Processing Morphine

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Did I mention I had  morphine IV? I think so, I believe I mentioned it in my last post Stages of Chronic Illness.

This was almost 3 weeks ago now. I was set to return to work on Sept 4 and back to the doctor Sept 11.

Firstly work on Sept 4 was different to work on Sept 11. School staff return to work one week earlier than the students. So the students only joined us on Sept 11. My gauging pain/ progress really starts from Sept 11 (but that’s another post).

Anyway, at the doctor’s visit we discussed my using extended release morphine. We had this discussion before but I had always said no, I was not doing that.

You see in my mind morphine said I had reached a stage that I was not willing to accept as yet. It said that I was “really” ill. Yes I know and I have known I am ill for years now but here in Barbados morphine is related to being terminal or at the very least “forever ill”. When you reach the point of having to use morphine on a daily basis you know that there is no going back. You will never be “well” again.

So all this was going through my mind each time the discussion came up. I knew I would have to get the IV ever so often but taking the tablets at home meant something different.

My cognitive dissonance was high. I was in a battle in my mind over whether I should accept the prescription and try the drug or decide not to do it.

My other concern was becoming dependent on it. That was the most scary thought 😦 I did not want to even process that but I had to.

So there I was in the office, wondering if I was fooling myself by holding out hope that my situation could get better. Was I fooling myself? Am I fooling myself? Am I in denial? Does my refusal to just accept that my life will always be like this say that I do not accept that I am ill? Does the refusal say I am not being realistic? All those questions were going through my mind and on some days still go through my mind.

Chronic illness has a psychology all its own. As I wrote in the last post Stages of Chronic Illness, this process is anything but linear. That is why I go forward and backward; why I think I have made decisions and then go over them again.

As a Psychologist, I sometimes beat myself up because I do understand all this. I get it! I can help others with it! I just can’t seem to help myself 😦

So, I finally said “Ok I will try it” to the doctor and left with the prescription in my hands. Off to the pharmacy I went with trembling hands, an unsettled mind and dissonance enough for me and a few others combined.

Morphine is such a controlled substance here that it is not stocked by most pharmacies. I had previously been able to get the fast acting morphine solution from the pharmacy without issue but they did not stock the extended release tablets. They had to order the tablets for me and that would take about 24 hrs. That gave me some more time to ruminate; and ruminate I did. I spent the time going over all the information I had previously researched and just making myself more nervous about taking the meds. I was a hot mess, to say the least.

I brought the morphine tablets home and after much prayer, took the first one. I really didn’t know what to expect. What I got was a level of pain relief that I had forgotten was possible.

I have been taking them now for almost three weeks, daily. My prescription is not very high 90mg a day. I have dropped it to 60mg per day and I am still able to function at a higher level  than before.

Don’t get me wrong, I still have pain and issues, especially at work, but I will write about that next time. However, I am doing better in terms of managing the pain.

My dissonance remains, I am still not comfortable with it but I can see the benefits.

In my perfect scenario, where I could not eliminate the pain, I would not be taking morphine; but hey, life is far from perfect.

I have Pelvic Congestion Syndrome and Endometriosis. That’s my truth. I am not in denial, I am not fooling myself but I am learning to Test and Adjust.

For now this is the best I can do and it will have to be enough.

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Stages of Chronic Illness

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When I first decided to study psychology I was so excited to learn all about….well everything. One thing that always fascinated me was stage theories. As I grew and developed I learnt that the stages were never what I originally thought them to be………….I assumed, like most others that they were linear. Meaning, you move from one on to the next and so forth, so more like steps instead of stages.

Over the years, I have learnt that there really is nothing linear about them and although they are presented in a step by step manner, that is not necessarily the order in which they manifest. I also came to understand that passing through one stage does not equate to mastering it, neither does it mean you do not revisit that stage.

The photo above speak to the stages of grief developed by Eizabeth Kubler-Ross and David Kessler. The fact that the ribbon is twirled represents the fact that its not a straight line. Sometimes it can be like a never ending spiral. This image is more apt in my opinion.

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So what are the stages I have identified in terms of chronic illness?

Shock and Denial

Truth is life was pretty good, going along without a care in the world, well no major ones anyway; then illness happened. I was shocked and many times I said ” this can’t be happening”. Whenever something new pops up I find myself surprised. Someone actually said to me ” you should be accustomed by now, why you acting surprised? This stuff always happening to you.”

I’ve learnt there is a progressive nature to chronic illness and issues faced when ill. So if I use my ever changing GI and diet issues as an example: every time I have a reaction to a different food that once before I was able to eat I do go into shock and there is an element of denial.

In terms of the Pelvic Congestion Syndrome and the Endometriosis, the same thing happens. Even when I know whatever has happened is possible for someone with these conditions, I am still shocked.

Anger

After being shocked I automatically get angry. In my mind I have had enough challenges, enough surgeries and procedures and enough medications to last a lifetime. I find myself more and more frustrated.

Sometimes I am angry at God and let Him have it and then feel guilty about being ungrateful when I should just be grateful for all the blessings I do have. Other times I am angry at myself; wondering if I had not done so and so or if I had approached a situation differently, if the outcome would have been the same.

I get angry when I think about all the things I can no longer do; sometimes I just look around the house and I get angry because I know if I were not ill the house would be cleaner and more organized or more would have been done with it in terms of being finished……if my finances weren’t focused mainly in healthcare.

I look at what needs my children have and try to figure out how we are going to balance their needs with the limited finances and I am angry………..because if I wasn’t ill …..things won’t be so difficult………….or so I think anyway.

I get miserable and irritable and piggish. I snap at my husband and children and/ or shut them out completely…………well try to anyway. Then I feel guilty because its not their fault that all this is happening to me and then I am embarrassed at my behaviour and then I am angry again.

Depression

Next I become overwhelmed. This doesn’t take much time to achieve really. I just have to start thinking about what my life was/ could be vs what it is and there it is.

I find the darkest moments are when I am in pain. The type of pain that forces me to codeine and tramadol together or into the doctor’s office for IV meds. This week it got to that point where I spent 2 hours nursing a morphine IV.

Its almost as if in those moments all the activities, dreams, desires etc. that I have given up come rushing back to my mind and push me further down into darkness. Its an all out fight to keep positive in that moment. I do the best I can….listen to music, sing, quote Bible promises, read good books, do in bed activities with the children, watch movies………..I try. ………..I continue to try.

I have found that its at this point that my stages stop being linear. From here I go back to denial or anger; depending on the particular issue at hand.

This week I went back to anger because I just had surgery in May and spent thousands of dollars that I didn’t have and 3 months later I am back on IV morphine.

Dialogue and Bargaining

This stage is where I believe I spend most of my time. I search for answers and talk to others about what is happening. Even though I was angry about the surgery not being the type of success I wanted I still sought to understand why that happened.

You see, from a rational, objective standpoint I do understand. I understand the diseases and my body and I can see why I am presently in the space that I am in. This does nothing to help in the midst of the flare though. This is all left brain stuff and when in pain its my right brain that takes over. Its all emotions………..not facts.

Thankfully, I am trained to help people in the exact situation in which I find myself. So I know what to do to engage the left brain and calm down. It does work, I am calm………just I would like to be calm and pain free at the same time 🙂

Acceptance

For me relief comes in relinquishing control of the very thing I know I cannot control. When I accept my life for what it is I can progress. I cannot control the illnesses, all I can do is adjust and make the most of what remains.

Ironically, this week I had an epiphany concerning acceptance. As much as I had said before that I accept my reality; deep down I was still in a form of denial. This is tricky because there is a line between acceptance and giving up that sometimes gets blurred. They are not the same things.

So I accept that I have Endometriosis and Pelvic Congestion Syndrome. I have Fructose Malabsorption and GI issues related to food sensitivities and intolerance. I do what I can to handle each situation; be it tweaking the diet; changing my clothing/ shoes; having minimal social life outside home; reducing my driving and the times of the day in which I drive; taking more breaks; wearing compression hosiery etc. etc.

This acceptance helps me to move forward. The challenge is creating a new life instead of constantly mourning the old one. I’m still working on this 😉

Truth is, just as we experience grief and loss over a person, job, pet, friendship …..that is no longer a part of our lives; we experience the same when examining the impact that chronic illness has had on our lives. Many times we don’t view it this way, therefore we don’t apply the coping strategies and techniques that we would in that situation.

Chronic illness steals life as we know it. There is a death, there is a loss………….there is no going back to the life we knew. Just as when a loved one dies we need to create a new normal in order to go on; so it is with chronic illness.

I mourn the life I had, yet I am grateful to still have life. As I seek to create the new normal/ the new life………..the stages are ever before me. I would love to be always in the space of acceptance and moving on to/ having a meaningful life but life isn’t linear. I will be shocked and in denial from time to time and I will get angry. The nature of chronic illness may cause moments of depression and I will bargain and seek dialogue.

As unwelcome as this process is…………..it is the process. I must go through it to make my new life more meaningful and enjoyable. One day I will look back, being grateful for the journey and the process without being stuck in what was.

I focus on what is and for that I am grateful.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Test and Adjust

 

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I had an intern once who constantly said “test and adjust”; when she said it I took it to mean whenever there is something new/ unexpected/ unwelcomed in our lives we test it so that we can learn and then we adjust to suit. It makes no sense complaining/ worrying/ fighting the change……………………learn and adjust…………change is constant.

I don’t know……… I’m tired of adjusting.

It seems like I am constantly adjusting, even before I can adequately adjust to one change along comes another and I am scrambling to deal with something else. The weeks since my last post have been one adjustment after another.

My GI issues have settled somewhat because I have made some additional diet changes. We believe that I do not have IBS, rather fructose malabsorption. I don’t know why and honestly I can’t be bothered about it ……well the reason behind it………..right now. I can no longer absorb fructose. This brings symptoms similar to IBS.  I have basically been testing and adjusting my diet. I cut out the recommended high fructose foods and reintroduced them alone one by one to gauge the effects on my body. I have been able to identify those foods that trigger my symptoms. I’m still working on this.

My allergies and sensitivities have also been heightened. Before, I could still have a little gluten every once in a while. I shouldn’t but I could and not have any reaction. Now I cannot do that. I must have and maintain the completely gluten free diet. Even grains that I could previously have, I can no longer eat. I developed a reaction to corn when I could previously use it without issue. Actually I think its the type of corn. I have reactions to taco shells and cereal that is imported but if I use corn meal or corn flour made here I am ok thus far.

My energy levels have improved but are still low compared to where I need them to be. I find it difficult to go an entire day without getting exhausted. This has been really put to the test this week. I am having an annual camp I host with a colleague. Its constant going, standing, talking and work from 8:30 – around 3:30 each day. Its too much for me, makes me worry about returning to work in September………work is quite similar. Today I just had to stop and put my feet up.

On the topic of feet……………I started wearing the compression stockings. They help tremendously. They take a bit of getting used to but the support is amazing. The only thing is that Barbados is hot…………and its summer 😦 Its an exercise in perseverance to deal with them and the heat. Still I have no choice. If I got so tired and my legs hurt so much with them on I definitely would not have been able to do half as much without them.

I’m also adjusting to losing/ rather deciding that some friendships I have are at an end. One in particular, I have been friends with the individual for over 15 year. I explained to the individual the challenges I was having with Pelvic Congestion and Endometriosis and how it was impacting my life. There was absolutely no response, no empathy or sympathy………….absolutely nothing. This person then went on to discount my discomfort in their presence, acted as if I they had no knowledge of my illness. As much as I accept that the friendship is over, I have yet to speak to the person and it still hurts.

So much more going on in my life and all around. Testing and adjusting is difficult………but its necessary…………I just wish it easier:(

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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!

 

Chronic Illness….. Like Swimming? My dream revelation.

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I had the most interesting dream recently.

For years I have been sleeping and planning my next day, or up all night and planning the next day from painsomnia. When I dream though, I have always had the ability to talk to myself about the dream, stop the dream and start another….pretty different stuff from what people tell me they experience.

I guess I would make a good candidate for dream analysis 🙂

Anyhow, so I was dreaming that I was at the beach. I haven’t been to the beach in a few weeks, I live on an island after all; I mean people come here for the beaches! Maybe its just because its summer that I’m thinking beach.

As the dream progressed and I was in the water, I said to myself (this is said to myself. like in my thoughts about what was happening in the dream) Lyn, how long can you really swim before you are floundering and trying to thread water. Then it hit me…….this is just like dealing with illness.

Truth be told I’m not the best swimmer 😦 when I;m on I’m on but when I’m off its a mess.

Swimming

My preferred style is freestyle, I am relatively good at it, not to win a race or anything but I get it done well. When everything is aligned and my body is slicing through the water it is beautiful.

When I am feeling well and able to do what I want, when I want, that is beautiful too.

Just like when I’m swimming, this doesn’t last too long. Ironically, for both situations its the pain that cuts it short. In swimming, the abdominal engagement needed to be in good form, quickly becomes painful.  In handling illness the pain stops me in my tracks. Just like swimming I end up….

Floundering

In the water as my form goes, my strokes become short or not as streamlined. The kicks start to be uncoordinated and I really don’t go as far as I can. It is clear to all looking on that I am struggling or becoming tired.

In handling the illness, my struggle is mental before I even acknowledge that I am floundering physically. Its hard to concentrate, brain fog is intense and then the physical steps in. I am exhausted and can go from there to being in bed just because walking or moving is too painful.

Treading Water

I’m really not good at this part.

I see my husband and children treading water for over an hour sometimes….or it seems that way to me……I can manage a few minutes. I think its a combination of physical skill and mental energy.

By this point I am usually tired from what has happened before and I find no relaxation in treading although I believe I should and it is to serve as a time to regroup and rejuvenate.

With illness its the same. I believe I am frustrated by this time and feel that I should be doing better or handling the situation better. Although, I know its OK to rest. Its necessary to rest.

The pain colors the experience in both situations.

Floating

They say this is the fall back position when in the water and exhausted. Float on your back. Me, I say get out of the water……..that’s not always possible. I can’t get rid of the illness, gotta find a way to deal.

The beauty of floating is that the water supports your weight.. It reminds me that there is support, in places I know and in some that I haven’t thought of.

When in the water on my back, I look up and see the sky and clouds and all the beauty. It reminds me that there is a God who is there for me, holding me up when I can’t do it on my own .

 

So, yes I will actually go to the beach and do some swimming. Just like that is a process, dealing with my illnesses is a process as well. Some days I will be good and others not so good. Then I may be barely making it and keeping my head above water.

I know though, that through it all there is support. For this I am grateful.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Pelvic Congestion Syndrome Research

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So I’ve been reading a lot of journal articles recently. I have stated before that one of the reasons I started this blog was to discover what other women were experiencing with PCS. I also want to keep track of what the medical fraternity is saying about it.

Last blog I wrote how having the surgery Update….Helped one Condition….Hurt the other  (

I spoke there about the challenges with my veins that I have been having since the op. The pics above explain what happens wen there is a diagnosis of Chronic Venous Insufficiency. Pelvic Congestion Syndrome is also known as Pelvic Venous Insufficiency/ Pelvic Venous Congestion. I guess if they can’t settle on a name that says something about how far the research has gotten 😦

In seeking to learn about the compression stockings and the issues others here face I had a conversation with a relative, this was after being in the same location and having to get some meds from her because my veins were popping again and the pain was starting to increase.

What was most interesting to hear, after the information about the stockings, was that years ago an OBGYN had said to her that she will probably have to wear stockings. That was the extent of the conversation. The doctor at the time gave no further information, no explanations; basically offered nothing. She believes that if she had been informed back then the situation would not be as dire now. Her diagnosis is Chronic Venous Insufficiency. Her issues are localized within her legs; while mine are pelvic  and only spill over into legs hmmmmmmmm.

This makes me wonder though, actually it makes me angry. Some doctors are just not worth the title.

My research has revealed a few things. Women who have or have had the following are more likely to develop Pelvic Congestion Syndrome. Of course there are always the exceptions. Note also that the number of studies done are so few that this information cannot be considered conclusive from a research methodology standpoint.

  • More than one child: they say this has to do with the veins being stretched by the weight of the baby through multiple pregnancies. Yes I know some women have never been pregnant and still have the condition. There also seems to be a genetic link in some cases. Maybe mothers just thought their issues were normal and never sought to investigate.
  • IUD: This has to do with the impact having a foreign object in the body for the extended period of time has and the changes that take place in the body as a result. I don’t fully understand from a scientific standpoint – really was never good at pure science- but I am told it leads to blockages and blood not being able to flow freely.
  • Tubal Ligation: Cutting/burning/ tying the Fallopian tubes clearly leads to a blockage and departure from the natural processes. This also leads to blood being rerouted and affects the flow- well at least in the most natural way.
  • Hysterectomy: Removal of the uterus and other organs- depending on the type of hysterectomy- again causes several blockages. All the arteries and veins that fed the uterus need to be blocked off because the organ is no longer present. Therefore, with hormonal changes, the blood still rushes into the pelvis but one major outlet – menstruation- is gone. Hence there is increased congestion in an already tiny space.
  • Anorgasmia: This is an inability to reach orgasm or coming to the point of orgasm without achieving it. There are women who for whatever reason will engage in sexual activity and intercourse but choose to avoid the orgasm e.g could be fear of  the level of pain. I think I wrote about this in Sex………Love to Hate to Love It!!! There are also others who have never orgasmed or were previously able to orgasm but no longer can as a result of illness/ emotional issues.

Whatever the reason, by choice or involuntary,  this also leads to increased pressure           within the veins and pelvis and no outlet for it.

The studies that I read indicated all of the above either individually or jointly as risk factors to developing Pelvic Congestion Syndrome. I have had/ done/ used the first 4 and intentionally on occasion done the last one. Seems my situation is the perfect PCS storm 😉

Looking back, an IUD seemed like a good contraceptive method after I had my first child; after the second child a Tubal Ligation was a good decision since my family was complete and I definitely did not want any more children and the hysterectomy was the best treatment decision for the issues I was facing.

If I knew then what I know now, would I make the same decisions? Absolutely not!

That’s the thing about hindsight- its perfect vision 😦  I will not be angry or regretful about those decisions though. I always believe that once we did the best we could at the time with the information at hand, we should have no regrets.  Or at the very least, we should not live in the regret; acknowledge it and move on.

So, that I have done. I move on. I cannot reverse time and make different decisions. However, my knowledge now can help someone else.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Update….Helped one Condition….Hurt the other :(

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Life has been really interesting since my last post. I’ve been somewhat stressed to the point where I wasn’t letting anyone in. I felt as if I was losing grasp on everything and chose to take some time to regroup.

In the midst of this time I had the most unnerving experience. The pic above is my left foot. As you can see the veins are all popping. Truth be told this is minimal to what actually took place.

I could see all my veins right up my calves, up my legs and across my pelvis. When I saw this happening I knew that those inside my pelvis must be huge! That’s not all, I was in the most incredible pain I have had since having surgery.

Apparently, dealing with the Endometriosis has caused me some issues with the Pelvic Congestion Syndrome ;(

The adhesions which has everything in my pelvis stuck together and were causing me intense pain were also holding the veins in my pelvis (like bands) and constricting them/ restricting the amount of blood that could flow into them. Removing the adhesions has helped to reduce the sharp everyday pain that I was experiencing but has also freed the veins and they now exist without constriction.

Therefore, the veins can now have the maximum amount of blood pooled inside- thanks to the faulty valves…….

Doc says I have to return to the Daflon- meds for  venous conditions; in order to work on the veins all together and reduce the varicosities.  I most likely will have to wear prescription grade compression stockings everyday to work as well. Doc says the maternity ones that will come right up to just below my breasts 😦

So it truly is like a Chronic Illness See-Saw…. 1 Step Forward….2 Steps Back. I had an intervention to help in one area but because that area was the focus and not all two, that intervention has created an issue with the second area. We worked on the Endometriosis and now the Pelvic Congestion Syndrome is in full swing.

What now? More research- I’ve been doing quite a bit and will share in my next post; more treatment; more medication; more trial and error?

I guess this is what happens when we treat one when there are two to be considered.

Thankfully, my time of reflection has placed me in a pretty good frame of mind. I’m in a good space right now. Hopefully, it will last.

Truth is, it could be worse……….so much worse.

I remain thankful for each blessing amid this storm.