For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: chronic illness (Page 3 of 13)

Accepting Chronic Illness

February 1, 2016 / / 15 Comments

I am tired.

For those who know me, that is not a surprising statement to hear. After all, I have a chronic autoimmune illness; one where fatigue is one of the most prevalent symptoms. Tiredness is as much a part of my daily life as food and sleep. Most of the time, it’s a given.

But lately, my tiredness is more than physical. It’s mental, emotional, and spiritual. It’s the type of tiredness that makes me want to stop fighting the daily battle of living with Sjögren’s, and the host of other medical issues, that have plagued me over the years.

Is it tiredness?
Or is it depression?
Or grief?

The label isn’t important to me. Actually right now, there’s not much that is important to me because all I want to do is sleep. Or veg out in front of the TV for days at a time. I get fleeting moments where I see a glimmer of my usual self – the self that enjoys the living hell out of life on a daily basis because she knows that life is short. And precious.

There are also moments, hours even, where I can put on a smile and appear to the outside world as my usual self. I reserve my energy for this act when I am with people who really matter to me, because I cannot help but think that those precious people deserve so much better than a morose, down-in-the-dumps shell of a person.

Or at least I did think that. Now I am beginning to wonder, what would be so wrong with being myself all the time and letting people really see me? All of me. Why do so many of us feel this burning desire to pretend? To be who we are not in order to protect our loved ones? When you live with a chronic illness day in and day out,there is only so much energy to go around. Do we really want to waste any of it pretending we are fine when we are not??

Many of you know that last September, I started a new part-time job as a school nurse. It was my first venture working regularly since I went out on disability in 2008. I had been working as a substitute school nurse for about a year and a half and I wanted to push myself to advance to working part-time, fourteen hours a week. Surely that was manageable I thought.

It wasn’t.

There were a lot of extenuating circumstances during my new employment. My gallbladder gave out on me and I suffered for months before I finally went in for surgery. I was also working towards my school nurse license, which took a lot of my energy and time. I was experiencing neurological symptoms and then a worsening of my pain and fatigue issues. For a variety of reasons, I found this new place of employment MUCH more stressful than my other job where I sub at. I enjoyed what I was doing at the part-time job, but the price I was paying physically was no longer manageable. Actually, it was never manageable. The only reason I made it all the way to January was because I was so damn determined to succeed.

That’s really the root of the problem: my drive to succeed. After going out on disability, I spent YEARS trying to figure out how I could get back to work in some capacity. While out on disability, I started a blog and wrote a book. Some people would call that working but honestly, I do not make a living doing it. And then when I did start working out of the home (as a substitute school nurse), I spent even more energy figuring out how to work part-time on a regular basis. But that wasn’t going to be my end point. I had a plan. I was going to gradually build up to being back in the workforce full-time, and nothing was going to stop me.

Especially not Sjögren’s!

But it did. Despite a WONDERFUL three week run on prednisone around Christmastime, it all began to unravel for me physically and I made the decision to give my resignation with the caveat that I would still be interested in subbing at this school as well.

I was struggling so much in the weeks leading to my last day that when my last day came, I felt nothing but relief. However, I wasn’t prepared for all the realizations that would come with leaving a job that I had worked so hard to get.

Looking back, it’s obvious to me now that with my medical needs, this particular job was not the right match for me. But I also realized that no matter how hard I pushed and how badly I wanted to succeed, my illness was not going away. I think that a part of me thought that as long as I TRIED hard, it would all work out. My symptoms would become more manageable. I just needed to stay positive and optimistic. I just needed to do more self-care to make my work days more doable. I needed to have faith in God and then I would succeed.

That’s the way I have always managed having Sjögren’s syndrome: I stay upbeat and I always continue forward, constantly trying new treatments and working on ways to manage my symptoms. Be courageous. Be brave! Don’t give up. Keep your chin up!

No longer.
Or at least, not right now.
Because I am so damn tired.
And oftentimes, chronic illness is just a bitch.

I have been living with Sjögren’s for at least eight years now. I do what I’m supposed to do to manage my illness. I do what I NEED to do. So in some ways, I have accepted my illness. But I am now beginning to understand that I have not truly accepted my illness. Not really. I have still been clinging to the hope that I can overcome it and go back to living a life similar to the life I was living before those first symptoms appeared. Leaving my job has helped me to see that it is good to push your limits and to have goals, but there is also something to be said for accepting yourself for exactly where you are at in any given moment.

This brings me to now, this day. A day in which I woke up in the morning and the first thought I had was that I wish I hadn’t woken up. Because lately, waking up means facing another day of challenges that drain the living hell out of me. I have to force myself to not snap at people. I cry at the drop of a hat. It’s hard for me to be around people because they are not going to say what I need to hear. What do I need to hear? I need to hear that it is OK to be sad. It is OK to want to lie in bed all day and not want to do anything. Maybe not forever, but at least for a little while. I need to hear that it is OK to mourn the person I used to be. Because let’s face it, that woman is gone. I don’t want to hear that I can do anything I set my mind do because the reality is, I cannot. Maybe, at the end of the day, it’s not so much about what I need to hear from other people, but rather, what I need to hear from myself.

Maybe acceptance and living with a chronic illness is less about being brave and more about being authentic. I think for me, true acceptance would mean being OK with where my body and mind are at on any given day, without judgement from that inner critic that says I need to be better. Or stronger. Acceptance would mean valuing what my body can do and not what I wish it could do. It would mean finding a way to live in a state of grace no matter what physical challenges lie in front of me.

Authenticity.
Acceptance.
Grace.

Low Dose Naltrexone

October 19, 2015 / / 0 Comments

This is not going to be a lengthy entry. It’s one I wasn’t even planning on writing, but I wanted to share something with you all. I get e-mails from time to time from readers asking about how things are going for me with using low-dose naltrexone (LDN). My LDN posts also typically get the most hits.

I think LDN is one of those tricky treatment options where you don’t know exactly how much it is helping until you aren’t taking it. It is also tricky in regards to managing the side effect related insomnia that comes with it.
Well, it took me the better part of two years or so, but I was able to get around the sleep issue just by titrating my dose up slowly over the course of about eight months.
Then I came off it.
And it’s been hell.
Friggin’ nightmare actually.
Long story short, I had to stop taking it because I need gallbladder surgery. Because I started a new job the exact same week I was told this, I am putting the surgery off. They wanted me to have it in early September and it’s scheduled for Thanksgiving week. You have to be off LDN for 1-2 weeks before surgery and/or taking narcotic pain medications. My surgeon was concerned that if I urgently needed to get my gallbladder out sooner than November, he wouldn’t be able to do the surgery if I was on LDN. 
So I have been off it for about six weeks now and all I can say is…
I miss it.
Like, really bad.
I thought because I was still having pain while on it, it wasn’t working well. Not true because now, my pain levels are on a much worse level, like pre-diagnosis level. There are several other factors affecting my pain levels, but stopping the LDN was a huge contributing factor. I am trying some other pain control alternatives to get me through.
If you don’t know about LDN or are skeptical, please check it out. There are a ton of resources online. I have written several other blog entries about it and you can access those by going to the right side column of my blog and clicking the label for LDN or low-dose naltrexone. It is not a miracle cure for Sjögren’s, but it is definitely a vital component to my treatment plan.

And relatively speaking, it’s cheap.
And safe (just don’t take narcotics at the same time).
And completely underutilized because well, the health care industry cannot make a fortune off of it so they blow it off as a snake oil remedy.

Go check it out.

Making Life Work

August 11, 2015 / / 6 Comments

So it’s about 4pm on a weeknight and I just finished cooking part of tonight’s dinner. And, that’s late for me. I’m usually done earlier than 4pm, depending on how much I am cooking.

I know, it’s weird.
And I am finally OK with that.

We don’t eat supper that early. Usually we eat anytime between 5-6:30pm. For me, the earlier the better, but my husband does have a regular full-time job and well, he works until 5pm, at least. So it is pretty common for me to pre-cook dinner and then just nuke it when we are ready to sit down and eat. Because the reality is, if it doesn’t get cooked early, there may be no supper. Except maybe cereal. Or take-out. And well, a healthy eating plan doesn’t involve much of either of those. I don’t know what people with chronic illnesses did before the invention of the microwave!

This is just one of the many accommodations I have had to figure out and accept since I realized that my energy levels are going to be unpredictable…like, for the rest of my life. Pre-Sjögren’s, I would have the typical mid-afternoon energy slump like everyone else, and then would bounce right back. But autoimmune disease redefines the meaning of the word fatigue. We are talking mind-numbing, body stopping, I can’t take another step or blink my eye kind of exhaustion. There is oftentimes no warning and when it hits, look out. For some of us, it’s a constant, pervasive kind of tiredness.

In the past, I would ignore the warning signals my body was attempting to give me. I was too busy trying to function as a person without an illness, in a busy world where chronic illness is usually not accepted or understood. In a world where the motto is “go, go, go”, no matter what the price to our bodies may be. Just keep caffeinating. Just keep doing. And then I would get frustrated that my body couldn’t keep up.

As the years go by, the fatigue issues has become more of an issue for me during the day. I started to notice that in the mornings, when many people with autoimmune illness are at their worst, I would be at my best. Maybe not always pain-wise, but definitely energy wise. I noticed a trend when I started working that there is a very specific time in the afternoon when I start to go downhill. When I sub (as a school nurse) at the high school, I have the most energy. Those hours are from 7:25am to 2pm. The elementary school is the most difficult for me and those hours are 8:30am to 3:15pm. I notice that I can predict a significant increase in my fatigue beginning around 2pm.

That is the first shift in energy levels. The second starts sometime after 5pm. It’s all downhill from there and by 6pm, I render myself pretty useless. I am typically in my pajamas by suppertime. Nighttime activities have become harder and harder. I recently dropped out of a twelve week choir class because the 7-9pm weekly class was killing me. Evening church activities, conference calls, and meetings, for various things, have become something that I have had to rethink in terms of priorities. Up until very recently, I continued to do these things, despite the obvious detriment to my overall health.

There are some occasions where I can push past the fatigue to get myself to an evening event and even enjoy myself. I have come to realize that this is usually during an event I am really excited about such as a friend’s party, concert I’ve really wanting to see, etc. After a little research on that, I found out that the chemical hormones that are released when someone is excited about doing something actually have a positive influence on a person’s physical well being. Honestly, I think that is the only reason I can get myself to an 8pm concert! However the ramifications of those evening events are high, sometimes too high.

I have recently decided that for now, I am going to start scheduling my appointments, friend dates, etc.around what my body is telling me, as often as possible Nowadays, I wake up and am ready to roll between 6:30-7am and by 2-3pm, I’m done. Instead of pushing past those limits every single day, I’ve started to respect them. The problem is, the rest of the world doesn’t always respect them or understand. Let’s face it, in this country anyways, most social functions take place after 5pm and on weekends.

My husband and I go to a lot of concerts together and honestly, sometimes it is incredibly difficult. It will say that the concert start time is 7 or 8pm when in reality, the main act doesn’t get rolling until 9pm. We recently went to an afternoon concert that started at 2pm and it was truly one of the best times I have had with him and some other friends of ours. I was alert and able to concentrate. I wasn’t so focused on how exhausted I was and my pain levels was manageable. I had a lot of fun. Same thing for a recent afternoon Red Sox game, which started in the afternoon instead of the evening. A few hours difference can make or break a day for me and just as importantly, make or break the rest of the week.The running joke between my husband and I is that whenever there is an evening social event, no matter what time it starts, we have to be out of the house by 4pm so I can keep some momentum going!

Another example is from this morning. I had a close friend over for a visit. She’s an early riser as well and we were eating breakfast together and chatting at my house at 9am. I can actually remember everything she said to me because that mind numbing fatigue hadn’t set in yet.

I know there are going to be exceptions and I will occasionally have to make concessions. And,I don’t expect the world to completely function according to my illness needs. But that being said, I have recently realized that I also have the choice to say no. Last week, I think I used the word “no” more often than in the previous six months combined. But, that’s a topic for another post! The point is, I get to choose what is best for me. If it sometimes, or often, means missing out on things I would normally want to attend, then so be it. The right people will understand.

I recently said something to my husband about this. It was a Saturday night and we were home together watching TV. It was about 7pm and I couldn’t hold my head up any longer. So I asked him if he would go to bed early with me. I’m not usually sleeping at 7pm, but I am resting in bed. I felt bad because it was a Saturday night and that had been happening a lot lately. And I told him that…that I felt bad he doesn’t stay up late like he used to before we started dating, because he wants to spend time with me. His response was profound and basically he said that altering his lifestyle/routine to accommodate me was better than not being with me. Again, the right people will understand.

Since I’ve started listening to my body more and making adjustments, I have noticed that I am much more productive during that 6:30am-2pm time frame. Because I am rested. It’s not a lot of time to work with and once school starts in September, it will be even much less so. But, the house has been cleaner, I’m getting more errands done, and I am spending more time at the gym. I am more tuned in to people and I am remembering more of my conversations with other people.

Is this the way I would have chosen to live my life? No. I’d rather not have Sjögren’s at all. I’d rather live a life like I used to: sleeping eight hours a day and then being able to function throughout the remaining sixteen hours, without exception. But rather than being a victim, I’m working on figuring out what DOES work for me. You can do a lot of living in just seven hours a day. And honestly, many days, it’s even less than that. My days may not have a lot of quantity, but they most certainly have a lot of quality.

Divorcing Sjögren’s

May 1, 2015 / / 2 Comments

I cannot believe I didn’t blog the entire month of April. I knew it had been a while, but I didn’t think it had been that long. I sat down this morning to do some writing and look over the blog design, as well as my Thoughts and Ramblings Facebook page, and I realized how much I have missed writing. I also realized that last month was the FIVE year anniversary of this blog!

Lots of stuff has been going on. For the past couple of months I have been working vigorously on a few things to help improve my quality of life, physically, mentally, and spiritually. I will be honest, it has been super tough. It usually is when you take an honest look at who you are, where you came from, and where you want to be headed. It has meant being rigorously honest with myself and well, let’s face it, that can really suck sometimes. However, I am now seeing the benefits of all that hard work and I am excited about the future.

It can also be tough heading into uncharted territory in regards to my health. I have had some neuropathy issues going on as well as some possible autonomic neuropathy issues. I am currently on an aggressive alternative medicine course to try and manage those symptoms and if that doesn’t work, I already have a very precise and well thought out traditional medicine plan worked out with my rheumatologist in terms of testing and figuring this all out. My guess is, it will be a combination of both alternative and traditional medicine that will help me deal with this new part of my Sjögren’s journey.

The good news is that I realized yesterday that for the first time since the autoimmune journey began around 2007/2008, this is the most confident I have ever felt with every single one of my medical providers. I have had some great doctors in the past, but at this point I feel like I am being completely heard and I am an active partner with every one of my medical providers. I have ten providers (both alternative and traditional) that I am actively seeing now and I don’t experience the anxiety I used to have. As I have talked about before, I made some difficult decisions last year about switching some of my providers in order to obtain better care and it’s nice to see that those decisions worked out for the best.

Besides the neuropathy pain and dryness issues, I am actually holding my own. My joint pain and fatigue have improved dramatically. I am certain that  the improvement in the fatigue is related to someone FINALLY listening to me and following through about my thyroid and making some medication adjustments, as well as a change in my nutrition. The thyroid is not perfectly regulated, but it is much improved. Everybody kept blaming the fatigue solely on the Sjögren’s when I have also had this longstanding thyroid issue since I had radiation to my neck a million years ago.

Besides working at my nursing job more recently, one of the other reasons I have been off the blog grid is that I have been working hard at changing the way I deal with Sjögren’s and my health. That has been a gradual process for a few years, but I have been looking at it much differently lately. I think I have blogged before that I see a therapist who has experience in dealing with chronic illnesses and we have definitely made progress.

However, things kind of got to the point a few months ago where I was just sick and tired of talking about this illness all the time. I wrote a book about it, I talk about it at appointments all the time, and I was blogging about it a lot. Thoughts and Ramblings, and its associated Facebook page, is not all about Sjögren’s or even autoimmune disease, but that’s the direction it happens to take because so many of my readers have autoimmune illnesses and it is a place to share and exchange good information about the illnesses and their treatments.

And that’s not going to change; but I was at a point where I needed a divorce from Sjögren’s for a while. We all know that it’s more like a separation rather than a divorce, and even the separation can only be partial because this illness invades every aspect of our lives. But I was able to find some separation. I stopped complaining about all my symptoms either on social media or to my family/friends. I stopped doing follow-up appointments with doctors just for the sake of having a follow-up appointment when things had been stable in that particular area. I stopped researching stuff online and lessened my visit frequency to the online Sjögren’s groups. I still took my medications and attended necessary appointments. I was still spending about two hours a day dealing with the illness and its symptoms. But two hours a day was better than four!

I decided that for now, I am not writing another Sjögren’s book.

I felt guilty at first because I know this blog, the Facebook page, and me as an individual have a lot to offer to those suffering from autoimmune illnesses. And, they (and I) will still be here. But my brain cannot be Sjögren’s focused all the time for the rest of my life. I found that when I did do this separation, it was a very good thing. I pushed myself harder, especially at work and other projects, and I found that I can be of use to this world in other ways. I also found that my anxiety lessened significantly, I wasn’t as fearful, and I could cope better with the physical challenges that did come my way.

I have been criticized in the past (even by a person with Sjögren’s), and somewhat recently, for some of the things I say and especially write, in regards to keeping a positive outlook when dealing with a chronic illness. The feedback mentioned that I may not always be realistic in how miserable this illness can be and that not every autoimmune story has a happy ending or a positive lesson to teach. Or I’m told I must have a mild case of Sjögren’s because I am upbeat. I tell them to go read my blog for the past five years and read about my journey. My attitude and disposition is inversely proportional to my physical experiences. I have a positive attitude most days, not because I don’t suffer or struggle, but because I actually get to be alive.

And loved.
And I get to love back.

I know many people may not want to hear this, but I think many times, myself included, we get ourselves so wrapped up in our illness that we don’t see any other possibilities except to be miserable or be a victim. And you know what? I get to do that sometimes. I get to be upset. But the problem is we take on our illness as our identity instead of it letting it be a part of who we are just like being a nurse or a writer is part of who I am. Rather than living my life as a victim, I want to live it as just me. Chris.Those of us with Sjögren’s do not corner the market on pain and suffering. Those of us with autoimmune diseases do not have exclusive rights to the pain and suffering in the world. We all have something, whether it is physical, emotional, or spiritual pain. It has been that realization that has enabled me to recently step out of Sjögren’s and step into helping someone else. It has enabled me to step out of Sjögren’s and step more into the world.

So what can you step into today?

Loving Someone With A Chronic Illness

March 11, 2015 / / 2 Comments

This post is being prompted by an incident that occurred last night. One that unfortunately, happens more often than I would like. And much more often than my husband would like. As I have talked about previously on this blog and on its Facebook page, I have been struggling with some issues regarding my feet. The issues started last July and after seeing a doctor, I was diagnosed with plantar fasciitis and tarsal tunnel syndrome in both feet.

The short version of the story is that I have been through months of physical therapy, countless doctor’s appointments, night splints, trigger point therapy, orthotics in my shoes, the list goes on and on. It is likely that Sjögren’s is a contributing factor and possibly the cause of this. Starting in December, I decided, after much consideration, to consent to cortisone injections in both feet. I had one in each foot with some relief, but the relief was only temporary. I then had a second injection in my right foot two weeks ago today and after a few days of some relief, things went from bad to worse, and pretty quickly I might add.

My right foot is now at the point where the tarsal nerve is so messed up and irritated, that a good part of my foot is numb. I am also getting little electric-like sensation from time to time and some pain. I am scheduled for an MRI at the end of this week and have been given strict orders from my doctor to stay off my feet as much as possible, with the exception of going to work. Luckily, I only work about two to three days a month for six and a half hours at a time. I was told absolutely no exercising or long distance driving, and I had to give up the one thing that always helps my stress and that is yoga.

So after working a regular shift at the school yesterday, I started with some pain around 5pm that by 8pm, had me reduced to tears. While I figured it was good that I could actually FEEL something in my foot, the pain became unbearable. Despite how much I go through with Sjögren’s and pain, it is rare for me to end up in tears over it. The pain medicine I could take would likely keep me awake all night, but I decided to go ahead and take it, as well as some heavy duty sleep medication that I save for emergencies like this. Today I woke up rested, and with a numb foot again. But, crisis temporarily under control.

My husband was with me last evening and I have to say, he did a fantastic job of helping me through the evening. It is so hard for him, I know it is. We laid in bed together watching TV for several hours while I worked through this incident. Actually, WE worked through this incident together. However I know it is hard for him because we have talked about this issue enough for me to now understand how difficult it is for him to see me in pain or in a really bad way.

I didn’t really know this or get it when we first got together…how much he struggles when things go bad with me. I didn’t know because he is so stoic and calm. He always tries to cover his fears for my sake. But I know. Now I do anyways.

As we have grown together as a couple, our talks have helped him to understand my needs and what works for me. And the talks have also helped me to understand some of what he is going through when I am having a medical crisis of some sorts. And what works for us may not work for every person with a chronic illness or the person that is trying to care for them or help them.

Last night, like all the other times recently, he really got it right. Trial and error I suppose. And some really good communication on both our parts. For example, when I am in that much pain, I want to be held, but not too tight. Its hard for me to have the TV too loud or too much stimulation around me. I also need some type of physical distraction so what he does is he gently rubs my head, or massages my legs, or some other physical touch that helps my brain distract from the pain that I am experiencing. As long as it doesn’t involve the part that is actually hurting.

Sometimes.

And other times, it does help to touch the part that is hurting, although with nerve pain like I had last night, that was not the case. So how does he know? He asks me. And I am direct in telling him. And it works. And it works when he gets out of bed for the third time to get me the Motrin I forgot to take when I was up the previous time. And it works when he distracts me with ridiculous jokes or stories.

He also listens intently to what I am saying about my pain experience, if I even want to talk about it which if I don’t, we have quiet time. When I talk about it, and he listens, he helps me figure out what the best course of action to take. For example last night, I was trying to decide if I should go ahead and take the pain medication because if I did, I would also have to take something to help me sleep. Otherwise the lack of sleep would worsen the pain cycle. However my husband knows that I am very careful about taking possibly addictive substances like this too often. He helps me think it through out loud to determine if yes, this is necessary or no, I can wait it out and see what happens. Last night, it was necessary.

Its not easy loving someone with a chronic illness.It takes an incredible amount of love and dedication to live this lifestyle each and every day with someone. One thing that I know has helped my husband is that he attends SSF support groups with me. Not only does it give him an opportunity to hear what it is like for other people to live with my illness, but it gives him a chance to talk to other partners, spouses, and caregivers about their experiences. At the last support group meeting we went to, he mentioned to me, after talking with other spouses, that he didn’t realize how many Sjögren’s patients also have a difficult time going out in the evening because by 6pm or so, they are ready for bed. Going out in the evening is a very difficult thing for my husband and I because I am absolutely exhausted and ready for bed. It takes a lot of preparation and pre-planning on my part to get myself out of the house in the evening. And, a lot of rest beforehand. Because he is aware of that, he makes sure to consult with me about activities, especially ones that just involve the two of us. For example, we don’t go to the 8pm showing of a movie. You will instead find us at the 1 or 2pm matinee, where by the way, we save a ton of money going to an earlier show!

I used to feel guilty about the effects my illness has on my husband. I think I even blogged about that very topic at one point. I no longer feel that way though. And the reason for that is simple:

I no longer let my illness define every aspect of my life.
At least most days.
And together, we have established and defined what our normal consists of.

And with the help of his love, I have come to understand that yes, life is more challenging for us than for many other couples, but despite that, I have just as much to offer a partner as anyone else. Throughout all this, all my husband asks from me, both on my good days and on my bad ones, is that I love him.

And I do.
Completely, and without reservation.

And that makes every single day worth fighting for.

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