Chronic Illness ~ The Elephant In The Room

It is a rare occasion these days that I write a post about anything personal. To be fair, it is a rare occasion that I post anything at all this year. With that being said, I felt compelled to come here today and write about my elephant in the room, which is chronic illness. In thinking back, I’m pretty sure that it has been at least a few years since I’ve shared anything about this, at least publicly. Why now?

In the past year, flare-ups of my conditions have been a fairly regular occurrence, more so than they have been for quite some time. I do know a big part of the reason this has been happening, but that’s not the point of why I’m writing today. This is all about the things that we who have chronic illnesses would like for others to know, and don’t often express. So without further adieu, here are some of the things that I wish for people to know.

  • We do not want pity, but compassion is welcome.
  • We want you know know that when we spend time with you, that we are making a conscious choice to expend precious energy to do so. This often means that we will have to spend a day or two resting, but it’s worth it to us. So, when times arise in which we can’t make it (and they will happen), it isn’t that we don’t want to. Our minds and hearts want to do the things you invite us to do more than anything.
  • We do welcome suggestions sometimes, just not when we’re in the middle of a flare. Giving most of you the benefit of the doubt, your intentions are probably good. If your desire truly is to help, wait until we are feeling better to make your observations and suggestions. To do so when we are sick can feel like an accusation
  • When we tell you we can’t do something, it means we can’t. Sometimes it’s clear that some of our friends and family hear “I don’t want to”, and that is not what we’re saying. We are not making excuses to get out of things. (See bullet point #2)
  • We understand that it can be challenging to be our friend, family member, or partner at times. We lose our patience with our lack of reliability too. Even though we may have to sit things out, please don’t stop asking us. Even though it is disappointing when we have to say no, try to remember how much fun we have when we can say yes. We sure do! Sometimes thinking of the good times is what gets us through.
  • From the outside it might feel to some that we are selfish, or even lazy. We are neither of those things. We often use up all (or much) of our energy doing the things that we manage to do. Even though we may look fine and don’t really say anything, we are often more tired or in pain than you know when we’re doing things. A misconception which might happen with this one is that by letting you know about this particular point, we’re trying to lay a guilt trip. Nope! We are doing all of the things that we do with you joyfully and cherish every moment, despite those things. We just don’t want you to assume that it means that we feel fine and will be able to do the same later or tomorrow.
  • We want you to know how much we appreciate the people in our lives. The little things that you do, often without even thinking of it, mean so much. When you drop by with something to eat or call on the phone just to say hello, that can be the highlight of the entire day. There are times when we may not have the energy to talk on the phone, but just knowing that you called means a lot. When we do not pick up the phone, and may not return your call for a day or two, it isn’t that we’re snubbing you, so please never think so. Unless of course, we never return your call.  >:)
  • Most importantly, please remember that even when things get rough for a little while, that we’re still the same person that you loved yesterday.

I’m sure that there are many things that I didn’t touch on, but for today, these are the ones which felt most important to mention. It is my hope that this reaches the screen of someone who needs to read it. While most of us would not assume that we are owed any of the things mentioned above, I think it’s fair to say that they sure are nice.

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This Week’s #Vlog

What I Want You To Know…Never Give Up

While the flu is what I am recovering from at the moment, I have a few chronic illnesses and conditions which I’ve talked about from time to time here. Being sick has, of course, exacerbated some of the symptoms of my other conditions. My fatigue and pain levels have been higher than usual while I’ve been ill. For the past two weeks, all I could do each day was remind myself that it would get better and not much more. Thank goodness, my brother in law was kind enough to go to the pharmacy and pick up meds and juice for me…and my sister…yes, she had it too…which sucks. I don’t know what I would have done without him. If you read this post brother…thank you! I’ve still got some recovering to do, but at least I’m seeing some light at the end of the tunnel.

For the first time in my life, I have zero guilt over all of the stuff sitting there waiting to be done. This is big for me. Before the fibromyalgia, chronic fatigue syndrome, arthritis, immune issues, and degenerative disc disease got to the point that they constantly interfered with my life, I was a total type A personality. Now I’ve reached a certain level of comfort with being where I am at any given moment, instead of agonizing over where I used to be or where I wish to go.

What I want to help you to understand is that we can thrive from right where we are…it just might be different than it used to be or how we envisioned it in the past. For example, I used to work at a corporate job and was constantly on the go. As the years went by, I had to take more time off from work…and then a car accident totally tipped things over the top and the corporate world had to go. While my creative, metaphysical , oddball (happily so) self was never a good match for the corporate world…it paid the bills. Looking back, I wonder how in the world I managed to survive in that environment.

Speaking of environment…when I was younger I used to be very involved in environmental activism…putting together campaigns, doing public speaking, and traveling to conferences. When things really hit the fan with my health, I felt like I was without an identity. Even worse, I felt utterly useless. The reason that I am so candid about this is that I know that there are a lot of people out there who feel similar, for various reasons. I’m here to tell you that it gets better in time, and that there is still so much that you have to offer to the world. Do not let anyone make you feel any differently, including yourself.

In the years since I had to leave my traditional workplace, I have dived into my spirituality and creativity…worked on rebuilding my life. I’m not going to tell you that it has been easy, but I will tell you that has been worth every last bit of the time and effort. What I have found is that I am more truly in line with myself now than I have ever been.Trust me, there is a big learning curve. There will be times when it feels too daunting, and these are the times which teach us more than we could imagine. So what can you do when you can’t do what you used to do? Your answers will be different, but here’s what I’m up to.

I’ve just finished writing a novel which is in the editing process now, have had several articles published in an online magazine, the bare bones of a non-fiction book I started in November is sitting there waiting for me, I am perfecting a few forms of art which I have found an affinity for, and I also do spiritual work in the form of readings, energy clearing, and mentoring.  The financial part will come, I just know it. The most important part is to keep moving forward. I’ve gotten frustrated more than once…and have almost thrown in the towel. Each time though, I come back stronger, and with more knowledge of how things work best for me. Most recently, I discovered that I needed to put better boundaries in place, and I’m so glad that I saw the real problem. I almost walked away from everything I’ve worked so hard on in the past few years with my spiritual practice. Not gonna happen.

As for the environmental activism I have found some great online sites which circulate petitions (which make a real difference). I’ve also written letters to or called elected officials about key environmental issues. Last year, I was fortunate enough to be having a good enough day that I was able to get out and walk in the March against Monsanto. That felt great!

Granted there are times in which I am too sick to get much of anything accomplished for weeks, times in which I can only do one small task before needing to take a break…and I’m telling you this because it is important to understand that it isn’t always easy. The point is that each of us has things inside of us which we can still contribute…no matter how small it might seem…and it all matters. We all have our own set of passions, abilities, and gifts…and it is up to each of us to find what those are and find ways to put them to use. It might take longer…you might have to be more creative…there will be down times…but the rewards are great.

In the future, I’ll be putting together more articles about thriving from where you are. They won’t all be quite this wordy (but some of them will…I can get chatty). I used to write more about topics like this in the past and wish to bring some of that back. Why? Because helping others to regain a sense of purpose and dignity means a lot to me. I’ve got years of experience in doing this for myself and I want to share what I’ve learned. Most importantly, I wish to share with you my sense of hope. Thanks for taking the time to read this. Have a great weekend. See you next time.

This Physical Human Experience

The change in the weather as the season shifts from Summer to Fall is one that I welcome each year. There is something about the crisp coolness of the air, the changing colors of foliage, and the unique smell which only comes with around this time of year. As with every big weather change however, there is a downside for me, and that is a temporary increase in pain and fatigue levels. Knowing that Fall is arriving makes it easier for me to ride out the physical symptoms.

I’ve written before about the fact that I have been diagnosed with chronic fatigue syndrome (which has been renamed) and fibromyalgia as well as spine and nerve problems due to a car accident and autoimmune issues. I do not define myself by the conditions that I have. The reality is that I do have to live and work around and with these conditions and the many symptoms which come along with them. It took me a while to learn to work with myself instead of against myself when it comes to this. Now, I’m a little older and I’d like to think a little wiser, so I no longer think myself overly weak when I need to stop and take care of myself.

The trait of being Highly Sensitive, which is a term coined by Elaine Aron, who has studied and written extensively about this group of people which makes up about 20% of the population, while not related to my conditions, definitely makes self care even more important. You can find all kinds of helpful information on her site. Not long ago, I began thinking about how overwhelm can feel in my physical body as a highly sensitive person, and realized that when I’m feeling really fried, that it either feels very similar to a flare up of my conditions or actually triggers one. I recently attended an online “Soul Party” as part of Jodi Chapman’s Soulful Life Sanctuary, and the topic of this month’s party was being highly sensitive. It was such a warm and positive experience…being in a welcoming and safe space to talk about this trait with others who share it! I’ve received many benefits as part of my membership in this wonderful community of people. There’s a lot of comfort, sharing, and learning to be had there. It isn’t a group only for or about high sensitivity…it is for anyone who is looking for support and assistance in connecting more deeply with themselves. Click here to check it out.

It is important to note that according to Elaine Aron, being a highly sensitive person in no way indicates that you are more likely to have one of the conditions listed above, so I am not connecting the two. Rather, I am talking about my own life experience of having these conditions as a highly sensitive person. As Elaine Aron states on her site in article, it is important for HSPs to take care not to be over stressed or stimulated in order to minimize susceptibility to illnesses such as the ones listed above. Avoiding those things are crucial to a comfortable level of functioning for an HSP, regardless of whether the person has a health condition.

Okay, now that all of that is out of the way I will get to the actual point of the post…which is the physical human experience. I used to buck against the reality of my body and this attitude caused me to take actions which exacerbated things and stood in the way of my happiness and success. While I am still taking actions to minimize the intensity of my symptoms…I am no longer pushing myself to the point of injuring my body, spirit, and psyche. I am learning to live within the scope of what works for me, so that I can thrive…as myself.

Letting go of the preconceived notion of what success “should” look like has been such a help. This is true for everyone…not just someone who has a health condition or who is a highly sensitive person…everyone! We all bring our own unique gifts and qualities to the table, and frankly, the world needs all of them. Some of us bring physical strength and high energy levels to achieve the things which require those abilities. Others of us bring creativity and sensitivity to the table in order to offer things of that nature to the world. All of these things are important, and it’s time to stop shaming ourselves and one another for not being something that we aren’t…and that we recognize the value of what we each bring into the world.

When allowed to shine, the light of every type of personality, ability, and gift radiates brilliantly out into the world and is a benefit…an asset. I have come to understand that my sensitivity and even my health conditions are a part of my physical human experience. It is because of these things…not despite them…that I am who I am. Some experiences can be difficult, but they also provide great gifts when we allow ourselves to see them. Earlier today, I was talking to someone and said to her that I realized that I came here to have a physical experience and that my job wasn’t to beat myself into perfection…my job is to be me. Her response to me was that all things about me, are a part of the reason why I am able to offer to the world what I came here to offer. Pow!

What Do Dreams Coming True Look Like?

It has been a while since I came here and really talked about something. Lately, there has been a lot of discussion with friends about dreams and goals…only these days, the conversations are framed a little bit differently. I thought that it would be good to talk about this here, because many of us have been missing out on something pretty important. How many times have you thought about your aspirations in terms of someday? If you are anything like me, you lost count somewhere around a million.

My life took an interesting turn back in 2005. I’ve mentioned this on other occasions, but it is important for this post. Right now, I am 42 years old…almost 43…and have had health issues for most of my life. After almost dying at the age of two from pneumonia and contracting mono when I was around thirteen, I never really made a complete recovery. After many years of being sick with no explanation for it, I was finally diagnosed with chronic fatigue syndrome, otherwise known as myalgic encephalitis at the age of 23. It was always a little difficult for me to keep up in many ways, but I managed to do pretty well and had several remissions through my twenties and early thirties. I was also given a diagnosis of fibromyalgia. Honestly, I wonder if the two conditions aren’t just different manifestations of the same thing…but I digress. In 2005, I was rear ended at high speed and that was the event that changed everything.

For several years, despite the doctors telling me that I couldn’t, I continued to work…or at least attempted to. Not only did the accident exacerbate the CFS and Fibro, but it also created new issues in the form of spine and nerve conditions as well as arthritis. Well, I’ll admit that I sunk into a pretty big slump for a few years once I had no choice but to admit that life as I knew it was over. What does all this have to do with dreams coming true? I’m about to get to that. I’ve always loved writing and creativity. When I was a young girl and a teen, I dreamed of becoming a writer and living this amazing creative life. The images of what I dreamed of when I thought of that life are still vivid in my mind.

After things settled down for me…with my acceptance that my life was altered…I began to write again for the first time in over 15 years. Then about five years ago I began sketching, which led to picking up a paint brush about two years ago. Let me tell you, I always knew that I loved creative things but had no idea how much passion I would find until these past few years. The one thing that didn’t change however, were my feelings of failure in some aspects…the sentiment that maybe ‘someday’ I would be living my dream. Despite all of the joy and passion I was able to feel while creating, it was like I was living this shadow life of despair at the same time because physically things are so altered.

Well, just a few months ago I was sitting here feeling a little down about things…finances and the fact that I have been going through a lot as far as health issues go in the past year. Then I looked around my apartment and it hit me. It isn’t how I envisioned it when I was a kid, but I am already right in the middle of living my dream. My paintings cover the walls, I have notebooks and computer files full of writing…I never have to look far to see a manifestation of the creative spirit. Then it occurred to me that even though my health gets to me sometimes, that most of my days are good ones. I may be in pain but I am essentially happy. There is a lot of joy in my life.

More than anything I realized that the steps that I am taking and the work that I am doing are the very things which can bring the rest of my dream into reality. It isn’t like best selling authors or successful artists just wake up one day and bang out their fortune on their lunch break. So, now when I find myself feeling a little sorry for myself I remember…I am already in the midst of my dream. It isn’t out there somewhere or coming someday…it is now. Each and every day, I wake up and have the opportunity to do the things I’ve always dreamed of.

In what ways can you see your dreams coming true…even if they look different than you thought they would?

Regular Post…Update

Once again, I’ve been terrible about keeping up with regular posts. The A to Z Blog challenge is winding down, so that should help. Things haven’t really been that exciting around here honestly. The past week wasn’t the best week as far as the Fibromyalgia goes, but I’m feeling much better today…thank goodness! I’ll admit that part of how terrible I was feeling was psychological. For the past month, I’ve been having issues with vertigo off and on because of the terrible allergy season this year. It seems as though that is finally winding down, which is a very good thing because I’ve basically been grounded for the past few weeks. When I went to the doctor about the ear thing, she ordered me not to drive until it cleared up and not to drive if it comes back.

So, I’ve probably only driven twice in the past two weeks and where I am currently living there is no public transportation, so there has been some big time cabin fever going on around here. Then last Friday I had asked my doctor if I could stop taking a medication which she gave to me for neurological pain because I didn’t think it was helping anymore. She said that I could stop. Let me tell you…that was a huge mistake on my part and I resumed taking it yesterday. Obviously it was helping a lot more than I thought! Plus I was letting my temporary physical location get to me in the worst way. Even though I know that I’ll be leaving in a few months, the combination of…well, everything…sent me into a tailspin. My sister deserves a huge thank you for snapping me out of it last night. Thank you for helping me last night sister. Thank you for putting up with my whining recently. Thank you for being your sweet, wonderful self!

She gave me a very gentle kick in the hiney and reminded me of how temporary this all is. I know that it’s coming and I need to just be patient. It’s unbelievable how much I am looking forward to this move. The coffee shops, the bookstores, the live music, the drum circle, all of the awesome shops, spiritual groups and lectures of the sort that interest me, a knitting/crochet/needlework circle, art everywhere, organic food, environmental stuff….oh yeah…it’s what I’ve been looking and yearning for…well, forever it seems. After my divorce, I moved back to my hometown and let’s just say that it’s been a long three years! I need culture…arts…music…quirky surroundings…almost as much as I need oxygen and this place just doesn’t cut it. It took me a few years to heal over from the divorce, but now I’m beyond ready to really live! It seems as though the healing process has taken me even further into the creative side of myself and my desired direction in life has changed drastically…which is good. Trust me when I say that I do not miss the corporate world at all!

Other than keeping up with the blog challenge and my pity party, I’ve been trying to knit a blanket for my best friend’s upcoming baby. Let’s just say that it has been slow going. I’ve messed it up and had to frog it out twice! The first time, I was almost to the halfway point. That one hurt! The second time, I wasn’t too far at all so even though it aggravated me, it wasn’t that bad. I’ve worked on it for a few hours today and so far so good. It’s going to be gorgeous when it’s finished. I’ll be sure to post pics. I’ve also been getting a few sketch ideas over the past few days, so that will probably coming up soon. I’ll be sure to post that as well. Sometime this week, I am pretty sure that my Aunt and I will be getting together to work on our project. It’s been stalled over the past few weeks due to factors in both of our lives which just made it impossible to get together. This is something I’m looking forward to a lot!

 The editing and finishing of the novel is still on hold and more than likely will remain that way until after the blog challenge. I do have to say though that even though I haven’t touched the novel since the challenge began, my characters are stirring around in my brain which is a very good thing. I wasn’t quite sure how I wanted to end the story until this week. Of course there is still the matter of writing it, but that will come in time. Well, now you know what I’ve been up to other than the challenge…I guess marinating is the best way to describe it.  How have all of you been?

Becoming Your Own Best Advocate

I’ll admit that I’ve been pushing too hard physically over the past several weeks and even though I have felt it creeping up on me, I have kept pushing. Not as much as old me would have, but way more than should have been. Yesterday was a really rough day physically for me, but there was something which I had promised to do for someone, so that’s what I did. It was not physically challenging in the least, thank goodness! No, I’m not going to discuss what it was because I do not find it necessary to do so…for several reasons. Just know that it was very important and that I do not regret keeping my promise.

After spending the day doing what I needed to do, there was nothing that I wanted more than to go home and crawl into bed. Instead of that happening, there was a situation which arose. I faced remarks which belittled my health issues. A person said to me that they did not want to see me spend a whole day resting in bed…in a disparaging tone. When I asked why, this was the answer. “Because it just isn’t a good thing to do. Lying in bed makes me hurt even worse. It’s better to be up and doing something”. I am proud to admit that at least in this instance I found the middle ground between smiling and saying nothing (haven’t done that for a good, long while) and blowing up. Here was my response:

“See, these are the sort of remarks that really piss me off. People, especially ones who should know better, who like to ignore the fact that there is anything wrong with me, no matter how many times it has been explained. You do not live in my body…just as I do not live in yours. My doctors have told me that there are times in which I will need to spend an entire day or so resting, unless I want to land in the hospital. This is the last time that I want to hear this sort of remark. It is not acceptable, not to mention degrading”. After making my statement, I grabbed my sweater and headed off. I will not explain myself any further to people who know the situation. There will be no more guilt on my part. No more attempts to get anyone to understand. The other beauty of the way in which I now view myself is that even though I admit I feel a good deal of anger when faced with this sort of thing from people who know the facts…the anger does not take over nor does it last long.

I have learned to say what I need to say without leaving any room for interpretation or questioning, and I move on without holding on to negative feelings. It’s learning the difference between your own stuff and other people’s stuff. Anyone else’s grasp or lack of understanding is their stuff to deal with. My stuff is explaining my position and taking care of myself. It’s that balance of give and take between human beings with everyone involved doing their best, without causing harm or injury to themselves. Even if no one else knows at times that I am doing my best, that’s okay. I know the truth…the rest is their stuff.

Sometimes it is very difficult to move beyond the denial and even guilt which arise when you are no longer able to do the things you once did. It has taken me six long years to fully move beyond those feelings, which makes it important to me that I encourage others dealing with them. As I was grasping the reality of what it all meant, there was a long time in which I felt guilty about seeing my own needs as needing to take a place of priority. Even though I knew that I was literally endangering myself…the guilt of standing by without physically pitching in with certain tasks overrode what I knew to be the truth as told to me by three neurologists and a rheumatologist. The fact of the matter is this.

Since very early adulthood I’ve battled with Fibromyalgia and Chronic Fatigue Syndrome. While I lived my entire adult life in a cycle of oftentimes self induced flares (which wasn’t real wise), which could have created serious issues, it wasn’t as severe a threat as I face post rear-end car accident. The threat which looms over me now is the real possibility of paralysis from the neck down if I am not very careful about the way in which I use my body. This does not stop me from living…no way! It just means that I can no longer safely perform certain manual tasks. I have known this for six years and have spent the past two years slowly allowing myself to accept it without guilt.

So, if anyone reads this who is facing similar issues…please come to terms with it before it’s too late. Sure, accidents could happen…which is something not within your control. However, choosing to endanger yourself because you feel guilty is another story. I made the wrong choice for several years and feel thankful that I was able to escape the worst possible consequence of my decisions. I know…trust me… how hard it is to recreate your life. However, I have learned that the voice inside your head telling you that your life is essentially over if you can no longer do the things you once did is a big fat liar. There is a wonderful, yet different life on the other side of those feelings. Perfect? Hell no, yet it really is wonderful. We all deserve to have a sense of acceptance of ourselves, as well as to live a life which suits and brings out the best of our abilities. Don’t ever forget that. You may not be able to offer the same things as before…but you still have a lot which is just as, if not more amazing than what you were previously doing.