When your disease gets you down

Pain can bring out depression

Pain and Depression can go hand in hand

When it comes to chronic disease, we all have setbacks. Since last Wednesday I’ve been experiencing a flare. It’s honestly the first that I’ve had in a very long time that was quite this bad. It could be due to stress or medications or both. Compared to how I used to feel before alternative medications, this flare is a breeze. I can still lift my shoulders, tie my shoes and walk without wincing. Flares can vary so you never know what you’re going to get. For me, having Rheumatoid Arthritis can sometimes feel less of a joint disease and more of a systemic disease. For those of you that don’t know, RA can affect the organs just as much as the joints and it can mimic other diseases like Lupus.  I can see what’s happening to my joints….my fingers get more swollen than usual, but when it comes to my organs I can only guess what’s happening.

These last few days I’ve been getting up in the morning and feeling like I’ve smoked a pack of cigarettes. I don’t even know what that would feel like but I’m guessing this feeling is similar. There’s a sense of congestion and heaviness, accompanied with some discomfort to breathing especially if I bend over and especially when I first get up. Just like my joints, this feeling lessens as the day goes on. There are times that it feels like my heart is beating harder or having trouble….could it be Pericarditis? I simply don’t know. And there are moments when my sides have dull aches as if someing inside me is a bit more swollen than normal. Times like these I can only guess what’s going on. Without insurance, there is no way of knowing without going to the doctor and paying an arm and a leg.  Seeing that I can barely afford my supplements on my own, I simply can’t afford a doctor’s visit. Besides, I know the answer to the problem…..reduce the inflammation in my body and everything will be solved, including my sour mood.

If only it were that easy. I could take some Prednisone which sits in my cupboard. But after a year of trying to get off that stuff, no thanks. I’d rather not feel even more moody than I already feel which is what Prednisone would do to me.  Flares are bound to happen from time to time. I have been lucky to avoid having a flare for the past six months or so. I’m also lucky that this one isn’t all that bad. When I did have a doctor I had the same complaints: chest pain and congestion, rib pain, organ pain, and just about everything and everywhere hurt. Knowing that I have the least amount of pains now that I don’t have a doctor, it makes it all the more simpler to not worry and just keep going on with my life. A flare will eventually subside.

Extreme tiredness is another problem that accompanies most chronic diseases. It doesn’t seem to matter how many hours of sleep I get, I’m still tired. I can say however, the more I sleep, generally the less pain I wake up with. Depression is the other thing that pulls me down. People close to me try to perk me up and they say, “Don’t let yourself get depressed.” It’s hard to have that kind of self control. You go to lift something and you realize you don’t have the strength. You plan a day of activities to realize you don’t have the energy. You have aches and pains and have no way of relieving them. People want to spend time with you but you don’t want to spend time with them…..you are at a loss for words and feel like you might fall asleep in their presence. You find yourself stuttering. You spend more than your share of time in the bathroom to accomplish nothing. (Inflammation of the intestines can make you very constipated). People cook you food and you barely eat. I think faking the way I really feel takes its toll and adds to the depression. People ask on the phone, “How are you doing?” You answer, “Fine and how are you?” But the real answer would depress other people. “I feel extremely tired and sad that my weekend was taken away from me.” People don’t want to hear that so you hold it in and take one for the team, the chronically ill team that is.

What’s it like to have a chronic disease? Well, honestly it really takes it’s toll on your body and spirit,  especially when you’re going through a flare. The pain, the medications, the tiredness….none of it is easy. I can say that since I’ve been treating myself with alternative medications I feel WAY better than before, when I was on chemotherapy drugs and steroids. But even this path isn’t easy for reasons like expense, feeling alone on this particular path, and the amount of pills I have to take can be annoying and tiring.

At first I thought twice about writing an entry like this. After all, it can make people feel uncomfortable. But then I thought, why can’t I just be honest? Why spare other people and hold in these emotions?  Is this too much information? Perhaps it is but I don’t care. At least you know when you come to my blog you’ll get the truth and the real me.  Thanks to all out there, who visit.  You are my support and I appreciate you.

5 Responses

  1. Wow. This entry is the story of my life right now! I have several auto-immune diseases that affect all parts of my body. I am 22 and have been trying to find help since I was 14. Reading this helps me realize that I am not alone. Thank you for letting me know that I AM NOT ALONE!

  2. Will,

    Thanks so much for your input!
    take care,
    Sarah

  3. Sarah,

    I don’t think the truth will depress people or make people uncomfortable. It might actually do the opposite, it might encourage people to provide more support to you!

    Don’t walk down this path on your own, you have friends and family who are more than happy to walk with you as long as you don’t turn them away. And it’s not necessary to talk the entire time when you are with good friend, the 2 of you can just sit and stare into the ocean without saying a word, and enjoy the soothing sound of the wave! =) But as for the bathroom business, you are on your own. =P

    Anyways, remember you have friends and family out there love to hear the truth and will never let you go through this alone.

  4. Joanne,

    Thank you for sharing! I added you to my blog roll and I look forward to learning about your alternative route. Thanks so much!
    take care,
    Sarah

  5. I understand exactly what you mean. I once had a real gripe about my arthritis in a blog and really wondered if I had done the right thing. I was amazed at the supportive comments I received and no-one commenting (as far as I know) has the same issues as it was not an arthritis specific blog.

    Now I ‘ve set one up just about the arthritis and my journey down the alternative route. I would like to return and read more about your journey.

    My arthritis blogspot is http://www.ajourneytocurearthritis.blogspot.com

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