So today has been a whirl wind of a day! First off
I FINALLY WAS WELL ENOUGH TO GO TO A HAIR SALON AND CHOP MY HAIR.
I have not cut my hair since December minimum….. So this was a monumental moment. I know a lot of you are thinking I’m probably being dramatic, that I could have just gone to someone’s house if I was so worried and cut my hair. But you just don’t. For one, why would I choose to shit in someone’s house when I’m going over 20 times a day? If I’m going to suffer, at least let me suffer in the comfort of my own toilet. Plus you’re just so tired and all you want to do is sleep or curl in bed, not sit for an hour making small talk.
But we did it! And I love it. It’s going to mark the beginning of my next chapter. Because second exciting news!
I am officially starting Entyvio on Friday afternoon! Let’s hope I actually respond to this treatment….. But I will talk more about this after I actually go through the process on Friday so I can give you guys more insight.
But today I wanted to talk about something that’s really important to me. These past few weeks have been such a roller coaster. I went from 3 weeks ago not even being a functioning human of society, to now not even feeling or looking sick. But I am. That hasn’t changed.
I think one of the most frustrating part’s of any invisible illness is the fact that it is invisible. I feel like there is sometimes such a disconnect, whether it be other people looking at me and wondering if I’m really “that sick”, or it be myself even. Lately I’ve felt so good and “normal” but I know it’s only because I am 35 mg of prednisone. I know as I start to wean off it (which I already am) I will tank again and look and feel sick again. The gravity of my situation hasn’t even hit me fully yet because I feel okay. When I sat in my doctors office, he told me that at this point there wasn’t much of a difference between myself and a cancer patient. With the medications I am taking and the state of my colon- I could be facing possibilities of having colon cancer now that I am severe pancolitis. Cancer. That word should freak me out. But instead I’m more devastated that Prednsione and drugs like methotrexate will make me lose more of my hair. Obviously, my doctor was quick to point the error of my ways in thinking and that I needed to start taking into account the gravity of the situation. But it’s hard when I don’t feel or look sick. I feel normal and that’s really all I want, to be normal.
So I want to talk about other side effects that no doctor or website really dived into. Or the gravity of these side effects. I thought this illness was going to be a walk in the park, especially when I was told I was mild to moderate. I thought it was just a pooping disease. Nothing really could prepare me for the actual battle I have been facing and continue to face. I’m not saying everyone who is diagnosed with an IBD is going to go through this or that if they do it will be exactly like what I have gone through. But it’s a glimpse into what my battle has really been like.
- Fatigue/Lack of sleep: especially being back on Prednisone, this has been a killer. The fatigue you feel is unlike any “tired” feeling I have felt before. I. Have. No. Energy. I get winded from showering! There have been times where I have to sit on my toilet for at least 5 minutes to get my shit together and SLOW DOWN MY BREATHING. Is that not the most ridiculous thing you have heard? I have to drive with my windows down in the dead of winter to circulate cold air to keep me alert and I have even had to pull over because I have felt too tired. And then of course when it’s time to be in bed at a reasonable time, my body is wide awake. Lately my newest trend is waking up at 4:30 am to have an attack and then instead of falling asleep right after, I toss and turn and stay awake in bed until it’s time to get ready for work. So lately I’ve been getting 4-5 hours of sleep. Yesterday I got 6 and it was a miracle.
- Memory Loss: and of course this has to have some sort of domino effect on your brain functioning right? Because let me tell you, it does. Somedays I feel like an old lady with Alzheimer’s. I will legitimately forget conversations I have had with people, I have forgotten that I have said I would go to concerts with friends and even paid for my ticket, I repeat stories, it just goes on. I am an avid list writer now because if it’s not on the list I will forget about it or remember it at a really inconvenient time. With starting school again, this has been stressing me out. And I think my brain in general is just becoming a big pile of mush. My fine motor skills have been seriously lacking. I spill, break, and drop everything. I forget things like gravity exists and somehow pour my tea all over the floor because I’m tipping it over to check why my mug is wet on the bottom. It happened people. And this was just right after I attempted to pour sugar in my tea and completely missed, resulting in it getting everywhere all around my mug instead of in it. I’m just an overall slower functioning human and people need to forgive me. If I’ve told you this story, just tell me. Save my breath and energy for other things since I don’t have much of it!
- Hair Loss: Seriously, I have been so devastated with this side effect. It’s a side effect of the disease when it’s really serious and a side effect of a lot of our medications. I didn’t realize how much hair is a security blanket until it starts falling out. And I don’t mean the regular shedding most people go through. I’m talking pulling strands upon strands every morning and evening, collecting it from the bottom of my shower every time (and now snaking my shower twice and still not fully getting it all out), and collecting the strands that have collected under my sink from when brush my hair. There have even been times where the static on my clothes has been so strong that it has actually collected and pooled under my arms so it looks like I have hairy arm pits but it’s really just shedding. And while most people have argued that it doesn’t really look like I have lost hair, I know I have. Everyday I have brushed my fingers through my hair and have felt the volume diminish each passing day as I get more and more sick. It became a reminder to me of how sick I am. My body was trying to tell me that we weren’t okay.
- Joint Pain/Chest pain: This is one of those things I wished I was better informed with. Because it has been one of the most physically crippling side effects I have experienced. My primary spots are usually my neck, shoulders, upper back, knees now, calves, and feet. My feet will literally spasm and lock in this deformed shape. Back in my Vancouver post I talked about how I even had to wrap my foot in a tensor bandage because it felt like I broke my foot but it was just joint pains. And there really isn’t much you can do about it! You can massage it out, but it comes back in a couple days anyways. Tylenol does shit all for me. I don’t really want to be popping more pills anyways. So you learn to ride out the spasms and just cry it out when you need to. Unless someone has a better way of coping. I’m desperate and open to suggestions. The chest pain was a whole new level of discomfort and panic. The first time it happened I thought I was having a heart attack. It was a searing, tight pain that woke me up from my sleep. It burned and travelled across my chest, down my upper back and I could even feel it in my arms. Hyperventilating does not help it. Chest pain with IBD can be related to a number of things including just the disease being bad, anemia, or even simply just heart burn. I’d never had heart burn prior to being diagnosed, so that was a learning curve.
- Weight issues: When you are in an active flare, your weight is everywhere. I have gone from gaining 10 pounds to losing 15 pounds in less than 2 week spans. Medications also play a big role in this. For myself, keeping weight on has been my biggest struggle. During my flares I have gone down to as low as 87.5 pounds. Again, when you’re going to the washroom over the 20 times a day, how much are you really retaining? I have suffered from dehydration as a result of my body just refusing to keep anything in. But then comes the other side of the spectrum. I know when I started getting better there was a big pressure to start incorporating exercise back into my routine. While the idea of exercise is always so appealing (but not actually) the actual practise when you are sick is not always feasible. If i’m getting winded showering, I am guaranteeing you that I will faint going for a jog. I run an hour program for 3 years olds and these 3 year olds out run me at this point. Our bodies are attacking ourselves, we need to give it time to heal. My doctor even told me that 8 minute walks are usually the most they recommend during an active flare. Just because on the outside I look fine, doesn’t mean I am fine on the inside. Please be mindful of this. Pressuring someone or shaming someone who has gained weight as a result of their disease doesn’t motivate them. We know what we need to do, we know we need to make healthier life choices, but we have lost control of our bodies. Give us time.
- Anxiety/Depression: This was something that was briefly touched on during the hard parts of my journey AFTER I asked if it was normal to go through this. Guess what? It is highly common to suffer either or both of these mental health problems, but yet no one seems to want to talk about it! I struggled to gain control of my mental health and still continue to battle it. In my opinion, therapy should be included in your treatment plan. If you want to take care of your whole self then you need to address these issues. It’s such a hard part of the illness. You don’t look sick. But yet here I am being told that I am equivalent to a cancer patient. How could I not ruminate? How could I not develop anxiety when a huge trigger for anxiety is a loss of control and my body has physically lost control of itself? I have lost control of myself. There have been times where my anxiety has been so bad that I have felt like I wanted to crawl out of my skin, hit a wall, or just have felt claustrophobic or struggle to breathe as I enter what I think was my first anxiety attack. It’s something that can be so crippling, but yet is something so under-talked about during your process in this journey. I think so many people would benefit knowing that this is part of the disease and that it is normal. Instead I felt weak for allowing myself to get to that point because I thought maybe most people had their shit together and I was just the one falling apart.
- Social changes: This disease indirectly impacts your life on so many levels and that was something I was also not prepared for. I lived in this world where I thought really it would just impact me the most. But it sucks everyone in. It impacts your support system in all sorts of ways. Everyone has their own ways of coping with things and quite honestly some people just can’t cope and unfortunately there are circumstances where your illness will result in people walking away. It impacts how you interact with people on a daily basis. I for one have felt like a burden or someone who is inconveniencing my friends and family. I have chosen to stay home because it’s just easier. This summer I stayed home most of my days because it was just too hard to go out and always be looking out for a washroom or having to hunch over in pain because my ulcers pick the worst times to act up. I have mastered the art of pretending to look at crackers on the bottom aisle of a grocery store, when really I’m just trying to clench my cheeks tight enough and allow my stomach to settle enough to make it across the store to the washroom. I have had to have talks with my boyfriend about our future and how this can all change as I begin new treatment plans. We’ve had to look at our future with kids! I’m 23 and haven’t even thought about kids yet and now I’m being told I need to start thinking about this because of drugs like methotrexate. I thought I still had time. I have had to endure weird looks in the washroom after I have a bad public poop attack. I’ve had to deal with remarks of people asking how sick I really am. I’ve even dealt with people blaming me for my disease and that if “maybe I just ate better” “maybe if I had less stress in life” “maybe if I was more into natural things” I would be okay. F you. I am not choosing to suffer and have not chosen to go through this for the last 8 months. They only know 50% about the disease at this point, so don’t you dare act like you know anything about what is happening with my body. It is so different for everyone.
I could really go on at this point but I think I have spammed you all enough. Again, this is just the tiniest glimpse into my life. This isn’t even talking about the actual poop attacks, the abdominal pains, the ulcer pains, the skin problems, the anemia, ect. These are just some of the things I wish someone had told me I would potentially have to go through when I was first diagnosed. It effects 1/100 people, yet we know so little about it and again there is such a disconnect because it is an invisible illness. And there’s no guarantee! I was told this would be a walk in the park and now look at me. It can all change so fast. Just when you think you have your feet planted on the ground, life throws you a curve ball.
If you are going through this I hope you know you are not alone. I hope you know there are people who get it. Who know the daily struggles, even when you are in remission. And if you know someone who is suffering with IBD I hope this gives you some perspective on how complex this all is. I hope you see their strength and believe when they say how sick they are.
Have a lovely evening!