I Can’t Anymore….Just Can’t

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It’s been a while since I’ve written anything here. Truth be told I just didn’t have the motivation. So much was going on in my life; my pain levels have been crazy and my down days were overshadowing all the others.

Just to catch you up: I had surgery in August, this came after having an Ultrasound, an MRI and a Colonoscopy. The MRI showed a 3 cm mass and 12 cm of thickening in the colon. They thought that it was cancer but the Colonoscopy was clean- no mass or thickening. That was still concerning since it meant that what was seen on the MRI was on the outside of the bowel.

So I went into surgery after weeks of excruciating pain, still unsure of what would be found. They found a 5 cm chocolate cyst in the left ovary. That ovary was stuck to the bowel, bladder, ureter and pelvic wall. The OBGYN  described it as a messy ball. They had to stretch and dissect it all. The General Surgeon noted that the thickening and “mass” seen on the MRI was all scar tissue and deposits on the outside of the bowel. I also had several para-ovarian cysts filled with fluid across my pelvis.

They took the ovary and all the cysts, cleaned up all the scar tissue and endometriosis deposits. I was in theatre around 3 hours and spent 5 hours in recovery. I really didn’t think I was getting our of there alive………………….but that’s another story.

So………………..you’re caught up!

Since the surgery I have had relief with bowel movements and urination. There was debilitating pain with both before the op. Which was associated with the organs being stuck together. However, no other pain relief! I have continued to have crippling pain . I had continuous pain for a few weeks post surgery and since then again at ovulation and cycle time. I returned to work in October and was only able to work for two weeks before I had to be off on sick leave again.

That has been the general pattern since then. I work 6 -10 days and then I have to be on leave again.

My cycle has settled back into a predictable routine. 28 days exactly; so every 2 weeks I am in pain which I cannot manage. Sometimes, it seems as though there is no ease or break in between ovulation and cycle. I’m just in constant pain.

I had stopped taking the morphine after the surgery; I had hoped that I would not have to take it again. However, I am now back on it just as before.

I am also taking “Visanne” for the Endometriosis. That is a relatively new drug, formulated specifically for Endometriosis. It is supposed to retard the growths of the legions/ deposits, in essence restricting estrogen and shutting down the ovary/ies. It works just like GNRh Agonists e.g Lupron, Danazol. However, it has been shown to have less harsh side effects.

The only change I’ve noticed is less breast pain and people are telling me that I have gotten clearer, my skin looks shades lighter- well to others………..it looks no different to me-………………….and that’s it………….no other change. Thing is though, since I have both Endometriosis and PCS it’s difficult to differentiate the pain. So the Visanne could be working on the Endometriosis but my pain be coming from PCS.

What drove me to write today though………….I told two persons that I am on sick leave again and they both responded in similar ways.

The first person said ” I don’t know what the problem is now but I will pray for you”.

The second person said “You have to get better this time”.

I believe they are both genuine in their comments. They both care for me deeply. Yet, they do not understand the nature of my illnesses. There is no “this time” or “getting better”………………..at least not in the sense they are meaning. They, like everyone else, still see my pain as acute as opposed to chronic. So they expect that like them, I will be ill and get better. So, there’s no need for the constant meds and time off work.

The nature of chronic illness is that it’s chronic- lifelong. It’s with me for the long haul. I may feel better sometimes and be able to work but, I am still ill.

How can they be close to me and not understand. I have explained time and again and now I am tired of doing it.

Is it that people don’t listen? Or is it that they just have hope that I no longer have? Honestly, I don’t know.

What I do know is that their comments rubbed me the wrong way. I felt like they understood………………….now I see that they don’t. Can I blame them though?

Unless you have a chronic illness, you don’t or can’t get chronic illness. That’s the sad truth.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Sick and Tired

 

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It’s been quite a while since I’ve written anything here and even longer since I’ve been even on the site reading what my peers have written. Have I been busy? Yes………….busy being sick.

They say that you have to get really tired of being “sick and tired” and then you will do something about it…..I guess this is me doing something about it 🙂

This term/ semester at work ran for 12 weeks, this is week 11 and thus far I have been away from work at home for 7 weeks I believe. I sat and thought about that this past week. It wasn’t seven consecutive weeks, it was more a week here, 2 1/2 there another 3 here etc. Its amazing how unproductive that thought made me feel.

I feel like I have just been wasting away in bed, in pain these past weeks.

Truth is, I don’t think I can do a “normal” 9-5 anymore………….well at least in my present work environment/ doing my present job. I wear the compression hosiery as a rule and I sit with my feet up and reduce my walking and moving around but it is still too much on my body. The more fatigued I become, the more pain I am in, the more pain then the more meds I need; the more meds I need then the more time I have to take off work, Its a vicious cycle.

I need a space where I can lie down in the middle of the day for an hour and then wake up and go again. One where I am not as pressured and hurried. I need a slower pace.

Reading about and talking to many other chronic pain warriors, its not that we can’t work or be productive but the terms under which this is done require adjustments and a measure of flexibility that is at times difficult to find in mainstream workplaces.

Back in March I wrote March 2018: I’m 1 in 10….Oh the Irony! That was focused on my Endometriosis more than anything else. Since then both conditions have gotten worse. I have a blood filled cyst that is ever increasing in size on the left ovary and at least two other fluid filled ones and a host of free fluid in my pelvis. That combination is very painful especially at ovulation and cycle times.

These cysts stop me from wearing my stockings as often as necessary because the stockings compress the abdomen which in turn pushes on the cysts, which as you may imagine is problematic.

The reduced wear of compression stockings has caused me to have many more vein blow-outs than normal. Again instant pain……I also started getting veins bursting and bleeding into the tissue. So, I would awake with a pool of blood just beneath the surface of my skin and the veins around it raised. The pools take a few weeks to disappear and in themselves do cause some degree of extra pain, especially within the first few days.

I’m driving less, leaving home less, scaling back on an already almost hermit like lifestyle……this is absolutely crazy!!!!!!

So, I’m sick and tired……………….now what is the change?

What is it that I am going to do differently? Well, first I have to have surgery to deal with the cysts and adhesions. After that…….I think I may be on the path to a whole new person.

See, I decided that I cannot just lie here in bed for the rest of however long and be sick. I have to live my life. If my body won’t cooperate, I have to use my mind. I must still strive to be the very best version of me in this season!

That Lyn, will push to have “Dr.” written in front her name. She will push to have the private psychological practice up and running and self-sustaining. She will push to travel and explore more. She will fight to live. I’ve no option really……………the alternative is to remain sick and tired and do nothing…..

 

 

March 2018: I’m 1 in 10….Oh the Irony!

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March is Endometriosis awareness month. Right now, all around the world, women are lobbying, campaigning, telling their stories and getting ready to participate in the worldwide Endometriosis march.

So, I should really be writing an empowering, disease busting, Endo warrior blog post today….Yes?

Sadly, all that I can write is a frustrated, confused, miserable post ……. through all the tears I am not allowing to fall.

Its difficult to look at my Endometriosis on its own. Since I have both this and PCS. I can distinguish the differing pains; I can identify particular symptoms that are specific to one and not the other. However, just as my treatment cannot be isolating of one illness in favor of the other; neither can my posts.

Today…………right now…………. I am pissed….but you know the Psychology and my being all in my head…all the time. I know that anger is a secondary emotion. When I unpack this I am deeply hurt, I am sad, I am scared, I am frustrated. I told someone today that I feel like I am sinking and am unable to thread water. I feel helpless.

Since the surgery last year, when my left ovary, bowel and pelvic wall were separated I have felt some relief in terms of the stretching, tugging ………………constant pain. So, the surgery helped in that regard. However, I am still battling the pain…………………….each and every day. The Endometriosis pain and the PCS pain. Each constant, each debilitating and each unwelcome.

I know we try to be optimistic and not call trouble and issues but all of us who live with these conditions know full well when things are spiraling downward. So I knew, I know…..I just wish I didn’t.

Over the past month or two the pain has been extending over more days and I have had less good days ……..but you know me, I push……and push……….and push. Last time we made love I got the distinct impression that something was different inside. Remember, I wrote about the sex or lack of in Sex………Love to Hate to Love It!!! So, any sex is welcomed for us both. What I felt wasn’t anything that made me stop but it was enough for me to take note.

As usual, when the plateau ended and my endorphins fell, the pain began. I expect and accept the pain…………..well once the sex is good….or better than that 🙂 . So, I took my meds before and have been consistent with them ever since. The pain is not responding to the meds as it should and that made me wonder what else was amiss.

Sidebar: Did I mention I got a TENS unit? Don’t think so. It’s absolutely amazing! I’ve been using it and it does help loads. It gives me hours in my day with reduced pain. Where I would have to take fast acting morphine, layered between my prolonged release daily prescription; I can use the TENS instead.

Anyhow, when I assessed the situation, I initially thought that I had developed a cyst that had become problematic. Since, I developed the poly-cystic challenges, I have had a few of those cysts that brought extreme pain and then ruptured on their own………..with enough intensity to drop me to the floor, unable to do anything. So, I thought that was the case.

Then, I stopped everything and really connected with what I was experiencing………………it was at this point I realized that the pain was the same I felt before the surgery last year. The same stretching and tugging when I shifted in a particular direction, the same sharp pain down my legs, the same issues with even the slightest amount of urine in my bladder…………………..every-thing that I knew…………what I thought was gone………….it’s back.

Rationally, I know this, I understand Endometriosis and scar tissue and adhesions and just about everything else about my  illnesses. Yet………….I still hope/ hoped that at least the improvements would last longer.

Truth is surgery causes adhesions and surgery “fixes” adhesions.  I knew going in that This was the likely outcome……….I still spent the thousands and had the op done……just hoped for at least a year.

March 2018, Endometriosis Awareness Month. I am the 1 in 10. I say this not with pride or dread………….it’s just a fact. It is what it is.

Right now however, I wish it wasn’t 😦

 

 

Learned Helplessness & Illness

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It’s amazing how long this post took me to write!

So much has been going on in my neck of the woods. So much to update on.

Well, you know Psychology is my jam…………….its my heart…………I love it! Sometimes though, it keeps me in my head………a lot!

In the 1970s, Martin Seligman came up with the term “learned helplessness” as a result of some experiments he did. Further study aligned it with the psychological concept of attributions.

Basically, what Seligman said is this:  we have a bad experience, realize we can’t control it and from then on become resigned to the outcome. We don’t try to do anything to change it. So the next time we are faced with a challenge we don’t try; just decide that the outcome will be negative and give up…………we’re resigned.

Attribution theory is about assigning feelings, beliefs,intentions and meaning to behaviour; especially that of others. In this case the meaning assigned is about us as individuals; we determine that we are powerless and that the outcome will be negative. Therefore, we do not try.

What has this to do with my illnesses?

Well, learned helplessness is linked to anxiety and depression and we all know that chronic illness is a major risk factor to both these conditions.

Thing is though, I am beginning to feel like people expect me to be helpless, rather they expect me to act helpless.

I am ill yes………that could be considered a negative experience and in many ways I have no control over it. It’s a recurring decimal in my world. I don’t think it means I should be resigned to it. Yet, others seem to think that.

I go to lift a bottle or drag a table or just try to do something……….anything and I get a look or a question like “why are you doing that” or “you know you shouldn’t do x, y, z”. It is a catch 22 because yes I know……..the potential exists that the activity may cause pain……….but I still have to try; what if they weren’t there? What would I do then?

You know the picture of the elephant above? It’s tied with a tiny rope to a small peg. Yet, the big, strong  elephant just stands there. The elephant has been trained to be helpless; to act helpless………….and it works!

I refuse to be like that elephant!

So many days and nights I wonder if this is it for me. I wonder if things will continue as they are or if they will get worse. I don’t know……………….I don’t…………… but I choose to push. I choose to learn optimism.

It’s for this reason that I still  work; I still choose to study new things; I still crave new experiences; I still make plans for the next 2….5…..10 years. I push…………………because I have to. I don’t see another option.

Maybe if more persons believed in us, if they looked beyond the illnesses and their limitations and instead remained present to help if needed, but not always rushing to do things for us…………………maybe we won’t learn helplessness.

Friend, I encourage you and I today………….learnt optimism instead. Keep pushing!

Thankful for the cup!!!

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So another new year, another old year past.

I’ve been really pensive and reflective for the past few weeks since my last post. I’ve been really caught up in my head and in my own space. Just trying to sort all my stuff out.

I guess that’s what new year celebrations, resolutions etc. bring about. I have been trying to identify all my blessings and to name them one by one…as the song says.

I find it difficult to see the positive most days and I really want to be optimistic instead of pessimistic. I know that my thoughts, fuel my mood and my mood does impact how I handle the pain from day to day.

Don’t get me wrong, the pain is bad; my mood doesn’t change that in any way…………but it changes the other stuff. It changes how hard I try, it impacts how I interact with others and really whether I push or just wallow.

So, I’ve decided that half full or half empty is a difficult question. Most times I’m trying to figure out if there’s even anything in the cup. I’ve decided to be thankful for the cup.

Regardless of everything I am alive!

I can breathe! Even if it’s between tears.

I can walk! Regardless of how painful it is at times.

I can love! Even when I feel as though nobody loves me or can even remotely understand.

I am here!

I choose to be thankful for my cup.

This is my only promise to myself for 2018.

I will be thankful for what I have.

 

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.

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.