrated in those moments and give into his offers for help. Here’s how bad I am: when I was pregnant with Jai, I refused to ask for help even when I needed it. I had something to prove, mainly to myself, that I wasn’t helpless. While being independent isn’t a bad thing, learning to be okay with reaching out to others is equally important.

It’s humbling when I admit I need help. It feels like a weakness when I do. I am not imagining it either, American culture does not encourage asking for help. With the reemergence of the “bootstrap” narrative, it can lead us to feel awkward when we want to ask for help. Individually, Americans are happy to help those around them. But looking on a broader scale, Americans tend to prop up those who find success with minimal help.

This can lead to the rest of us feeling judged anytime we need to get help.

It would be nice to do everything on our own, but with a chronic illness, that’s often impossible.

Chronic Illness & Asking for Help

Having a chronic illness means we will need to ask for help at some point. It may be from family, friends, or healthcare providers. When we ask for help, we are performing an act of self-care.

But getting to the point where we can ask for help is the trick. Often, we’re dealing with an invisible illness. When we reach out for help, and we know we don’t look/act sick, it can feel like we’re being unreasonable. For myself, I feel like I am taking advantage.

If I need help from anyone, I will bumble out justifications why I need the help. I often feel like others won’t understand, or I need to remind them that I have a chronic illness. At times, I feel like I manage my MS so well, that others forget I even have it. So when I need help, I am coming from a place of “they will think I am taking advantage of them,” or “they will think I don’t really need the help.”

I recognize that I am being unfair to others when I take this attitude. I am not trusting that they will understand or that they don’t remember. People remember I have MS when I tell them. It also comes from a space of not believing others when they say, “let me help you.”

Learning to be “Okay” with Help

It is okay to ask for help. For the most part, you know what you are capable of doing. So when there comes a time where you need to reach out to others, do it.

But if you ask for help, show appreciation for whatever help you receive. I have helped others, and sometimes I receive an insult in place of gratitude. You may find it’s a similar situation when you ask for help: you feel vulnerable, and when you do, you may be slow to express your gratitude. But you want to preserve your friendship and be able to ask those people for help again.

Be sure to express your appreciation. Be okay with asking for help. Work on releasing any feelings of vulnerability and look at getting help as a sign of your inner strength.

You Are Not Alone

Coping with a chronic illness is a lonely affair. Your symptoms, your struggles, your victories, they are all internal fights for the most part. These battles become hidden from the outside world. It makes dealing with a chronic illness one of the loneliest journeys you’ll make in your life.

But you are not alone.

There are support groups out there relating to your illness, online and in-person. If you are uncomfortable with the support group dynamic, you can always read blogs and lurk in forums. You can find connections out there and similar stories/struggles to your situation.

The more you reach into these safe spaces for your illness, the more comfortable you should become in recognizing that there is normalcy with your disease. When you normalize your experience, it should be easier to reach out to others to help you. You see that getting help is part of the disease and there’s no shame in doing that.

Help Others Help You

In September, I reflected on the need some people have to help you cope with your illness. You can always say “no” to their help, but sometimes they are insistent, and you do need them.

To be clear, you are under no obligation to allow people to help you if you don’t want it. But sometimes it is easier to give in to the insistence and let them help.

In these scenarios, have a pre-set list of things you are willing to receive help on. It may be driving you to appointments, meeting for social interactions over coffee/tea, or dropping a pre-made meal off. By having an “okay” list to draw from, you won’t compromise your values, and you won’t be left struggling to find something for your friend to do.

It’s hard to accept help from others, but we cannot pretend we are an island. Sometimes it’s essential to reach out to others and let them help us cope with our chronic illness.


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Turning It Over

I struggle with letting go of control. Ash will tell you this should you ask him. When I get into a micro-managing state, it’s one of the quickest ways for me to experience an exacerbation. When I feel out of control, I tighten my grip to control everything around me, and then I stress out because I feel out of control. While I haven’t had a significant exacerbation in several years, my brain fog, L’Hermittes Sign, and neck twinges when I start down the path of stressing out. 

I’ve learned I have had to say to myself, “I can’t control everything, so I need to stop,” and attempt to go with the flow no matter what direction that might take. But I can slip back into bad habits of wanting to control everything and then I start stressing out again.

It’s a vicious cycle.

And usually feeling out of control helps bring that about. I’ve learned that I cannot control everything, and for the most part I do well to go with the flow of everything, but then I slip back into bad habits of wanting to control everything around me and then I get back into that space of feeling out of control and stressed.

It’s a vicious cycle.

When we have a particular life philosophy, we are often told to let go and give up control. And there’s something to that – it’s just got to be done in a healthy and reasonable manner. I have found what works for me, and so it’s important that you find what works for you.

I’ve learned I have had to say to myself, “I can’t control everything, so I need to stop,” and attempt to go with the flow no matter what direction that might take. But I can slip back into bad habits of wanting to control everything, and then I start stressing out again.

Depending on your life philosophy, or belief system, we are often told the importance of giving up control. That may be to a higher power, the universe, or just in general. That’s solid advice no matter your background: recognizing what you can control, what you can’t, and letting go of what you can’t.

When we have a particular life philosophy, we are often told to let go and give up control. And there’s something to that – it’s just got to be done in a healthy and reasonable manner. I have found what works for me, and so it’s important that you find what works for you.

Letting Go of Our Worries

If you have a higher power, you are at an advantage to someone who does not, because many belief systems teach the importance of giving up control to a higher power. If you don’t have a particular belief system, you have to remind yourself not to be so controlling and go with the flow. It’s a built-in reminder that those without a higher power do not have. But if you don’t have a higher power, that’s fine, you just have to remember to say, “it’s okay, I don’t need to control everything.”

Struggle with giving up control? Well, if you have a belief system, seek out direct texts that teach you to give up control. If you can’t find anything there that speaks to you, seek out secondary books, usually written by scholars, that might speak to the matter.

If you don’t have a belief system, consider mindfulness techniques to bring you back to the present moment. When you focus on the present, the moment you are in now, you cannot try to control everything around you. Center yourself at the moment and find ways to let go of the control you are fighting to hold. Look to your health as a starting point: I must let go of control to better tend to my health.

Finding the Balance

This brings up the question: who is responsible for our lives? Us? Our Higher Power? The Universe? Something else?

That’s an answer only you can decide. I cannot tell you, nor can I presume to suggest the correct answer. What I can do is tell you what worked for me, but that does not mean it will work for you.

For myself, I gave up personal responsibility when I had a specific higher power. I gave that higher power responsibility for my life, my happiness, and at times, my actions. I gave up too much control to this higher power. They were not responsible for my specific actions or responses to a situation, though I said they were as a means of absolving bad behaviors.

When I took responsibility for my actions and reactions to situations, I found a more profound peace within myself because I was able to feel more in control of my life. Even though things happened to me, outside of my control, I recognized that my response to those things was something I could control. It was about finding a balance between what I could control and what I could give up.

Figure out the balance in your own life: what responsibility can you take on for yourself, and what control you can let go. When you recognize that there are elements in life beyond your control, such as your chronic illness, you can start to lower your stress.

Acceptance of What We Cannot Change

Another advantage people with a higher power have over those who do not have one, is it allows for recognition for what cannot be changed and force us to move forward. Without a higher power, there needs to be a reminder to move forward in life, despite the roadblocks. People can place their trust in the higher power to see them through and take comfort in that.

Without a higher power, we must seek comfort elsewhere. We must trust that life will guide us through the process and that a coincidence will pop up to allow us to move forward or find an alternative. Often, life provides us with this when we aren’t expecting it. So remember to expect nothing, but accept everything to embrace an opportunity when it arises.

Moving Forward

It’s not easy to give up control, whether to a higher power or just in general. It’s never going to be easy, no matter how often we might need to do it. Why? Because control allows us to feel empowered. When we give up control, we lose a sense of power.

But if we want to move forward in life, if we’re going to begin to heal the emotional wounds caused by a chronic illness, we must give up control over things we cannot control. Whether that is to your higher power or to something else, when you give up control, you begin the process to move forward in life.

Life moves us in a forward momentum whether we like it or not, we might as well accept that movement and find ways to work with it, rather than against it.


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