Luxuries that most people who have enough money to do these things take for granted:

-going to a salon or getting your hair done including dying your hair (even doing it yourself is crazy expensive now)

-going out to eat

-going to concerts or other events

-buying new or even used clothing/shoes (I can’t even afford to go thrift shopping most of the time)

-being able to afford the gas or transportation to go places

-getting your nails done

-getting a massage/acupuncture/other therapeutic treatments

-getting tattoos and piercings

-going to a gym/pool

-getting a fancy drink at a cafe

-going on any sort of vacation

The list goes on and on. Being disabled/chronically ill is not glamorous. We don’t sit around thinking how wonderful it is to be stuck at home all the time. It’s tiring, it’s isolating, it’s depressing. These are luxuries but it seems so few people recognize them as such. When you can’t afford to do even the little things that might fill your cup again, you have nothing. I can’t tell you how often I have heard people complain about money issues but then they go and get their hair and nails done constantly or have new fancy clothes or shoes… I can’t even afford to buy myself new underwear (thankfully my mom helped me out but my point is that, being poor sucks!!!) Recognizing your privledge is so important. I am lucky in many ways and I know that but there’s a lot of people who are way more well off than I am who I know that complain about money but never seem to be lacking in the luxuries department and it really makes me upset when I know so many of us can’t even afford basic needs these days. Just saying, think about it!

Let’s see:

Canada is still on fire.

Hawaii is now on fire.

The glacial melting in Alaska caused the river to rise so much that it washed houses away.

Slovenia is flooding.

July was the hottest month on record.

We’ve had wildfires, torrential rain, thunderstorms, heat waves and flash floods in Nova Scotia this summer, none of which are normal.

Tornados, hurricanes and other severe record breaking storms are happening all over the world.

But we still have people denying climate change… it’s happening and pretending it doesn’t exist destroys us all.

Chronic illness and pain leave you in a perpetual state of grief.

Imagine your biggest losses in your life… as we all know death is hard and final and the grief that comes with it can be all encompassing.

Losing my dad, losing my fur babies, my grandfathers, etc. all made huge impacts on my life but then imagine feeling that same grief every single day you wake up because you are grieving the loss of life you thought you’d have. Imagine waking up every single day with pain or fatigue that is so powerful, you are lucky if you can get from the bed to the bathroom…

Having answers is huge! Having a diagnosis is massive but it doesn’t change the grief. Instead I think of the amount of time that was wasted wondering… I think of the trauma I have experienced from being dismissed, ignored and treated like I was just attention seeking…

Imagine realizing that your entire life is never going to be what you had dreamed it would be. That is what chronic illness does. It strips us of our entire selves.

Pain changes you. And I think that it’s really hard for anyone who hasn’t gone through it to really understand it’s impacts.

My friends see fragments of what my every day life is and yes I have much to be grateful for but the psychological impact, the constant nagging voice of grief will never go away. I do not know a day without pain… and that really screws with your head.

My journey with endometriosis was a traumatic one that left me near death. My mental health journey has been beyond traumatic and it’s taken me 37 years to finally realize that it’s not my fault. That I have autism, that I’m not crazy but rather wired differently.

And now finally knowing I have Lyme disease that has been causing so much havoc… to the point I was actually losing my mind… the feelings I had were real. The anger I have with my husbands family is not going anywhere but my reactions were huge because my brain was inflamed from this disease… even so, I am not okay!

My PTSD is just proving it’s point. I am not safe in my own body and I’m terrified all the time.

This is why I say that life is grief. I spend my entire life grieving the loss of everything around me, including myself. I don’t know how I will ever be okay. All I can do is try…

Realizing now that I have Lyme disease, it leaves a lot of questions. Maybe this is what has been causing my fibromyalgia? Maybe that extremely rough psychological stuff I’ve been dealing with lately are related? Learning about Lyme is like a lightbulb going off…

2 years ago I found a bullseye rash, never saw a tick and was treated with doxycycline. Lyme can become chronic in some people and you can have what is called a resurgence which is what I am dealing with now. I don’t believe I got a new fresh tick bite.

Lyme disease can cause so many symptoms that look like other disorders and is not easily detected on blood panels and other testing methods. I was tested over a year ago and since it was negative I assumed that meant I didn’t have the disease. Well now I know that is not true. I have questioned since then if lyme was a possibility… like I can’t even tell you how many times it crossed my mind, but since I’m not a doctor, I just kept pushing it off and saying well my doctor told me I have fibromyalgia… I do but there’s a reason for it!!

The good thing that comes out of this is antibiotics can help me greatly and if things start to flare again, I know what it is and can ask for help!

When I was at the hospital the doctor asked if I wanted to be part of a Lyme disease study they are doing through Dalhousie University and I said YES OF COURSE! So now, like I always do, I will become an advocate for this disease.

My message for everyone is simple:

1. Please be careful and check yourselves for ticks! I know it’s easy to forget especially since they can be the size of a grain of pepper but do everything you can to avoid this disease can I can tell you, it is absolute hell! Nova Scotia is dealing with a really high volume of tick bites and Lyme now and also other bacteria borne illnesses are popping up too. I witnessed at least half a dozen people at the ER in Lunenburg yesterday who were there for them as well! It is truly rampant and I share this as a warning.

2. Never stop fighting and advocating for yourself. I know that also isn’t easy especially with our crumbling healthcare system but if you believe something is wrong, don’t stop asking questions! Don’t stop looking for an answer! Listen to your body and trust yourselves!

Depression is the absence of hope.

Depression is when the things you normally find beautiful, only look ugly.

Depression is believing this is all there is and you will never feel anything but this pain ever again.

Depression tells you you are a burden, that you are worthless, that the world would be better off without you and you learn to believe them.

Depression doesn’t care how many people tell you you are loved, cared for or wanted… it is louder than all the voices in the world combined.

Depression takes away your soul, it strangles your insides and imprisons your very existence.

Depression is blackness.

Depression is an anchor that sinks you to the bottom of the ocean and leaves you there. But instead of drowning, it feeds you enough oxygen to keep you alive but not enough to live or escape.

No matter how much you kick or scream or tear your flesh apart, depression sits and laughs and tells you that is exactly what you deserve.

Depression is the absence of light.

Depression is the absence of colour.

Depression is my curse and I’m tired of dragging it around with me like a ball and chain.

I don’t wanna do this anymore…

Depression needs to die and I fear the only way that will happen is if I die with it.

For my own records I decided to write down all the medications they have had me on over the years… Seeing the list feels just crazy to me… I forgot just how many I have tried. Who else feels like they were just a human experiment?

Current Psych meds:

-Escitalopram (lexapro)

-clonazepam (klonopin)

-seroquel (quetiapine)

Past Psych meds:

-Paxil (paroxetine)

-Lithium

-Prozac (fluoxetine)

-Ativan (lorazepam)

-Effexor (venlafaxine)

-Celexa (citalopram)

-Wellbutrin (bupropion)

-Remeron (mirtazapine)

-Zoloft (sertraline)

-Valium (diazepam)

Zopiclone (for sleep, made me hallucinate so only took it once)

For pain/endometriosis:

-Lupron shots

-Visanne

-Tranexamic Acid

-Lyrica (pregabalin)

-Cymbalta (duoloxetine) (also supposed to be for depression)

-Dilaudid (after all 3 surgeries)

-Sulindac

Not sure if I forgot anything but I think that’s about it.