Loving your body through illness

Well I might be sick with nerves in regards to posting this publicly on the internet, but here I am spending my Friday night the way I spend many friday nights, contemplating pretty much everything only to finally have my epiphany right before bed and then staying up way too late blogging. Only this time using my cell phone as my laptop hurts my eyes too much.

Having a potentially life-threatening illness really puts perspective on body-image. When I was fitness coaching I felt so good about my body even when I wasn’t at my ideal weight because I was working so hard and I was gaining so much strength. I put my heart and soul into it because I could feel both physically and mentally that I was taking control of my life. I was seeing myself in a whole new stronger, sexier way and mostly I just couldn’t believe that I had visible arm muscles, haha! I felt the best I’d ever felt in my life and I associated it all with the ability to exercise.

That’s what makes exercise the biggest loss to me since I got sick. In the beginning when we didn’t know what was wrong with me and before the people in my life began to understand how debilitating Lyme can be, some would try to tell me that exercise would make it better. Some friends still try to get me to “just come to the gym” or encourage me to workout and no one expects that teasing me to exercise more or encouraging it because they think it will help me is actually completely gut-wrenching for me because it is one of the abilities that I ache to get back the most. Not so that I can be a size 2 again, but because I want to feel that strong again. I need the emotional release from exercise again.

A year ago I would have written that I also wanted to love my body again. But the truth is I do love my body now even with the extra weight. I have to be grateful that this is the body that is fighting so hard for me right now. This is the body that is doing everything it can to save me. When you’re sick and losing control you tend to begin to hate your body. Not just the differences in appearance but you also begin to hate it for failing you. The trust between you and your body diminishes. But it’s not my body that has caused this, it’s my body’s natural reaction to the bacteria that are attacking it.

If your truck was falling apart from rust, and you were using water as coolant and regular gasoline in a diesel then you wouldn’t blame the truck for breaking down. My healthy eating definitely kept this disease down longer but I was filling it with stress every day and not repairing past trauma and the Lyme was floating around wreaking havoc and eventually my body broke down. And for that I hated it.

My point is, for all that is against it right now, my body is putting up a good fight so how can I hate it?

I recently have had no appetite. I have gone through periods of lack of appetite, nausea, vomitting, and food aversions mixed in with other periods of being absolutely ravenous on and off throughout treatment. This period of lack of appetite has been particularly strong and long-lasting so I thought I should check if I had lost any weight. I’ll be totally honest, part of me was wondering in hopes that maybe I could have lost some of the weight I’ve gained back and another part of me was wondering in fear, knowing the dangers of losing too much weight with Lyme disease. When I stepped on the scale however is when I realized just how much of my weight I’ve gained back. At the start of my fitness journey I was 186 lbs. My fittest was 148 lbs. My “feeling best” was somewhere in the low 150’s. When I stepped on the scale the other day, I was 190 lbs. I might throw up with nerves and embarrassment about posting that publicly to the Internet, but what I’ve come to understand is that my weight at this point in my health situation could have the potential to become a life or death issue. Never before has my body been so reliant on its own self for nutrients.

Some Lyme patients develop complications of the disease that cause the body to stop absorbing nutrients properly. I’ve read more than one story about this where the patient ends up requiring a feeding tube, but one story that has always stood out for me is of a young lady in BC around the same age as me, who’s body, due to complications of Lyme disease, could only properly absorb nutrients from a certain type of feeding tube food that was not covered under medical and she ended up dying. My body so far has not only continued eating for now, if less lately, but has also stored a good amount of fat that would give me so much more time if it ever came to that. I expect that my appetite will come back 10-fold in a couple of days like it usually does, but that’s the thing with this illness, you just never really know what’s around the corner.

Chronic Lyme does have a way of teaching you things that you never thought you needed to know however, and if there was ever a time for me to appreciate my body for holding a little extra weight, this would most definitely be it. It has been and continues to be an interesting and important lesson on body image and I am learning to love my body, with the extra weight, for all that it does for me.

For more information on my past fitness and mental health journey visit my old blog at www.strengthenbodynotexcuses.com

Man up and spread some love

Today’s society seems to have some sort of ideation that they cannot show love to another person before it is shown to them first. And furthermore that they don’t want to show more love to a person than they are receiving from said person. No one can communicate without ego or fear anymore and I think it’s absolutely pathetic.

I try to always ask myself, “if this person were to die before I spoke to them next, what would I want them to know?” And this helps me say the things that I feel need to be said. No one can read your mind, no one knows if or how much you care about them unless you share that with them somehow. This does not have to be in words of course but it does have to be in a form that the other person understands. My main understanding is through words and that’s why I use that example.

My very good lyme friend suffered a massive unexpected heart attack last week and if her husband hadn’t been there to do CPR she would not have survived. In an instant she would have been gone and would she have known how much I love and appreciate her?

My mom was in a car accident last weekend. Everyone was ok, but it could have been much worse. Would she have known how grateful I am for her or how lost I know I’d be without her?

Lyme can unexpectedly stop your heart in an instant, lyme carditis, and although I don’t expect that that will happen to me I suppose no one expects it until it happens… have you told me everything you want me to know?

Our society is so scared of vulnerability that saying a simple thing like I love you and I am grateful to have you in my life is paralyzing for some people. I have distanced from some friendships because they simply cannot say these things and I don’t understand how someone could let their fear and cowardliness get in the way of what could be a wonderful, loving, supportive friendship or relationship.

What is so scary about spreading love and making sure your loved ones know that they are loved and appreciated?

If someone in your life was in an unexpected accident and died tonight, what would you wish you had told them?

An Open Letter to my Support Group

It’s a gorgeous Saturday afternoon, probably one of our few left for the year. I should be out with whatever friends I have left, enjoying this beautiful day and instead I’m laying in a detox bath attempting to ease my aching body. Although I do try to keep my blog very authentic and truthful and real, exposing the behind-the-scenes of Late-Stage Chronic Neurological Lyme Disease and chronic illness in general, I typically don’t share when I’m feeling this vulnerable. Even my closest friends won’t usually know when I’m suffering this badly, only maybe my mom and my support group or good Lyme-friends who are all living it too. Today however, as I was writing to my support group I thought, this is something people need to understand. So here it is, in all it’s unedited vulnerability, my open letter to my support group…

 

Feeling the lowest I have in quite a while today. I’ve been treating for over a year, sick for almost 3 years but only really unwell for 2. Which I know is quite a bit shorter time than many of you.. today I’ve basically been in bed since Wednesday afternoon besides doctors appts and picking up prescriptions. I’ve had to take the most time off work in the last week and a half than I ever have before. I only had to move 5 clients but to me that feels like the end of the world. Thankfully most of my clients are so wonderful and understanding and kind, I’m so grateful for that.

Usually when I write I get fired up and excited, but today while writing I just feel sad and numb. I’m only 26 and I couldn’t go hiking once this year. Last night I really wanted to go for a walk and see a few friends at a little event and I required a cane to do it, it was less than a 10 minute walk away. I’ve never let any of these people see me with a cane as I’ve always kept my invisible illness invisible for them. But I really wanted to be able to say that I went and showed my face, so I did.

When I got there I could hear the whispers which I would not have thought were about me if it weren’t for all of the looks that accompanied them. They’re all lovely people so I can only assume that they were whispers of curiosity and concern rather than judgement but I’m not sure that that makes it any more comfortable – at least if they were mean I could be angry and tell them off, lol, but instead it just feels uncomfortable and sad. People who used to look at me with such respect and equality, now don’t even know how to approach me and I don’t know how to approach them.

As I was standing watching this, the happy-go-lucky, friendly guy beside me asks me, “what’s new and exciting?!”
I thought to myself, “I can’t possibly respond with the only new thing in my life is that im about to start a new treatment that absolutely terrifies me, so what the heck am I going to say?!” So I just brush it off and say, “oh nothing,” looking away continuing to watch the ladies whisper. He pushes further, “come on! There must be something new and exciting!” I don’t know why I didn’t think to just change the topic at this time but my brain wasn’t exactly on 100% and I responded with the only thing that was on my mind, “I start IV treatment in 2 weeks,” well what did I think an average, healthy guy would have to say to that? But in all honesty I still wasn’t expecting his response, something along the lines of, “come on you’ve just got to be positive!” And some other words that I zoned out, basically along the lines of I wasn’t acting positive and happy enough for him and suggested that next time I see him I respond with something like “I’ve been skydiving and mountain climbing!”.
“I’m sorry I usually am positive, just give me a break today.” I said defeatedly. And that’s when I realized just how exhausted I was. I go to work 4 days a week with a smile on my face even when every joint in my body is firing with pain. I run to the bathroom in between clients to vomit and then I wash my face, grab some gum and water and continue cutting hair until my shift is over. But last night I couldn’t even look excited for one conversation. I may complain to my mom or a close friend or a Lyme-friend or turn to my blog but overall I do my best to stay positive and, I think anyways, that in the grand scheme of things I do an okay job of it.

Today I’m so tired, and in so much pain, nauseous, sick of spending my days laying on the couch, lonely, bored, and so irritated that someone would talk to me that way and question my attitude. I’m also possibly herxing because those always seem to make me suddenly depressed out of nowhere. As I poured my detox bath and started typing this I just sat on the edge of the tub and sobbed. Only for a moment, but in that moment I felt completely broken and helpless.

P.s. last night I also thought, “omg there actually are people out there stupid enough to say these things. This is literally what people write about that I always think there is no one dumb enough to say things like that to someone.”
But the truth is, he didn’t mean any harm at all and I’m sure if he knew it upset me he wouldn’t like that, but people just don’t know what to say to me anymore.

Life-threatening disgrace of a hospital

I feel bad for the woman at Shoppers Drug Mart this week who’s job it was to ask me (and every other customer) if they’d like to donate to the hospital. My filter-less mouth immediately responded, “absolutely not!” with disgust, without processing what I was saying or who I was saying it to. Of course as soon as my brain caught up to my mouth I apologized for my reaction and explained that I have been involved in fundraising for the hospital in the past but that unfortunately the way that they’ve treated me there is absolutely disgusting and I can’t possibly donate to them at this time, but that of course that isn’t her fault and that I understand she had to ask me that for her job and that I was so sorry for my reaction. To which she was very kind and apologetic and said “as long as you’re healthy that’s all that matters!” to which I just smiled, said thank you, and walked away.

Before my mom left this week to play in the BC Senior Games, she came over to help me dose out my week of medications like she or someone else does with me each week. As she was leaving I started to cry and said “what if something happens this week and I need you,”. It’s not very often that I feel in advance that something is going to happen but this week I did and it turns out that I was right, but that story’s for another day. Her response to me, along with words of comfort, was something along the lines of, “you know if something happens you cannot go to the hospital unless you’re absolutely desperate, and even then, you can’t go to the hospital,”.

Can you imagine being very ill, and it being more dangerous for you to go to the hospital than to stay home in an emergency?

Can you imagine being part of an association for over 8 years that fund raises tens of thousands of dollars each year for our hospital, and then going in there in an emergency and being treated so poorly that it doesn’t feel safe for you to ever return? Last year I arrived at the ER after collapsing at work and losing my ability to speak, only for them to stop all testing and treatment the moment Lyme disease was mentioned. I then received a lecture from the doctor who had not even seen me yet, on how Lyme disease doesn’t exist in BC and then he sent me home to wait for a psych evaluation.

A hospital may be important for our town, especially with all of the seniors here, and they may even save lives – in fact they saved a very good friend of mine’s life which I am extremely grateful for. When it comes to Lyme disease however, for the many people living in our town who have it, myself included, they are an absolute disgusting disgrace of a hospital. Never in my life have I been treated less like a human being than I have been there, and I’ve heard countless similar stories. I’ve even heard countless stories of them ignoring the classic bullseye rash that is 100% difinitive for Lyme disease and the only difinitive early marker for initial diagnosis, treatment and curing this disease. They have sent countless people home, laughing at them for coming in with a bug bite, setting them up for a lifetime of illness that could have been cured if they were properly educated. Children included. One family was told that they “don’t treat children under 6,”.

I am far from saying that we don’t need a hospital in Ladner. I am however, saying that they need to be properly educated on Lyme disease and bedside manner, and they need to stop treating us like we are trash to be thrown away for a lifetime of suffering. I actually want to vomit just thinking about it.

My day; exhausted.

How can a day like today make me this exhausted? Under normal circumstances, the amount that I did today was nothing.

I woke up to the dog crying to be fed, but my lovely cousin who is visiting got up and fed her and let her out for me so that I could stay in bed a little longer (after also getting up with my dog in the middle of the night for me when she was strangely crying to go out around 2 am). Her and her fiance then went to pick up breakfast while I continued to rest. Sometime mid-morning I actually got up and ate with them, taking my time and eventually did my detox sauna. It sounds so nice to be able to start my day with a hot, infrared sauna; trust me, if ever in your life you have to spend 1-2 hours a day, 7 days a week, detoxing, it won’t feel so nice to you. Don’t get me wrong, I consider it to be a huge luxury to have access to an infrared sauna in my own home, and of course it’s amazing and lovely for your body, but detoxing from an illness is not always a pleasant experience. At times it can be similar to detoxing off of drugs – the sweats, the shakes, the weakness, and tons of other possible symptoms. The point of the daily sauna or detox bath is to assist our bodies in the detoxification of the dead bacteria which have turned to toxins and are floating around our bodies. If I don’t detox enough my symptoms will be higher, if I detox too much my symptoms will be higher. It’s a fine balance and takes a lot of time and energy each day. I remember when I struggled to find 30 minutes in my day to exercise and now I have to find 1-2 hours a day to detox.

After my sauna I took a few minutes to gain my strength before showering, choosing which clothes would not cause pain against my skin, and scrunching my hair to avoid expending the energy that it would require to blow-dry it, a process that would only take about 10 minutes. I skip the makeup, as usual nowadays, take out the garbage and I’m ready to go. It is now about 12:30 and all I’ve really done is eat, sauna and shower.

Thankfully two of my favorite family members were in town staying with me until today and they were able to take me to my last minute doctor’s appointment in Steveston, since my mom who usually takes me is out of town playing slow-pitch in the BC Senior Games. We arrived in Steveston 20 minutes early so we decided to walk around a bit, well it took me almost that long to walk just a block. In my doctor’s appointment he explained to me that because I’m not showing improvement on our recent oral antibiotic protocol, and am getting quite sick even on my time off of the antibiotics, he wants me to do 5 vitamin IV’s between now and just over two weeks from now to boost my system and then is switching me to IV antibiotics. When this happens the IV’s could take up to an hour for me to run, plus travel time from my house to Steveston and back, which means I could be looking at up to 4 hours a day taken up by healing-related necessities.

After my 15 minute doctor’s appointment we went to a sushi restaurant around the corner where I barely touched my food (lack of appetite), and by 3pm we were back on the road to Tsawwassen Mills to pick up my prescriptions, since I find their Shopper’s Pharmacy there to be the best service with access to compound medications. I also picked up epsom salts and hydrogen peroxide for my detox baths since a bag/bottle only usually lasts me a week or less. By 5pm I was home, seeing my family member’s off on the next part of their holiday, and by 5:30 I was laying in bed, heating pack migrating across all the painful spots throughout my body, cancelling the dinner plans that I’d been looking forward to for a week.

Before I got sick a day like today would have been considered extremely slow and relaxing and boring. Yet this evening, I feel like I climbed a mountain.

2.5 hours free from “The girl with Lyme”

I went on a date this afternoon with a guy who doesn’t know that I’m sick. Mental health came up, that’s no big deal, what I mean is, Lyme never came up once, at no point in our conversations did I feel like I had to talk about Lyme, or being unwell, or how I was feeling. Of course it popped into my head when I was having trouble walking as well as when other symptoms pulled at me, however, besides those, for 2.5 hours I felt like an average person again. There was no talk about doctors and treatments and how fucked up our medical system is. No pain discussions or explaining symptoms or why I’m still not better after a year of treatment. No wondering if someone offered to do something for me out of general kindness or feeling sorry for me. No wishing someone would offer to do something for me because they can see that I’m struggling. No discussing gluten or dairy or sugar tolerance or what diet is best for Lyme patients. No explaining that the reason I’m making and selling jewelery in my spare time is because I’m making any attempt at trying to cover the cost of treatment. No one telling me that long term antibiotics will kill my stomach or my liver or my kidneys. No explaining that the long term antibiotics may hurt me but they also are the most likely treatment to get some form of my life back. No talks of vaccines or why I can no longer get them or why I’m not necessarily 100% pro-vaccine. No sorting through pills or talk of IV’s. No discussion about why I’m not currently fitness coaching or why I’ve gained weight, why I sleep so much or why I can’t workout or why I only work 4 days a week.

No one looking at me with those sad eyes, or politely trying to find a way to ask how I am. No one telling me how sorry they feel for me.

For 2.5 hours I was Denise the hairstylist, the business owner, the mental health advocate, the French bulldog mom. For 2.5 hours I wasn’t Denise, the sick girl.

On Sunday I went to an event at our cabin and I had to use a cane. I could barely walk at all. I was stiff and in pain, embarrassed and exhausted. To all of the people around me who are used to seeing me put my happy face on and swallow back the pain, my invisible illness suddenly became very visible. The way that people look at you in that situation, some with understanding, some with confusion, others with judgement or compassion or simply surprise, is awful. And when they ask me how I am I swallow the giant lump in my throat and change the subject. I do believe that the majority of people mean well, but all of the stares and the pity is an unexplainable level of discomfort that made me want to live in a cave.

I have no idea how I will approach the subject of Lyme with this new guy, I have no idea if I’ll even see him again. For tonight though, I am just so grateful to have had 2.5 hours where I didn’t feel at all like Denise, the girl with Lyme.