When The Process To Get Help Hurts

I’m not the kind of  person to find joy in filling out forms and yet having a chronic illness like lupus sometimes results in the need to fill out forms.  Forms for exemptions from things.  Or forms for accommodations for things.  Sometimes the filling out of the forms for an accommodation due to health hardship is ironically enough a hardship in and of itself.

Not only is the filling out of the forms to be a challenge when your hands hurt and your head can’t seem to make the thoughts connect, but sometimes the questions themselves hurt.  Questions like “how different is your life now versus before” or my all time favorite one “how has your disability impacted your life/quality of life”.

I understand that these questions are important, but when they are asked, it’s as if you are confronted again with all you have lost or had to adjust to as a new normal.  Sure on a day-to-day basis I am still dealing with these changes, but I’m busy trying to get through as best I can so I don’t take a close look at the loss in my life.

Being asked these questions is the same as shining a spotlight on what feels like my failings.  I did not ask to have days where pouring a cup of coffee seems to be the same type of challenge as climbing Mount Everest.  I do not enjoy realizing that the long hikes I used to take are just that, things I used to do.  I am no longer able to do that.  And I certainly hate to remind myself that in my life, daily pain and medications are the norm now.  I hate being reminded that I carry out a ritual every week, one that is necessary to save my organs, but also means putting toxic substances into my body that most people will never take for the rest of their life if ever.

And that’s the rub with lupus and other chronic illnesses, you are in a state of struggling with your new normal which can change on a regular basis so you never fully mourn your losses. Instead you are harshly confronted with your losses now and then after you think you’ve done a decent job of filling in some of the void made by the changes.

Thankfully the form I had to fill out today, the one asking me what my life was like before my condition changed and how have those changes impacted my emotional, physical and spiritual health was one on the computer.  Otherwise it may have been sent in with a few watermarks of my own…tears that is.


Today, Tomorrow And Yoga

It was recommended that I attempt a guided yoga class, to deal with some of my pain and stiffness.  So I gave this a go.  The lovely person on the phone suggested I run down to studio and interview the instructors and such.  And so I did.

I found a practitioner who is well versed in working with people who ave chronic illnesses such as lupus.  This was important because I’m not necessarily the best person to respect the limits of my illness so sometimes I need someone who gets this.

Gentle stretches and a lot of posture corrections took up the whole hour.  Not that I was clock watching or what have you.  It is hard to watch the clock when you are bent in such a way that your head is near your knees and your shoulders  need to be nowhere near your ears.  Sounds simple, but in practice it’s a whole other world.

Today reminded me just how limited some of my movements are.  Today reminded me how stiff I am and how used to carrying myself in certain ways to guard against pain has now become natural.  Tomorrow I am sure I will be reminded of this all again!

Please Don’t

Some days I want a direct line to the complaints department for living with lupus. But those are the days I also want a direct line to the complaints depart for people who think they get what I’m going through, but really don’t.

For example, when I have managed to get myself out of bed, showered, hair done and dressed and suddenly find myself needing to rest before I finish my morning routine, it does not equate a healthy person’s tired from staying up too late the night before. It’s not even close. And I do not have the energy to educate these people. (Would it even be worth the expense of my energy to try and educate them given that some people do not want to learn what they don’t know.)

Another example, you insist. No problem. There are times when my joints feel like they are filled with shards of glass. Each time I move, those shards of glass slice and grind further into my body and set my joints on fire with pain. When I don’t move, I still have a slow burning pain. This does not match the pain of someone who does too much being a weekend warrior. You see as a weekend warrior your pain will go ago. Mine will just be tamed a little here and there, waiting to erupt into a full raging fire with the least provocation.

In the past I could almost make a meal out of the number of pills I was prescribed to take on a daily basis. So you will excuse me if I don’t bat an eye when you say you need to take your pill twice a day. Injections? Yep been there, done that and have the holes to prove it. (Still do it to be honest.)

Sure on the outside I may look relatively okay although you will never see me not in long sleeves and pants, I don’t care how warm it is outside. Sure you may envy that rosy glow on my cheeks, but if I were to take off the make-up that’s doing it’s best to keep it under control, you’d not want to brilliant red rash that it really is. So please don’t tell me “it’s just a little color in (my) cheeks”. It’s more than a little color and I’d rather it not be there, but it insists on coming along for the journey. Also please don’t tell me about the time you forgot to reapply your sunscreen and burnt your face. It isn’t the same, I know because I have had a horrible sunburn in the past.

I didn’t ask for lupus nor all the “fun” that comes with this disease. And I’m really not trying to have a game of one-up with you so I’d appreciate it if you didn’t feel a need to play that game with me.

Sometimes I just want you to acknowledge that when I’m tired, I’m tired. When I hurt, I hurt. I don’t need you to seek to compare it with something in your life, I’m not asking for anything other than to have the freedom to make the comment and it be taken for what it is. A comment on my life at a given moment.

A Real Struggle

I struggle to understand some things. Some of it may seem like common sense to others, but to me I just do not understand it. Such as abuse, physical, mental or spiritual. I know it exists and I understand it, but I fail to understand how someone can be bent in the direction of carrying out such abuse.

There are myriad of theories to be sure, but at the end of it, I just can’t see myself in a position of deriving joy or pleasure from abusing someone. I also struggle to understand why a certain group of people’s needs supersedes others. And this is a personal point for me. We all want to be first, we all want to matter and so on. But I fail to understand why one group’s need to be protected from certain substances takes greater priority than my need to have my pain managed. And no, I am by no means an addict nor am I seeking narcotics. However, when I show up in an emergency room in so much pain that I am physically sick and no longer able to speak without tears I would appreciate being afforded respect and dignity.

Not being labeled as drug seeking simply because there is a huge influx of people who seem addicted to pain meds and have learned to claim to have certain symptoms in order to get their fix. And because of these people, when others with chronic pain or such come in to emergency rooms in dire need of help, they are now looked at as being drug seeking. I do not understand how one group can be allowed to determine the health care questions and assumptions for everyone who walks through the door.

Of course I also fail to understand how we can have such a great understanding about addiction and such a little understanding of the many different ways lupus can affect a person’s quality of life and pain levels.

I struggle to understand why my needs and concerns are not taken as seriously by the government as the needs of addicts. And why I must be painted with the same brush as they are when my needs and situation are rather different from theirs. Perhaps the idea is, it is okay to waste my time and a nurse’s time going through a rather long and ridiculous questionnaire just to have a doctor review it before taking my lupus issues seriously.


I’m not the type of girl to cry over a broken nail normally.  Except today.  When my nail broke down deep while visiting with my favorite vampires, also known as a blood draw.  The poor woman getting set up to draw my blood bumped my hand and my nail broke down deep.  It started to bleed and hurt like heck.  So I cried out in pain and surprise.

To be honest the lady who bumped me with her cart resulting in the broken nail had more tears than I did.  She kept apologizing and saying it was the worst time of year to have this happen, so close to all the parties as such.  There aren’t really any fancy parties this year for me, not with my new medication routine and side effects.

The truth is, I’m breathing a small sigh of relief at not having to go to all the parties.  Of not having to be all made up, hair done and nails just so.  Let’s not even talk about the shoes and clothing that need donning.  And all the energy into getting ready and then faking that I feel cheerful and healthy.

So I did  cry out over a broken nail because of the pain and not because of the hardship it might bring.  And truly if a broken nail brings hardship, life cannot be that bad.

Fit To Be Tied or Tied In A Fit

He pushed and prodded.  He strummed and rubbed.  And then he basically gave up.  It was, he declared, not wise to continue to try and loosen up the “knot” which he was positive was the result of my painful neck and headache.

I wanted to scream in frustration,  it my head hurt too much.  I wanted to cry in pain, but I needed to ask what he could do now to get me some relief.  I wanted to demand that he get back at this massage thing he is supposedly an expert in because I needed a break from the pain.  Instead I calmly asked questions.  Even thought I already knew the answers.  And at the root of each answer was the one word I am sick of hearing about, not to mention tired of accommodating.  I wanted him to massage lupus out of my body for good instead of telling me that he could do no more now because, well, lupus.

The old thing with lupus, at least for me, is that I need massage to ease some of the pain and get back some of the movement in my body.  But massage cannot happen if lupus is insanely active, which it is far too often.  And after a massage, lupus loves to act up which then means more pain .  Basically it’s the lupus dance, go forward just to have lupus gain the upper hand.  Get a bit of ground back and start to feel more like myself only to have lupus rear back up.

In this case lupus has me tied in knots.  Unfortunately for me, the person untying my knots is too tired to try and remove then anymore right now.  And I’m fit to be tied, so to speak!

One Of Those Some Days

It’s been one of those days.  It started off okay, but quickly became one that was full of too much.  Or maybe it isn’t so much that it was too much as it was a case of me not having enough energy for everything.  Not that it really matters in the end because the results are the same.

The results  can be explained as follows:  pain, frustration, exhaustion and a degree of anger.  And that’s just within myself.  If anyone has to deal with me during one of these days, well I pretty sure their list has my results plus others!

So how does a person with lupus end up with one of these days?  Sometimes this person may overestimate what s/he is capable of doing for that period of time.  Sometimes what s/he thought would go a certain way ends up going a different way.  And sometimes, well sometimes lupus just steps in and has a say in things.

So the person, this person, cannot always change that.  But this person can try and make the best of things where possible. One these days, this person tends to retreat to be on her own and uses the time to read and rest.  Or at least not have to infect other people with the miserable mood that settles upon her.

And some days, sometimes, despite it all, this person ends up with tears down her cheeks.  But tears can be an emotional release which helps too.