Posted in Chronic illnesses, Chronic Pain

I did not sign up for this – neither did my family


The National Institutes of Health estimates up to 23.5 million Americans suffer from autoimmune disease and that the number is rising. Unfortunately, as we all know, autoimmune diseases have no cures. It is a lifetime commitment that none of us signed up for. I sure did not sign up and neither did my family. I have a tendency to hide how I feel until I can’t hide it anymore and then, I am a force to be reckoned with. I know all the signs of a flare coming on, and the fact that all of sudden I want to cry for no apparent reason is a first clear indication.

I only pray that my family learns to forgive the person that I become when I am struggling with the bad days. Yesterday, I nearly tore my sister’s head off when she begged me to get out of cleaning the kitchen last night because despite my flare up, I wanted to feel productive. I did not want my RA to take away from me my independence because clearly, that is what was happening from the most that the flare started.

For the last few days, I felt worn down regardless of the fact that I did not do anything to wear me down. However, I gave myself a good excuse with the weather and heat, and considering an ozone warning was issued made it a good enough excuse. But, as the weekend moved forward, I started to feel weak and my hands were showing signs of that weakness. I kept moving despite this desperate need to just want to find some place to hide and cry. I hate when my hands do not want to do their job because I feel not just physically weak but also helpless. With my eyes, skin, and joints following suit, waking up this morning was the last thing I wanted to do.

The question of whether humidity worsens RA symptoms is obvious to any sufferer but research has failed to recognize that specific climate can prevent or reduce the effects of RA. Even moving to a new place with different climate does not seem to have an effect on the long-term difference in a person’s RA. Hippocrates, the Greek physicist (400 B.C), was the first to write that weather affects people. Humidity does, in fact, have a direct effect on the skin because it causes the skin to expand slightly when humidity rises and when air is dry, skin contracts. This explains why humidity changes cause pain to those who have scar tissue. Further, air pressure and temperature changes affect people with RA in the same way to pressure changes cause headaches.

Patients with arthritis can claim they can predict the weather changes. In fact, the University of Pennsylvania, a few years back, conducted a study where they built a climate chamber and used volunteers as study controls. The researchers were able to provide with a high degree of certainty that a combination of humidity and low barometric pressure was in fact associated with joint aching and stiffness. S0 the next time someone tells you that arthritis patients cannot predict the weather, you can disagree by telling them that arthritis joints are already inflamed and under pressure because of increased fluid in the joints and if you lower barometric pressure, the inflamed joint will swell and stretch the already inflamed joint lining.

When I got into the car this morning with my ten year old, I started to rant and rave for the heck of it. I wanted to complain to someone about how overburdened I felt, and when my son said, “Mom, I am just a kid. Why are you telling me this?” I had to take a deep breath and apologize. I had no right to complain to a child about how worn down my conditions make me feel. I know I didn’t sign up for this, but my kids and other family members did not either. Just because I feel down right awful and overburdened by my conditions does not give me a right to take it out on others like my sister who was trying to help or my son who did not need to hear about the worries of adulthood.

My conditions are not a license to feel angry or bitter at the world, at God, or at the situation. After I dropped my son off, I took a death breath and prayed for strength. I asked God to guide me through this incredible burden I call “life with chronic illness” and it would be easier if not for the “illness” part. I did not sign up for this and neither did my family. None of us did and getting angry or bitter doesn’t change a thing. The flare will pass and it will be a distant memory. In the meantime, I can continue to pray for and look for strength and support where I can find it. My family knows when I am flaring and they do what they can to help or to just stay out of my way. I am grateful for having them in my life and sometimes, I don’t always see this clearly enough when I am physically hurting.

***
I have an upcoming review for a a couple of great products sold by CSN Stores that can add convenience to your life if you suffer from arthritic or weak hands.  CSN Stores is a Boston-based online retailer that sells everything you need whether it is lights, toys, shoes, or housewares.

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6 thoughts on “I did not sign up for this – neither did my family

  1. I'm sorry that you've been feeling poorly. 😦 It *is* difficult to be "friendly" towards others when you are in so much pain and frustrated.

  2. I walk beside you on the same path. Sending you healing thoughts. From a fellow knackered, fed up, tearful, frustrated arthritis ridden blogging pal x P.s. But you are right, it will pass for us both and we are not perfect so don't let's expect to be.

  3. No matter what it sucks to be sick or not feel well. And for someone that puts up with day in, day out it has to wear on you. I'm sure your family understands that everyday is a struggle…{I've been gone too long. Digging the new look!}

  4. You know, I've noticed when I'm starting to flare or in the midst of a flare, that even with as much support as all my friends and family can give me, it is still such a lonely place to be. Nobody really knows how we feel and nobody, not even ourselves, can do anything to fix it and it just plain sucks. I hope you get to feeling better quickly!

  5. Dee, thanks so much. That is the hardest part of this disease, trying to be friendly when you really can’t be. My family appears to forgive me, but I am not sure I forgive myself when I turn into this person. I hope you are feeling better too.Reasons, thank your for commiserating and sending me healing thoughts. I am sure this weather is treating you the same.Brandy, thanks for allowing me to whine. You are right that my family does understand that I struggle but often, I struggle with whether I forgive myself for the reason on turn into on my bad days.AllFlaredUp – I know what you mean about just wanted to be left alone and feeling lonely regardless of the support. Hence, the reason I took so long to respond to everyone. I really just needed to reflect on my on about this flare-up. In the winter, the cold air attacks our joints and in the summer, the humidity swells them. It is never a win-win but at least I had a couple of months where the flare-ups were not so bad.

  6. {{{HUGS}}} I'm glad to have found you. HUMIDITY/RA.. is horrible. As well as dry cold. Neither is good. I'm sorry your having such a rough time. Taz

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