Day 5: How does being chronically ill make you feel?
The discomfort and tiredness are frustrating, but most of all I get sad, disappointed, and frustrated when I think of the time and productivity I lose.
I am still trying to teach myself that time spent healing and taking care of myself is not wasted time. It's hard to unlearn those negative emotions and replace them with a healthier attitude about my well-being.
Day 5: How does being chronically ill make you feel?
Physically, I feel worn out all the time and half asleep. A lot of the time, I'm in pain, lightheaded, dizzy, weak, etc.
Mentally, I am also worn out and exhausted. It feels like there is so much I have to keep up with--having to manage my health and make sure I don't enter another attack that knocks me out again. Often, I feel like I'm wasting time by letting myself rest--like maybe I'm just not as strong as other people. Otherall, there's a lot of self doubt and questioning. I also just feel hopeless, like there isn't a life worth living in my future.
But sometimes, I feel like a strong person for living with chronic illnesses that constantly bring me down. It also feels good to be able to support people with similar conditions. That way, I can find some purpose in what I deal with. Still, of course, if someone asked me if they could sure them, I'd accept their offer instantly. Though I'm doing my best to see the positive as much as possible.
Day 15: What would you say to people newly diagnosed with this illness?
Don't be afraid. The pain is only on the surface of your body. You can manage it. It's not going to hurt you on the inside, it's not going to tear your life apart. It's just an illness. It comes and goes just like any other ilness. Take your time to recover. Let your family members , friends and colleagues help you when you are not able to carry out your duties. No one is going to look down on you because you are not able to function fully. Most importantly, Show some Tender Loving Care for yourself.
Day 6: If you could have told yourself something when you first started feeling these symptoms arising, what would it be?
Start keeping track of these incidents and symptoms now. Make a journal or mark everything in a calendar. Pay attention to your irrational feelings without judgement abd observe them. Go to acupuncture! Don't let anyone talk you out if the therapies that are working for you just because they are not treatments they themselves would get. Stand up for the things that work for you and stick with them.
Day 6: If you could have told yourself something when you first remember these symptoms arising, what would you have said?
One of the most helpful things I could've heard back then would probably be, "Don't judge yourself because you can't do things other people can do. You're not over reacting to your symptoms. You're going through a lot, so please don't put yourself down because you're not keeping up with everyone else. It's not you stopping you; it's an illness."
Day 7: What is the biggest realization you have had?
This a few days late. I was really hoping to keep up with this challenge better, but life gets in the way, and that's okay.
One of the biggest realizations I've had was the fact that I'm going to have to learn to manage this. It's not getting better. If it does, I still won't be able to function like a "normal" person. Not much is known about these illnesses, so lots of progress is likely to be made in terms of treatment, but no major treatment options are likely to be available in my lifetime. If anything, my conditions seem to get worse with age. This is something I'll have to learn to accept and live with, despite it not being the life I was looking forward to. I still haven't fully accepted it, but I think I'll be a lot more peaceful when I do. No rush, though.
Day 4
Most of my friends don't actually know I have these conditions, only my closest friends do. My family has reacted in nothing but support, my grandmother giving out lots of reminders on how important it is to keep up with thyroid medication. My mom has also suggested great ways to help me remember to take my pills . xD
Day 8: Where do you see yourself in 5 years time?
Time to continue this challenge thing. I was definitely not looking forward to answering this question...
Honestly, right now, it feels like my life won't change much in the next five years. It's nearly impossible to picture myself getting a job, driving a car, living somewhere else, or doing basically anything on my own. A lot of that is probably based off of insecurities, though.
When it comes to physical health, I hope I'll be able to manage better in five years. That's a lot of time to figure out helpful medications and what's best for my body in general. Knowing all that can take so much time, energy, and experimentation.
I'm hoping I'll find a purpose in life and stop feeling so empty. I'm hoping that I'll have more confidence in myself. I'm hoping that I'll find the right balance in between fixing and accepting my symptoms. I'm hoping that I'll have my life together.
Day 9: Have you ever tried any alternative therapies? If so, what? Did they work?
Okay, I had to look up exactly what this meant. I guess it means alternative medicine or something? Even so, what counts as an alternative medicine at this point? It seems like a lot of alternative healing/relief methods have become more mainstream when they've worked for a lot of people. I guess I'll try to answer as well as I can.
-I've gone to a chiropractor several times to relieve my EDS pain, and it definitely helped short-term. But this was before I was advised about not seeing just any chiropractor when you have EDS because, long-term, it could make your joints worse. I'm going to a EDS-aware physical therapist now who does some chiropractic-like work on my neck and back, and it's working pretty well! (Unlike other chiropractors I've been to, he doesn't pop a bunch of bones back into place in one day, and he does it very carefully.)
-And, obviously, I go to physical therapy (not sure if that counts as alternative), and that really helps!
-Pretty sure I tried homeopathy when I was little, and I don't remember it helping with anything.
-I think, when my mom was really desperate for a cure (she also has health conditions), she took me to some doctor who selected natural remedies through a pendulum. As far as I remember, she would have you hold a pendulum over a variety of substances, one at a time, and the direction the pendulum automatically started to swing would tell the doctor whether we needed a medicine or not. I don't remember what it's called if it even had a name. I was only like 8 when I did this, and I don't remember it helping or making things worse. This is by far the weirdest thing I've done for sure!
-I've tried lots of herbs in the past--can't rememeber whether they helped or not.
-I've tried things like the leaky-gut diet because of my "leaky gut" issues. Either that or another diet I've tried requires eating nothing but bone broth for a few months (unless I remember wrong.) I was only able to do it for like two weeks before giving up. I don't remember it helping, but I didn't stick to it, so who knows. Right now, I'm trying to stick to a diet that consists of high sodium (for POTS), no gluten, low-FODMAPs, and low histimine. It's hard to stick to all of these, so I really don't know if it's working yet. Not sure if that counts, though.
-My mom used to make a lot of kifer and green smoothies. She was also into a bunch of natural oil mixes, so I ended up doing that, too. It was a while ago, but I don't remember it helping--maybe because I hated how it all tasted. I could see all of it helping, though. (Well, maybe not the kifer and ferments because they're high-histimine.)
-There's probably a lot more, but I'm not going to make this post really long, and I can't remember anyway.
Day 1: introduce yourself, what illnesses do you have? How long have you had them?
Hi, I'm Nikki. I'm 30 years young, married to my best friend, designed and built my own house, love baking and crafting and also fast cars! I've got a handful of health issues...
18 months: Wilms tumour (kidney cancer). Right kidney removed, chemo and radiotherapy to treat it.
3 years: Secondary cancer. Found in my lungs. Again, treated with chemo and radiotherapy.
7 years: Renal rickets (knock kneed). Legs surgically broken, wedge cut out and legs set straight.
17 years: Left ventricle failure (weak heart muscle). Heart transplant or pacemaker suggested as treatment. I've been on medications (beta blockers and ACE inhibitors) to control this.
24 years: Kidney failure. My Dad donated a kidney to me. I'm on immunosuppressants to stop the new organ rejecting.
Current day: I've got an appointment for an endoscopy and dilatation next week to look at my oesophagus as I'm struggling to eat. It feels like food gets lodged in my throat.