Deep Darkness

I want this blog to be a place where others who struggle with mental illness and or chronic illness, can find support and encouragement, and also a place where others can learn about mental illness and chronic illness, but most importantly a place where suffering hearts don’t feel so alone. Mental illness and chronic illness have to be the most isolating things in the world. The up and down, the ability to function one day and the loss of function the next, and unless you’re the one feeling it, it’s very hard to understand.

I don’t know about you, but I find myself in a constant state of desperately trying to convince the world of the reality of the depth of the darkness that is mental and chronic illness. Sometimes I wish my illnesses could be seen on the outside, more than just looking tired or frail. Big, deep gaping wounds, bruises, dark circles. Sometimes I want to look as bad as I feel, my bloody body, scraping over glass and hot coals, unable to walk or stand. It might sound dramatic to those who haven’t experienced this kind of mental pain, but some of you are nodding as you read along because you get it. You really get it.

Some days the depression is so deep that I can’t even speak. I can’t even sit up. I can’t eat or drink. Somebody lays next to me, physically holding me so I’m not alone, so that I can feel something, anything, as the tears slide out of my eyes. Sometimes it’s a bit of a steady flow of tears as the hours tick by, other times it’s body wrenching sobs. And yet, I may have seen a friend or stranger just the day before or the day after. I’m sure I looked a little tired without make up and wearing sweats but I’m also sure I smiled and carried on a polite conversation. I may have been honest when you asked how I’m doing, I may have said, “I’m okay, I’ve been struggling lately with depression but I’m getting the help I need through therapy and treatments”. But they don’t have a clue. If I’m there, even if I’m honest, they can’t possibly grasp the depth of the struggle. If I’m not there and say, oh I’m sorry I can’t be there I’m not feeling well. Again, they can’t possibly understand what that means, because even the best intending humans can’t seem to grasp what they can’t see, and unfortunately you can’t see brain torture.

The reality is deep, dark, and ugly! Depression is so much more than a bad day or a negative attitude! It is when your brain steals your reality, fills you with only lies and pain, you can’t feel any connection to those you love most, you become so weak, you become numb to everything except pain, and you truly wish, even beg, to die. It is a beast. It is overpowering and all encompassing. If you are reading this and nodding along because your heart has felt this deep darkness too, I’m so sorry!

The thing we must hold onto is that the darkness does lift and even though, perhaps your deep depression, like mine, is often reoccurring. We are stronger then we feel. It’s vital that you have at least one person that you can tell the darkest parts to, someone who sees it with their own eyes. Someone who will laugh with you when you laugh and cry with you when you cry.

I’m going to end today’s blog with this poem I’ve recently come across that was amazingly accurate of my experience on this journey. The isolation is real and at times so painful it’s hard to continue on. But despite the suffocating depression, I’m still breathing and so are you!

Solitude

BY ELLA WHEELER WILCOX

Laugh, and the world laughs with you;

Weep, and you weep alone;

For the sad old earth must borrow its mirth,

But has trouble enough of its own.

Sing, and the hills will answer;

Sigh, it is lost on the air;

The echoes bound to a joyful sound,

But shrink from voicing care.

Rejoice, and men will seek you;

Grieve, and they turn and go;

They want full measure of all your pleasure,

But they do not need your woe.

Be glad, and your friends are many;

Be sad, and you lose them all,—

There are none to decline your nectared wine,

But alone you must drink life’s gall.

Feast, and your halls are crowded;

Fast, and the world goes by.

Succeed and give, and it helps you live,

But no man can help you die.

There is room in the halls of pleasure

For a large and lordly train,

But one by one we must all file on

Through the narrow aisles of pain.

Keep fighting,

Dawn Harris

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New Year

Man, the “New Year” is always a hard time for me. Well, holidays in general are always a hard time for me. Some of it, is that my depression worsens around things that are supposed to be joyful. But mostly, I always wonder if it’s the last year I’ll have with terminally ill daughter.

As I reflect back over the last year and over the last several years I am overcome with pain and sorrow for all that we’ve endured. I know people say to think positive, to look at the good not the bad, and while that’s good advice, sometimes the reality is that there is way more hard than there is good. I’m not saying this for self-pity or even for your pity, but more just as a reflection and acknowledgment that it’s okay to struggle.

Good things can happen in the midst of sorrow and in the midst of hard and it’s important to recognize those good things, to hold onto those good things, to remember those good things. But it’s also okay to acknowledge the big, the hard, the heartbreaking, the losses, the struggles, etc. You see with so much illness- chronic, mental, emotional, physical, there is a deep isolation, a lack of understanding. Not because people don’t care, but because they just can’t understand what they have not lived.

I am lucky enough to have a few really great people in my life, number one being my amazing husband, number two my family, they are learning more about me and I feel closer than I’ve ever felt to them before, not to mention they really showed up for me this last year at a time when I needed them the most. But it also hurts to have lost so much on this journey. So many people just don’t understand, either they don’t want to, or they can’t, people who burn out, people who walk away, people who question the “realness” and the “gravity” of what we face, and it stings to my core.

This last year one of my closest “friends” called me up out of the blue one afternoon and accused my husband of stealing over 20 thousand dollars from them during a construction project he helped them with over 3 years ago. She was so angry she said she didn’t even want to discuss it and that they had already contacted a lawyer and they were planning to take legal action. I’m not sure there is a word or even a phrase to describe the complete shock and hurt I felt. We went through every last shred of paperwork we could find from the job to find what they could possibly be misunderstanding but we couldn’t find anything. Now here’s the thing. This job did go bad, I mean everything that could go wrong did go wrong, but never once was anything dishonest or shady on our part. We told them what was happening every step of the way. In fact, by the time the job was finished we didn’t get paid a single penny because even though we had done about $40,000 worth of work and we had put in over $11,000 of our own cash (that we didn’t have to spare!). We had sunk it all into the job to do our best by them, to be the people of integrity that we are. The thing that’s even more ridiculous is that all of this happened and they pretended that everything between us was fine FOR 3 YEARS! I’m talking lunches, hang outs, pool nights, birthday party’s, football games… I had never so much as had a tense conversation or confrontation with this friend and we were really close! Finally, after multiple threats that they would sue us and ruin us we talked to a lawyer, we knew we were innocent but had never had anything like this happen before so we needed guidance. He told us that not only were we innocent but if anything they would owe us money. He suggested we try to settle it out of court to save money, because even if you’re innocent you have to pay lawyer and court fees. So we asked if they would talk with a mediator, he yelled and complained and threatened some more before saying he would think about it. He agreed and someone we both trust found us a lawyer to work with. We contacted the lawyer and our “friends” never contacted us again. We don’t know if we’ve heard the last of them, but we suspect they finally realized that they made a mistake and don’t want to admit it to us or be found out in court. I tried reaching out once via a simple card, but it was not answered, so now I’m trying to find a way to move forward, to accept what I can not change, to let go of the injustice that we have faced. It’s been over 8 months since this traumatic, emotional, tsunami and the damage it has left in the aftermath has been devastating. Not only were we completely caught off guard, but the accusations are so far from the truth that if it wasn’t so painful it would be laughable. Now I’ve not only lost one of my closest friends of 10 years but we’ve also lost our mutual friends who I don’t get to see anymore. And because they are holding the lawsuit card we have to suffer in silence as they go on living these lies. The emotional stress set me back severely in my mental health and my physical health. I’m not sure I have ever felt so alone in my entire life. To lose about half of my “friends” ( you don’t have many when you’ve been sick for 9+ years) over complete lies and not a single one contacts you to even see if it’s true. It is devastating, absolutely devastating.

So this year beat me up and left me limping, but so have the last 9 years. Some people might say I’m negative when I don’t look forward to the “New Year”, but the truth is I’m not strong enough to look forward to a whole year. Maybe because they have all been “more than normal, exceptionally difficult”, but mostly I think it’s because I live a hard life. It’s okay to acknowledge a hard life. Yes, there will always be someone who has a harder life, but it’s okay to feel sadness over your own hard. It’s true, life isn’t fair. So just as I’ve done so many times before, I’m going to follow my mom’s sound advice and instead of looking forward a year I’m going to look forward one day, one hour, one minute, or even one tiny second at a time. Whatever I can handle. And I’m going to celebrate the good and I’m going to allow myself to grieve over the bad. I have no reason to believe that this year will be any kinder than the last 9+ brutal years, but I do know I can make it for each next second and so that is what I will focus on.

Keep Fighting,

Dawn Harris

Life Recap

ERP or “Exposure Response Prevention” is changing my life! It is the best OCD treatment I’ve ever had! TMS “Transcranial Magnetic Stimulation” is also a part of my regular treatment regimen and it has just been FDA approved to help treat OCD so it is a win win win win for me, hitting my depression, anxiety, OCD, PTSD all in one treatment with little to no risk of side effects! It’s still far from where it needs to be, but definitely seems to be moving in the right direction!

I’ve just started seeing a new doctor…yet again, which means a lot of new tests will be run over the next few weeks. If I had a dollar for every doctor, stranger, or even a friend that has described the last 9 years or our lives as a “living hell” I’d be a rich woman. But I will continue to seek out answers and healing because my life is worth the fight.

Hey you, yes you, your life is worth the fight too. Just in case you needed to remember that today.

I’ve battled so many illnesses, severe treatment resistant depression, anxiety, PTSD, OCD, multiple chronic illnesses, fibromyalgia, POTS, IBS, acid reflux, central sensitization disorder, multiple physical deformities and disabilities, faced terminal diagnosis of my closest of the close, lost 2 dear friends to suicide, lost one of my best friends to a manipulator, over 10 surgical procedures in my family and under anesthesia way more times than that, too many hospital stays, more doctor visits than I can count… literally hundreds (thousands?), 4 states of doctors, specialists, tests, and treatments, multiple rounds of physical therapy, years of counseling, sepsis, syncope, pneumonia, colon biopsy, hormonal imbalances, a ton of CT scans and MRIs, so much nausea and vomiting, spinal tap, spinal fluid leak, blood patch, EMG test, needle muscle biopsy, heart condition(s), constant headaches, EEGs, endometriosis, malnourishment, pic line and TPN, low blood sugar, restless and nightmare filled sleep every single night, 6 Ketamine treatments, 14 rounds of ECT, many ER visits, over 100 TMS sessions, biofeedback training, fighting to gain weight, slurred speech, loss of leg function, bed and wheelchair bound, Iron infusions, swollen stomach, swollen legs, swollen feet, body pain from head to toe, chronic fevers, so many meds, so many side effects, so many unanswered questions and so many unsolved problems. I could probably go on, but I think you get the idea.

Yet, here I am, 9 years later. Still fighting for my life. I’d be lying if I said it’s just because I’m too strong to give up. I have, on multiple occasions, begged God through sobs to just make my heart stop beating. I’ve said “I can’t do this” a million times. But I will never take my own life. I’ve seen and first hand experienced the pain it drenches those closest to the one lost in. So as long as my heart is beating I have no choice but to keep living. Because no matter how hard it gets, my lungs keep filling and emptying (even if only at 75% function) and my heart keeps pumping (even if it’s two sizes too small and functioning similar to a person in heart failure). I’m not fighting just for me, but I’m fighting for all the people who love me, I’m fighting for all the people who will hear or read my story and perhaps find the strength they need to also keep fighting. This life is so very isolating, but I see you. I’m with you. I’m for you. Don’t quit my friend, look how amazingly far you have come!

And maybe just maybe you will eventually come to a place where you dare to dream again. Where you dare to believe you have a future of more than pain, doctors, and mere survival. I’m getting there. It’s been a long 9 years, and it’s not even close to being over, but I’m starting to hope for a future that is more, where my life and this journey has purpose. Starting with you. Thank you for reading my blog, I hope you feel loved here.

Taboo

Can we talk about something taboo? Can we talk suicide for a bit?

Recently the media has been flooded by two high-profile suicides. It’s absolutely devastating that these lives were lost and it’s also tragic that approximately 3000 people in the world die by suicide every single day. EVERY.SINGLE.DAY.

This is not okay! Something has to change!

After the media coverage, every social media platform was filled with heartfelt tributes and suicide hotline numbers and things like “just ask for help” “just tell someone” “Anybody can call me anytime” etc…

Here’s the thing, and I say this believing that the people saying these things mean well they just don’t know better, but these words you are typing on your social media are not the answer. Words do not equal actions. Actions are what save lives. Don’t say “I’ll be there when you call” because they aren’t going to call. You just have to be there without them having to call. You should know that for the people who battle years of severe mental illness, their “friends” will slowly disappear. I get it, it’s really really really hard to be friends and stay close to someone who you can’t understand, who isolates, who pushes you away etc.

The thing is, they need you. They desperately need you.

I want you to know that there are a LOT of little things that lead up to a person making such a big choice such as taking their own life and if you aren’t there in the trenches with them during the battle then you certainly won’t be the one they count on in the end.

I say this with the utmost respect for those of you who have stood by and held up the broken and the hurting who have chosen to take their life despite your faithfulness to stand with them. I support you in your grief and I thank you for your steadfastness. Ultimately only the person committing suicide is responsible for his or her choice.

I just feel, as a person who struggles with severe mental illness (who has at times been suicidal), and who has experienced suicide of close friends, it is my job to remind you that it takes action! It takes being there for years and it’s not just you riding in on a white horse to save the day because you sent a text once every few months saying “hey text me if you need anything”. It just isn’t enough.

So if you really want to make a difference then jump in with both feet for the long haul with the people close to you fighting mental illness. Don’t post a Facebook status or a tweet to ease your conscience and make you feel like you did your part. I’m sorry, but that isn’t enough.

Know better, do better!

This is not just a trend that you jump on board with while it’s circulating through the news or trending on twitter.

It is literally life and death.

Keep Fighting,

Dawn Harris

We Won’t Quit

I’ve been absent for a while. I just haven’t had the motivation to write. Feeling a bit confused and frustrated.

I hate mental illness and what it does to those of us that suffer and to those who love us.

At this moment I am sitting in my bed in complete agony over a trigger for my OCD/PTSD. Just a simple comment that my body reacted to and instantly I was flooded with thoughts from a past bad experience, drenched in false guilt and my body was covered in sweat as my heart raced and the pit in my stomach got even deeper. Now I’m literally a mess just trying to breathe and live.

This happens on a regular basis and it is absolutely the worst feeling I have ever had in my entire life. The severity varies and the length varies, but it is literally something I deal with every.single.day. of my life.

I’m tired and I’m weak. I feel like I’m going to vomit.

This is true OCD.

If only it was just wanting an organized pantry…

Misconceptions about mental illness doesn’t make me angry (maybe because I used to be one of them?), but they do make me more passionate about spreading awareness.

*Deep Breath*

This is so very very very hard. I don’t know how I’m supposed to do this over and over. Why do our brains not believe us? How can I know the truth and yet feel like it is a lie. How can my body betray me. This is so confusing and frustrating. I just want to be well.

If you struggle with intrusive repetitive thoughts and PTSD/OCD triggered anxiety attacks you know what I’m talking about. We tear ourselves up with hate filled words, with guilt filled thoughts, we remember every mistake we ever made and replay it only we make it even worse in our heads than it actually was. We confess as a ritual to try to stop the guilt, it may help for a while, but it always flares up again, and again, and again.

I’m so tired.

*Deep Breath*

We don’t give up. We have to keep fighting. We face the battle that feels even bigger than impossible and we choose to believe we are more than this feeling. We are more than this illness. We are more than the lies screaming in our heads. We are not our past. We will not surrender. We will not lay down and quit. We will get knocked down and then we will breathe deep, look our fears dead in the eyes, and say, “You will not win!”. We get back up. We keep going. Over and over and over again. We will not be imprisoned by the monster inside our heads. We will do the things it tells us we can’t. We will do the things it says we should fear. We will engage in conversations that may trigger the sleeping beast. We will be venerable to those around us when we need help. We will give ourselves grace when we are weak. We will give ourselves kind words when all we feel and hear are hatred. We will speak truth even when our whole bodies tell us it is a lie. And we will drag our broken and bleeding bodies over glass and hot coals to reach the finish line because we have a purpose and we will not quit because people fighting mental illness are quite possibly the strongest people on the planet!

Keep Fighting,

Dawn Harris

 

Knowledge is Power

Y’all, This week has been a challenge. I mean, that sounds weird to say that because I can’t recall a time in the last 15 years that wasn’t a challenging week, but this week my OCD flared up REALLY bad on Wednesday. When you deal with something like OCD everyday you sometimes forget the intensity of it when it’s at its peak.

Guys, it was so bad I called like 5 random therapists/ psychologists I found on google that are in my area trying to find someone to see me that day. Luckily I found a lady who called me back and could see me right away. She was nice and had a pretty decent knowledge of OCD (why is that usually hard to find??).

Anyway, she said something that was SO helpful to me and I have to share it with you all. She said “OCD is misplaced anxiety.” She said she feels like most of my OCD is based on a real fear that I face daily and that I’m subconsciously trying to hurt myself to avoid the real pain that I have to carry. I REALLY think she is on to something! I have been trying to examine my OCD and the times it flares up and I definitely see a pattern. In a OCD world where nothing makes sense and everything is confusing, this little piece of hope in understanding my brain better was such a welcome gift!!

The last few days when I feel the OCD I say to myself “this is just misplaced anxiety” and I relax my tensed muscles and exhale. I recognize and acknowledge the anxiety that I carry (even if I don’t feel like it is a particularly high anxiety time at that moment I’ve learned that it can still effect me.) Then I try to continue whatever I’m doing as normally as I can. So far it has been a wonderful tool to add to my toolbox of things to fight my OCD!

I so hope this helps you too!!

 

Keep Fighting,

Dawn Harris

OCD battles

I struggle with several things and it’s super rare for all of the things to be going well at the same time. I’m always struggling with something and usually multiple things at once.

My fibromyalgia has been angry pretty much everyday as of late and I’m on my period.

My cycles kill.

I mean we have discussed me having a full hysterectomy many times, but due to my fragile mental state, we, and the doctors agree it’s just too risky right now.

That being said, it causes so much pain, to the point of tears at times, and I’m unable to do anything other than lay in bed with a heating pad for at least 2 days (although the bleeding usually lasts 10 days).

Side note – I laugh at the people who are all like “women shouldn’t be ashamed to free bleed.” I’m all like, Girl, I not ashamed, in fact I’m a classic over-sharer, but if I was to “free bleed” as they say we “should” as “proud women” it would look like a freaking blood bath! So. Much. Blood. Not to mention everything I own would be stained in blood. Um. No thanks.

While all that is painful, I’ve said it before and I’ll say it a million times more.

Mental pain is far greater than physical pain.

Today I woke up feeling okay mentally, but as the day has continued my mental state has dramatically declined.

It comes out of nowhere.

Sometimes there is a trigger and the rush of OCD is intense and overwhelming. Other times, it’s more subtle and I find myself fighting thoughts and then they just become stronger and more frequent until I’m full on high alert, survival, fight mode.

I was sitting, listening to some of my favorite music and doing some art work. I took a break and ate a sandwich. I went back to my art and all of the sudden I realized that gradually my mood had shifted and my thoughts were scaring me (they weren’t bad  thoughts, but they were traumatizing me with false guilt and fear of feeling the OCD), I realized I was quite shaky inside. My body was hurting and I was shutting down. I knew it was time to accept the flare and let it run its course.

There was no trigger. I did nothing wrong. I wasn’t in danger, yet my body or rather my mind turned on me and attacked. I was helpless to stop it.

I decided to turn to writing this out for you to help get me through this flare up.

I am not able to do anything to forget that I’m having these thoughts and feelings until it passes, but I can speak truth in the midst of it until I can feel them as true for myself again.

While we may not be able to control what’s going on inside our minds as much as we would like, we are NOT helpless. We CAN control how we fight through the battle.

I’m struggling. I’m tired. I’m worn. And truthfully I’m so over it.

I just want these nasty flares to go away and never return.

But that’s not my reality.

I will most likely fight most of these battles to some degree for the remainder of my life and I’m trying to be okay with that.

But today, right now, I just have to fight one minute at a time.

Keep Fighting,

Dawn Harris