Handling Chronic Illness

J., I am so sorry you're having to deal with this. You need the support of others with this disease!! Please get on the internet and find a support group. We all need to feel like we're not alone and to be armed with coping skills. I am so sorry.

I am soooo sorry that you feel so awful. I don't have any wonderful words of wisdom, just good thoughts and prayers going your way!

Some days are always harder then others. However, I know, for certain, that the mind is stronger then any other part of the body. I struggle with anxiety and depression at times. I can say for certain that their are days where I don't want to get out of bed. When I am anxious, I don't want to do anything but sit and stew in my own worries. All day long. I can't think or feel anything else. I am literally paralyzed with fear and anxiety. It is overwhelming.

Although I don't have a diagnosed chronic medical illness, I know how debilitating it can feel.

When I feel anxious or depressed, I have to mentally clear my head, force myself to go for a walk and let it go. I would think it is the same way when you are feeling overwhelmed and tired, and exhaused with everything you are dealing with. Both mentally and physically.

You have to force your mind to think differently. It can be very difficult at first, but once you are able to focus on something else entirely, you will begin to breath a little bit better,and feel better. Don't focus on the negative emotions. They will eat you alive. Focus on the positive. Get involved in something and clear your mind.

My dd has a connective tissue disorder. I'm glad you're seeing a doctor. Just a couple pieces of advice in the 2 weeks leading up to your appointment:

Start making a list to take to your doctor. Make categories, like "questions I have" or "how I feel" and "sleep problems" or whatever. When you think of questions, write them down. Believe me, the amount of info you will get in the doctor's office will be a lot, and those questions you KNEW you would not forget, somehow get forgotten.

Bring a legal pad, and a pen, and another person to the appointment if possible. Take notes on what the doctor says. Sometimes I just write down a word the doctor says and then I go home and look it up. If your fiance can come to the appointment, it will be good for him to hear what the doctor tells you, and the doctor can help him understand how you are feeling.

And make sure to ask the doctor for a referral to a counselor who specifically deals with illnesses and life-changing diagnoses. This has been invaluable for us.

You are NOT making it up. My dd feels that crappy all the time. She has three major diagnoses, one of which is the connective tissue. Read "The Spoon Theory" on www.butyoudontlooksick.com. It will encourage you and help you explain things to your friends and family. Don't doubt yourself. It's ok to cry at first. Your doctor and a counselor will help you get a perspective on things.

Try to stay strong. You are not alone.

I worked with a young woman who has ankylosing spondylitis (AS) - a type of inflammatory disease that hit her at an unusually young age (early teens) for the disease. She struggled through college with almost debilitating symptoms, but found great relief through eastern remedies. When I worked with her, several of her symptoms were back, and she began seeing a rhuematologist to explore western medical options as there are no eastern practitioners in our area.

I honestly don't know how she did it - she was married, with a toddler under 2, working 60 hours a week running a business. She had days when we all thought she would just drop from exhaustion. Her "theory" was to accomplish as much as she possibly could in life before the disease prevented her from doing anything. AS is mercurial at best, and its progression varies from person to person, so her future will always be uncertain.

She is one of the most amazing women I have ever met. Daily she forced herself to get out bed and live life as if nothing was wrong with her.

I don't have any answers for you - I wish I could make it easier for you.

But, as scary as going to the doctor is - once you have a diagnosis you will be able to move forward and explore treatments that will help.

I encourage you not to give up - not to let what other people may think worry you - to concentrate on living each day to the best of your ability.

Don't let it, whatever it is, beat you. Because you are stronger than you think you are.

God Bless

You are feeling a loss. The loss of control of your body as it used to be and the constant pain and drain to your body and spirit.

This is a loss just like anything else in your life. You are no longer the same person. This was not planned or imagined..

And yes, depression is part of it.
Make sure to see a therapist to talk this out. I have been where you are and no one else can understand the frustration, the helplessness and the complete disappointment that goes along with a physical loss or illness.

Go and seek help. This is not a personality weakness, it is just part of being human.

i have fibromyalgia (cousin to lupus, also an auto-immune disorder) and feel crappy all the time, too, so I know what you mean. No one can see or feel my pain so they assume i'm not having any :-/ It gets tiring and frustrating dealing with this day after day, and basically I take it one day at a time to get through it. I just finished helping provide hospice care for my Dad, he was suffering from leukemia and kidney failure. It was physically HARD, and sometimes almost impossible to do the things i had to do (changing his diaper and having to move him from side to side to do so, all 200 lbs of him) but I mentally pushed through it to care for him.

IF you think you could possibly be depressed (anxiety can go into depression REAL fast, it did with me and I didn't require medication for it) because of what you are going through do seek out a therapist, your doctor can help with a referral. I saw one for about a year and she truly helped me see that the feelings i was having were completely normal, and opened my eyes to the fact i have to take care of me, no one else will.

Around the time I first saw my rheumatologist I was hurting so bad I thought I would pass out from the constant pain. But she was understanding, put me on a new medication that helped, and I am so thankful to have her on my team. Point I'm trying to make is It WILL get better at some point, don't allow it to consume you.

Give your doctors ALL your symptoms, regardless of how insignificant you believe they are, and once you have a diagnosis research it online as much as you can to get the most recent info you can.

God bless, will be praying for you.

I can relate to your post and feelings. I have fibromyalgia and everyday is very difficult. I've been in constant pain for over 9 years and only last year finally was given a diagnosis. I too have anxiety and I also do suffer from PTSD so that's a whole other host of issues. However, I've got those under control it's just this pain that never goes away.

My rheumatologist still has yet to set me up with any type of pain medication(s) and I got the diagnosis on the 1st visit. I've seen him I believe 3 times now; needless to say he's going to hear it from me come my next visit.

I hope you find relief and answers soon. Please know you are not alone in this.

You are definitely not alone! There are many people here that are going through what you are. I myself am as well. I have Fibromyalgia too and as some of the other ladies have said it is a constant struggle each and every day. I have no energy, and feel fatigued and so tired all the time. And the pain is just awful. It's always there, never ceases. I honestly dont remember a day in my life where there wasn't a pain free moment. I have had it for 13+ years along with other medical issues, and just last year got diagnosed myself. It's hard.. Really hard most days. I have seen my Rheumetoglogist many times and there isnt anything that she thinks can be done for me. Its a horrible feeling. I am still seeking a doctor that will be willing to fight for me and help me find relief.

There are many days where I cry because thats all I can do to cope. I understand where you are coming from. I want to give up all the time, because I am just sooo sick of feeling broken. Broken, tired, hurt, and sick and tired of people thinking I am making it up. And it really just sucks cause I cant let myself get too down because I have my son to think about. So I keep on going for him, and that helps sometimes.

But, you have to keep on, keeping on, and fight for yourself. Fight for treatment, fight for a doctor who will treat you kindly and what you deserve. Just fight, and never give up. Do what you can to keep going through the days and know that you arent alone by a long shot. There are many of us out there going through what you are and can relate!

So when you go to your doctor appointment, dont be scared, or ashamed or anything. Just lay how you feel and your symptoms on the table. No matter how big or small they are the doctor needs to know so they can help you. And if you dont like the way your treated, there are other doctors. Just keep searching until you find one that you are comfortable with.

Dont let people make you feel bad for hurting, it is what you are dealing with and people who dont go through it like you just cant relate. Its hard.

So in the meantime, when you are feeling extra tired, give yourself a break and take a nap, or just relax. Its what your body needs right now and until you find a treatment plan that helps this, give your body and mind a break. Dont push yourself beyond your ability.

Be good to yourself!

I have no wisdom to share, but I read your post and immediately felt I was supposed to pray for you. So, I'm praying - for healing, strength to endure, peace for the journey, and that you will be surrounded by people in your life who will bring you joy and encouragement.

I hate how long it takes. I hate having to do one test at at time, wait for the results, then do another test, then wait some more, and so forth.
It is frustrating, scary, and exhausting. ANYONE in your situation would feel that way.

Have you noticed, like myself, that I didn't have anxiety until all this kept going on and on and on. I am hoping that when each of us gets a final diagnosis, the anxiety will work itself out. Until then, I am so happy you found a medicine that helps and you can tolerate the side effects.

If you have something hard to diagnose, I would get a second opinion. It is better to go through that than to be treated for the wrong thing.

It doesn't matter about what others go through. I get the trying to praise and have an attitude of gratitude. I get trying to be positive and such.

You are NOT a whiner. You are doing the best you can. Sometimes our bodies have limitations and we have to learn to live with them as best we can. You are allowed to cry or feel whatever you feel.

:0) Hoping you get answers soon:0)

if you have any questions and you do have " lupus " feel very free to ask. I am living with lupus and have been since I was like 19(am 35 now),I also suffer from depression and anxiety and am as tired as " h*ll " some days and dont feel like even getting out of bed. advice that I could give,give yourself a break.... but also dont let your disease control u,depending on the diagnosis let the doctor help u find the best solution to get this thing under control and my big thing I try to eat right and I excercise regularly ,I contribute the state of my disease because I excercise 6 days out of the week and take care of me through diet,etc. do I get worn out yes,I am already worn out lol.... but I push on. with the meds and taking care of myself I am in what they call remission even though I am never without lupus atleast in their eyes it is under control,and I see my doctor once a year. like,I said I believe taking care of myself and having the mindset that I am not lupus,its just a part of me that I have been dealt I say here it is,make the best of your life. please keep your head up,eat well...exercise,rest when you need to ...ask for help when you need to and keep smiling!

Everyone has their own journey, but I will tell you mine in hopes that something in it may help you with yours.

I have Multiple Sclerosis, Crohn's Disease, and HS originally diagnosed 10 years ago. I have always been a very high stress person, worried alot, and burned the cancle at both ends. Even after my diagnosis I continued on with life like that for years and it had ill effects on my health and sanity at times but I continued.

In 2007 I gave birth to my first and only child. At her one week wellness check I found out she has Cystic Fibrosis. I was devestated. As I usually do, I internalized everything and tried to handle it all on my own. I got to the point where I did not enjoy life anymore. I was not pleasant to be around. I was angry... at life, at God, at everyone who I thought had an easier life than me.

I was at the point of having a nervous breakdown. My husband suggested I see someone and scheduled an appointment for me. The woman I saw was a Phychologist that teaches Mindfulness. Learning about living in this moment has changed my life. It gave me skills to help me cope and stopped my mind from worrying about things that I had no control over.

Chronic illnesses are made worse by stress. None of us can avoid stress, but we CAN learn a better way to handle it. We can learn how to avoid causing ourselves additional stress in situations we have no control over.

You need to find a way to cope with your feelings, worries, and stress. Mindfulness has worked for me. It may work for you too. Good luck!