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 😦

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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.

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.

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.