Tag Archive | “normals”

Poked and Prodded, Jibbed and Jabbed

I realize that during the last three weeks I have been poked, prodded, squished, jabbed, plugged in, dilated, tested and re-tested.  No wonder I feel exhausted!  Since the beginning of 2014, I: have had my annual boob squish (yippee!); underwent cardiac testing; was “shot up” with my second infusion treatment (TNF Inhibitor); had an “invasive” G/I exam and tests; had the pleasure of my eyes being dilated while being chastised for not coming in annually (“you know, you do have a lot of underlying medical conditions that effect eye health”… duh!); got my monthly blood-work completed; was stung with almost 30 Botox injections in my head and neck; and then to top it all off … was submitted to two corticoid-steroid injections in my S-I joint (the hardest to reach=tailbone area) and my hip as well as three trigger point injections in my shoulder area (no numbing meds. with that one=double ouch!!). All in 21 days!

Yet, strangely, this feels normal to me. How weird is that?!

Just last week, a friend was telling me how exhausted she was.  She had just finished a day filled with two medical appointments, a flu shot and DPT shot, as well as some blood work.  And I understood!  Yet it also gave me a deeper perspective on what most able-bodied people find taxing.

And it gave me a great sounding board for helping her to better understand what my daily life is like.  Of course, I didn’t share this with her on the spot.  She had a right to her own exhaustion and some empathy from a caring friend.  Bottom line, isn’t that what we all crave?  But later in the week, I brought up her experience as a starting point…

I asked her to recall how depleted (and violated) she had felt on this day of appointments and tests.  I told her that I, more than most, could 100% relate to her experience.  Then I followed up with, “you know how you felt? Well, just to give you a little perspective, that’s what it is like for me 2-3 times a week, on an average week.”  I saw recognition light up behind her eyes.  And I realized that it is difficult for others to understand how the chronically ill feel on a chronic basis.  We all need a compass point to help guide perspective.

Another dear friend has often said to me, “I imagine how horrific it feels to have the flu.  And then I think of you, and try to imagine what it would feel like to experience that all-over pain and fatigue every. single. day.”  She sometimes follows-up with, “It makes me feel like crying.” Ah, me too.

So I realize these are all good starting points to increase the awareness of our “well-bodied” friends and family.  Our barometer for pain is at a higher set point than most.  We have to be that way in order to survive (and hopefully even thrive, at times!).

But it is also important, if we want to maintain honest integrity with ourselves and others, for us to attempt to explain what this means.  Being chronically ill is… a constant cycle of preparing oneself for upcoming doctor’s appointments and tests.  The emotional roller-coaster is taxing both pre- and post-visit: Is this the day I will get bad news or good news?  Is this the doctor that will have a new idea to help me with my illness(es)?  How many slips for subsequent tests will I leave here clutching today?  Can I even afford to go to the doctor’s today?  How am I going to get there; am I strong enough to drive myself?  Should I have someone with me so I am not the only one hearing the doctor’s words? Is this going to be another appointment with the summation, “I’m just not sure how to help you.” shrug.; Do I even get my hopes up?

Then there is the physical toll. Just getting ready for these appointments can be exhausting; sitting for long periods in the waiting rooms can be even worse.  Waiting in uncomfortable chairs (especially the hard plastic ones in the exam room!), can wreak havoc on a chronically ill body.  Then doctors like to (and, let’s face it, should be) physically examine your body, too.  Herein comes the poking, prodding, jibbing, and jabbing, all igniting flares of various “hot spots.”  Whether it is abdominal pains, muscular and joint pains, neuropathy, etc… we don’t like to be excessively touched!!   And are bodies will let us know this with a snowball effect of all over and hyper-aware pains (allodynia) throughout our bodies for several days after the appointment.

By the time we start to recover, it’s time for the next onslaught!

And, in between all these appointments, we want to live life… and not just inside the walls of hospitals and clinics!

We don’t need your sympathy.  But the next time you are feeling all-over exhaustion from a day at the doctors, an afternoon full of tests, or a bout with a cold or infection, think of us.  And give us empathy and understanding.  That’s all we truly crave.

Thank you.

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Open Letter to “Normals:” Please Read

understanding quote

I came across this letter posted on another blog.  It was originally written to help understand what people with Fibromyalgia live with.  But it is pertinent to all the patients who are and family member of the chronically, “invisibly” ill. So I tweaked it a little. And would be forever grateful if you took a moment to read it (and share it)!

Open Letter To Normals,

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.  I may have to spend most of my day flat on my back in bed or on the couch in jammies, and I might not seem like great company, but I’m still me stuck inside this body.  I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.”

When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means…  I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever.  Please, don’t say, “Oh, you’re sounding better!”  I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome. Happy ≠Healthy.

The same goes for “looking good.”  If I have the energy to, I like to put on a little make-up and a favorite sweater, maybe even curl my hair.  But looking good does not always equate to feeling good.  That’s why they are called Invisible Illnesses.  Looks can be very deceiving!

It is okay to say, “You sound happy today.”  Or, “I know you may not feel well, but you sure look pretty today!”

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting,
“sitting up”,
“walking”,
“thinking”,
“being sociable”
and so on  …. it applies to everything.

That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the bathroom.  Please don’t attack me when I’m ill by saying, But you did it before! There is no formula to follow with my disease.  If I have the energy on one day, I will seize the opportunity and engage in the next present activity.  Just as likely (or even more so), I will get up with the intention of following-through on a plan, only to discover I am utterly exhausted after just getting dressed and will have to lie down.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens please don’t take it personally (I’m just as sad and upset about it as you!).  I still like to be asked, even if I have to bow out.  It’s hard to have a chronic illness and to be excluded from events because you don’t want to make me “feel bad.”

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.  Chronic Illnesses like Fibromyalgia, Lupus, Arthritis, M.S., Polychondritis (me!) and Abdominal Conditions, may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not helpful and truthfully, incorrect – if I could do it, I would. And please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.

Chronic, Invisible Illnesses do not forgive.

Please recognize that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends or family members (or friends of friends, for that matter!)  make a suggest at one point or another. At first, I tried them all.  But then I realized I was using up so much energy trying a myriad of treatments and “cures” that I was making myself sicker, not better. If there was something that cured, or even helped, people with Fibro, CFS and all the other “invisible illnesses,” we’d know about it.  This is not a drug-company conspiracy. There is a worldwide network (both on and off the internet) between people with chronic, invisible illnesses, and whenever there is a new, valid treatment option available, we already know about it (mind you, they are far and few between).

We’ve had to find acceptance in the frustrating fact that medicine has not caught up with the growing cases of autoimmune illnesses. The best support you can give us is to accept this fact yourself.  To accept us as we are, not as you would want us to be.

If after reading this, you still want to suggest a cure, then do it, but preferably in writing.  Please don’t expect me to  rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. Please understand that getting better from an illness like this can be painstakingly slow. (pun intended!)

People with Autoimmune Illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out. Our bodies are literally attacking themselves and there is no pattern that doctors or patients follow.  Each of our cases is unique and varied.

Don’t misunderstand me, I depend on you – people who are not sick – for many things.  But most importantly, I need you to understand me.

Thank you for your compassion,

The Invisibly Ill