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.

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The Space I’m in….

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I am slowly learning to accept and embrace my present space.

Many times someone would ask me a question and upon my response I would say “I’m just not in that space right now”. Meaning whatever it was I was not in a position to think about it or deal with it, my mind was elsewhere and I was not trying to shift it.

You know I have been talking for the past few weeks of the levels of pain and the challenges I have been having with just everyday stuff. Things like the ordinary cooking and sweeping and just trying to have a relatively tidy space.

I’ve been doing the physical back and forth to hospital, insurance company etc. in preparation for surgery. I’ve also been doing some reflection and just getting myself emotionally ready for the procedure and really going in blind as I will be.

As part of this have been turning down speaking engagements and presentations; trying to ensure that I am unencumbered and can just take the time to recover. However, over the past week I have had a few commitments to meet including a presentation to colleagues.

I have been “suffering” along with everything else with some serious brain fog. Just can’t remember anything. I prepared for the presentation as usual and although I really didn’t feel well I was off to do the presentation.

Sidebar: I have been on the other end of someone cancelling on me the last minute and I really try not to do that to others. Yes, they are aware that I have been increasingly ill recently, yes, I am sure someone else could have done the presentation even if I was still at the meeting but….I like to keep my commitments as much as humanly possible.

If I’m really honest as well I still want to be able to do something besides staying at home……….so I went to do the presentation that I had agreed to do two months ago.

I stood to do the presentation and I was trembling, not from fear, rather from the pain and fatigue.

I made it through the presentation but in my mind it was horrible. I was lost so many times and just filled in the spaces until I found my way again. I guess persons thought it was planned.

They complimented me and said it went very well. I decided to just accept what they said. I know though, it was far from reflective of my abilities and my preparation.

So what space am I in?

I’m in a space where I just have to accept that I can’t right now. Not even those things that I can usually do when in pain.

The brain fog on top of everything else is too much now. I haven’t given up……..I’m accepting that in this space some things are not possible.

I’m in a space where stress is not my friend and it makes no sense to worry about what I cannot do…..what I cannot change. I just have to work with it. It won’t last forever. This I know.

For the next week I will just continue to prepare for the surgery emotionally and psychologically.

As all else ………….this too shall pass. Until then I will embrace and accept the space……..

 

 

 

 

 

 

30 Day Chronic Illness Challenge -Day 5

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How does being Chronically Ill make you feel?

Its such a challenge to quantify all my feelings surrounding being ill. I guess growing up I never thought about having any illness for an extended period of time. You got ill, went to the doctor, took medicine and got better…………that was it.

In hindsight, this obviously wasn’t true but again I was socialized not to know what was going on around me in terms of illness. People in the family died and we never knew what the illness was they died from…………….even to this day some things are still kept secret.

So how do I feel? My first thought is Angry. Then because I know that anger really is a secondary emotion I have to dig a little deeper.

I am sad. When I think about all that my life could be and all that I have had to put aside or give up or not experience because of illness it makes me sad indeed.

I am frustrated. I feel sometimes like I am banging my head against a wall and opening doors that lead to nowhere or that promise something and then I get nothing.

I am disillusioned. I feel sometimes like there is no hope. I am constantly fighting this battle and there is no end in sight. Yet I keep fighting.

I feel like I have been short changed. Like there is more to life but I have somehow been given a bad deal.

I am scared. I fear that this is all I will know………..even bigger than my fears about myself are my fears about my daughter following this same path and having this drama to deal with throughout her life.

I feel alone. Sometimes, I feel like it is just me. Obviously, I know it isn’t; but I feel like it.

I know though that if I lived my life based on how I feel I would never achieve anything or get anywhere. So although I feel all the above on occasion, these feelings do not control my life.

So how do I feel? I feel all the above and more to a depth that I cannot truly explain. A depth that must be felt. A depth that you must look into my eyes to understand; where you must sit with me and cry to understand; where you must laugh with me to understand; where you must dance with me to understand; where you must walk in my shoes to understand.

I feel everybody has a struggle and we are all just trying to live and love. I feel happy, sad, contented, upset, miserable, peaceful, frustrated, elated…………………………………………………..I feel more than my words can say.

Give her the health info…

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It think I have a sign on my face which says ” all health information, send it my way”.

I was facilitating a series of training for lay persons in a psychological area with some colleagues and after weeks of training and testing the sessions finally came to an end. It was time for graduation.

I arrived and sat through the ceremony- on my donut- and was happy that I was able to help out and see my hard work come to fruition.

Then it was time to thank us the facilitators, we went up and received our tokens of appreciation for doing the work pro-Bono and really being committed to the exercise. Honestly, I was exhausted but happy that I went.

I waited until I arrived home to open the gift bag and surprise it was a book. No problem books are good. However, it was a health book…….not just any health book mind you. It was a book on disease and how diet and exercise can help or reverse disease. It also speaks to ways to prevent self from ever being ill.

This is where my mind started wandering and wondering. Did the other four colleagues get books on health? Nope! I asked.

What is the reason they got all this “interesting stuff” and I got a book on health? Is it because I am ill?

I try to not make attributions ( attach meanings to the behaviour of others) but its not always easy.

What is it about people who look at my life and think that they know the answer? What makes them think that if I just try this or that …..things will be better….I will be healed? What makes people just need to comment on procedures and therapies etc….as though I have not been searching and working on these illnesses for the past how many ever years.

Part of me wants to think they are well meaning and I should not be offended but its hard….really difficult. It comes across like I don’t know and they do…..I just don’t know how to take it.

I try to see the best in them though……

Too young……now what?!

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“You know all that will happen here is medication right?”

This was the new female doctor speaking to me this time. Sigh!!

On Tuesday I went back to the hospital for a follow up visit. Truth be told I was not in a good place to begin with. I was in pain…………not totally horrible but enough that I couldn’t ignore. Enough to require meds to help me through the day. However I hadn’t taken the full amount because I had to drive and it was safer not to.

After waiting about an hour I saw a female doctor who appeared too busy to deal with me but I guess in her mind she was doing an excellent job.

Sidebar……….lets go back for a moment.

So I have Pelvic Congestion Syndrome and had/ have……….jury still out……Endometriosis. Both conditions for me are aggravated/ exaggerated/ negatively impacted by estrogen in my body.

For years I have avoided all foods, vitamins, medicines etc that contain estrogen or phytoestrogen in any preparation. The endometriosis feeds on estrogen, it grows, spreads etc with increased levels of estrogen.

The PCS also responds to the levels of estrogen in my body. When the levels rise or fall I am in trouble. Blood rushes into my pelvis and into the veins which stretch and engage the faulty valves and leads to the pooling which leads to the heaviness and increased pain.

So the worse times I have are cyclical……..either way. My ovaries if removed would take care of this. The endo would be starved and the major PCS issues would also be dealt with. Easier conceptualized than actually possible.

Back to the doctor………….

“Removing the ovaries is instant menopause………..you are only 38……..that’s not an option. So you know all that will happen here is medication right?”

Research has shown that women who have their ovaries removed before 40 have greater risk or heart disease and osteoporosis. Many of them use hormone replacement which would not be an option for me…….estrogen…… but that doesn’t mean that is it does it?

How does telling me that I am too young help the situation? Reality is I am barely functioning. My life is impacted significantly by these issues on a daily basis. That can’t be the end of the story.

I left the hospital in a daze, still in pain………..feeling lost and dejected. I just wanted to get home………….get to my bed. Sometimes I feel like I am the only one fighting this battle and nobody is listening to me………….least of all the doctors. I just felt lost.

New Year…New Challenges…New Hope!

d169a855be7d306799df69b3b3956dfeI’ve been thinking for a while about what it means to be at the start of a new year. What are my expectations? What will happen this year? Am I scared? Am I excited? Am I apprehensive?

I think I am all those things and more.

I don’t believe that all will be smooth sailing and this year will be perfect. I’ve been on this earth too long to believe that.

Here’s what I have found to be true. Just as you learn to to count  which prepares you to add, then subtract, then multiply, then divide, so it is with life. Everything that I go through is preparing me for a bigger test. That’s the reality.

So years ago when I thought that my health was at its worse and things could not deteriorate they did. The skills, knowledge and experience gained were of great benefit to me when faced with the next set of challenges.

What I went through in 2016 was rough, no doubt; but I am sure that I was being prepared for more.

So yes I am happy to be alive and to see another year. I am grateful for the lessons I have learned. I am a stronger person now than I was 12 months ago. I am more educated and informed than I was a year ago……..but I am not delusional.

I know that 2017 will have its moments that test my resolve. The situations that test my faith beyond anything I can imagine. I know there will be tears and loss. I know many days I will weep. I also know that once I don’t give up and let go I will get through each situation.

In church I hear all the time “we have nothing to fear for the future except we forget the way that God has led us in the past” Ellen. G. White. This is true. I know that my existence and my ability to move from day to day even in the midst of the deepest darkness is because of God’s Grace.

I walk into 2017 knowing there’s surgery ahead; knowing there’s pain ahead; knowing I will watch those I love cry and be sad. Although I know this, I also know that I will get through it.

I know that God and I together will get through it. So I look to this year with cautious optimism. I have hope and hope is a beautiful thing. I will travel through this year continuing to believe that life will improve. My health will improve. Things will get better.

I will not give up. This disease/ these diseases will not define me. I refuse to let them determine my every move. 2017 will be a good year!

I’m fine!?!?

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You know I say I’m fine but I’m really not but there’s nothing else I can really say.

So we were on vacation in beautiful Dominica, known as the Nature Isle of the Caribbean. So many natural wonders to see and places to explore. My family was so excited and ready and rearing to go. Me I just wanted to sleep, really.

We set off to explore the island with a friend who was acting as our tour guide. We went up “hot Soufriere” to the Fresh Water Lake and then made our way to Trafalgar Falls. I was walking a pace behind them as they rushed ahead to see and just trying to pace myself. Then he asked “are you OK?”

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Trafalgar Falls (One of the falls there are two side by side)
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View from “Hot” Soufriere

“Yes, I’m fine.” I replied and continued walking.

We saw the falls, the children and hubby bathed in the pool at the bottom and we moved on driving past location after location as we headed to the southernmost point on the island “Scott’s Head”. This is where the Atlantic Ocean and Caribbean Sea meet and it’s covered with the smoothest multi-coloured stones.

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View from Scott’s Head looking towards Caribbean Sea

Again the question is asked “are you OK?” By now its hours and a few questions in between to which I answered always “yes, I’m fine”. This time I asked “why do you keep asking me if I am OK?”

The response “you are so quiet, moving so slow, don’t really seem to be enjoying yourself” I paused for a beat. Really what could I say to that comment? To say I’m not well would encourage further conversation that I was not willing to have. To say I am fine would obviously not suffice since I was saying that all along and it was still being asked. What could I possibly say?

I responded, “I am not feeling very well, I’m very tired”.

This question is a problem to me though. I don’t want to lie but I can’t exactly explain anything. Even to those around me on a daily basis it’s difficult to understand. Especially when I look fine, most days besides the occasional slower than usual movements I walk just fine, look just fine, go about doing my work just fine. I don’t look ill.

Most times when I am in pain people will notice me sweating a lot and maybe breathing deliberately but most persons just assume I am hot. I just need to cool down a bit.

I am truly at a loss with what to say to persons when they ask. Many of them are not random people who are just being inquisitive. They are people who have spent time with me or around me and had the opportunity to observe and interact with me. It’s these ones that I am conflicted in terms of answering.

I don’t believe that my business is any other person’s business but at the same time I cannot lie.

I tell my interns that clients can tell when we are being authentic and genuine and will be the same if we are, so we are always to strive for honesty. I am not known as a fake person or someone who is not genuine but what happens when you hear the truth and it’s too much for you?

Most people can’t handle my truth.

Even in this blog. I know many persons have read it because I have invited them to. The majority act as though they didn’t. It’s too much for them to handle, too intense, then again what can they possibly say………..or at least maybe this is what they are thinking.

This is my truth.

So sometimes I will tell you I am fine. How you interpret that is really up to you.