10 Ways To Help Out Your Chronically Ill Friend

This is a fantastic post written by Jenna at http://fibromyalgiaproblems.tumblr.com/ 

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.

aand also: READ THE SPOON THEORY!

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

There's Always More.

Well, I've been having more issues, but really are we surprised here?

I ended up having to go to FirstCare the other day because I was quite sick. I was dizzy, lightheaded, nauseous, unsteady, weak, felt dehydrated, etc. The doctor first thought I had developed diabetes, but my blood sugar was in normal range, so they then decided it must be side effects from the trazadone, since it had only been a week since I started. So on their instruction, I stopped the trazadone that night. Since it didn't really help with my sleep anyways, it wasn't that big of a deal. I felt better the day after, but now I'm starting to feel like that again. I have no idea what is wrong with me this time. And to be quite honest, I don't think anyone else does either. Back to my regular dr I will have to go at some point, oh boy.

Also at this last appointment, the doctor discovered that I had a heart murmur. He obviously must not of thought that it was anything to be overly concerned about, because all he told me to do was talk to my regular dr about it. But still, seriously, another thing wrong with me? *sigh*

"How To Be Sick" - Review and Quotes

I just finished reading "How To Be Sick" by Toni Bernhard. This book is a wonderful inspirational book for those of us who are chronically ill. It is based on a lot of Buddhist beliefs but even if you are not Buddhist it can still work for you. It applies to all of us. There are wonderful tips to help get us through this new life of our's. I highly recommend this book to anyone who is chronically ill. I'm gonna leave this with a few quotes from the book that I found especially inspiring.

"You know this is the way it is. You were born and are subject to change, disease, and ultimately death. It happens differently for each person. This is one of the way it's happening to you."

"Without the bitterest cold that penetrates to the very bone, how can plum blossoms send forth their fragrances all over the universe?"

"I work on treating thoughts and moods as wind, blowing into the mind and blowing out. We can't control what thoughts arise in the mind (Telling yourself not to think about whether you'll feel well enough to join the family for dinner is almost a guarantee that it's exactly what you will think about!) And moods are as uncontrollable as thoughts. Blue moods arise uninvited, as does fear or anxiety. By working with this wind metaphor, I can hold painful thoughts and blue moods more lightly, knowing they'll blow on through soon - after all, that's what they do."

"The very activities that bring us the greatest joy are also the activities that make our condition worse. This was a bitter pill for me to swallow; it still is sometimes."

"Just as we condition our bodies in different ways through exercise or lack of it, so we also condition our minds. Every mind state, thought, or emotion we experience repeatedly becomes stronger and more habituated. Who we are as personalities is a collection of all the tendencies of mind that have developed, the particular energy configuration we have cultivated."

"May I be peaceful. May I have ease of well-being. May I reach the end of suffering.....and be free."

"If someone curses us and we have no feelings of self the incident ends with the spoken words, and we do not suffer. If unpleasant feelings arise, we should let them stop there, realizing that the feelings are not us....if we do not stand up to the line of fire, we do not get shot, if there is no one to receive it, the letter is sent back."

"When people say, "Ajahn, let's go for a beautiful walk," fine I'll go. If they don't ask, that's fine too. I don't expect a walk to be any more satisfying than sitting alone. It could be hot or windy out there. If people bring me delicious food, great. If they don't, great. I need to diet anyway. If I'm feeling good, that's okay. If I'm sick, that's okay too. It's a great excuse to lie down."

"In mind, I understand that the essence of equanimity is accepting life as it comes to us without blaming anything or anyone - including ourselves."

"If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end."

"Thoughts are just there, like the air around us. They arise but are arbitrary and not reliable. Most of them are just rubbish, but we believe them anyway."

"Language...has created the word "loneliness" to express the pain of being alone. And it has created the word "solitude" to express the glory of being alone."

"If you're suffering due to being alone so much, it might help to recognize that being alone in and of itself is not necessarily a negative experience. It's a neutral state - to which we add the desire for things to be other than they are (for example, to have company)."

"Lonely is a funny thing. It's almost like another person. After a while it will keep you company if you let it."

"In sickness or in health, my heartfelt wish is that you be peaceful, have ease of well-being, reach the end of suffering, and be free."

Life goes on.

This has not been the funnest of weeks. I mean, there have been worse ones, but this one was just up there.

So, the worst part was Tuesday night. Tuesday night, I took all my nighttime meds as usually, including my Lunesta (sleeping pill) and went to bed. Unfortunately, sleep was just not in my cards apparently. It was bad. I laid in bed for hours, just trying to sleep, but it wouldn't happen. Then, after awhile, I ended up quite sick. Like vomitting sick. Apparently, when you take a sleeping pill and it doesn't wear off, it makes you quite sick. So that was not fun. Then, around 9am or so, I got even sicker. Like weak, dizzy, nauseous, exhausted, extreme pain, etc. And it was so bad that I all I could do was lay in bed, I could barely move. And I couldn't seem to fall asleep. Eventually, I did for like 2 hours. To say that the rest of Wednesdeay was a day from hell, would be an understatement.

Luckily, I've gotten more sleep since then. But everything is so damn stressful right now. Money issues would be the worst. We just don't have the money we need for everything. We're trying so hard, and we've gotten better at not "wasting" money, but still, ends never seem to meet. I need to find a job I can handle, preferably a work from home job, but this just does not seem to be happening, and it's SO damn frustrating. I just want things to work out.

I'm trying not to, but I feel like I am losing hope. I am losing in hope in ever feeling better. I am losing in hope in things working out finanically. I am losing hope in things working out period. But without hope, seriously, whatever am I going to do?

A Letter From Fibromyalgia

A LETTER FROM FIBROMYALGIA

Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.

Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!

In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.

Have a nice day!! (ROFL),

Fibromyalgia

Gotta Love Life....

Yet again, I am not feeling life lately, but this time its because I have managed to come down with the flu. And trust me, the flu plus fibro is absolutely horrible and really just makes you wanna curl up in a ball and die. Or maybe that last part is just me. Who knows?

But anyway, I am currently on day 5 of this horrible thing and I def don't feel any better at all. And this is the weirdest flu I've ever had.The symptoms change, come and go, etc. In my memory, I've never had something like that. But I've had all the worst symptoms. Fever, headache, congestion, coughing, sore throat, dizziness, weakness, pain, stomachache, etc. You name it and I've prolly had it. And I'm pretty sure its making my fibro act up more too.

I'm pumping in the antioxidants, the vitamin c, other supplements, and fluids but nothing seems to help. I have not felt any better from day to day, and during some parts of the day I feel worse. Like I said, its a weird strain I have here.

To make matters worse, Dan is sick too, and we both have the hardest time getting things done. And I've had to take time off work, which absolutely sucks because we need the money. I'm supposed to go back tomorrow, and I think I'm going to even if I'm at death's door. We need the money that badly.

Ok I'm off. Sorry for the complaining. And sorry for any typos, I did this via my blackberry.

<3

Life continued....

So let's see, what is new in my life?

Well, the heat nearly killed me. I felt so sick, and I passed out numerous times. Luckily, it rained this weekend and that cooled me down some. One night, Dan and I went for a walk in the rain in the park. It was amazing, and it made me feel so much better.

I went to the neurologist on Monday, and that wasn't a huge help. But seriously, why am I surprised? He did up my Lyrica though...I'm now on 225mg twice a day. I wonder if it will help? I feel like nothing ever does. I've been in so much pain lately and so tired. My knee has still been bothering me. I fell on it like 2 weeks ago, and it still bothers me alot. I don't know if I actually did some sort of damage or not, but it def feels like it.

Umm. Mike and Shawn came to visit today, and that was nice. Our friendships have been strained numerous times, but its still there, and thats always a good thing. I really do miss them on occasion, so it was really nice to see them and catch up and everything. And reminscing about old times. As much as I love the present, sometimes I really do miss the past. Sometimes I really wish I could go back. But I do love the present. Ah. It's hard to explain.

I am going to take some classes at SMCC this semester. I am taking some online classes because attendance is really hurting my grades, and with online classes I can do my work even if I am sick in bed. So I think its a good plan. Because I really don't want to give up school, no matter how hard it really is most of the time.

Ok, thats it for now. <3

That's The Way It Is....

Soooo I left off with Friday night being in South China after the car accident. For those of you who didn't see, here is what the car looked like after the accident:


So as you can see, that was pretty horrific. Anyways, the rest of the weekend in South China was alright. It was nice to be there, because I have so many memories of my childhood days there, but it wasn't very relaxing this time, even though that was what I truly needed. My dad just doesn't seem to grasp the concept that I am actually sick, and that I really can't do everything he expects me to do. Everytime I was trying to rest, he'd get me up and have me do something. It got quite annoying quite fast, and it really didn't help my fibro any, that's for sure. But on the positive side of life, I did get to see some friends and family that I don't get to see very often, and of course, that's always nice.

Mom came back to Portland with us so we would have a car and could get places. Her, Jackie, and I went to the mall one day, and that was fun. It was like a girls' day which is always nice. Other then that, we didn't get too much accomplished, but what did we need to get done?

The heat is killing me. It makes me feel so sick and just so blah. I literally can't take it. It's been way too much for me lately. I passed out again last night, but thankfully I didn't hit my head or anything this time. I guess there is a positive in every situation, lol.

Job search is going alright. I have some interviews lined up and such, so hopefully something works out, and hopefully I can find something that I can handle with this damn fibro! Gotta love it....only not.

I feel like I probably have alot more to say, but I just don't have the energy for now, so I'm gonna end this here.

As Life Goes On....

So I ended my last post Monday evening. Things were going good at that point, until later on that evening. It got really hot and humid, and it made me incredibly sick. I hate having such bad heat sensitivity. It was alright for a while because Dan got me an extra box fan in addition to the ceiling fan we have in the bedroom. But then I had to get up and go in the other room for something. On my way back, the heat really got to me and I passed out. I hit my head when I went down. When I woke up, I had a wicked headache, and was dizzy for a few minutes. I was nauseous as well. But I felt better within a few mins so things were ok.

On Tuesday, I went to the chiropractor again, which was a miracle because my neck was really messed up, I'm assuming from the fall, but I'm not really sure at all. But yet again, it helped tremendously and I'm glad I went. Tuesday night Dan's parents came up for a visit. They came over and saw our new apartment, they seem to really like it. They then took us out to dinner. I had chicken alfredo, and it was really good as usual. I'm such an alfredo person.

I didn't get sleep last night. Or if I did, it surely wasn't enough. I have been so exhausted all day. Today I cut up my credit cards after making payment arrangements and such. This is the beginning of my trying to get out from under my debt. I'm working with Credit Solutions. Hopefully this will work out. I'm still really stressed out about the whole financial situation though. I have so many bills that I just can't afford right now. And its so hard to keep up with everything. And of course, for those of you with fibro, you know how stress makes everything worse. Oh man.

Ok, well Dan and I are watching a movie, so I'm off to enjoy that. Later. :)

So I'm bad at this already...

So it looks as though I am bad at keeping up with this blog already, as I have missed a few days. But I'm really really really gonna try with this one, so here's another post.

I've been sick over the weekend. At first I thought it was just some cold sort of thing, because thats what the symptoms were. But then on Sunday I seemed to have a fever. According to Dan I also passed out for like 20 minutes. WTF? Why did I do that? I guess my body just couldn't handle it anymore. I seem to be feeling better in that sense today though, so thats always a plus. I'm having a high pain day though, which isn't any fun whatsoever. I really wish I had some pain meds for it. I mean, don't get me wrong, I am scared of them because I really don't want to become addicted, but I can't deal with this pain either. It's making me pretty much bedridden, and I hate that more then anything. Next time I see Dr. Winn, I am putting my foot down and demanding he does a referral for a pain specialist. I just can't take this anymore.

Nice rant there, eh? I feel like so many of my blog posts have been rants, and in some ways I hate that, but seriously, where else am I supposed to bitch and moan? Well, ok, I do it on Twitter too. ;)

Other then pain, things seem to be ok. Dan and I are doing wonderfully. He always takes care of me and I don't know what I would do without him. I'm so lucky to have him. I couldn't ask for anyone better, and I couldn't ask for someone more helpful or caring. Even as I write this, he is making dinner. :)

Had a chiropractor appointment today, and things feel better then they did. I can definitely feel that my body is back in alignment where it should be, and I feel more balanced and even. I love how it feels right after the appointment, I just wish it would last longer and do more for the pain.

I have a job interview for Thursday. It's for a part time sales associate job. I'm not even sure if I can handle it, but all I know is that we desperately need the money, and if we don't do something soon we're gonna be in bigggg trouble. So I'm gonna try this. I really hope I get the job, and I really hope that I will be able to keep it.

Well, that's it for now I guess, time for some yummy dinner that Dan made. :)

Just not feeling it....

So, this morning I woke up early, (for me), and headed to Yarmouth for my Reiki session. It was amazing as always, and again, as usual, I felt so much better. I really can't believe how much Reiki really does do for me. Anyways, I bought some isotonix mixes too, which are natural supplements to help your body. I'm glad I did it, because we all know that my body can use any help it can get, but oh man, I shouldn't of because I can't afford it at all. I wrote a check for 135 dollars and some odd cents, and there was definitely not that much money in my bank account. Why did I do such a thing? Simple. Because I want to feel better. I'm sick and tired of feeling like shit all the time. I'm sick of not really "living." (And yes, the money is now in my account, no worries.)

But seriously. I'm not sure how much more of this I can take. It sucks being only 20 years old and not being able to do things people my age do. It sucks being bedridden some days and not have a life. I'm sick and tired of being sick and tired. I hate not feeling like myself anymore and not being able to do things I used to be able. I'm only 2o years old and sometimes I feel like my life is over. This just isn't fair. I know life isn't fair, but I feel like I really can't handle this anymore. It's just really started to get me depressed. I just wish, more then anything, that I could feel better, and at least feel a bit more back to normal...that would be so nice.

So other then that rant, I'm doing alright. I'm just sorta having a down sort of night.

Fibromyalgia

Fibromyalgia-
The name is so complicated
And so is the disease.
Chronic pain, chronic fatigue,
Those are just the beginning.
Do you know what it feels like
To wake up and feel so much older then you are?
Do you know what it feels like
To not be able to do things everyone else does?
Do you know what it feels like
To not be able to do things you once used to?
Do you know what it feels like
To have the littlest things
Wear you out completely?
Do you know what it feels like
To have no one believe you are sick?
These are all things
That I feel every day.
My body is not my own anymore,
Something horrible has taken it over.
Can I ever win it back again?
Will I ever feel ok?
Will I ever feel normal again?