March 2013
2 posts
6 tags
Nearly three years ago, I was a teenager with a handful of diagnosed chronic illnesses, with a couple more ‘yet to be confirmed’. I had few people to talk to and needed to find a way to deal with my day-to-day problems because biting back every thought was not working out. Little has changed. Sure, I am no longer a teenager, I have been officially diagnosed with more illnesses, but...
January 2013
1 post
In case it wasn’t obvious, I am on a bit of a hiatus. I wish everyone good health in the new year.
December 2012
4 posts
If only you got paid for being professionally...
danathepaina:
I’d be rich!
Well… techically… I kinda am. The Australian Govt. appreciates that being chronically ill is a full time job for me.
Diary Of A Sick Girl: Having support from your... →
sickgirldiary:
A lot of times when you see people suffering or know that they are in pain with a chronic illness, you assume that they have support from their household members and family. Sometimes, that’s not the case. It can be very difficult growing up in pain and not either having some people believe your…
5 tags
In the dark with CFS/ME
“No news is good news”, right? We didn’t find cancer. We didn’t find tumours. There is no sign of MS. We should be happy. We should be relieved.
When I first became sick, I did feel like that. But more and more tests are done and still, there seems to be shockingly little information. Yet I am still left with this illness and it’s not going away. It spreads and...
November 2012
12 posts
Fibromyalgia Problems: 10 Ways to Help Out Your... →
fibromyalgiaproblems:
1. Don’t pull away when they talk about their illness. Especially if they’re recently diagnosed, they’re not doing it for attention. They’re not doing it for pity, they’re doing it because a diagnosis and an illness are a HUGE thing in a sick person’s life, it’s something to talk about. Just…
1 tag
My head is clearer than it has been in probably 10 months. I feel so much lighter. I might not have much else, but I’ll take this.
Thank you, thank you, thank you.
The Lying Disease: Munchausen's, Faking Diseases...
chroniccurve:
uctdgirl:
burningweird:
The Lying Disease
I actually remember that blog, the “catsnotcancer” one I think i might have reblogged something from them once?
And it is sad and makes me sick to my stomach
because I am sick and I feel like everyone thinks I am lying. Not just online but all the doctors that are supposed to help me. Enough people do this it’s a legitimate fear now...
Chronically Screwed.: It's 2012: Dismissal. →
theretiredbridgeburner:
chronicallyscrewed:
Last week, I sat (and by sat, I mean sobbed) through a difficult appointment.
I was told that I have experienced a major trauma (eg. sexual abuse) that I am determined to keep hidden from myself and everyone else. He insisted that this trauma is the cause of all my pain and suffering. He refused…
Find a new doctor. Nobody deserves to be blamed for...
Blood Work | How to make it as pleasant as...
itwaslupus:
So, I’m sure many of you are like me, and get your blood drawn fairly regularly. And perhaps over the years you’ve learned to take each visit like a pro and the process doesn’t even phase you by now. Or perhaps you’re like me, and no matter how many times you go through this it will always be a miserably unpleasant experience.
I did a quick search, and while I saw plenty of...
7 tags
It's 2012: Dismissal.
Last week, I sat (and by sat, I mean sobbed) through a difficult appointment.
I was told that I have experienced a major trauma (eg. sexual abuse) that I am determined to keep hidden from myself and everyone else. He insisted that this trauma is the cause of all my pain and suffering. He refused to listen to me when I said that the only trauma that I have really endured is the fact five and a...
Any Endometriosis and Chronic Fatigue Syndrome...
lovelyday2bme:
endoworld:
I have been struggling to write anything on here recently due to the sheer lack of energy I have to think of anything to type. I am really starting to think I have chronic fatigue syndrome as well as endometriosis. Is anyone else in the same situation?
I have been doing research recently and endo and CFS seem to come together often.
My energy level stays low, I...
I am okay.
I’ve had a few messages asking what happened with my recent appointment - but I won’t be going into details right. It is still very raw for me at the moment and whenever I try to smash it out, it does not feel rewarding and, if anything, makes me feel worse.
With time, it will come out.
Let’s just say that this was a previously trusted doctor was shockingly old...
4 tags
It’s 2012.
Why are CFS/ME patients being treated like this?
I have never walked out on a doctor before and I hope I never have to again.
“As I lie here, wishing and hoping and simply trying to survive, I (and the...”
– Emily Collingridge 1981-2012 (via claggy)
3 tags
Depression is constant. It feels like something is stretched over my skin, peering over my shoulder and watching every thing I do. It’s always there. It’s always lingering over me, in me.
But often, often it truly hits me just as I slip into bed and under the covers. I try inhale and suddenly it’s like there is no air left in the room. It’s like I am being covered in these...
October 2012
13 posts
2 tags
The bad news is that two doctors have told me that there is essentially nothing they can do for me. The good news is that I only cried at one.
Chronic Illness Problems 10/29/2012
chroniccurve:
Pick up water.
Pick up bottle of pain medication.
Swallow water.
Realize about 2 minutes later that I have absolutely no recollection of whether or not I actually took the pain pill.
Does this happen to anyone else?
Edit: I FEEL SO MUCH BETTER THAT I AM NOT THE ONLY ONE. That is all.
This is exactly why I had to get a pill box. Because sooner or later, I would cause an...
chroniccurve:
hellomynameismaddy:
Dear person who previously suffered from a long-term illness,
Saying that you got better because of your positive attitude perpetuates the myth that being sick is the fault of the sick person and invalidates the experiences of all of us whose bodies aren’t budging, attitude or no.
Completely agree. A positive attitude is a type of coping mechanism, not a...
I have updated my blog with a new theme for a bit of a fresh look. If you have any problems with reading or navigating it, please let me know - especially as I know most of those around here have disabilities or illnesses themselves.
3 tags
Uterus talk.
Does anyone else get cramps (and sometimes some spotting) if they have been on their feet for too long*?
It’s something that I started to experience this year and its just not going away. If I’ve had a big day out and about, it brings on cramps while I am standing and then later on, too.
According to google searches, this can happen to pregnant people… definitely not in that...
3 tags
You know what is awesome?
Recently I made a post about not having enough heat packs for my widespread chronic pain.
Without even knowing about my blog, guess what my friend got me for my birthday? A really adorable hot water bottle.
fiveprettyparasols:
I hate the saying, “I have -insert illness here- but it doesn’t have me!”
Are you kidding me? My chronic illnesses dictate my life. They make the decisions. This is not a democracy - if Fibro flares, I’m down. If IBS flares, I’m out. Migraine? Forget about existing in the real world.
I’m not trying to be a debbie-downer here, but GET REAL.
“This is not a...
Going through the chronic fatigue tags is making...
m33kachu:
I don’t know guys.. There is just no evidence that I will get better.
You may not reach a full recovery, but live for the day where you will gain some strength and be able to do more than you can today. It’s the only reason I can put one foot in front of the other.
Passengers Use Wheelchairs To Avoid Airport Lines →
fibromyalgiaproblems:
This is ridiculous.
I’m not saying NO ONE fakes needing a wheelchair, because I’m sure it happens, but I seriously doubt it’s to the degree that is implied in this article. I don’t use a wheelchair, at all, but honestly, if I were going to fly right now, I’d need one. I can’t stand in line for any extended period of time. Not that I’m opposed to “waiting” in line, I just...
I don’t care if I am bedridden for the next month, this week is going to be good.
“The bravest thing I ever did was continuing my life when I wanted to die.”
– Juliette Lewis (via allthingssoulful)
Accurate. (via missgingerlee)
September 2012
19 posts
kashforthought asked: Love your blog! I've been struggling with chronic pain myself for about six years and MS for two. It's nice to see that there are other people out there who understand what its like.
6 tags
One day
People say to me “you might go into remission one day” and expect me to find hope in that. They want the thought to comfort me, so that I’ll suddenly be okay with having already dealt with the illness for five years. But in all honesty, it does nothing.
Yes, I might go into remission.
Possibly.
Maybe… one day.
I still don’t know when. I don’t know if...
Pain is maddening.
I deal with many symptoms - ranging from poor coordination to extreme fatigue - but when I’m facing a week or more of unbelievable pain that in most of my bones and joints for essentially no reason… I don’t cope very well.
I am in pain every day, no matter what. But right now, it’s especially bad. I can’t sleep. I can’t focus on my essays. I...
2 tags
Chronic pain problems:
When you realise that you only have one heat pack to essentially cover every bone and joint in your body.
The amazing things I do are not done because of my...
1 tag
How to survive chronic illness - my top 5.
1. Don’t like your doctor? Don’t see them. I really can’t say this enough. Luckily, it’s something I learnt to do this pretty quickly. If I don’t like my doctor by my second visit, I will not go back. When I say “don’t like my doctor”, I’m not saying that I’ll leave a doctor that I don’t enjoy on a personal level - it’s about...
poolpartypirates:
immune systems need to try harder at this “immune” thing
My stupidity.
This is a difficult thing to explain, but I should start off with stating that, yes - I am a woman.
And for a while, I was uncomfortable with women in the position of authority. This stemmed from something simple: every one of my bad experiences with my illness were generally inflicted by women teachers or doctors. One time, it was severe enough for a woman to lose her job over her treatment of...
Much Too Young to Feel This Damn Old: Why CFS/ME... →
muchtooyoungtofeelthisold:
If you got your diagnosis from a GP, these are probably what you were told would make you better. I would like to warn you, that a significant number of patients report these treatments to be far from helpful, and even make them worse. Unfortunately, research into psychological causes of CFS/ME…
Yes… and no.
My personal belief is that CFS/ME is a blanket...
It’s important to take time to appreciate the little things in life, even if it’s just fresh pasta.
1 tag
What is an invisible illness?
The first thing to realise is that the term ‘invisible illness’ is not code for ‘less serious illness.’
It’s a term that is used to describe a long list of illnesses - ranging from Lupus to CFS/ME. They reference the fact that there is no obvious sign to a passerby that the person is sick or disabled or at least no obvious sign to what has caused that person to be...
Even if you think you don't know anyone with...
perpetualswansong:
missgingerlee:
alemonlemoned:
when i was going to school, i had a friend share with me that she had lupus — after i told her i’d been out of school the entire past year because of a chronic illness. another friend, who i’d been reasonably close to (and crushed on) during middle school, told me she had rheumatoid arthritis only years later, and only shared this after i...
6 tags
Chronic Invisible Illness Awareness Survery
I don’t usually get into this kind of thing, but it’s a special occation. Following Chronic Curve, I’ve completed the 30 Things About my Invisible Illness You May Not Know Survey.
[[MORE]]
1. The illness I live with is:
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Endometriosis, Adenomyosis, Fibromyalgia (although this is still questionable), plus a cluster of what I...
4 tags
I can't believe it sometimes, either.
Friend: I can't believe that you've been sick for 3 years.
Me: .... 5 and a half.
Friend: What?
Me: Yeah.
Friend: FIVE?!
2 tags
I wanted today to be a day where I could take a walk to make the most of the excitement that spring is finally here and maybe even convince my parents to drive me to the shops so I could buy a couple of books. But instead it’s a day that will be spent in bed or the couch, where the most I will do is paint my nails.
Having my chronic illness means that I have to make these trades every day....
A Supermodel With Lupus: Seven Things I Learned... →
supermodelrevealed:
Seven Things I Learned About Life With A Chronic Illness 1. Laughing Feels So Good To The Soul There are a lot of things about chronic illness that are not funny, but life has this way of reminding you to laugh. I read somewhere that if an angel thinks you could use a laugh to brighten up your…
“Recovery is not a team sport. It’s a solitary distance run. It’s long. It’s...”
– Meredith Grey, Grey’s Anatomy (via shetakesflight) 