Life with Limitations

life_with_limitations

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.

 

 

 

 

In the Interest of Awareness

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Every month, we are provided information about whatever that month’s “Awareness” campaign is about. How much time do you spend on that? I think it depends on what our interests are and if we know somebody that may be directly affected. If those things don’t apply to you, do you still spend any time looking at this information?

We are inundated daily with facts, suggestions, and ideas to digest. How, then, do we determine which ones we’re going to spend more time on? We only have a limited amount of time to spend on things that aren’t necessarily on our to-do list. I guess it’s what each of us considers to be interesting or enlightening. Where do the monthly “awareness” issues fall on that scale?

It’s obviously important if it affects you directly. It’s likely important enough if it affects a family member or good friend. What about the coworker or neighbor that might be impacted by whatever the awareness month is about? It might not hurt to learn just a little bit about each topic that comes along. It might even inspire a new passion or interest in something you hadn’t been aware of.

Each and every month there are new “awareness” topics. Obviously Breast Cancer awareness in October is a great example and one that most of us are familiar with. This awareness campaign has raised not only money, but interest, compassion and understanding surrounding this topic. Other campaigns have hopes of doing the same. Without awareness, there is no understanding or action.

Social media is hard to stay away from these days. It’s the quickest, easiest way to stay informed. It’s pretty easy to find as much or as little as you want to know about something. The “hot” topics or those most timely are readily available so you don’t have to look very hard to find it. Even if you only spend 15 minutes each month learning about something, you can learn enough to make a difference to somebody.

Please take a few moments each month to learn more about that month’s awareness topic. Your interest, your understanding, and your support can make a world of difference to somebody.

Cold and Flu Season

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As we’ve all been hearing in the news, this year’s flu season is just horrible! It’s widespread and it’s deadly. Be careful and be sure to follow all the recommended tips to both avoid and treat the flu. Here’s the link from the CDC talking about the flu. They provide tips on prevention, symptoms, and treatment. They also talk about the differences between a cold and the flu so that you can treat your symptoms correctly.

There are still lots of other viruses and infections out there that can affect us as well. Aside from seeing your doctor and taking medications when needed, what are some of the other things that you can do to make yourself feel better? Sometimes the only thing we can do is get through it and try to minimize the symptoms that we’re experiencing.

Many times, we don’t have much of an appetite but know that we have to stay hydrated and get nutrients to get better. Some of the popular methods of doing this are to drink water, ginger ale, or Gatorade. Sometimes we’re not able to tolerate much in the way of food so oatmeal, crackers or graham crackers, or soup is tolerated a little bit better.

Please see my post from last year on National Soup Day for more information on the benefits of soup and how to make your own!

What about some of the other things that you can do to just make you FEEL better, like cuddling in bed with your favorite soft blanket, a good book, headphones and music? Anything that makes you feel better at times like this is good for you!

I’m kind of old school and new school. I still believe in the power of Vicks VapoRub and NyQuil. I also use peppermint essential oil on my forehead and temples for headaches and eucalyptus and lavender to make me feel better. I grab my heating pad for muscle aches and an ice bag for head pain. When I have trouble concentrating on a book or television, I scroll through Pinterest or just listen to music. I’m also pretty convinced that chocolate makes it go away faster. What are some of the things that you do to get through this?