Fear

Fear consumes me to my very core.

Even on my so-called “good days”. Fear overwhelms me.

I’m constantly afraid of the future pain I will face (both physical and mental), the losses, the mistakes, the betrayals, the misunderstandings, the hurt feelings, the mass terrorist attacks that change life as we know it, the germs, a new diagnosis…. etc.

As you can imagine new years brings all these fears to the forefront of my mind. What will this year bring? I can’t think of a single year in my past that I’d want to live through again. I can’t think back to any year and say, “wow, such a good year!”. Sure, I have the occasional bout of hope. The rare thought that maybe, just maybe this year will be different. Maybe this will be the year I find the answers I need for treatment, maybe this will be the year I get my life back… But just as fast as the positive thought passes through my head the dark storm of fear and doubt pour in and encompass my whole being, reminding me that sure, there is a chance for improvement, but with that chance of change comes the chance of complete and total destruction.

It’s not death I fear, it’s living through torment.

I don’t see the glass half full. The extreme pain and misfortune has shattered any rose-colored glasses that may have once been worn.

I’m in that awful phase of I do NOT want to relive my past because it hurts so much, then again I’m afraid of the future because I am fully aware things could be SO much worse.

I don’t want to stay where I am because I’m miserable, but at the same time at least I know mostly what to expect in my present miserable.

ugh.

Does any of that even make sense?

Perhaps not to a reader without chronic illness. But I venture to say, if you live in a state of constant never-ending mental and physical pain, you get it.

You are nodding along saying “me too”. Saying, “yes, I get it!”

As my husband so sweetly reminded me as I cried this new year with fear of the future, and the mourning the loss of normal. He said to me, New Years is only a new day, just like every other day. No need to put pressure or expectations on yourself.

So at the advice of my dear man, I am trying to continue on as if it’s just another day. Because he’s right. Everyday is a new day. We can’t stop the bad things, but we can work to empower ourselves to breath in and out and face what comes.

We are strong. If you suffer with chronic, life-altering, physical and mental pain and you are still here fighting. You are strong. It takes HARD work to live this life.

God is my strength, I pray He can also be yours.

Keep Fighting,

Amy

 

Isolation

Do you self isolate too?

When I’m not doing well it is always reflected directly by my inability and lack of desire to socialize.

I just physically feel so tired I can’t seem to get out of bed, and then I’m over stimulated by noise so I want my door shut and my OCD makes me scared to see anyone for fear of a trigger.

The thing is, isolation is not our friend.

Sure it helps to temporarily ease our discomfort and yes, sometimes it is necessary,  because it gives us a bit of a mental break, in that we don’t have to be super alert at all times if we aren’t affecting other people. But unfortunately, when we self isolate for long periods of time, we actually only feed the negative cycle.

I’m learning more and more about how to live with OCD and it is fascinating and frustrating. The very things you avoid, you are to pursue. The very lies that you try to argue with, you are supposed to agree with… It’s complicated and confusing to say the least.

I’ve been in counseling for years, but my main focus has been my multiple physical chronic illnesses, mostly because they kept me bed and wheelchair bound and in a lot of pain, but I underestimated their effects on my mental state. My physical state and my life circumstances created an isolation so deep that my already fragile mental state was just shattered.

I’m now in the learning, accepting, and rebuilding phase of life.

It’s hard.

But you and I are in this together, right?

Keep Fighting,

Amy

Breath After a Battle

Today I finally felt like I got a bit of a break from my latest OCD flare up. Of course it never really goes away, even at my best, but it lessons sometimes where it isn’t at the forefront of every thought.

Gosh this flare was a doozy. I mean the kind where you question if you can handle it and you think about everything in your life that you would give up if this would just. go. away. I seriously HATE false guilt and fear that comes along with OCD and the intrusive repetitive thoughts. It literally takes over me and I feel like I’m miles down in the ocean and it’s so dark I don’t even know which way is up. Everything is distorted and blurry.

I’m pretty sure it’s the worst feeling I have ever felt.

I joined a few online support groups for OCD and it is already making me feel less alone in my fight. I really believe there is strength in numbers and in finding the “me too”.

We were able to go to the Christmas parade in our town this afternoon and I managed okay in the crowd! I needed my walker so I could sit whenever my POTS and Fibromyalgia needed me to, but I didn’t need my wheelchair! After being in a wheelchair pretty consistently for over a year, just walking is such a gift!

I guess that’s all for right now. I hope you aren’t in too much pain tonight whether that be physical or mental. I know the struggle of both of those all too well and if you are in pain tonight please know that you are not alone. If you are looking for hope tonight perhaps try reaching out to a support group, there are so many on Facebook and finding others that can identify with your struggles may help.

Keep Fighting,

Amy

Hard Days

I don’t think I have much to say today, but I just wanted to say my OCD-anxiety-depression has flared up terribly today. There was a trigger first thing this morning that sent me fighting thoughts and fears that decided to loop over and over in my head all day long.

False guilt, runs of my own past mistakes, fears of future mistakes, memories of being betrayed, fear of future betrayals, sadness, hot flashes, panic, confusion.

I can’t stop it, but I can KNOW that no matter what my mind and body are telling me, I know the TRUTH. I am not in any way a danger and I’m not in danger.

I’m still fighting.

Keep Fighting,

Amy

 

Up and Down

One of the hard things about living with chronic illness is the lack of ability to plan ahead.

You really never know how you will feel before that day, or in my case, even later the same day.

For example – I walked 3 miles this last week and that was a new record for me since getting out of my wheelchair. It was super exciting, but the very next day, I was in the wheelchair and even unable to speak due to slurred speech and depression so deep I couldn’t even open my mouth to make a sound.

If you haven’t experienced this or seen it first hand it might sound a little crazy, but it has happened to me too many times to just be a coincidence.

It’s confusing for sure to have abilities one moment and not have them the next.

The good thing about where I’m at in my journey right now is that these flares are usually pretty short-lived and not more than a few days at most (and not at the most severe level more than a few hours or so).

With that being said, I’m in the process of rebounding from this most recent set back and walked myself into the clinic today for my weekly TMS appointment!

I’m hoping you have a happy Thanksgiving (even if you dread the holidays).

We are just going to be having a meal at home and we may join a few of the neighbors (depending on how I’m feeling) who will be out near our pool, since they invited us. For me it’s all about taking cues from my body and knowing I can’t handle big crowds or big expectations!

Mostly no matter what you are facing I hope you are able to find something or someone to be thankful for! The saying “there is always something to be thankful for” is true. Even when I was at my very worst and felt like I couldn’t go on, I was still able to be thankful that as a Christian I know that my pain (both mental and physical) are completely temporary and one day all things will be made right.

Hang in there, and Happy Thanksgiving!

Keep Fighting,

Amy

A Lack of Progress is Not a Reflection of Your Hard Work.

I’m training for a 5k right now!

I never thought during those long days of being bedridden that I would ever get to the place where a 5k would even be within reach.

It’s an incredible feeling!

Here’s the thing, I’m worried about how people will perceive my progress. I know I shouldn’t care, but I feel like the me that was sitting in bed deserves the recognition for her incredibly HARD work.

If you struggle with chronic, invisible illness you know the type of judgement and “advice” you constantly get. The people who think they can cure you with whatever product they are selling, the people who just think you’re a lazy person and that you aren’t trying, the people who think exercise and eating right is all that you need to do… etc.

You see, the fact that I’m in the place that I am in has nothing to do with any of those things. I haven’t changed anything about how hard I work or what I do. You know what I did?

I moved.

Yep, we packed our bags and moved halfway across the country to get a fresh start, get away from some toxic people, and to find some stable weather!

Now, because the environment and the weather are kinder on my body, and the sunshine and lack of constant reminders of the past are kinder on my mind, finally the circle of constant torment is slowly shifting in my direction towards progress.

I’ve had so many doctors tell me that I was in a nearly impossible situation due to the loop of sick body – sick mind – bad weather-bad environment. It was a setup for disaster and yet we didn’t quit.

I say “we” because this journey very much includes my husband who has stayed by my side day in and day out fighting along with me. We continued to try all the medications, we continued through all the painful tests, we survived the hospital stays and surgeries/procedures, we went to the many many many doctor appointments, we persevered and cried our way through the treatment plans – programs of exercise, pain management methods, biofeedback, physical therapy, eating plans-  we drove to the different states to do the experimental treatments, we paid the many many many thousands of dollars for YEARS, only to get nowhere, and on more than one occasion we sat in despair as I begged for my heart to just stop beating…

You see, this journey has very much been “we”.

So while I’m THRILLED and proud of where I am right now physically, I can’t help but notice how the “noise” of happy voices has come up. where were the cheers when I cried my way through months of painful workouts only to have no improvement. Did I work any harder to walk 3 miles yesterday than I did to fight to keep living back then? No. support seems to kind of be one-sided.

One of the painful parts of being sick for so long was watching the people in my life slowly disappear and become silent while my struggle was at its height. Now, that I’m being able to do more, and my life is starting to look more normal, they are slowly starting to reappear. I’m not mad that they are celebrating my victories with me, It’s just that when I really needed them and they weren’t there. This seems to make me sound like a pouting baby. I’m really not, I’m just not sure how to feel about it and while I’m not angry, I absolutely have been hurt over the absence in the last several years. Because of that, I feel like it’s an important part of the chronic illness journey to share with you all. Either to let you know it’s not just you that feels like your friends and even at times family have disappeared during your time of need, but also to help bring awareness about the importance of being an intentional friend to those who are hurting so deeply.

So wherever you are in your chronic illness journey, know that first, there is hope for progress no matter how impossible it seems right now, and second, know that you are not alone! You are a fighter, and lack of progress is ABSOLUTELY NOT an indicator of the hard work you put in. You know how hard you fight and I’m proud that you haven’t quit!

Keep Fighting,

Amy

 

Holidays- Know Better, Do Better.

When you live with chronic illness, or mental illness, or in many cases both, the holidays are very different.

They are often times that you dread instead of anticipate. They are often spent alone and they are often accompanied by tears and loneliness.

You see, the holidays equal expectations and expectations are a sure-fire way to crash someone with OCD/anxiety and depression. They can also cause stress which is a sure fire way to crash someone with chronic pain like fibromyalgia. They also cause a sense of loneliness because when you have a low immune system and sickness lasts for weeks and completely knocks all forms of functioning out the window you avoid germs at any cost. That being said, the holidays usually consist of large groups of people in a small area and there is always someone (usually multiple people, sick).

So you stay home.

I’m not sure why the common decency to stay home when you are sick is lost, but people seem to pat people on the back these days for working even when they’re sick and pushing through. I guess until I found myself in the place where I was told a common cold would kill someone I loved most in the world, I didn’t really “get it” either.

Look, it’s hard to understand if you haven’t walked in my shoes or in the shoes of someone else going through something similar. I realize you have to work and your kids need to go to school and such, but please, just remember, every time you choose to go to an event sick you are the reason someone else is missing out and you are also putting everyone in that room at risk, and while it may seem like no big deal to you, one of those people may be severely fragile or they may live with someone severely fragile and your carelessness may just cost a life.

I know how it’s a tender spot, but while some people are out in the world being anti vaccinations, and anti doctor, and anti antibiotics, and “germs are good for you, they make you tough and build your immune systems”. Please just know, I believe you have a right to believe what you want, and some of your points have some bits of truth to them, but not everyone is made the same and some of these things you so strongly condemn can and have on many occasions saved the lives of the most venerable.

My point is, if you choose to go out into the world while you are sick, please at least do your very best to contain your germs. Cover your mouth with your elbow instead of your hand, don’t sit or stand right next to someone, wash your hands frequently, don’t go to someone’s home or have them into your home without first discussing your sickness ahead of time, wear a mask, or if you can, please just stay home! And as a helpful tip, if you are close friends or family with someone with a compromised immune system, a HUGE way to show them love and support is to not be near them when you are sick or have been around someone sick (by the way, just so you know, a cold IS a sickness, also saying  “it’s just allergies” is not okay), and always clarify that you and those around you are healthy when you do see each other. These things go a long way to ease their inevitable anxiety.

So if you end up spending the holidays alone this year because of your own mind/body or the sicknesses in those around you, please remember that you are not really alone! Unfortunately there are a whole group of people feeling the same way. And just so you know, even when it feels like your friends and families don’t really care about your special circumstances, that they don’t change their lives when yours flips upside down, that they don’t even miss you year after year. They try, they just don’t “get it”. They need some grace, and they need some communication on what things are hurtful.

I get it, I really do. I can’t begin to count all the times I’ve spent crying in bed after getting ready to spend a holiday with my family only to hear last-minute,” oh, so and so is coughing but it’s no big deal, or well, we’ve had a few colds and a low-grade fever but you guys can still come.” umm. no. no, we can’t. It’s usually phrased in a way that sounds like it’s completely you just being uptight. Like it’s not an actual sickness. In all fairness, some of that could all be in my head because of my preconceived ideas of what they may or may not be thinking about how I live my life. You see, grace is needed. I think it’s important to remember that usually the people love us, so we know they aren’t trying to hurt us and leave us out. They just don’t get it.

Let’s try to remember this holiday season that even when we feel left out and alone, it is not because we aren’t loved, it’s just because we are misunderstood. Use this as an opportunity to spread awareness in love and grace for those in our lives who care about us but may not always get it right. Maybe when people know better they will do better!

Keep Fighting,

Amy

The hidden OCD

What do you do when you are in a rut. Like, when you don’t have anything that has to be done, and you have no desire or motivation to do things for fun?

It’s tough right? Even forcing yourself to do something usually doesn’t change how you feel when you have severe depression. Sometimes, it helps a bit, but don’t count on it.

Depression robs someone of so much. Even just of a comfortable mind. It’s just always there making its ugliness known in every circumstance. In my case my OCD is just as bad.

Let’s talk about OCD a bit.

All my life I had heard the term “OCD” used in reference to someone who was extra tidy, organized, clean. Never had I realized that there are many different forms of OCD and that I was living with several types from a very young age. I have pretty severe OCD but not in any of the ways it is typically presented. I also have several different types of OCD and my symptoms are a mix and match of them all, and they are very debilitating.

I wasn’t diagnosed with OCD until I was in my late 20’s and I can’t tell you what a HUGE relief it was for me to finally have that major missing piece to my puzzle. I was surprised at first to hear that I had OCD until I started doing my own research on what it means to live with OCD. I started reading about the different types of OCD and the symptoms of each type and I just cried in relief knowing that I wasn’t some bad crazy person, I was just someone with very intrusive, life altering fears and thoughts, that looped on constant repeat (at times) in my mind.

To have a name for something I have carried with me since a young child was incredible. How badly I wanted to go back in time to that little girl and prepare her and comfort her and get her into some therapy early! (Although, side note, while I do think therapy can be life saving, I also think finding the wrong therapist is detrimental. So I’d honestly rather have no therapy then bad therapy, especially as a child.) That aside, just having conformation that this was in a way a disability not something I was doing wrong was so comforting.

The more I learn about OCD the more grace I find to give to myself.

Having intrusive thoughts that you think you should have control over is so devastating. But, on the flip side, when you have intrusive thoughts, even though you still may not be able to stop them, you don’t feel quite as guilty if you try to ignore them and continue with life as normally as possible, when you know they are not true. It’s really tricky to believe something is not true when it is extremely persistent and your body responds as if it’s true (cue the sweating, the guilt, the nausea…). It takes a lot of practice to try to ignore those feelings and keep going as normally as possible.

I’m far from perfecting it, it can still completely wreck me, but sometimes I feel like I’m at least making progress. The truth is, OCD is joked about all the time, but if you live with it (especially the lesser known and talked about forms of it) you know it’s not a joke.

If you feel like you are struggling with intrusive thoughts and regular life altering false guilt, please look into the different forms and symptoms of OCD. It may just give you the strength you need to keep on fighting! It’s not easy, but there are a whole host of us out in this big world who are with you. And the more we know and understand our own illnesses, the better we can share and educate others about the lesser known, yet severely debilitating, struggles we face. This will not only make us feel better about our own selves, but ultimately can help bring treatment and greater awareness to help normalize the stigma that we face.

Keep Fighting,

Amy

 

 

 

Suicide

Suicide is a tough topic to tackle. So much depth to it, so many sides, so many angles, so many questions left unanswered.

We have lost two very close friends to suicide. One just yesterday.

The pain that rushes over your heart and mind when you hear of a loved one taking their own life is devastating. I feel a mixture of things, disbelief, anger, sadness, brokenness…

Truly my heart aches for the family left behind the most. The spouses, the children.

The loss of our dear friend just yesterday was ultimately caused by chronic illness. He has been sick his whole life, but suffering even more the last three years to the point of knowing his days were very limited and ultimately he decided to end it all.

I’m not going to pretend to know why he did what he did, I do know he was an incredible person and he must have been in the depths of extreme suffering to have done what he did.

Can I be real with you? I’ve sometimes feared I would wind up in his same position, but after losing one of our best friends to suicide just over 4 years ago, I remember the pain being so deep that on the days or in the moments that I felt like I couldn’t do this anymore, I would remember him and it helped me go on. I didn’t want to take my life and leave a wake of hurt so deep and wide that the ones that I loved the most would forever carry it with them.

So the truth is, while I feel stable and honestly don’t feel like I’m at risk right now, I have felt less stable in the past and I fear being less stable in the future. In the past I’ve stayed for my family. Not an ounce of me felt like going on, not an ounce of me felt like I could. I felt like a waste of people’s time. I felt like my future would only be me wasting away painfully in bed going from one doctor to another receiving painful tests that produced no answers and painful treatments that produced no results. My brain was in constant torment and I really wanted it to end.

Maybe you have been there too. Maybe you have lost dear ones to suicide or maybe you’ve contemplated it for yourself. Please hear me when I say suicide is never the answer. It doesn’t stop the pain, it only transfers it to the ones we leave behind.

So we grieve today as we remember our friend and pray for his family, but it’s also a reminder to press on, to never quit, and to constantly reach out to the broken and hurting.

Keep Fighting,

Amy