Sunday, February 3, 2013

10 Ways To Help Out Your Chronically Ill Friend

This is a fantastic post written by Jenna at 

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 listen, you really don’t have to say anything else. Just be someone they can talk to. 

2.  Do research about their Illness/Illnesses.
Nothing is harder than trying to explain what it’s like dealing with a chronic illness to a healthy person. It’s like explaining color to a blind person. If you know what illness they have, do some research, find out what it is, what symptoms they deal with, and even how other people with the same illness deal with it and describe it. Don’t be afraid to ask questions. 

3. Offer help 
Okay, this one gets complicated. You certainly don’t want to make your ill friend feel bad about not being able to do things. Also, we tend to refuse help. Not always out of pride, but out of fear that people will get tired of helping us or dealing with us.(Like they often do!) So, if you know that something is hard for them(lifting objects, opening doors, opening bottles, carrying groceries) offer help in a way that makes it clear you really want to help, not that you “feel obligated” and also, if your friend says they can handle something, let them. Yes opening bottles hurt, but sometimes we get so frustrated with what we can and can not do that we’re wiling to put up with some pain because we just want to do something for ourselves if we can manage it.

4. Accompany them to Doctors Appointments, or offer to help schedule appointments.
 Scheduling doctors appointments is *such* a hassle with chronic illnesses. Most of us see many doctors, or need to see many doctors, so it can be hard calling all around trying to schedule appointments.
Doctors appointments are also a stressful thing, and it can be nice to have a friend accompany you. It is also hard for many sick people to drive to their own appointments  Your friend may not want you in the exam room with them, but offering to drive them and sit with them in the waiting room could be a *HUGE* help.

5. Understand that they may need to cancel plans last minute, and be okay with rescheduling.
Chronic illnesses are often so unpredictable. We can be doing okay one minute, and in excruciating, unable to move pain the next. Just remember your friend isn’t canceling to stand you up, but because they really need to. Or, remember that sometimes we can’t plan things in the first place. It’s not that we don’t want to go out with friends, we really, really do, but sometimes we’re not healthy enough to have time left over from work or school or doctors appointments or just cooking/cleaning to do anything else.  

6. Go to them, rather than them having to get out. 
Getting out of the house always is hard with a chronic illness. It’s hard to drive, it’s hard to walk far, it’s hard to sit in uncomfortable chairs, it’s hard to be away when we might need our self-care resources we have at home and could need if our health takes a turn for the worse, and it’s hard going places where you don’t know what to expect. Instead of trying to go out to dinner or to a movie or something, go visit them at home and bring take out or cook food, and rent a movie, just have a more quiet night where you can still spend time without your friend having to straining their health. 

7. Try to match their level of humor about their illness.
Some people don’t joke about their illness, so obviously this doesn’t apply so much with them, but a lot of us do. I’m sarcastic ALL the time about little things, I’m constantly joking about my illness, and usually it just weirds my healthy friends out. I still remember the first time a friend make a funny comment about an illness, I take a lot of salt for low blood pressure, and we were watching a documentary talking about how the Mediteranian Sea will eventually be a salt desert, and she said “Jenna! You should live there!” 

8. Don't insist they the new "Miracle Cure."
We try a lot of treatments. Most of them don’t work, or do much at all. We get tired of hearing “Oh my aunt’s sister’s cousin had your illness and drank vinegar-water and now she’s all better! I’m sure it would work for you!” because chances are we’ve tried it and it didn’t work, or we’ve tried something similar and know it won’t work. If you’re doing research or come across a treatment, now and then, it’s okay to say “Have you ever heard of____?” But don’t chastise someone for having a reason not to try that treatment, whatever it is.

9. Don't assume they'll get better.
I know it’s hard to see someone you care about have to be sick all the time, and to know they’re not going to get better. It’s hard for us too. But that’s life, and it just needs to be accepted. You have to accept the fact that there is no cure for most chronic illnesses. That’s why we call them chronic. We don’t have to give up trying to find solutions for certain symptoms, but there aren’t any real “fixes.” In most cases, we just aren’t going to be healthy again, ever.

10. Remember they're still just people.
Sick people always talk about not letting their illness “define them.” It becomes a huge part of your life, obviously. When your friend wants to talk about their illness, let them. When it comes up, be okay with talking about it. But don’t bring it up all the time. We can never “forget” we’re sick, but sometimes it’s nice to act normal and healthy. You have a friend with an illness, but that isn’t all they are, they’re still your friend- a person with so, so much more to them than what they deal with.

It’s a brilliant description of how we have to think and plan our lives around illnesses.

Tuesday, February 28, 2012

It's been awhile...

It's been a while since I have written in this blog. So much has gone on and happened, and I'm exhausted just thinking about all I need to update on. So, I'm just going to touch base on some of the most important things right now.

Dan and I have broken up, as in for good. It happened in October. It completely broke my heart, and I didn't think I was going to survive and make it. I really didn't. He is now back in Massachusetts, and I am still here in the apartment. I miss him, but I miss him more as a friend then anything else.

I am seeing someone else now. His name is Randy, and he has been wonderful to me so far. He truly cares and he does so much for me. I worry that all of my problems will eventually wear on him, as that always seems to happen, but I'm trying not to think that way. I really love him, he's so wonderful.

My body is in horrid shape. Due to transportation and money issues, I have not been able to get to any of my appointments. It sucks because I had finally gotten a good medical support team down here, and was getting what my body needed. So I'm not doing so well physically now, but hopefully we'll figure something out soon. I know Randy is trying to help me figure it out as well.

That's just a quick note to get you all caught up. I will try to do better with this blog again, but please bear with me.

Hope everyone is doing well!

Tuesday, August 30, 2011

Blog Award Recieved!

As some of you may have noticed, there is now another image on the side of my blog. It is for being number 35 in their list of "100 Best Sites for Fibromyalgia and Chronic Fatigue Information." This was given to me by a company called VitaSciences. While although it appears they are trying to sell a product, it is also very wonderful that they took the time to make this list to help us find information.

It seems as though this list was compiled back in May in honor of Fibromyalgia Awareness Week. (I always thought it was just a day, but what do I know?) However, I did not get an email about this until just a few days ago.

Here is an excerpt from the page: "In honor of Fibromyalgia Awareness Week, we’ve scoured the web and compiled a list of 100 great websites for people who suffer from Chronic Fatigue Syndrome (CFS), Fibromyalgia and other chronic pain disorders. Below is a conglomeration of personal blogs, government sites, forums and medical pages- some are funny and insightful, some provide lots of great tips on coping with the pain in your life, and some are inspirational…all are gems that we know you will appreciate."

Lastly, here is where you will find the complete list: 100 Best Sites for Fibromyalgia and Chronic Fatigue Information

Saturday, July 30, 2011

Stress Overload

I am completely and 100% in stress overload mode. If there was something to go wrong, it has in the past few days.

The biggest problem, is, of course related to my medical care. My insurance copays are going up, like ridiculously. Some of my medications are going to be $75! My doctor copays are going up a lot too, different amounts depending on what type of doctor/specialist they are.

I have finally started to get a network of doctors/specialists and medications to get me feeling at least a bit better, and now I may lose all of that because I can't afford the huge copays. I already owe hundreds of dollars to various medical places.

I can not get any kind of assistance because I am a college student. (Apparently that makes you ineligible for anything and everything here in Maine.) I can not seem to find a job that I can physically handle.

This is just too upsetting. I've been depressed, stressed, and anxious since finding this out. I don't know what to do, and all I feel like doing lately is crying. It just isn't fair.

This is probably a crappy explanation of it all, but I just don't have enough in me right now to write a proper post. Feel free to ask questions. Or give advice, I'd greatly appreciate that!

Monday, July 25, 2011

The Wolf Story

A man told his grandson, “A terrible fight, between two wolves, is going on inside of us. One is evil & represents hate, anger, arrogance, intolerance & superiority. The other is good and represents joy, peace, love, tolerance, understanding, humility, kindness, empathy, generosity & compassion.”

“Which wolf will win?”, the grandson asked.

The old man replied, “The one you feed.”

Wednesday, July 20, 2011

ER Trip and Another Worry

So last night, after dinner, I had trouble breathing. It felt like my throat was swollen. I kept feeling like I had to swallow, and if I didn't, I felt like I was suffocating. But when I did swallow, it was nearly impossible to gain my breath back. After awhile, I was pretty much hyperventilating. So off to the ER we had to go. We get there and tell them what is going on. The ER was a madhouse and so I still had to wait for ages. I was getting dizzy and lightheaded. Eventually, (and seriously I had to wait longer then I should of when I couldn't freakin' breathe!) they got me back and into a bed. The visit was horrible and they were slower then ever before. But to make a long story short, there was some inflammation in my throat but nothing overly major. They gave me two days worth of Prednisone in order to bring the swelling down. They also gave me a nebulizer treatment which helped my breathing. Lastly, they gave me an albuterol inhaler to go home with, in case something like that happened again. (Of course, it took about 45 minutes to get the albuterol from their pharmacy.)

It feels better today. Swallowing is still a tiny but difficult, but much better then last night, and I can breathe normal again, which is obviously a good sign. Here's the funny thing though. I feel so much better in general. (With the exception of not much sleep last night, which they told me might happen due to the medicine in the nebulizer and the prednisone.) But I feel less pain, more energy, I feel less heat sensitive, etc. This actually scares me. The only connection I see is the prednisone, and that worries me that maybe I have something autoimmune. But then again, it's probably too soon to tell and it could just be a coincidence. Who knows.

On the good news side, I am seeing a new PNP on Monday, who is going to help me find a new PCP. Although I do still feel guilty about doing it, it's what I need to do for myself. It has just gotten to the point where I don't see any other options.

Well, that's it for now.

Hope everyone is having a spoonful day :)

Monday, July 18, 2011


Hey everyone,

I've updated this blog a lot, including adding some pages! I also have a new template. Would you all mind checking it out and letting me know what you think? I also would love ideas/suggestions for new/different things!

Actual blog post coming soon.