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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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Post – Surgery Update

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

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

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

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

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

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

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

The Results??

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

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

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

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

Progress?????

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

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

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

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

Embrace the flat/ or nearly flat…

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Yesterday I looked at Embrace the stretch… and that was mainly about the adjustment I had to make in the type of clothing I wore. I promised to look at the changes I made in my shoes.

Let me say that I love shoes. I guess in that way I am a typical woman. I think that any day can be fixed with a sexy pair of shoes…..I’m serious here. There were many days in the past where I was in a bad mood and I just put on a popping pair of shoes and my entire attitude changed. There is just something about how I feel in the shoe. Anyway, enough of that.

I am 5ft 10inches tall. So I really didn’t need to wear heels to begin with. I just loved them from the time I started wearing them around age 12. I would wear heels between 2 and 4 1/2 inches high. To work, church and to any occasion that was not completely casual.

I realized whenever I had a period- before the hysterectomy, or whenever I was in pain- after the hysterectomy, I couldn’t tolerate the heels. I always wore flats of shoes with 1 1/2 inch heels of lower. There was just something about the angle of the heel that made the pelvic pain worse. I think it increased the pressure somehow. I’m not sure.

As things got worse I found myself less and less able to wear the heels for any period of time. I would wear to work my heels and after about 1/2 hour take them off. The same would happen at church. I found that the pain was just too much to bear.

It came to the point about a year ago, around the same time I was adjusting my wardrobe, that I had to stop wearing them all together. Standing alone was painful if I had to do it for more that 20 minutes furthermore in heels.

I was depressed over the shoe situation. Really depressed. One day I took all my heels and looked them over. Those that I could give away I did and the others I threw out. There were numerous pairs of shoes. It was a sad day.

Since then I have built up a store of flats. Nice flats. I have a few shoes that are 1 1/2 inch high but most are flat. Even those with the small heel I can’t tolerate when in pain.

So, another lesson learned. Test and adjust a friend of mine always says.

I have come to accepting that I have to do what is best for me. I have come to accepting that flats look nice also. I have come to deciding that pain will try to define me and bring me down ………………but I won’t let it.

I am stronger and more flexible than I thought.

So what, my clothes and shoes are different………….but you know what? I am still here and that to me is victory!

30 Day Chronic Illness Challenge- Day 16

What is your favorite inspirational quote?

There are so many quotes that I absolutely love that I had difficulty choosing just one. So I chose three that surround the same theme but speak volumes to me:

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This first one reminds me that there is value in my tears. Many times I have wanted to cry and either out of fear of embarrassment or just thinking it was not an appropriate time I have not. This quote tells me that my tears are a language all their own and its ok to cry.

I have been able to use it to help others and myself in some really tough times. We can’t always enunciate everything but tears speak for us.

 

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This next one reminds me that the dawn is coming. Realistically just before dawn it is extremely dark, then the sun peeps out and all the darkness quickly dissipates. In my struggle I sometimes need to be reminded of this. Its dark now and I cannot see my way but dawn is just around the corner. Hold on!

 

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This final one is one of my favorite Bible verses. Weeping may endure for a night but joy comes in the morning. This is a simple verse but such deep meaning.

Sometimes the night seems to last forever. Sometimes the pain and challenges I face seem never ending. I feel as though I cannot get a break, not even a moment to catch my breath. I am reminded that although I may weep there is joy around the corner and the metaphor of the night is a strong one.We all know that nighttime always gives way to daylight.

Therefore, my weeping will come to an end, there is no doubt and there will be joy in the morning. This too is sure.

What quote/ saying has been an inspiration to you?

30 Day Chronic Illness Challenge- Day 15

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What would you say to people newly diagnosed with this illness?

Dear friend, if I could have spared you this aspect of life I would have because I have experienced it and it is not my wish for anyone. However, that is not within my control; neither is it in yours.

The first thing I will say to you is never be ashamed or hide the truth about your illness from anyone. The way you treat your illness is the way others will treat it and you. If you are ashamed and timid then others will treat you as if there is something to be ashamed about.

Secondly, do not let the illness define you. There is so much more to you than this illness. It is not who you are it is an illness that you happen to have. Do not lower your goals and expectations of yourself based on being ill. Your path may be a bit more complicated than some but it does not mean that you cannot achieve all you have ever dreamed and more.

Thirdly, become your own expert, research the illness and journal your experiences. It may seem tedious at first but that information will be important when it comes to your care. The symptoms and effects of this illness are so wide and varied that you need to understand how it affects you specifically and convey that to your healthcare team. They do not know all. You have valuable contributions to make in your care.

Next, advocate for yourself. This is most important when you have a chronic illness and one that most times leaves you looking just fine to those looking on. You need to be prepared to fight some battles on your own behalf. Expect it…………its inevitable.

Fifthly, talk to other women. Learn from others who have been through the same or similar. Acknowledge that you are not alone…………..at times it may seem that way but you are not. There is a large community out there, get connected. The support is vital, especially in the difficult moments.

Next, accept there will be good days and bad days. This is the nature of life with this illness. There may be treatments and surgery, time off work and pain. There will also be great days. Days with family and friends and lots of happiness. Enjoy these days most so that they can carry you through the not so good ones.2d85fe82508def73712e4307699f6a53

Lastly, never give up or in, keep fighting and keep on moving forward. The battle may seem long and difficult at times but you can do it. This will test you in ways that you may never have imagined but you are strong………….stronger than you think. You can do it.

 

You can live with this illness and still have the best life ever.