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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Learned Helplessness & Illness

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It’s amazing how long this post took me to write!

So much has been going on in my neck of the woods. So much to update on.

Well, you know Psychology is my jam…………….its my heart…………I love it! Sometimes though, it keeps me in my head………a lot!

In the 1970s, Martin Seligman came up with the term “learned helplessness” as a result of some experiments he did. Further study aligned it with the psychological concept of attributions.

Basically, what Seligman said is this:  we have a bad experience, realize we can’t control it and from then on become resigned to the outcome. We don’t try to do anything to change it. So the next time we are faced with a challenge we don’t try; just decide that the outcome will be negative and give up…………we’re resigned.

Attribution theory is about assigning feelings, beliefs,intentions and meaning to behaviour; especially that of others. In this case the meaning assigned is about us as individuals; we determine that we are powerless and that the outcome will be negative. Therefore, we do not try.

What has this to do with my illnesses?

Well, learned helplessness is linked to anxiety and depression and we all know that chronic illness is a major risk factor to both these conditions.

Thing is though, I am beginning to feel like people expect me to be helpless, rather they expect me to act helpless.

I am ill yes………that could be considered a negative experience and in many ways I have no control over it. It’s a recurring decimal in my world. I don’t think it means I should be resigned to it. Yet, others seem to think that.

I go to lift a bottle or drag a table or just try to do something……….anything and I get a look or a question like “why are you doing that” or “you know you shouldn’t do x, y, z”. It is a catch 22 because yes I know……..the potential exists that the activity may cause pain……….but I still have to try; what if they weren’t there? What would I do then?

You know the picture of the elephant above? It’s tied with a tiny rope to a small peg. Yet, the big, strong  elephant just stands there. The elephant has been trained to be helpless; to act helpless………….and it works!

I refuse to be like that elephant!

So many days and nights I wonder if this is it for me. I wonder if things will continue as they are or if they will get worse. I don’t know……………….I don’t…………… but I choose to push. I choose to learn optimism.

It’s for this reason that I still  work; I still choose to study new things; I still crave new experiences; I still make plans for the next 2….5…..10 years. I push…………………because I have to. I don’t see another option.

Maybe if more persons believed in us, if they looked beyond the illnesses and their limitations and instead remained present to help if needed, but not always rushing to do things for us…………………maybe we won’t learn helplessness.

Friend, I encourage you and I today………….learnt optimism instead. Keep pushing!

Chronic Illness See-Saw…. 1 Step Forward….2 Steps Back

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Chronic Illness can be like a see saw. Just like the one in the photo above. Sometimes the thing that makes the difference between whether there is progression or regression can seem so small but yet so big at the same time.

Years ago in Barbados there was a Soca song that was written to describe the government………..I think it was…………most songs written are about some social issue.

Anyway, today as I was thinking about the effects of being ill, besides the image of the see-saw with the slightest thing tipping the balance, that song came back to my mind. Its called “Breakdown” by Serenader.

The chorus of the song goes:

One step forward

And two steps backward

And tremble

Hold ya belly and tremble

 

How apt.

I feel like I take one step forward and then two back. Just when I think I am improving something happens that pushes me back again. This thing that occurs is not always physical, it could be a simple as a comment made by someone.

I misplaced an item, truth be told I have no idea where it is. It is not something that I would not place in a secure location……this just adds to the frustration.

I asked the one other person who could possibly have it to check through her things just in case. Her response was quick and sharp………….you are supposed to have that not me! I just left off what came before that statement.

My immediate thought was ” I really have to explain to this woman again………..sigh!”

When you don’t experience brain fog it can be the most difficult thing to understand. When you do, it can be the most difficult thing to explain.

I searched and searched every possible place that it can be in my home and I have not found it. All the while I am thinking to myself ” gosh girl, you really losing it”. The “it” there being my mind and not the item.

I really felt horrible………….I really feel horrible but there is nothing I can do about it now.

You may ask if something so slight can have such a devastating impact? The answer is definitely yes.

Its such a delicate dance from day to day to be in good spirits even amidst the physical challenges. Sometimes staying in that space is exhausting all by itself. Little things can seem like failures or statements of inadequacy and inability. Little things can make you question whether you should even try to do or to be sometimes. The slightest thing can lead to regression.

So when you take one step forward, then two back…………what’s left to do? Hold ya belly and tremble? Or just breakdown?

I don’t have the answer. It can be any or all. However, for me…I just keep on stepping and trying to maintain this delicate balance.

30 Day Chronic Illness Challenge- Day 22

0b25d42f697a41f0ad8f44f6e312d328How do you think you have been treated by the medical system? Explain.

My first thought when looking at this question was “oh boy…”

For years I went from doctor to doctor who basically told me that my pain was all in my head. I was attention seeking. I was making it all up. There was no medical basis for what I was saying. The tests came back negative.

That was the language as opposed to “I don’t know what is wrong” or “I have done all that I can for you”.

This language , let me qualify, was not in reference to Endometriosis. I was diagnosed with that at 16. My symptoms and then the diagnostic laparoscopy proved that. The “you really are a crazy woman” came after.

I was going along with the Endometriosis diagnosis and doing all the treatments, hormonal and surgical to no avail. I had the miracle babies, I had the hysterectomy and I was still in pain. The OBGYN basically said after that there was no reason for my pain.

It was quite frustrating.

However, the one medical professional who believed me from the get go is my GP. He never made me think that I was crazy or it was all in my head. He took me at my word and started to search with me. He selected conferences specific to my symptoms to attend and contacted colleagues around the world to get feedback and information. For that I am grateful.

It was through his work that the diagnosis of Pelvic Congestion Syndrome came. Then the referral and embolizations. The first of which gave me 6 blissful, pain free months and the second which proved that I was developing secondary re fluxes- veins that became incompetent after those which were leaky had been fixed.  This is a major part of my present issues – this tendency to develop new leaks. This is the reason embolization has not been effective in my case on a long term basis.

I still get the disbelief even now though. This is mainly from OBGYNs who easily acknowledge the Endometriosis but discount the Pelvic Congestion Syndrome as non-existent or an “exclusion diagnosis”; all this although I have the proof of the 6 months and photos of the leaking veins.

So the medical system has not been the most kind to me. In many ways the doctors still act as though I am lying or it cannot be as bad as I report. After all I smile and go about my business. I say I am in pain and am still able to get through examinations without breaking down. Its a struggle.

I think that some doctors are good at what they do but they should strive to be great. They look at me and see a disease. They need to see a person. Maybe then they will start to treat me and all the others like me differently.

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The “Calm” before the storm….

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I wrote a few days back about being in a downward spiral and feeling helpless to stop it. Right now I feel as though the spiral has slowed but intensified- just like a hurricane that slows down is building strength and will be more dangerous when it reaches land.

Since my visit last week with the surgeon and the next day appointment with my doctor, well actually since the meltdown and IV meds the week before that things have not really improved.

True I am not in pain at level 10 anymore but it is not going below 6-7 either. Most times I hit 10 and have to go in for emergency relief, things get better for a bit. The pain levels drop way down to 5 or below. I feel as though I could have a few “good” weeks without having to go into the office or emergency for help. As if the pain can be managed with my meds at home alone.

This hasn’t happened in this instance.

Over the past 7 days I have been in pain at a constant 6.5-7. In the midst of this has been hours of pain ranging 8-9 where I just had to stop doing everything and stay in bed. I have been home from work and have had the opportunity to rest. I have not been trying to do much of anything at home.

On Friday, I decided to put some clothes in the washer, mainly my stuff because hubby and children do most the laundry anyway. I got the basket down the stairs- no problem- and put the clothes in and set the machine going. There was food from the day before so I didn’t have to cook and I just left the house as it was (no cleaning) and went to rest while watching a bit of television as the washer ran.

When it stopped, I went back down the stairs to hang the clothing on the lines (most people in Barbados don’t have dryers and if they do we usually hang clothing on lines to dry because its generally hot and sunny here).

I don’t know if it was the reaching into the washer to get the clothing or the raising my hands up to hang them but I was instantly dealing with some sharp pain. Being who I am I gritted my teeth and decided I would get the clothing hung regardless of the pain.

This is just one example of the week  but all week long I had situations like that. I have increasing pain in my back and pelvis with full bladder or bowels and after emptying either. Walking is an exercise in pain right now…………actually any movement is. I have difficulty sleeping because of the pain.36f0cbd188f1591a57846d6368ebcf67The past few nights I’ve just rested my head on hubby so he could hold me and offer some comfort as I lay awake-obviously this means he is not sleeping either.

Its almost as though every pain has been magnified since I’ve been home. The pain is not reaching 10 but dancing by and then jumping back. It’s scary.

Emotionally, I am on edge because I can feel that the worse is yet to come. I am not trying to be pessimistic, rather realistic. When you have lived with illness for so long you get to know certain things. I can feel the decline in my body. I feel weak both physically and emotionally.

Its as if all of me knows that something I would rather not deal with is around the corner. Yet there is nothing more I can do to prepare.

Just like a hurricane warning………its given, we secure the house as best we can; raise the refrigerator and freezer temperatures to the highest to preserve the food longer in case the power goes out; we pack go bags in case we need to leave the house for a shelter; make sure everybody has water, canned foods, non-perishable stuff, medications; then we wait. After we have done all we can, we wait, praying it will pass us but prepared for the worst.

I am waiting now. Trying to go about my day, doing what I can, when I can, resting when I must. Dealing with the pain as it comes; taking pain meds as prescribed and just waiting.

I feel as if I think about it or talk about it too much I will break. If I break there will be no putting me back together soon because I am spent. Yet I continue….I just do what I can when I can……………..and I wait.

30 Day Chronic Illness Challenge- Day 11

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Why do you believe you have this illness? Bad luck? A higher power? Or something else?

I don’t think it’s any of those things. Illness is a part of life here on earth. That’s it as far as I am concerned.

I don’t think it’s a test or something to teach me anything. I do believe though there are lessons that I can learn from the journey and growth that can take place. However, I was not given the illness to teach me a lesson. It’s just a part of life.

We all have a struggle, some illness, some other stuff. Its life; how we handle what comes our way is more important than the thing or event itself as far as I am concerned.

I think though that the illnesses are as bad as they are in my case because of medical decisions I made earlier in life in attempts to deal with the pain. For instance, having the hysterectomy, in retrospect created some challenges. The fact that all the veins etc. that supplied the uterus are tied off now and there is no outlet for the blood rushing in when the hormone levels drop is problematic. This increases the congestion and the avenues in which it can occur.

I think if I had doctors back then who took an integrated approach, maybe things would be better now. I have no malice towards them, I’ve just grown, I’m older and wiser.

So, no there’s no special reason I am ill in my mind beyond the fact that this is a sin cursed earth and illness is a part of it.

 

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.