30 day chronic illness challenge

Day 22: How do you feel you have been treated by the medical system? Explain.

I don't know. I haven't been treated horribly--at least not as bad as some people. I could've been treated better, though.

I won't go into too much detail or write about certain situations because that would be stressful in itself. A good amount of doctors I've been to also had a habit of contradicting themselves, sending the conversation in a spiral until I gave up on trying to undertsand something. I'm starting to learn that, with most doctors, I just need to accept what they tell me and look for clarification online when I get home. Many doctors have also made their own explanations for why my weight is so low. In the end, my voice, questions, research, and insights don't matter. And there's so much more I don't even want to bring up.

But honestly, I've been pretty lucky. I've also had a lot of good doctors who have made a big difference in my life--some who are even fun to be around. I'm happy to have them, especially after hearing about how so many people can't find a decent doctor who will even believe their symptoms. I think things are going in the right direction.

Day 10;

Naps! They help me get on with the day though I'm not really meant to have them, but sometimes I'm so tired, a nap can remedy my fatigue and my aches and pains!

Day 23: What do you say to yourself when you need a little pep talk?

One thing I can say to myself/think that seems to work decently well for me is, "You've felt like this before, and you got through it. You don't always feel this bad." Of course, this is during an episode of feeling worse than I normally do. It probably wouldn't work for someone whose illness doesn't have ups and downs. I think telling myself that I've felt this way before helps because it connects me to other times in which I've felt this way--all of which I've recovered from. On top of that, thinking of times where I've felt better can make me look forward to the future... or at least feel less hopeless about it.

Day 1:

Hi, I'm Tayla and I've got a bunch of different things. Chronic fatigue and pain, spine deformation and migraines are the main culprits. I've been in constant pain since I was about 13 and have had migraines since 14. I get them about once or twice a month at the most, for which I consider myself lucky. I have a severely misshapen spine, starting from my forward neck, to my hunched upper back, my severe lordosis with pelvic tilt. It started when I was in primary school and just got worse as the years went by, causing me more and more pain. My chronic fatigue started after the appearance of depression when I was 14. It was worst at the end of high school when the stress had caught up to me and was severely affection my cognitive functioning. I'm seeing a specialist for my pain and until we have some tests done we have no idea what's wrong with me.

Day 15

What would you say to someone newly diagnosed??

I would tell someone who was newly diagnosed with COPD to stay strong!! That it won't be easy to change your entire life.. And you can not let it beat you!! Keep doing the breathing treatments, and taking the medication.. It's annoying and time consuming, BUT I would rather do a 15 minute breathing treatment 3x a day then be in the hospital on bed rest for a week..

Keep moving forward, don't dweel on the coulda, woulda, shoulda's.. Instead focus on today be grateful for every minute!

Day 24: How have you managed to juggle your social life through your illness?

To put it simply, not well, especially if we're taking mental health issues into perspective. I end up spending a lot of time in doctors' offices, which takes time out of going to college or talking to people in general. Feeling sick doesn't help either. Many people don't seem to understand that, so I often end up feeling even more disconnected from others. I also have a habit of disappearing when I feel like I might be judged or if relationships get too close, so I don't have much of a social life now. I'm lucky to have my partner, though. He's seems to understand all of this chronic illness stuff so well.

Day 11

It's hereditary and luck. It's also because I'm female. My brother has one or two of my conditions and so does my dad, but they all affect females worse and actually have an affect on me day to day.

Day 12

Psoriasis - It's really embarrassing having large flakes of skin in your hair, even if you've washed thoroughly. People always think you're dirty. When you first treat it, it's absolute agony; like pouring acid on your head. Mine has no spread to my ears which causes it's own problems. You can't stop picking though, when you feel some skin, you want to pull it off but it gets sore and the more you do it, the greasier your hair gets. You get used to constantly checking your hair line to see if there's any skin showing. It's also impossible to shake your hair out in front of people, unless you want them to see the little snow storm amongst your hair.

POTs - The tiredness is my biggest issue. Think of a time, you're so tired, you can't focus on much and you can barely use your brain - that's me most days. You feel weak, shaky, your legs like jelly and light headed. You just need to lie down and sleep but you can't when in work. I have to prioritise salt and fluids every day, although I find it hard to drink a lot. It's hard to try to eat less when, if you don't eat enough, you will have a bad POTs day. Brain fog is a huge part but people are skeptical about that part, including my mum but my memory and cognitive function decreased about two years ago and brain fog describes it perfectly.
I want to go exercise all the time but I'm so tired and I know exercise will literally exhuast me, so I could physically not be able to get up at 6am to exercise before work like some people. POTs causes exercise intolerance (people probably think that's made up as an excuse to be lazy) and some days, exercise can make me feel so horrendous. I don't ever get that wave of nice feelings due to chemical release. The only nice thought is the fact I'm doing something beneficial to my body... and going home to laze for the rest of the day. You have to exercise gently which to me, feels pointless as I want to exercise hard and sweat!

Hypermobility - This causes joint pain when I walk for a while, as well as a bad back, or sometimes when I've done nothing at all. My joints bend backwards so I can be in a lot of pain in the morning if they've all been bent backwards all night and I try to staighten them. They click all the time which can cause irritation in my joints, causing this warm pain. My hips started clicking over the last year, but the whole joint joults and you can see and feel it move. I'm more likely to get osteoarthritis due to this condition. When I walk, I feel like my joints are unstable and when I'm tired, it's easier to just collapse as my joints go from beneath me. Strains and sprains are more likely and tendonitis, an incredibly painful condition which can reduce me to tears, comes quite often which can disable me and got in the way a few times in college.

I don't feel like a 21 year old, that's for sure. It's harder when people don't realise that you can be ill, just not see it.

DAY 16

Whats your favorite inspirational quote?

It is never too late to be who you might have been. — George Eliot

Day 1: My name is Meghan, I am 22 years old. I have fibromyalgia and endometriosis among other things. The fibro started at 12 and the endo at 15.