Personal Motivation

Recovering with Nature

When I began my health journey nearly a year ago, I wasn’t sure what direction I would take. Honestly, I thought I would give up, go back to my old habits, and be on MS medication by now.

In the back of my mind, I had very few pleasures: eating sugar, fried foods, and not exercising.  These were things I did to self-sooth and help me cope with stress and my diagnosis.

It was my pattern. To try something new, get discouraged, and then give up on it.

This particular venture worked out differently. I think because I am blogging it allows for a level of accountability, perhaps if I didn’t maintain this blog I would have given up sooner. Back in November, I went through a period where I didn’t post as often as I wanted. It may have been discouragement (“is this something really worth doing? I am putting a lot of time into something with little to no feedback”), but I think I was also just busy with life and not sure if I wanted to continue regardless.

Somehow I stuck through it and I’ve continued to notice positive changes. I’ve lost weight, I feel happier, I feel more balanced, and I think I’ve fully accepted my diagnosis. I was on the path of acceptance several years ago, but I really embodied the “things I cannot change” attitude since August.

Continue reading “Recovering with Nature”

Information Huddle

Talking to others about MS

There comes a time to reveal a difficult diagnosis to those outside the immediate family.

This can be a stressful or liberating experience. Friends may have suspected all along or been completely surprised by the information shared with them.

Revealing your diagnosis is an intimate act because you are sharing something personal with a friend in the hopes they will be supportive.

Because we cannot control others’ reactions after such a revelation, waiting until you are ready to talk is extremely important for your emotional health.

When to Say Something

First of all: you do not owe an explanation for your health. If you choose to divulge your diagnosis, that is a decision only you can make. Do not let anyone else force the matter from you.

If someone is visibly unwell and been so for a while, it may be harder to keep diagnostic information from others, particularly if treatment starts. It may be a relief in telling others because there is finally some information to share, but don’t be surprised if holding onto that information a little longer is more important.

While there might be a temptation to tell people immediately after the diagnosis, waiting until the information is processed is best. It allows for better preparation both with reactions and questions. Knowing which friends can handle the information with care and sensitivity helps in deciding who gets what information first.

But there may be some friends, despite waiting until you are ready, that may scale back the friendship because they don’t know how to handle your diagnosis. This hurts, but being ready for it will help mitigate the pain versus being blindsided. I made this mistake a few times and each time I wish I had waited to reveal my diagnosis or not bothered at all.

Only you will know the right time to divulge information, there isn’t a magic number or “best by” date to tell others.

Continue reading “Talking to others about MS”

Parenting

Being Okay with “Normal”

Content Warning: some discussion of depression and negative self-talk. If you are depressed or know someone who is depressed and in need of help, please look at the resources available through the Anxiety and Depression Association of America. You can find support groups, therapists, and treatment options here. You are not alone.


Before figuring out how to make adaptations to my parenting, I had to learn to be okay with my new normal. Parenting with MS requires a few extra steps but with some adaptability, it’s hard to notice that there’s a difference.

It’s frustrating that I can’t be the parent I want to be, but I have to be at peace with myself. No amount of changes can stand up to feeling discouraged about my situation. Discouragement is normal and should be honored when it occurs, but how I cope with that discouragement matters.

This isn’t meant to be taken as advice or “what should be done,” but an insight into how someone deals with their MS and what works for them. If you are a parent with MS or newly diagnosed, remember to be gentle with yourself and don’t compare yourself to others. You are doing the best you can and that’s the most important thing.

A Fight for Control

Recognizing that I have no control over my fatigue and mental fog is the first step I’ve had to take to accept my limitations. I find workarounds with my fatigue (more on that in Friday’s post) and mental fog, so I am not giving into the lack of control. I am accepting that I cannot control it and there’s a huge difference between the two.

Hi, my name is Deborah and I am a control freak.

I’ve admitted this several times on the blog. I like to be in control of every aspect of my life: from relationships to professional projects, I try and control everything so it can be what I perceive to be as perfect.

Psychology does not support this attitude: maintaining strict control over everything is the quickest way to be extremely stressed out and unhappy. It may cause everything to spin more out of control if I try too hard.

As the linked article points out: “Wanting control leads to anger; this emotional response increases when control is impeded.” The more I try to control my situation, the more frustrated I get and exacerbate the situation.

How do I try to control my MS?

There is a level of regression that occurs in my grieving process: I go into denial and try to forget that I have MS. I will push myself physically and mentally and completely ignore my body’s warning signs.

Looking at Spoon Theory: if I use up all of my reserves (and then some) I have the potential of not being able to do anything for the rest of the day and possibly the next day. This happens more than I care to admit because I just want to get everything done on my “to do” list.

That’s why working on my priorities every morning is so important.

Emotionally, I try to control my MS by being hard on myself. I will berate myself if I wasn’t able to do a particular task to my liking or if I don’t get a post/email/social media interaction out in a reasonable amount of time. I find that I will sink into a slight depression when I focus too much on what I can’t do for myself and my family.

MS cannot be controlled. Its very nature does not allow for control.

Most of my frustration stems from a belief that if someone else can handle multiple projects at one time, why do I struggle to do a single task? I am constantly comparing my abilities to others and wishing I measured up.

Continue reading “Being Okay with “Normal””

Parenting

Parenting with Multiple Sclerosis

Back in February, I did a post about Parenting with a Disability. This was about disability in general, not MS specific. Today, I will be revisiting this post and expand on some of its ideas while focusing on my personal experience of parenting with MS.

This isn’t meant to be taken as advice or “what should be done,” but an insight into how someone deals with their MS and what works for them. If you are a parent with MS or newly diagnosed, remember to be gentle with yourself and don’t compare yourself to others. You are doing the best you can and what works for you and that’s the most important thing.

Parenting through the Fog

Two of the biggest issues I face with my MS is fatigue and mental fog.

Every day I wake up feeling like I did not get a full night’s sleep, even if I did. The best way to describe it: I feel like I am walking around in a thick, goopy mud that makes me work extra hard to get through each step. The idea of going up and down the stairs to grab one item is extremely overwhelming on my worse days.

Says the person who gets up 3 days a week to run a couple of miles and just completed a half marathon yesterday.

But that is the issue with MS.

There are days when I have enough energy to do something strenuous and then incapable of doing anything for the rest of the day. Then there are other days where I do practically nothing and its still near impossible to get through the day without crawling back into bed.

And still, other days where I do something strenuous and I am able to do anything and everything all day with little-to-no consequences.

I find the inconsistency extremely frustrating. I am a person who loves to know what to expect and when to expect it. MS forces me to be patient with myself and I don’t like that.

Additionally, I struggle to remember things. The mental fog is infuriating because I can be looking at an object and pointing at it and be completely incapable of getting my mind to recall the object’s name. When I have these moments, I have to slow myself down and try to do what I can to work through the recall in a slower manner.

I know this day is coming and I am trying to prepare myself for when it happens, but Jai is going to mimic my ritual for recall and it’s going to break my heart when it happens. I can’t fault him because he will be doing it from a place of love and innocence, but it’s going to hurt to see a reflection of what I have to do to recall something through the mental fog.

Limitations in Parenting

It is very clear that I have some limitations with my parenting. There are days where I struggle to keep up with Jai and Ash has to help me out or I have a slower day where we sit in and I watch Jai as he plays a game by himself.

I really wish I could be more interactive in my time with him all the time, but I cannot. I wish I could remember certain things that Jai does, but I cannot. I feel like I am working with a severe handicap (and to a certain extent, I am). Some days I feel like if I will it hard enough I can shake myself into normalcy. I am just not trying hard enough to be more normal.

But that’s not how that works. Which is infuriating for a perfectionist like me.

I recognize these limitations and I try to do what I can with them. Wednesday will talk about learning to be at peace with my imperfections and Friday will be about how I’ve had to adapt my parenting after making peace with myself.

What sort of limitations have you found MS has brought to your parenting? Comment with your experiences below.


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Personal Motivation

Advocating for Your Health


I am not a medical professional and the information provided in this post is intended for your general knowledge only and is not a substitute for professional medical advice or treatment for specific medical conditions. You should not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition.


Something is wrong.

You don’t know what it is, but something isn’t right with your body. You may not have gotten an MS diagnosis yet, but you might suspect that it’s MS or something similar.

Going to WebMD tells you one thing, but you know that self-diagnosing is not the final stopping point. You call your General Practitioner and set up an appointment to begin the investigation process.

You’ve made it this far, but what is the next step to make sure you get some answers?

Healthcare Failings

Unfortunately, simply going to the doctor isn’t going to get you an immediate answer or an answer at all. This shouldn’t discourage you from going: in fact, it should encourage you to go even more and advocate for yourself.

But it is important to go into the process prepared.

Not everyone will have a smooth experience when talking to the doctor about health issues. If you are a woman, you are more likely to be dismissed for pain complaints. MS can cause pain, as can a number of other autoimmune diseases, so walking into the office may feel like preparing for battle: will my health care professional take my complaints seriously?

The answer depends. They will hopefully jump at the chance to figure out what is going on, but some may surprise you and be resistant to exploring your situation.

This post isn’t meant to disparage the medical system, but to shed light on the possibility that you may need to engage in personal advocacy. Being an advocate is important regardless, but having tools and a contingency plan will streamline and hopefully speed up the process of getting answers and treatment.

It is important to remember this: going in with a calm attitude and willingness to listen will help disarm any potentially defensive healthcare professional, but make sure to come in with questions and ready to assert yourself for answers if necessary.

Continue reading “Advocating for Your Health”