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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On Independence

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Barbados recently celebrated 51 years of Independence. As with any other independence celebration there was some focus on history and the original independence day when it was declared that ties were broken and we were now free.

Free to make our own decisions, chart our own path, determine our own destiny.

Yet I am not so sure that the perception of independence is the reality. Looking at the country and all that we need to do to keep afloat I think independence has a different meaning.

As the celebrations were taking place all around me, I could feel my body waning. It’s amazing how those of us with chronic illness can just feel things happening. The slightest change and we know when a flare is approaching, when we need to slow down or stop all together. We just know.

I began to wonder about my life and how truly independent I am. after all I am an adult, the world says that I make my own decisions, chart my own course; after all God gave me free will. I can do what I want, when I want and how I want…right?

I guess on the level of theory that is all good. There may actually be the majority of people who believe this to be true and within the confines of of this world they live and operate as such.

What about me though? What do you do when the level of independence that every random person has is taken from you? What about being ill and your power of choice and decision is taken from you?

I can no longer decide to take the children out 2 days from now, or plan to go to the beach tomorrow or even just take a day to go shopping.

Every thing I do has to be done with illness foremost in my mind.

I was scheduled to participate in a church program two weeks ago and the day before I became ill to the point where I couldn’t walk. I was in crazy pain and had to call and inform the others that I may not be present.

I have been in the habit of always having a backup plan and making sure there is someone else who can do what I was scheduled to do when making a commitment. Its frustrating and depressing but its the wise thing to do.

Just yesterday I was lying in the doctor’s office on a morphine drip………..that was not my intention………….I planned to just pass by the office on the way to work and then jump into my day. The entire day went awry and my next 4 days have been decided for me. All my plans have been cancelled.

It just seems like every single aspect of my life is controlled by my illness. From my clothes, to my food, to my hobbies, to my plans, to ….just everything.

Last post I wrote about Counting the Cost of Illness , I didn’t look at the cost of my independence.

Sometimes, I feel as if I can’t do anything on my own anymore. I feel like people treat me that way as well. If I say I am doing or going X or Y, there’s always a series of questions or suggestions or offers to help. I’m conflicted because I know I need the help but there’s still the desire and need to prove that I can do it on my own. Its as if getting it done is some validation that the illness hasn’t taken it all from me.

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So what is independence to me? What does it mean to those of us with chronic illness? I think Independence is about being strong enough to make the best decision for myself, to take care of myself. Sometimes that decision; the decision to ask for help or to let it all go and not push to do……………..that is true independence.

I just have to move that from the level of knowledge to behaviour. I know it’s true …..I just have to start doing it.

Like everything else surrounding these illnesses…………………..it gets difficult.

 

Counting the Cost of Illness

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I’m not sure if its the time of year and that my birthday is approaching OR the fact that I’ve been ill over the past few weeks in one way or another OR the seemingly unrelated conversations I’ve had during those weeks OR just wanting to do certain things but not being able to………….just feeling a bit morose right now 😦

As happens, in the midst of my pain and misery all the possible horrible things about my life come to mind. You would think that I should be looking at the bright linings on the clouds or something; that never happens by the way. It seems that as soon as I get a bit down I just ruminate on everything else that will push me further.

Staying positive is hard work!

I guess the first aspect of me counting the cost is financial. Its one thing for me to think that I can’t afford an item/ trip/ experience because I simply can’t and another to know that things would be different- at least from my present viewpoint- if I weren’t ill.

Truth is the cost of living in Barbados is pretty high. I remember when we could easily feed our family of 5 for an entire month on $600. Only returning to purchase vegetables and fruit on a weekly basis. That’s laughable now; yes the children are older and eating more but food really shouldn’t be costing $1200 or more a month. Yet, it does.

This of course is compounded by my gluten intolerance and fructose malabsorption; which both require that I have specialty items that are more pricey than the average.

Outside the food though, I feel like being ill has just drained my resources and as soon as I start to see my way back to saving and working on debt, up something else comes. I started to add my bills for surgery alone over the past 6 years and stopped when I passed $50,000. Yes the health insurance paid some of it but surgery year after year will deplete savings and incur debt. That total does not include bloodwork, ultrasounds, x-rays, doctor’s visits and meds which are regularly scheduled parts of my routine. My general medicine on a monthly basis costs around $100. In actuality that’s $500 since I only pay 20% of the cost and the health insurance covers the 80%……for most things anyway. Still grateful for that…yes.

A family member was asking last week if I had a retirement savings plan …….my response was “right now I am trying to live, retirement is a ways off and I may never get there”. Truth is, its on my list of things to do. However, with my total health care costs, health insurance, life insurance, my other debt and trying to save for college for the children…………there’s nothing left at the moment for it. In that moment I just went……if only.

So that’s financial costs. I am forever broke…………..long and short of it all.

Outside that, the cost to my family is constantly on my mind. I went to pick up my son from club two Saturday nights ago and he asked as soon as he saw me if he could attend the “social”. I just stared at him.

All his friends were looking and waiting on my answer. Since, they were all going and I could only tell him that I had to go home. This he knew. He knew I had to get home to take my meds and that I was out longer than usual and would crash as soon as I got into the house. Yet, he asked.

My son knows that I am ill and I cannot be out at night because I am just too tired and weak and its not safe. He knows that I truly am not able and his father has to do so much more because of it. Yet, the 11 year old wanted to be able to enjoy a night with his friends. So, I had to be the one to say no again….and again.

His teacher offered to take him and bring him home after ……………I was grateful. However, on the way home his sister was very quiet in the car. I asked her what was wrong and she said she wanted to go to the social also. Well, she’s 9 and not in his club or group …………..and honestly is someone offers to help with one child I won’t ask them to do the same with the other. I looked at her and my heart hurt. Then she said ” mummy I’m not angry, I’m just sad that you are sick and I can’t go”. I told her “I’m sad too”.

That scenario has played out time and again in my home. Event after event that either I cannot afford to pay for so they can attend because I can’t risk spending out of budget and then need the funds or I can’t take them to because its at night or I am just not well enough.

Families of the chronically ill have a hard time…………..especially children. I think its teaching them many valuable lessons but not all lessons that they need to have at this stage in their lives.

That sounds quite profound ………………….doesn’t stop me from crying…………sometimes daily.

In terms of counting the cost of my illnesses, the last major thing I fear losing is my sanity.

I know illness and especially chronic illness is a major risk factor to mental illness and depression. Sometimes I do feel like I am losing it. I do feel like I cannot do it anymore………..its too difficult. Sometimes, I do feel like I am just fighting a losing battle.

Some days are hard.

Some days I cannot even articulate how difficult it is to just push through the day.

A friend told me yesterday that “love goes a long way”. I know this to be true.

I believe that its the prayers of my friends and loved ones that keep me going. I know that many people don’t believe as I do but I know that there is nothing earthly that is responsible for the fact that I am still here and still in my right mind. In my human strength alone I would not be here today. It can only be God.

So, today I am morose. reflective, down, weary, “depressed” and many other words. Thing is I’ve been here before. The one lesson I have learned through all this is “this too shall pass”.

I will have better days and worse days and good days and horrible days but I just have to hold on. Hold on to those I love…………..hold on to love. There are many of us all across the world fighting for ourselves and fighting for each other. One day it will make a difference.

Until then, I can record this all here……………………..so I can return and read it the next time I need to count the cost.

 

 

 

 

 

 

 

 

 

 

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………………

 

 

 

 

 

 

Truth is….

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Truth is …..its been a while since I wrote anything…………well since I wrote anything here. I wrote and just kept it to myself.

Truth is I’m tired. I don’t have any other words to use but to say I’m tired. Sometimes I say this and people tell me “yeah me too” but they have no idea what I’m talking about. This tired is so deep that only someone in a similar situation can understand.

My body feels like I am just dragging along each day. It take all my energy to get up and get going and then to do it all over again the next day. Right now I have been in bed for the past three hours and I can’t seem to get up from here. I think its my mind that’s tired as well as my body and I don’t know how to stop it from being tired. I am constantly processing everything and not coming up with any different answers.

Truth is I’m hurt.….and I am angry because I feel I should be able to just forget it. This week at work I passed and someone made a comment about my stockings. I admit its pretty weird, since Barbados is so hot, to see people wearing stockings of any kind; furthermore compression stockings. The other thing is that they are not in any way flattering to any outfit since they are so thick and concentrated in the color.

Now, I’ve heard comments before, but I just kept walking and told myself that I know why I am wearing them and anything said by others is irrelevant. This is 5 weeks back to work and about 8 full weeks wearing the stockings/ leggings everyday. Up until now it worked and I just went on through my day. However, this week I just felt like the comments pierced my armor. All the brave face and calm that came as a result of my rational thinking just flew right out the window. I hate the stockings, I absolutely hate them! Yet I know I have to wear them 😦  I just wish I could go out just once looking “normal”……that would bring more problems …so I wear them and try to smile when the looks and comments come and just do what I have to do.

Truth is I’m scared. I feel myself growing weaker and my inability to feel rejuvenated after a night’s rest dwindling. I feel my pain levels slowly rising and not falling at any point but slowly and methodically inching up. I feel myself moving towards a flare and I am scared.  yes, I’ve had flares before, I won’t choose to have one; but they are horrible. I’m trying to rest more and cut back and do all I know to stop it from happening but its just a matter of time. I know it!

Perhaps the worse thing about a flare is not the pain itself but the moment when it breaks and starts to wane. The effort it takes to return to some normalcy and some level of acceptable functioning is phenomenal. I know that right now, I don’t have the mental or emotional capacity to deal with anything………because I am so drained………….and now I am so scared.

I’m scared that I can’t do it this time, that I can’t keep doing this over and over again.

I know I need a break, but I can’t take one unless I have no other choice. I have to keep pushing and pushing just to keep my head above water financially and otherwise. I need to remain the together mommy and wife.

Truth is I feel guilty. Even writing this now, I feel guilty. I hate this back and forth for myself furthermore my family. It seems that just the moment when they start to breathe easy and stop being hyper-vigilant around me; is the same moment when things start to go downhill. Its almost like I have a maximum amount of time when I can be relatively OK and do most if not all that is required of me as mummy and wife and at work. Then I just get sick again- not that I don’t know I am ill- but get sick again in the eyes of others.

This is when the walking on eggshells around me and watching carefully so I don’t fall, watching my breathing and making sure I take my meds…….like some type of police officer…..starts again. Its almost as if they feel the need to do all they can to get me back to the “before flare” state.

I feel guilty for putting my family through this time and time again………..yet there’s nothing I can do about it.

Truth is I am all the above and more. My mind tells me to process it and work through it but I don’t have the will. I just want to ball up and have a good cry. Thing is my guilt will stop me from doing that …………………because everybody is watching.

I know I am not the only one who feels this way at times but truth is I am lonely. I can talk to those around me and my few friends about it but I still feel lonely. I think its because I know they don’t / can’t really understand what I am saying. Neither can they get what I am saying when I say nothing or just give the basic response.

Truth is people take it personally when I don’t want to talk about it all. They start to question my friendship………….if they tell me everything they why don’t I talk to them? Truth is there’s nothing more to say. 

Truth is I write more deeply than I talk

If they ask me now I would probably say I am ok. Funny thing is I am………………..but I’m not.

Truth is I am confused

Truth is I am miserable

Truth is I am not even sure myself.…………..I wish I could skip what is coming but that is the nature of the beast.

Truth is I know this will pass and I will be all positive again. I just would rather go on without the flare and all that surrounds it.

Truth is just leave me alone 😦

Accept She’s Gone: Give up on hope…

thinking-face_1f914I’ve written many times before about creating a new self and coming to a place of acceptance about my illnesses and the situation created as a result. Today I feel like a fraud. This is because once again I am at the stage of having to accept my limitations.

I honestly thought I had done this before. I sat and talked with myself and accepted that I am just not the same person anymore. Then I got a hold of a little hope and I forgot.

We say once there’s life there’s hope and once there’s hope we can live but hope can be a dangerous emotion at times. You see its ok when the pain is horrible and it is clear that nothing can be done at the moment. Then when I meet a new doctor who offers a different perspective, or I use a new medication and it offers a higher level of pain relief…..I begin to hope.

I begin to believe that things will get better…………things are better. To be in the least pain you have been in for months is cause for hope. To have a new procedure bring relief is hope. To find medication that works amazingly at first is hope. Then something happens that dashes it all.

When the pain intensifies, or my body builds tolerance for the medication and I feel the pain more or when a few days/ weeks/ months after the procedure I am back where I started; all my hope disappears.

I know the social butterfly does not exist anymore- she’s gone. I know super mommy and super wife is gone. I know that I am just not able to do certain things anymore but in the back of my mind there is still that hope which pushes me to go on.

So the day when I can cook a few courses of a meal and bake gluten free and regular cake my hope is high. When I can stay out a little longer or do a bit more at work I have that hope in the  back of my mind that I will be able to do it again tomorrow or next week. Then the day comes and I am stuck in bed in pain and its all gone.

I’m not the only one who has their hope dashed time and again. My husband and children are also impacted. Although, they live with me in this state they hold on to hope as if its a life boat and they are drowning. They see improvements and increased energy/ ability to perform a function and start to treat me as if I am well. Their requests and desires come to reflect that belief. I am then left to remind them that I am not well…….just as much as I remind them I have to remind myself as well.

So the deal is this: I am ill. I have no energy most days and I fight to push through. The deal is I have controlled substances to take in order to function.  The deal is I will never be that girl again and I have to accept that. The deal is I may have to set more realistic goals for myself that I can actually achieve,

But I refuse to let her go……….I refuse to give up hope; so what do I do? I’m getting tired of the balance beam that I’m on. I feel like I am falling …………on one side is utter despair and the other is hope. Where does being realistic stop and letting go of hope begin? Idk.

More and more I realize that this chronic illness/ pain management dance is an everyday struggle. My positive disposition yesterday is not enough to last for today. Yesterday’s acceptance and working within the confines of the illness are not enough to cover today when I want to run and can only walk.

In theory I accept that she is gone………….in reality I miss her………..I mourn her.