Thankful for the cup!!!

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So another new year, another old year past.

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

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

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

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

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

Regardless of everything I am alive!

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

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

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

I am here!

I choose to be thankful for my cup.

This is my only promise to myself for 2018.

I will be thankful for what I have.

 

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To explain my illness …or not to explain ;(

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Sometimes telling people about my illnesses can be a double edged sword.

On one hand I get tired of people commenting that I don’t look ill or that I should be able to do x y or z because I look just fine to them. Many times I have to tell people that I am not well and that is why I cannot do or help or work on something or go somewhere.

Honestly, most times I say I am tired or just not able, since I look just fine. There are people who may be suffering form an acute situation who actually “look ill” while mine is chronic and I don’t. Sometimes, I am compared to them and just about everybody else.

In this situation I figure the best thing to do may be to explain what’s going on. Thing is I am not always ready for the reaction.

I don’ like pity but that’s what I get more often than not. “I’m so sorry for you” or ” that’s so sad” or ” oh my, that just makes me want to cry”.

The flip side of it is people treating my like I’m dying ….or dead……. because they know I am ill. I wrote about it in I’m not dead yet…..sheesh! at that point I was frustrated because I was constantly overlooked for the simplest things.

Those who know I am ill and how the illness impacts me sometimes make comments like ” I know you won’t be able to handle it so I didn’t bother to ask” or ” You too sick to do that anyway” or even ” that isn’t for you, you gotta be able”. These types of comments cut me to the core.

Its as if my inability to do today equates to my inability to do ever again. Its the same thing that has frustrated me for a while now; people making decisions for me. They don’t even get my opinion on the matter and most times I can’t do anything about it.

See, I don’t want to seem ungrateful for whatever help is offered but at the same time I have a brain and an opinion on matters. I would like to be heard.

Its either feeling sorry for me and throwing a pity party or treating me like I am not capable of even the smallest decision/ action.

So, what do I do? What should I do? In many cases I do what most of us with chronic and especially “invisible illnesses” do; I say nothing and go about my business. I never ask for help because I don’t want to appear weak and I have mastered the straight/ normal face even when I am in the most excruciating pain.

I live a double life. I present one image but underneath the truth is very different, yet, I don’t see any other option. I can find the middle ground between being pitied and being deemed helpless but I think its difficult for those around me. Invariably those who I let see the real me gravitate to one position or the other. There are even those who shift from one to the other and back again.

Its taxing beyond words to live my life……………..so I know and can appreciate how challenging it would be for those who love me and have to work or interact with me on some level.

Yet, this is how I feel.

On Independence

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Barbados recently celebrated 51 years of Independence. As with any other independence celebration there was some focus on history and the original independence day when it was declared that ties were broken and we were now free.

Free to make our own decisions, chart our own path, determine our own destiny.

Yet I am not so sure that the perception of independence is the reality. Looking at the country and all that we need to do to keep afloat I think independence has a different meaning.

As the celebrations were taking place all around me, I could feel my body waning. It’s amazing how those of us with chronic illness can just feel things happening. The slightest change and we know when a flare is approaching, when we need to slow down or stop all together. We just know.

I began to wonder about my life and how truly independent I am. after all I am an adult, the world says that I make my own decisions, chart my own course; after all God gave me free will. I can do what I want, when I want and how I want…right?

I guess on the level of theory that is all good. There may actually be the majority of people who believe this to be true and within the confines of of this world they live and operate as such.

What about me though? What do you do when the level of independence that every random person has is taken from you? What about being ill and your power of choice and decision is taken from you?

I can no longer decide to take the children out 2 days from now, or plan to go to the beach tomorrow or even just take a day to go shopping.

Every thing I do has to be done with illness foremost in my mind.

I was scheduled to participate in a church program two weeks ago and the day before I became ill to the point where I couldn’t walk. I was in crazy pain and had to call and inform the others that I may not be present.

I have been in the habit of always having a backup plan and making sure there is someone else who can do what I was scheduled to do when making a commitment. Its frustrating and depressing but its the wise thing to do.

Just yesterday I was lying in the doctor’s office on a morphine drip………..that was not my intention………….I planned to just pass by the office on the way to work and then jump into my day. The entire day went awry and my next 4 days have been decided for me. All my plans have been cancelled.

It just seems like every single aspect of my life is controlled by my illness. From my clothes, to my food, to my hobbies, to my plans, to ….just everything.

Last post I wrote about Counting the Cost of Illness , I didn’t look at the cost of my independence.

Sometimes, I feel as if I can’t do anything on my own anymore. I feel like people treat me that way as well. If I say I am doing or going X or Y, there’s always a series of questions or suggestions or offers to help. I’m conflicted because I know I need the help but there’s still the desire and need to prove that I can do it on my own. Its as if getting it done is some validation that the illness hasn’t taken it all from me.

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So what is independence to me? What does it mean to those of us with chronic illness? I think Independence is about being strong enough to make the best decision for myself, to take care of myself. Sometimes that decision; the decision to ask for help or to let it all go and not push to do……………..that is true independence.

I just have to move that from the level of knowledge to behaviour. I know it’s true …..I just have to start doing it.

Like everything else surrounding these illnesses…………………..it gets difficult.

 

Counting the Cost of Illness

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I’m not sure if its the time of year and that my birthday is approaching OR the fact that I’ve been ill over the past few weeks in one way or another OR the seemingly unrelated conversations I’ve had during those weeks OR just wanting to do certain things but not being able to………….just feeling a bit morose right now 😦

As happens, in the midst of my pain and misery all the possible horrible things about my life come to mind. You would think that I should be looking at the bright linings on the clouds or something; that never happens by the way. It seems that as soon as I get a bit down I just ruminate on everything else that will push me further.

Staying positive is hard work!

I guess the first aspect of me counting the cost is financial. Its one thing for me to think that I can’t afford an item/ trip/ experience because I simply can’t and another to know that things would be different- at least from my present viewpoint- if I weren’t ill.

Truth is the cost of living in Barbados is pretty high. I remember when we could easily feed our family of 5 for an entire month on $600. Only returning to purchase vegetables and fruit on a weekly basis. That’s laughable now; yes the children are older and eating more but food really shouldn’t be costing $1200 or more a month. Yet, it does.

This of course is compounded by my gluten intolerance and fructose malabsorption; which both require that I have specialty items that are more pricey than the average.

Outside the food though, I feel like being ill has just drained my resources and as soon as I start to see my way back to saving and working on debt, up something else comes. I started to add my bills for surgery alone over the past 6 years and stopped when I passed $50,000. Yes the health insurance paid some of it but surgery year after year will deplete savings and incur debt. That total does not include bloodwork, ultrasounds, x-rays, doctor’s visits and meds which are regularly scheduled parts of my routine. My general medicine on a monthly basis costs around $100. In actuality that’s $500 since I only pay 20% of the cost and the health insurance covers the 80%……for most things anyway. Still grateful for that…yes.

A family member was asking last week if I had a retirement savings plan …….my response was “right now I am trying to live, retirement is a ways off and I may never get there”. Truth is, its on my list of things to do. However, with my total health care costs, health insurance, life insurance, my other debt and trying to save for college for the children…………there’s nothing left at the moment for it. In that moment I just went……if only.

So that’s financial costs. I am forever broke…………..long and short of it all.

Outside that, the cost to my family is constantly on my mind. I went to pick up my son from club two Saturday nights ago and he asked as soon as he saw me if he could attend the “social”. I just stared at him.

All his friends were looking and waiting on my answer. Since, they were all going and I could only tell him that I had to go home. This he knew. He knew I had to get home to take my meds and that I was out longer than usual and would crash as soon as I got into the house. Yet, he asked.

My son knows that I am ill and I cannot be out at night because I am just too tired and weak and its not safe. He knows that I truly am not able and his father has to do so much more because of it. Yet, the 11 year old wanted to be able to enjoy a night with his friends. So, I had to be the one to say no again….and again.

His teacher offered to take him and bring him home after ……………I was grateful. However, on the way home his sister was very quiet in the car. I asked her what was wrong and she said she wanted to go to the social also. Well, she’s 9 and not in his club or group …………..and honestly is someone offers to help with one child I won’t ask them to do the same with the other. I looked at her and my heart hurt. Then she said ” mummy I’m not angry, I’m just sad that you are sick and I can’t go”. I told her “I’m sad too”.

That scenario has played out time and again in my home. Event after event that either I cannot afford to pay for so they can attend because I can’t risk spending out of budget and then need the funds or I can’t take them to because its at night or I am just not well enough.

Families of the chronically ill have a hard time…………..especially children. I think its teaching them many valuable lessons but not all lessons that they need to have at this stage in their lives.

That sounds quite profound ………………….doesn’t stop me from crying…………sometimes daily.

In terms of counting the cost of my illnesses, the last major thing I fear losing is my sanity.

I know illness and especially chronic illness is a major risk factor to mental illness and depression. Sometimes I do feel like I am losing it. I do feel like I cannot do it anymore………..its too difficult. Sometimes, I do feel like I am just fighting a losing battle.

Some days are hard.

Some days I cannot even articulate how difficult it is to just push through the day.

A friend told me yesterday that “love goes a long way”. I know this to be true.

I believe that its the prayers of my friends and loved ones that keep me going. I know that many people don’t believe as I do but I know that there is nothing earthly that is responsible for the fact that I am still here and still in my right mind. In my human strength alone I would not be here today. It can only be God.

So, today I am morose. reflective, down, weary, “depressed” and many other words. Thing is I’ve been here before. The one lesson I have learned through all this is “this too shall pass”.

I will have better days and worse days and good days and horrible days but I just have to hold on. Hold on to those I love…………..hold on to love. There are many of us all across the world fighting for ourselves and fighting for each other. One day it will make a difference.

Until then, I can record this all here……………………..so I can return and read it the next time I need to count the cost.

 

 

 

 

 

 

 

 

 

 

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 😦

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.