I Don't Want to Talk About it

Posted by Nikki DiSalvo on


I really don't want to talk about it. And that's how I know I should. Sometimes when things haven't been going well with my health for a long stretch of time and I don't have any answers or solutions, I start to detach from myself and from others where my health is concerned. I get so discouraged that I stop seeing any point in talking about whatever's going on. Which for the past several months has been a bunch of gastrointestinal issues that I can't seem to find a solution for. And of course, whenever my body is experiencing problems like that it kicks up Lyme flares. People ask me how I am and I just grit my teeth and shape my mouth into a smile and say I'm okay. 

It's been turbulent since mid-November when basically my nightmare scenario came to life and I had a Lyme attack at work. Luckily it started while I was walking into the restaurant and not in the middle of a shift, so I guess it could have been worse. Also I was able to speak a little bit so the poor bartender who helped me through it didn't have to be completely in the dark about what was going on. I'm not sure what I was thinking but I kept telling him that I would be fine in a few minutes and I would be able to work. That's ridiculous and not how it works at all. I need at least a few hours to recover after a Lyme attack, especially if it's so bad that I can't get up on my own. He pretty much knew I was full of shit and called Derek right away to come get me. I hate that anytime Derek gets a call from me, or anyone I work with, his brain immediately goes into emergency mode. 

A little while after getting home that day I had another attack, so good thing no one listened to me when I said  I was going to be fine to work! I don't know what it is that happens to my brain during an attack, but when I am able to talk I'm just really unrealistic and stubborn. Sometimes I can't talk and I'm just kind of locked up somewhere in the back of my head watching what's going on. But I always think that I am going to be fine if I just rest for a minute. That I'll magically be able to pop back up and resume regularly scheduled programming. It's like part of me doesn't want to believe anything could take me down. Probably my brave/strong/fighter complex. But if I do try to get back to normal activities too soon then I'm really setting myself up for disaster. So I have to try to learn how to stop myself from feeling the need to assure everyone (and myself) that I'm fine when I'm not. It's been a series of ups and downs since then.

I've been having issues with not being able to eat without having a very upset stomach for quite some time now. That's not totally true, sometimes I can eat and be fine (like 1/8th of the time) but the rest of the time I either take a few bites and immediately get stomach pain or I eat and then shortly after I feel sick with nausea, stomach pain, etc. This is very sad for me because I really love food. I love cooking and I love eating. And I can't figure out if there are certain kinds of food that make it worse or better.  From what I can tell it appears to be pretty random. 

So for about 4 weeks it was all diarrhea all the time. I was exhausted, losing weight, and sick to my stomach almost constantly. I went to the doctor about 2 weeks in and she did some testing, all negative. I also had a Lyme attack in her office, which she didn't appear to react to in the least. I was having trouble walking because of the muscle cramping/tension and being so lightheaded, but somehow she didn't seem to think it was a big deal even though it took me a ridiculous amount of time to get on the exam table. I told her I was having an attack at that moment and her response was basically, "Okay". She even let me leave her office without questioning whether I needed any help getting to the lab she had referred me to, or if I would be okay driving myself home. I must have seemed like a disaster since I was so out of it and could hardly walk, so when I thought about it later it was super strange that she didn't so much as comment on what was going on. 

Anyway, after an ER trip a few days later also revealed nothing (I was having really bad lower right quadrant pain), I was referred to a gastroenterologist. Before I saw the GI doctor, the diarrhea became constipation for a couple weeks and has been either one or the other ever since. I lost about 15 pounds in that time but the weight loss has stopped in the past few weeks. There was a good long time where I was basically living on Pedialyte, so it's understandable how that happened. I'm eating some kind of real food every day now, but cautiously. I never know how my stomach is going to react. 

This was not awesome timing for this stuff to be happening. Not that there is ever a great time to lose the ability to eat normally and be nauseous all the time. But it started between semesters and continued as the new one began. And it's a busy one. I'm still serving and bartending at the restaurant, taking 4 classes, and doing an internship at a community mental health center 15 hours/week. I was working 5 days at the restaurant but I asked to cut it down to 4 because I realized I wasn't actually Superwoman (this has been a big surprise to me each of the approximately 500 times I've come to this realization). 

All things considered, it was going relatively well until a couple weeks ago when I had to have a colonoscopy and upper endoscopy to see what was going on with my guts. I almost wish I never did it because things have been so rough ever since. I had a Lyme attack right after I woke up from the anesthesia, which sufficiently freaked out my nurse. Luckily Derek was there to reassure her and help me through it. But I was down for the count for about 3 days after it. Which meant that I missed work, school, and internship. And I felt what at the time felt like an insurmountable guilt about missing those things. Of course, everyone understood and told me to just focus on getting better. I decided to focus on how mean my body was and how everyone was going to start to realize that I'm not someone who can be relied on and my life would fall apart. Believe it or not, that didn't actually happen! Just like usual, I was overthinking and not giving the people in my life enough credit for being wonderful and compassionate. In those moments though, it's so hard. 

The testing turned up nothing. The doctor "diagnosed" me with Irritable Bowel Syndrome. Although this is the diagnosis that he told me at our initial appointment is the "garbage can" diagnosis where they put people when they can't figure anything else out. Know what he told me to do about it? Reduce stress and exercise. Very much not helpful. My thought is that, like with a lot of other issues, if my Lyme was under better control the tummy stuff would get better too. But right now I just can't afford the cost of an LLMD. It's $450 out of pocket just as a baseline cost of the first appointment. After an ER visit and the colonoscopy/endoscopy, it's just not going to happen for a while. I'm not sure I'm ready to go back on IV antibiotics anyway, and that may be what an LLMD would suggest. I'm still taking all my meds and supplements and every once in a while I switch them up a bit to see if something will work better. I'm looking into CBD oil (also expensive) and I'm thinking about going back to using Banderol and Samento. If you read in my earlier posts you'll find where I was using those in the beginning of my treatment. Maybe in my next post I'll have some happy progress to report after I start some new treatments. 

Yesterday also ended up as a difficult day. I took my big little dogbert for a walk in the cemetery (yeah, I'm weird, whatever) but started to feel off when we got to the far end of the cemetery. 

We had only been walking for about 15 minutes but I knew it was time to head back to the car. I was feeling pressure in my head and things were getting blurry. My neck was also getting stiff and I was nauseous. It's a really short ride home, less than 5 minutes. But as I got close to our road I felt my face start drooping and it was off to the races. I managed to get the car in the driveway but my right side was already all cramped up. My hand was a claw and my leg was cramped at an awkward angle (my right side is still super sore today from how focused everything was on that side). I was really weak and couldn't move much. 

My left side was working a little better and I was able to send a message to my friend/neighbor/co-worker who literally lives across the street. I asked if she could come get Flint out of the car and take him inside because I was worried I would either fall or lose my grip on his leash and he would run away. I don't know if he really would run away or not, but I didn't want to risk it because I certainly couldn't chase him. She came right away and got him safely in the house then helped me get inside. There aren't many people who have seen me having a Lyme attack and it's always embarrassing. Everyone tells me "don't be embarrassed!" but I can't help it, I am. Imagine trying to walk and your legs shaking so badly that you have to walk in a crouch so you won't fall down. Someone is holding you up. You're hardly able to breathe and you're making awkward grunting/squeaking noises as you move at an absolute snail's pace. And you're crying. Because the tears just come every time, I don't know why. And in this case, I was all sweaty from the effort of getting back to the car with the dog. Dunno about you, but it's hard for me not to be embarrassed in a situation like that. 

Now, though, more than being embarrassed, I'm just really grateful that she was there to help me. I don't know what I would have done without her. I guess I would have had to just stay in the car with the dog for a few hours. But the thing is that shortly after getting into the house I started puking. So that would have played out disgustingly if I had to stay in the car. After I puked for a while and layed on the bathroom floor, she helped me get into bed, took my blood pressure and got some meds for me. She also was a huge help in getting my shift covered for the night. And she stayed with me until Derek got home. I fell asleep before she left and slept for almost 5 hours. I feel really lucky to have such a brave friend who was willing to see me like that and still stay with me. 

I've got to hope that this rough patch is almost over. I'm doing so many things that are important to me and that I love... but this stupid Lyme stuff really gets in the way sometimes. I do try to treat myself kindly around it, like a best friend would, but it gets tricky. There are so many places to get stuck in negative feelings, for two main reasons I think. 1) my autonomy; I often feel like Lyme is taking away my independence. And to an extent it does. I can't live like I used to, totally pushing myself to the limits. I can't just run out of the house whenever I want to and go galavanting with my dog. I can't always use the computer when I want to do homework or research because it gives me headaches and makes me nauseous. Right now I can't go to the store because driving was making me feel all fuzzy so I had to stupid freaking come home. What I really want to be doing is playing disc golf. Sometimes I just can't do stuff. I have to rest. And I fucking hate it. I hate resting. Maybe that's not totally true. I hate resting because I have to. I love resting when I feel like I earned it. There's definitely a difference and I'm coming to terms with how to separate the two in a healthy way. I have to have my phone with me all the time just in case of an emergency. I feel sometimes like I imagine older people feel when their families begin to question whether they can still do things on their own. Not that Derek really tries to limit what I do, he knows better 😉. But the feeling is still there. 

And 2) my need to feel reliable/responsible/solid/perfect(?); I have such a need to make sure that everyone is taken care of and happy (by being responsible/reliable, etc) that I end up not taking the best care of myself. I keep deleting that and retyping it because it feels really vulnerable to admit it in writing. But it's true. Probably partially because I'm the oldest child, I have the drive to be seen as in control and having it all together, the one everyone can always rely on. And anything that gets in the way of that feels like a real threat to me. Learning to cohabitate with Lyme more peacefully and less like enemies is also something I'm working on. Things are hard and stuff.

BUT! So many things to look forward to and be happy about! My little sister is coming to visit in 10 days (!!!), our friends will be here for GBO in April, and we're beginning to plan our trip home for a week in August. Super excitement. And also little things. The weather is getting lovelier by the day, I have paint and canvases just waiting for me to tackle them, and I'm starting a therapeutic group for people with chronic illness at my internship site. Also, Lyme Warrior DG has been doing really well, spreading Lyme awareness among disc golfers (and others) all over the world. And, very very importantly, I have an amazing husband who makes me laugh till I almost pee every day. These are the kinds of things that keep me going when it gets rough in this body.

The way Flint looks reminds me of Derek in this picture...
From probably 12 years ago

Be Well,
Nikki