Life with Limitations

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Everybody has something to deal with, whether it’s chronic pain, illness, injury, stress, or trauma. I have some limitations in my life due to chronic illness. I won’t bore you with all the details of how chronic illness is defined or what it means. I won’t explain the names of the illnesses with which I live. Everybody has their own problems, ailments, and other struggles that they live with. Mine are certainly better than some and, for that, I’m grateful.

Having said that, I feel that it’s also beneficial to raise awareness for the struggles that people live with, whether the limitations are physical, mental, or emotional. I feel like they’re all intertwined anyway. For sure, when I feel physically depleted, I also feel angry or depressed or sad (or all 3). Sometimes my thinking is adversely affected and I don’t trust myself to make important decisions or even drive. My anxiety ramps up even more than usual. Conversely, if I’m feeling down or thinking less clearly, it also seems to magnify the physical aspect of my conditions. Being affected like this means that I’m incapable of functioning at my best.

It’s not always like that, of course. I have great days when I can do everything (and sometimes more) than I planned on doing. I’m so grateful for those days. I have bad days when I’m unable to do more than open and close my eyes and pray for sleep. I hang on through those days knowing that it will pass. What I’d like to talk about is our norm.

My own “normal” life has changed to accommodate my slower pace, my physical and mental limitations, the flexibility required to live my life now, and the perspective necessary to get through each day. Again, everybody living with some type of limitation is living within a vast range of capabilities and disabilities. I can only speak for myself but know that much of this resonates as common amongst us.

One of the biggest struggles that we live with is trying to ensure that those closest to us understand what we’re going through. We want them to know that we aren’t uncaring when we’re forgetful and we don’t mean to be cranky and angry when we’re actually frustrated and upset with ourselves! If I ask you the same thing 3 times, please understand it’s not because I wasn’t listening. I sometimes have a hard time concentrating or remembering. We are happy to talk about any of this with you, but also don’t want to burden you. If you have questions, please ask us so that we can explain.

We want our family and friends to understand that we would do everything we can to keep our plans and spend time together but sometimes we just can’t do it. It doesn’t mean that we care less or that, whatever it is, is unimportant to us. We feel horribly guilty when we have to change or cancel something that we committed to. We hate to have to talk about these things and we tend to keep our troubles private, but we also struggle for understanding. We want those closest to us to know how we’re affected, understand how it affects them, too, and how we can best work together to get through these times.

Every morning, I stick to as much of a routine as possible. It helps me feel confident and requires less thinking. When I need to vary from that, I require additional time. I need to accommodate that. While I’m going about my usual morning routine, I evaluate how I’m feeling and determine what I’m able to accomplish that day, or at least what I THINK I can do that day. It may change in an hour. I go over what I had planned for the day and look at my to-do list (because I have to write everything down if I even hope to get it accomplished). On good days, I may be very successful and get everything done I had hoped for. On bad days, I may end up ignoring the entire thing and going back to bed. Then I’ll feel guilty because I “wasted” my day. This, in turn, leads to me feeling sad, angry, exasperated, and not even close to feeling better after spending hours in bed. On top of that, the list of uncompleted tasks gets even longer for the following days. I feel compelled to do even more the next day and the cycle continues. Add to that the inability to sleep and, whatever sleep I do manage to get is fitful and inadequate. It makes for an interesting day. I think we’ve all been there!

I feel like the pressure that we put on ourselves far exceeds that of other people’s expectations of us. I know that I feel like I have to “keep up”, do my share, prove that I’m worthwhile and can do what I need to do. I don’t want to feel like a failure. We shouldn’t feel this way! If I was talking to somebody else, I’d feel far more compassion for them than I give to myself. It’s like we put this extra burden on ourselves and make things so much harder than we have to. I’ve tried and tried to overcome this way of thinking, but I’ve been unsuccessful so far. Every single day, I get up and attempt to do as much as possible rather than taking the time to evaluate what’s actually BEST for me to do that day and just do that. I’m continuing to learn different ways to address this and I keep trying to at least THINK about it every day rather than just rushing headlong into bad decisions.

It’s a hard thing to do when I really WANT to run to the store, visit my kids, play with my grandson, and spend time with friends. Of course, that’s all balanced with paying bills, cleaning the house, cooking, doing laundry, going to the doctor, and dealing with insurance. Trying to fit in self-care seems to be too much, even though I know it should be a priority. We have limited amounts of energy and physical tolerance levels. That’s the crux of the problem: balance. Living a life without limitations is hard enough to balance. Living a life with additional problems is like walking a tightrope. Make one small error in judgment and you could pay for it for days or weeks. Dwell on it too long and you’ll feel even worse. Feel good this morning? Enjoy it because it might change by noon. How do we manage this?

We manage our lives the best way that we’re able to! It’s as simple as that. We each do things differently. There’s absolutely no right and wrong. Everyone has different circumstances, different expectations, and different temperaments. It’s unfair to judge anybody against another, whether we’re struggling or not. That’s the thing. We don’t want to be lumped into a label of “disabled” or “ill” or “sick” or any other title that’s being used. We’re human beings struggling with our limitations just like every other human being on earth. Ours are just sometimes a bit more obvious than other people’s struggles.

I’m extremely fortunate that I have family and friends that do support me without explanation. I know that it can be as frustrating for them as it is for me, but I don’t feel like I have to justify how or why I do things anymore. I’m becoming more comfortable in my own circumstances and learning how to be more accepting of myself as I am now. It’s a journey, but one that I need to embark on again every single day when I wake up.

I know that I’m lucky and that lots of people aren’t as fortunate. They feel as if they have to prove their disability or prove their worth. Neither one is a good thing. It puts additional stress on an already stressful life. We need to realize that we’re all just doing the best that we can, each in our own lives and in our own circumstances. My hope is that we can understand each other, without judgment, knowing that we all have issues that we’re dealing with.  This means being more accepting and understanding of ourselves as well. Sometimes I think that’s the hardest job of all!

Be Well ♥

 

Change Happens, Ready or Not

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Throughout our lives, we come across times of change, whether we looked for it or not and whether we want it or not. Obviously, how we react to these changes will affect the next portion of our life.

Some changes are easier to react to than others. For instance, if we actively decide to make a change for the better (new job with better hours, more pay, or a better location or a new house/apartment, new relationship, etc.), the change is much easier to live with. You’ve made the choice yourself and you’re benefiting from the change in a positive way. Does this mean everything is rosy? Nope. Continue reading “Change Happens, Ready or Not”

World Lupus Day

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For those of you that may not know, this topic is near and dear to my heart. I’ve been diagnosed with lupus myself, as well as some of the other autoimmune diseases. It’s important to identify and treat these diseases as soon as possible in order to prevent damage to your body. In most cases, people spend years and see several different doctors trying to find an answer to explain what’s wrong with them. Please make yourself a priority. Don’t give up. Keep looking and fighting for yourself. It’s important.

World Lupus Day

Today has been designated as World Lupus Day. It’s important that this autoimmune disease be recognized and discussed.  It’s important to recognize the symptoms and to fight for a diagnosis. The longer you’re undiagnosed, the more damage can occur to your body.

What is lupus? It’s a chronic autoimmune disease that can damage any part of your body. Something goes wrong with your immune system and, instead of fighting off viruses, germs, and bacteria (like it’s supposed to do); it fights and destroys your healthy tissue. This causes inflammation, pain, and damage to various parts of your body.

The Lupus Foundation of America estimates that there are currently 1.5 million Americans that have some form of lupus. While this is a widespread disease, awareness of it is way behind many other diseases.

A recent UCLA study found that lupus is among the leading causes of death in young women between 5 and 64 years of age. Often, children and teens are among those most likely to suffer the more severe and life-threatening consequences of the disease.

Currently, only 73% of Americans between 18 and 34 are aware of lupus and most know little about it. This is upsetting because this is the age group that is at the greatest risk of developing lupus. It affects mostly women of child-bearing age.

It’s sometimes difficult to diagnose lupus as it is often called “the great imitator” due to confusion of symptoms with many other things including fibromyalgia, diabetes, rheumatoid arthritis, thyroid disease, Lyme disease, and many more. It is important to be diagnosed as it affects many different parts of your body and can cause significant damage. Lupus can range from mild to life-threatening.

Symptoms may be vague. Symptoms may come and go and new symptoms can pop up and disappear at various times, sometimes even in the same day! Some of the more common symptoms include (but are definitely not limited to):

  • Extreme fatigue (worse than being tired)
  • Headaches (from mild to severe)
  • Painful and/or swollen joints
  • Anemia
  • Swelling (edema) in feet, legs, hands, and/or eyes
  • Sun and/or light sensitivity (photosensitivity)
  • Pain in the chest on deep breathing
  • Fevers
  • Hair loss
  • Rashes
  • Abnormal blood clotting
  • Mouth and/or nasal sores

Some more serious consequences can be attributed to lupus both directly and indirectly (through permanent damage due to inflammation, treatment drugs, etc.). Some of these can include things such as infection, heart attacks, strokes, kidney failure, osteoporosis, and fibromyalgia.  Infections, cardiac conditions, and lupus itself are the 3 top causes of death in lupus patients. It is imperative to identify, monitor, and treat all conditions with a diagnosis of lupus.

Rarely does lupus come alone. Once diagnosed with this autoimmune disease, you are far more likely to develop one or more others. Some of these may include inflammatory arthritis, connective tissue disease, scleroderma, Sjogren’s syndrome, vaculitis, Rheumatoid arthritis, eye problems such as uveitis, Raynaud’s, peripheral neuropathy, and blood count issues. These are just some of the others to look for. This is something to be aware of and follow up with your physician to ensure diagnosis and treatment for each condition.

Please take time and learn a bit more about Lupus. It’s important to learn the facts and to bring any unexplained symptoms to your doctor’s attention.

 

 

 

 

Can’t “Just” Do It All Anymore?

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At some point in our life, we have to stop assuming that we can “just” do whatever we want. Sometimes we can’t “just” run to the store or “just” pick up the house. Sometimes it’s a bigger deal to get it done. Sometimes we expect this change to happen and sometimes it takes us completely by surprise. No matter how it happens, it’s an adjustment that we are forced to make whether we like it or not. It’s just the reality of it.

I think, for most of our life, we go along doing what we want to do or what we have to do without thinking too much about it. We go to school, we go to work, we go to the store, and we go out with friends. All of these things are done without too much thought. We’re in the habit of doing things we have to do, like cleaning the house or going to the grocery store. Most of the time, we just think of these things as necessary and get irritated if we don’t have the time or don’t really feel like doing it. If we get invited to a party or want to go to an event, we decide if we want to go or not. Continue reading “Can’t “Just” Do It All Anymore?”

Getting Through the Storm

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storm clouds

I’ve been thinking lately about how chronic illness affects people and was going to do an article about it. This is not about that though.

I realized when I first started thinking about this topic that the first two things that popped into my head were how all-consuming it can be and how people deserve compassion. Then I realized that these two things are not exclusive to people with chronic illness. They are, in fact, common to everybody and something that we should think about and be aware of when dealing with our own situations and when dealing with other people in any circumstance.

Think about it: everybody that we encounter throughout our day, from the cashier at the coffee shop to the person on the other end of the phone that we speak with, all have individual lives with problems of their own that they deal with.

  • New mothers are dealing with life-changing issues while being sleep-deprived.
  • Many of us have problems at work, either person- or issue-related that may be troubling.
  • Lots of people have financial problems that they are trying to resolve.
  • There are so many people with health issues ranging from acute and immediate to chronic and debilitating.

All of these, and so many more, are problems that keep us awake at night. We all have some type of problem that we’re working on. Some are obviously more critical than others and they may come and go, but the one thing we have in common is that we all have to get through something. We all have problems that require our attention.

Additionally, people all handle problems differently. What one person considers minimal, somebody else may interpret (and react to) as a monumental problem. Stress also affects each of us differently and would affect our reactions and behavior. Our individual history may also affect our situation. Who is to say that one problem is worse than somebody else’s? There is absolutely no grading scale on problems, reactions, or situations.

There are a lot of factors that can influence how our problems affect our situation. The one thing we have in common is that we all have problems that worry us, can sometimes consume us, and that can affect how we live, how we think, and how we act. Since we know this, we should also have more in common with each other: compassion and understanding for ourselves and for each other.

For ourselves, it’s important that we cut ourselves some slack. Many times, we tend to be harder on ourselves than on other people. We expect a lot from ourselves. Allow yourself the time and patience to heal, to grieve, or to work toward resolution of the problem that you’re dealing with.

When dealing with other people, no matter who they are, be generous with your time, compassion, and patience. They, too, are going through situations and problems that we are unaware of, situations that are consuming their time, attention, and patience.

I’m not trying to be negative in saying that we all have problems, but it’s a reality in our fast-paced world that we’re all stressed and experience negative thoughts or experiences. I would like to think that, by taking the time to remember that everybody else we talk to or interact with has similar experiences, we might be a bit more kind or thoughtful to each other. If we could do this, it might just make somebody’s life a little bit easier and, after all, how much more positive could that be?

Me & My Coffeepot

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RIP, Mr. Coffee

Serious coffee drinkers will appreciate this. I will admit it; I still have a coffeepot instead of a Keurig (or I did). I killed it. I got up as usual this morning and blindly fumbled my way into the kitchen. I filled it with water, took a nice big sniff of my Dunkin’ Donuts ground coffee as I filled it, and turned it on. Nothing happened. Nothing at all. I unplugged it, plugged it back in and it beeped at me and then just sat there. That woke me up!

Let me explain a little bit. I have a very healthy (from my perspective) relationship with my coffee. Throughout the years, it’s gotten me through a whole lot from babies up all night (where’s my coffee?) to dealing with my chronic illness (need coffee to function) and now, simply, to manage my life. It’s become more than just something to wake me up or make me more alert. Now, as it turns out, it’s more along the lines of a security blanket for me. It’s dependable. It’s there every single morning to cheer me on, to let me know that I can get started and make it through the day. It’s like an old friend that you can count on. I know that sounds crazy to those of you that either don’t drink coffee or view it as a treat or an occasional indulgence. For those of us that depend on it, though, there’s nothing worse than waking up expecting that first cup of coffee and getting nothing…zip…zilch. Continue reading “Me & My Coffeepot”