To explain my illness …or not to explain ;(

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Sometimes telling people about my illnesses can be a double edged sword.

On one hand I get tired of people commenting that I don’t look ill or that I should be able to do x y or z because I look just fine to them. Many times I have to tell people that I am not well and that is why I cannot do or help or work on something or go somewhere.

Honestly, most times I say I am tired or just not able, since I look just fine. There are people who may be suffering form an acute situation who actually “look ill” while mine is chronic and I don’t. Sometimes, I am compared to them and just about everybody else.

In this situation I figure the best thing to do may be to explain what’s going on. Thing is I am not always ready for the reaction.

I don’ like pity but that’s what I get more often than not. “I’m so sorry for you” or ” that’s so sad” or ” oh my, that just makes me want to cry”.

The flip side of it is people treating my like I’m dying ….or dead……. because they know I am ill. I wrote about it in I’m not dead yet…..sheesh! at that point I was frustrated because I was constantly overlooked for the simplest things.

Those who know I am ill and how the illness impacts me sometimes make comments like ” I know you won’t be able to handle it so I didn’t bother to ask” or ” You too sick to do that anyway” or even ” that isn’t for you, you gotta be able”. These types of comments cut me to the core.

Its as if my inability to do today equates to my inability to do ever again. Its the same thing that has frustrated me for a while now; people making decisions for me. They don’t even get my opinion on the matter and most times I can’t do anything about it.

See, I don’t want to seem ungrateful for whatever help is offered but at the same time I have a brain and an opinion on matters. I would like to be heard.

Its either feeling sorry for me and throwing a pity party or treating me like I am not capable of even the smallest decision/ action.

So, what do I do? What should I do? In many cases I do what most of us with chronic and especially “invisible illnesses” do; I say nothing and go about my business. I never ask for help because I don’t want to appear weak and I have mastered the straight/ normal face even when I am in the most excruciating pain.

I live a double life. I present one image but underneath the truth is very different, yet, I don’t see any other option. I can find the middle ground between being pitied and being deemed helpless but I think its difficult for those around me. Invariably those who I let see the real me gravitate to one position or the other. There are even those who shift from one to the other and back again.

Its taxing beyond words to live my life……………..so I know and can appreciate how challenging it would be for those who love me and have to work or interact with me on some level.

Yet, this is how I feel.

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Pain flares: Deer caught in headlights!

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Today is the 10th consecutive day I am at home that I should have been at work. The reason: a pain flare 😦

You know in the movies where someone is in the middle of the street and a car/ bus/ vehicle is towering towards them and you want to scream “GET OUT OF THE ROAD! GET OUT…….”? Then you start to wonder what the script is all about because its so stupid……. someone could just move from the road? Then you start to think that its not a physical action that’s required but and emotional or psychological one and that’s what is keeping the person there?

Well, maybe you don’t analyse movies that much, but that “deer in the headlights” is me. Its me when going to and through a flare…………there’s nothing I can do. I will get hit and hit hard and I can only pray then that I can get back up again.

See, some of us know when a flare is approaching. There are all the warning signs that tell us to stop/ slow down but we can’t.

I knew that I was pushing it at work and doing more than I should; but it was work and it was necessary.

I felt the pain from driving and felt the afternoon fatigue coming earlier and earlier each day; but I changed nothing.

I knew I was eating and sleeping less and my level of productivity was dropping; yet I continued.

It stopped becoming about the vehicle that was approaching me and more about doing as much as I could before it hit. Only that in itself caused the vehicle to pick up speed.22df11541e2aab7a12cfe74ff80365e7-rheumatoid-arthritis-quotes-psoriatic-arthritis

Its a vicious cycle.

Truth be told, I didn’t wait until I collapsed at work or hubby had to drag/ lift me anywhere. I felt it happening and I spoke to the Doc.

Thing is thought that being proactive would make a difference. I was wrong!

The pain knocked me down and out in one go. Instantly, I was banished to bed and hardly eating. I was under the covers one minute and throwing them off the next because my body temperature went wacky- as it sometimes does.

I had to raise the extended release back to 90 mg a day (my original prescription) from 60 mg a day (what I was actually taking). I also had to take some fast acting morphine to just ease through the first few days.

Sounds like I was handling well…………………………but I wasn’t. I was losing it quicker than ever before.

The increased morphine helped with the pain but caused me to itch like crazy, especially at night, I don’t know if there is some significance to that and sleep but it was horrible. Between the itch and accompanying dry mouth, I was jumping out of sleep at least eight times a night. Unfortunately, so was my husband 😦

I could not sleep and became sleep deprived. I could stop the meds and have painsomnia or take them and have insomnia…………..not much of a choice.

It got to the point where I had a meltdown. I was in the middle of writing a class for university and fighting my way along through the pain, when I started to cry. I cried………….then I wept…………then I collapsed in a heap and continued to cry. My brain just shut down, I couldn’t think, I couldn’t process what was happening and I definitely couldn’t make sense of the work I was attempting to do.

I wound up saving the information to a flash drive alone and not as I usually do to another flash, the computer and one or two clouds. I then proceeded to break the flash drive and lose all the information. Then I just continued to cry. I could not stop………………………….I cried for anything and everything and nothing.

In order to sleep, eventually had to drop the dosage of medication back to below what was prescribed. I was able to sleep some but the pain just raged.

This was about 6 days ago and I am still in pain. Thankfully, its not as bad but it cannot be ignored. I can do more now but I cannot do an entire day, so I am still at home. I have no idea when the flare will end or how long before the next one.

All I know is I’m that deer caught in the headlights and unable to move. These illnesses are like cement keeping me in position and powerless to get out of the way. I can only prepare as best I can and then ride it out.

On a scale of 1-10……

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On a scale of 1-10 where is the pain now? “9” I say , totally straight faced and cool. “Obviously, that cannot be true!”

My question is why not? Why can’t I be at level 9 in my pain scale and not be rolling over the floor crying and screaming? How do I do this? I’ve had years of practice.

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Firstly, I think that women are socialized to bear pain. We menstruate and are taught that pain is normal, any amount of pain is normal, so just bear it…………and amazingly we do!

Even when we can barely walk and can’t keep food down and are hardly functioning………we do.

So, we go along with no idea of what is too much pain………because there apparently is no such thing.

Then, we have children, we give birth to them. They say that childbirth / labour pains are the epitome of pain……………….. and yet we do it with such grace over and over again. That means that we can handle anything, any type of pain.

The thing about it is that my pain scale and your pain scale are completely different, There is no way of knowing what my 10 is vs your 10. My 10 may be your 15 for all we know.

The process and scale are completely subjective. So when the doctor asks ” 1-10″ he just has to believe that what I say is true.

Us women are great actors, we play many roles on a daily basis and expertly so.

I am mummy and that means that I have little human beings who need me to do things for them, to spend time with them and to take care of them. I definitely cannot do that effectively if I am doubled over in pain. So, I put on a smile and do what I have to . I may lean on a wall/ door every now and again or sit when I would normally stand or move slower…………but I still do what needs to be done.

Since I am concerned about my children’s emotional health I am cautious with how often I let them see me cry. I shield them as much as possible. After all I am the woman who walked around in labour and only stopped to brace when the contractions were close. If I can do that I can surely hide my pain from my children.

I am a wife, friend, Counsellor, Psychologist and so many other things. Each of these roles demands something different of me. Shakespeare thought all the world was a stage and we are all just actors. How true that is.

The other thing I have realized is that women keep moving the threshold of our pain higher and higher. It is an exercise in persistence but one that is familiar to us all. We teach ourselves how to endure ever increasing levels of pain and just smile through it. We are so accustomed to pushing past the pain that it becomes second nature. So level 10 this year may be lower than level 10 next year for  the same individual.

Reality is that asking me “1-10” is useless unless you are my regular Physician who manages my acute pain episodes on a regular. That is the only way that a doctor can truly understand when I say “9” and am walking into his office on my own. It would also help if he’s also seen what 10 looks like 😉 Then he is more likely to regard my rating as true.

I remember years ago taking a prescription for Pethidine to the Pharmacy and the Pharmacist questioning its accuracy because to her I looked fine.

Side bar: I find men are more quick to believe me than women 😦 Subjective much???? The profession requires objectivity though:(

The same thing happened when I first had my present morphine prescription; that was until I happened to be in the Pharmacy in the middle of the contraction like pains and was stumbling; good thing hubby was there to hold me up. They haven’t questioned the prescription since……..

So, it is safe to say that the scales as they exist need to be revised. Since pain in itself is a subjective experience and us women have taught ourselves to bear it; any external indicators must be taken with caution. The extent of my physical distress or lack thereof in NOT an accurate indicator of my pain levels.

The only true indicator is what I tell you!

Doctors and researchers need to look again at how they assess pain levels in women. Our socialization and practices have equipped us to endure untold levels of pain without any outward indicators.

Its about time doctors start listening to women!

Its about time doctors sought to understand women!

Its about time doctors start believing women!

Our pain is  more real than you can ever know………………

 

 

 

 

 

 

Elephant in the room? Introduce it!

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You know how I spoke about Update….Helped one Condition….Hurt the other 😦 and the issues i am not having with Pelvic Congestion Syndrome? Well today I had an experience which told me I have not been doing too well introducing the elephant.

I actually said to my colleagues “ignore me”.

I am doing training in a CVQ- Caribbean Vocational Qualification. Elsewhere in the world they’re termed NVQ- National Vocational Qualification or some variation of that. This training requires that I sit for 4 hours straight with just one 15 minute break about halfway through. Problems!

I cannot really sit for 45-60 minutes without having to change position, stand, walk around a bit. Well actually I can but my legs would have to be elevated or I would have to at least be wearing the compression stockings/ leggings.

Did I mention that one pair of those cost over $100. Anyway, I did order a few but they haven’t arrived as yet. Since I am 5′ 10″, those available here were just too short so I am waiting on them to arrive.

In this conference room setting with a group of people I have just met for the most part, its sit at the table and write/ listen. There’s no foot rest or extra chair for elevation like in my office……even if there were….this is a new group.

So, I intentionally sat at the back of the room so that I would be able to at least stand every 40 minutes or so without having to walk the length of the room and disturb others.

Well, that didn’t work. Every-time I stood, everything stopped and all eyes were on me. “Do you have a question/ comment?” “Are you ok?” The questions came.

In my head I was thinking, what can I actually say to these people? I said “just ignore me”; but is that what I want? Do I want them to know why I am standing? Then I thought I have to introduce the elephant next training day.

Question is though, what parts of the elephant? How much of the elephant?

This is the dilemma many of us with chronic pain face. We don’t want to stand out, we would rather just blend in most of the time. However, that is hardly possible the majority of the time. Then we don’t want to be the focus of attention and be fielding questions and comments but how can we avoid it.

How do we give enough information for understanding but not too much to create “oh how sad/ wow so sorry/ oh no”. Where is the balance found?

I have no idea, I just know the elephant is in the room and it makes no sense acting as though it is not. I will just have to find a way to introduce 2 chronic pain conditions and still be a part of the group who is treated like everyone else and viewed like everyone else.

I’ve got a few days to figure it out….sigh!

 

Post – Surgery Update

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I arrived at the hospital just after 10:00 a.m. and was immediately processed in by the staff nurse on duty at the time. She informed that the doctor was already in theatre with another patient and that she had been looking for me earlier.

We went through the usual review of all documents and anaesthetic checks and then I changed into a gown, anti embolism stockings, booties and head cap; got the IV attached along with the blood pressure cuff and waited until I was to be escorted into the theatre.

I walked into the operating room and proceeded to lie down and prepare for all that was to come.  The last thing I remember was the Anaesthetist saying that they were just about ready to proceed because I was going under and the oxygen mask being put over my nose and mouth.

The next memory after that is being pulled from the most exciting dream by people calling my name and becoming aware of the most intense pain and feeling as though I was about to freeze.

Sidebar: This is always my experience coming out of anaesthesia. I am always dreaming and not immediately aware of being in hospital and I am always cold; cold till it hurts.

I tried to talk but my teeth were shattering and my legs hurt like I could not remember them ever hurting before. The nurses covered me with the electric blanket to get me warm quickly and the doctor came over to examine my legs (they had told me to bend them and I could not get it done, I tried but was unable to move them).

Looking back, my feet (legs) were placed in stirrups for the entire procedure, which was around two hours. Not your ordinary GYNAE office type. these ones held from my knees down in a special boot to keep circulation going. I was positioned as in the photo….my boots were a bit longer though.
933267_dMy thighs were rebelling from the pressure placed on them for such an extended period. After another 15 minutes or so I was able to bend my knees and move my legs however I chose. Despite all this progress the pain was not easing enough for me to rest and I was just too groggy to be discharged anytime soon. I ended up being admitted to the ward and spending the night in hospital. I didn’t sleep much since I was monitored- vitals taken etc. and medication given every few hours or so.

The Results??

Well the doctor’s words ” we didn’t find much in the way of Endometriosis”. No surprise for me there. That should be he didn’t find much that he can identify as Endometriosis. What he definitively identified was excised. However, he did say they found numerous “unknown” deposits throughout my pelvis. Those were also “cleaned up” but most sent to pathology for examination.

Secondly, my ovaries were left intact…yeah (NOT)…sigh….because all the cysts had disappeared and they looked fine.

My left ovary was stuck to the bowel, which was then adhered to the pelvic wall. There were also numerous other spots of adhesive tissue/ bands which were cut and the scar tissue removed.

In effect, there was more to be done than I anticipated.

Progress?????

Well its been just about 7 days and I am slowly improving. The 5 incisions are healing but they still hurt. I am able to walk around the house but tire quickly. I have been mainly just resting and taking my pain meds.

It will take a few beats for me to really gauge the success of the procedure and improvements. However, I can say that the separation of the ovary, bowel and pelvic wall has been immediately noted on my end. Whereas, before the op I would have  a BM and feel the stretching and most times have cramping and have to lie down for a bit; since the op I have not had that experience…..no stretching……..no cramping….no pain. So, that’s one positive!

Beyond that, I am hopeful and I do believe that overall things will be better……….especially with the pain.

I have no delusions. Whether Endometriosis of Pelvic Congestion Syndrome; both are chronic, progressive and degenerative. I take whatever I get from the procedure and move on. Continuing to fight, advocate, research, learn and grow. I know that whatever happens God’s got this …………..and that’s good enough for me.

My Chronic Pain Labor Lessons: When you can no longer push.

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22 hours before I gave birth to my daughter I was sitting in my doctor’s office, it was just the weekly check-up. I was 39 weeks and feeling horrible. The doctor did an in office induction. He told me to go home and rest because I would not make it through the night, the baby would be born by morning.

I went home, spent most of the day in bed and as he said went into labor close to midnight. Off to the hospital I went.

As the contractions grew closer, the doctor arrived and we got ready for the delivery. let me backtrack a bit and say I was exhausted. It had been a rough day. My body was worn even before the labor began. I had an IV and oxygen and was just trying to have a living baby and stay alive myself.

In the room were the doctor, midwife, my husband and me. People were asking me questions and I could not answer:

Lesson 1: When in pain its difficult to think

This has been my experience over the past few weeks as my pain has continued. I have an increasing amount of brain fog. To the point where I am making a statement and midway I completely forget what I was saying. I forget people’s names; things that were so simple and almost second nature to me have become difficult in those moments.

Back when I was in labor, it was Ok. It was accepted that I was in too much pain to process what I was being asked. Now people just call me forgetful or question my brain function.

I wonder why?

As the labor progressed, I started to whine. really whine. I had come to the point where I thought no other person understood what I was feeling and I didn’t have much energy left.

Lesson 2: When you talk about your pain……….people think you are exaggerating.

I was telling everyone how I couldn’t take the pain any longer. The responses I got while in labor were meant to encourage but came across as being ignored. I was reminded that I had done it before and that my body knew what to do and not much  more to go etc.

I have the same experience now. Only thing nobody really bothers to encourage. Let me say here that I do have my small, faithful group of cheerleaders; they are exempt from the “nobody”.

Generally though, people think I am exaggerating when I speak about pain. I’ve gotten so many “it can’t be that bad” and “you’re making it seem worse than it is” comments that I actually stopped talking about it. I’ve gone silent…for the most part.

Although labor was painful, it was better because at least people believed the pain existed…….even if it was minimized in order to provide encouragement.

 

As I stated earlier, I had oxygen and an IV during labor and I was becoming exhausted. After the doctor checked and said I was ….cm dilated I told him that I couldn’t do it anymore. I needed help.

Lesson 3: There comes a point when we can no longer push through…we need to ask for help and keep asking until someone listens.

The doctor did two things at that point. He got me some pain meds and asked me to pull myself up into a sitting position using the bar over my head. the meds helped with the pain and sitting employed gravity to help the labor progress.

I came to the point this year where I could no longer push. See, I am accustomed to just pushing through the pain. Doing what I have to do regardless, just getting it done. I realized that all that I was accustomed to doing and using were proving ineffective. I needed another level of intervention.

 

Again, people understand and accept this with labor. In my case they just behave as though I am making the choice to stop doing what I am accustomed and using an illness as the excuse……….instead of just saying I don’t want to do it.

Labor is known to or known of by everyone. I guess that makes it easy to empathize and sympathize. My illnesses being unknown and misunderstood must automatically place me in the category of someone who is pretending or lying.

 

Shortly after the sitting and meds I was ready to push. One push and she came screaming into the world.

Final lesson: Regardless of the journey, bruises and bumps along the way….I can make it through.

By the time my daughter was born, I was spent, physically, emotionally and psychologically. I was hungry, sweaty, bumped and bruised but I made it.

I take comfort in that. I know that chronic illness is not like labor. Labor is an event. It passes and then is no more. I am not going to have these illnesses one moment and then a few hours later no longer have them.

However, there will be acute pain episodes and sometimes weeks or months where the pain flares beyond the norm that can be likened to labor.

From January to now I’ve been in labor. The contractions are almost back to back now and I know it will soon be time to push. Through all the challenges with brain fog, talking about pain and being ignored and having to ask for help I know I will make it.

I will still be ill. However, this period shall pass. I will have the scars and memories but I will be ok.

After that, whenever next my labor experience begins again…..I will remember the lessons I learned to get me from one point to another.

Unrelenting pain :(

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These past few weeks have been rough, extremely so. I cried more than I have cried for years. I cried from frustration, from depression, from “isolation” (I wasn’t isolated but felt so), I just cried.

As you know I was at home from work for a while because the pain was just too much for me to cope with. It was not only physical, it became emotional and psychological. That combination threatened to undo me. I felt as though I was just unraveling and was powerless to do anything about it.

Reality is that emotional turmoil and psychological stress lead to decreased levels of coping. In my mind I just hit rock bottom. Truly, hit it. I had many days here at home alone in bed to consider all that was taking place in my body and mind. It exhausted me to the point where I just slept for hours on end. I needed to sleep, so I did.

I wish I could say that the pain has subsided or eased up any……it hasn’t.

I went back to work on Monday, not because I am any better, rather I felt I needed to go. This week is the last week of school here and I wanted to terminate with my interns and close off the office for the holiday.

Although happy to see me, my office personnel were and are concerned about my pain levels. I have been “surviving” on the maximum dosage of pain meds throughout the day. Just today, I had to put my feet up and lean back in order to stay at work. When the pain increased it jumped from 6 to 8 and began to threaten 9.

I came home after work, ate a little, took some meds and went to bed. I stayed in bed for 4 hours before I was actually able to get out. I tried before and it didn’t work. The pain was just piercing my body. As usual it was mainly concentrated in the right ovary but extended across my lower back and down the right leg. On two occasions I attempted to get up from the bed but the pain just pushed me back down. Its unrelenting.

So, from January to now my spiral continues. Yes there are moments where I can do stuff; I was able to bake the children some cake for the children on two occasions. They were really happy about that. I still cook, although I do most of it sitting instead of standing like before. For the most part though, my bed and couch have become my best friends. I loved them before but we are almost inseparable now.

How do you answer the question when you forgot what normal feels like? You don’t. At least not in a way that makes any sense to those who ask it. I’ve also learned that normal doesn’t exist, not really. It is what I make it. Right now, normal is more hours in bed than out, that’s ok. Normal evolves as things change.

I continue to pray and trust that my normal will one day be free of pain……….and if that’s not an option……….then that the pain will be manageable. I refuse to let this pain define me………I cry….. but then I move on.