Sick and Tired

 

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It’s been quite a while since I’ve written anything here and even longer since I’ve been even on the site reading what my peers have written. Have I been busy? Yes………….busy being sick.

They say that you have to get really tired of being “sick and tired” and then you will do something about it…..I guess this is me doing something about it 🙂

This term/ semester at work ran for 12 weeks, this is week 11 and thus far I have been away from work at home for 7 weeks I believe. I sat and thought about that this past week. It wasn’t seven consecutive weeks, it was more a week here, 2 1/2 there another 3 here etc. Its amazing how unproductive that thought made me feel.

I feel like I have just been wasting away in bed, in pain these past weeks.

Truth is, I don’t think I can do a “normal” 9-5 anymore………….well at least in my present work environment/ doing my present job. I wear the compression hosiery as a rule and I sit with my feet up and reduce my walking and moving around but it is still too much on my body. The more fatigued I become, the more pain I am in, the more pain then the more meds I need; the more meds I need then the more time I have to take off work, Its a vicious cycle.

I need a space where I can lie down in the middle of the day for an hour and then wake up and go again. One where I am not as pressured and hurried. I need a slower pace.

Reading about and talking to many other chronic pain warriors, its not that we can’t work or be productive but the terms under which this is done require adjustments and a measure of flexibility that is at times difficult to find in mainstream workplaces.

Back in March I wrote March 2018: I’m 1 in 10….Oh the Irony! That was focused on my Endometriosis more than anything else. Since then both conditions have gotten worse. I have a blood filled cyst that is ever increasing in size on the left ovary and at least two other fluid filled ones and a host of free fluid in my pelvis. That combination is very painful especially at ovulation and cycle times.

These cysts stop me from wearing my stockings as often as necessary because the stockings compress the abdomen which in turn pushes on the cysts, which as you may imagine is problematic.

The reduced wear of compression stockings has caused me to have many more vein blow-outs than normal. Again instant pain……I also started getting veins bursting and bleeding into the tissue. So, I would awake with a pool of blood just beneath the surface of my skin and the veins around it raised. The pools take a few weeks to disappear and in themselves do cause some degree of extra pain, especially within the first few days.

I’m driving less, leaving home less, scaling back on an already almost hermit like lifestyle……this is absolutely crazy!!!!!!

So, I’m sick and tired……………….now what is the change?

What is it that I am going to do differently? Well, first I have to have surgery to deal with the cysts and adhesions. After that…….I think I may be on the path to a whole new person.

See, I decided that I cannot just lie here in bed for the rest of however long and be sick. I have to live my life. If my body won’t cooperate, I have to use my mind. I must still strive to be the very best version of me in this season!

That Lyn, will push to have “Dr.” written in front her name. She will push to have the private psychological practice up and running and self-sustaining. She will push to travel and explore more. She will fight to live. I’ve no option really……………the alternative is to remain sick and tired and do nothing…..

 

 

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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.

 

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.

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.

 

 

 

 

 

 

 

 

 

 

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

I remain thankful for each blessing amid this storm.

 

Mandatory Sensitivity Training?

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Even as I type this title I am wondering why is it that people even need sensitivity training? What happened to our ability to empathize and treat people how we would want to be treated? What happened to thinking before we speak?

So, as you know I applied to a Doctor of Psychology programme and was accepted. I had originally set my start date to July 1, 2017 but due to everything that has transpired over the past few weeks/ 2 months I started to rethink that date. I though about it from the financial standpoint, since I just had surgery and will be doing a few courses of treatment over the next months. I also thought that as excited as I am to study again I need to take care of my emotional health as well before I launch into that.

Bearing this in mind I emailed my academic advisor and queried  deferring the start date of the programme and how exactly that could be done. I have yet to decide if I am going to push back to 2018 or attempt to start later this year. 2018 seems more logical at this stage.

I also queried if the university had any measures in place for chronically ill students or those who suffered from chronic pain. I just wanted to know; I like to have all the information together so that I can make an informed decision.

Anyway, she responded giving me various contacts to check for direct answers to my queries, including the university Registrar and Finance Department. She also informed me that I had been assigned a new advisor and she would be contacting me soon.

So, this new adviser contacted me shortly thereafter and the email went like this:

“Hi Lyn, I am Jane Doe your new academic advisor. I have read the email you sent to X and I think you should cancel your enrollment with the university. You seem to have a lot going on.” ;(

I was livid. I did not read anything beyond this point and I hit reply immediately. I just could not let this go. How dare she recommend that I drop out because of all the stuff I had going on? What had me even more upset was that she and I had never spoken or had any conversation, even via email, up to this point. I basically told her I didn’t understand how the response to my queries could be cancelling enrollment and from someone who has taken no time whatsoever to know anything about me beyond my name on a file at the university. I asked her what gave her the right to make any recommendation to me furthermore that one.

I then took the phone and called the university and spoke to her directly, I let her have it. I had to inform her that she was out of place as far as I was concerned and could benefit from sensitivity training. How would she feel if she was dealing with an illness that is impacting her ability to study as she wished and she was trying to find the best course of action and someone she had never interacted with told her to quit……..well then added on after saying quit………..until things have settled down a bit.

I also informed her that there will always be something going on, there will always be something to push through. If I quit at the slightest pain or struggle I will never get anywhere.

After I had said all I needed to say, she apologized profusely. Truth be told, I didn’t care for her apology. It meant nothing to me. …………This is why we have to be careful what we say to people. Once the damage is done the words cannot be unsaid and apologies do not cover the scars.

I requested a different academic advisor…..she and I will not do.

What is it that makes chronic pain/ illness synonymous with inability in some people’s minds? Why do we have to keep fighting to prove to people that we can do, be, learn, produce etc. just as well or better than those who may not have our struggle? Our process may be different and our path may have a few more twists and turns than others but we will get there.

I wish people understood the impact that their words spoken in ignorance have on others. If I was not as strong a girl as I am I probably would have cancelled my enrollment or at the very least been upset and said nothing about it.

Its about time that people learn how to relate to others. I thought it was something that came naturally to us humans but apparently it is not. People working in positions where they interface with the public and definitely in positions where their opinion has some bearing on decisions made should have sensitivity training.If it is already a part of them, great they will just be reminded. However, if it is not- as in the case of the advisor- they will do well to learn.

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