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.

The Measure of Success

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How do we measure success? How do I measure the success of the surgery? Is it an all or nothing thing?

This morning I awoke feeling crampy and aching all over. I’ve got pain on the right just around the ovary and my brain is kinda fuzzy. Feels like PMS………well in my case PNothingS. Great! Just wonderful!

Honestly, from Friday I was feeling like my hormones were getting wacky. I decided to adopt a wait and see attitude. I don’t know about others but after gynae surgery my cycling goes haywire and takes some time to settle down. According to my charting before the op, I should have ovulated last week. Obviously with all the organ handling, separating and removal on May 10, I was still in post op pain and mode last week. I now need to start charting again to establish what the cycle will be.

So, what does this pain today mean? As I am writing here I have already taken some meds and the pain is between 6 and 7…………livable/ doable. Does this mean that the surgery was not successful?

I think its too early to even think that. Things need to heal first before I can truly assess the pain. Even then, if the pain levels are still as they were before does that mean no success?

I’ve thought about this, spent a lot of time on it actually. I would say no; success is not as cut and dry as pain before surgery/ no pain after surgery OR horrible pain before surgery/ less pain after surgery. I think I should look at the little things, small progresses made and see how they add up as opposed to looking for the drastic change.

So far I’ve noted success in:

  • Bowel function- I can have a BM now without intense pain, stretching and cramping and having to move from bathroom to bed and stay there for at least half an hour before I go anywhere or do anything.
  • Sleep- I am sleeping more now that being awake throughout the night from pain. I still need to wake up to empty my bladder but for the most part I can sleep.
  • All day pain- previous to the surgery I was in pain all day long. Up until today that was not the case since the op. There is pain yes but not consistently throughout the day. It will take me some weeks to work through what is happening now and see if the pain has reverted to mainly cyclical and minimal in between.
  • Mental State- the impact that chronic pain has on mental health should never be discounted. Previous to the surgery, the flare I was in had lasted so long that I was really down in the dumps. I smiled and did what I had to/ what I could to fulfill my various roles but beneath it all I was seriously struggling mentally. Right now I am in a better mental space. Partly because of the improvements  I mentioned above and also because I was able to get some questions answered by having the procedure i.e what was stuck to what, where the growths were etc. So no matter what happens going forward at least I start from a more stable space.

Each of these things is major in its own right. Each one was a source of worry for me before the op and contributed to my overall disposition. The improvement equals success to me. I claim the small victories.

If we continue to look for the big earth shattering changes, most times we miss the small but significant ones.

Yes, I’m in pain today. It may continue for a few hours or a few days I have no idea. What’s good though is that I am in a better place to deal with it now. That’s success.

As the quote above says, this is a storm that I am in. I don’t know how I get through most times (actually I do………it’s all God) and I have no idea if it is over or when it will be over. However, the one thing I do know is that when it is over/ when it wanes before picking up again I can see my growth. I can see how I have developed and how I have become stronger. The person I was going in is not the same person coming out.

This to me is success!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My Chronic Pain Labor Lessons: When you can no longer push.

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22 hours before I gave birth to my daughter I was sitting in my doctor’s office, it was just the weekly check-up. I was 39 weeks and feeling horrible. The doctor did an in office induction. He told me to go home and rest because I would not make it through the night, the baby would be born by morning.

I went home, spent most of the day in bed and as he said went into labor close to midnight. Off to the hospital I went.

As the contractions grew closer, the doctor arrived and we got ready for the delivery. let me backtrack a bit and say I was exhausted. It had been a rough day. My body was worn even before the labor began. I had an IV and oxygen and was just trying to have a living baby and stay alive myself.

In the room were the doctor, midwife, my husband and me. People were asking me questions and I could not answer:

Lesson 1: When in pain its difficult to think

This has been my experience over the past few weeks as my pain has continued. I have an increasing amount of brain fog. To the point where I am making a statement and midway I completely forget what I was saying. I forget people’s names; things that were so simple and almost second nature to me have become difficult in those moments.

Back when I was in labor, it was Ok. It was accepted that I was in too much pain to process what I was being asked. Now people just call me forgetful or question my brain function.

I wonder why?

As the labor progressed, I started to whine. really whine. I had come to the point where I thought no other person understood what I was feeling and I didn’t have much energy left.

Lesson 2: When you talk about your pain……….people think you are exaggerating.

I was telling everyone how I couldn’t take the pain any longer. The responses I got while in labor were meant to encourage but came across as being ignored. I was reminded that I had done it before and that my body knew what to do and not much  more to go etc.

I have the same experience now. Only thing nobody really bothers to encourage. Let me say here that I do have my small, faithful group of cheerleaders; they are exempt from the “nobody”.

Generally though, people think I am exaggerating when I speak about pain. I’ve gotten so many “it can’t be that bad” and “you’re making it seem worse than it is” comments that I actually stopped talking about it. I’ve gone silent…for the most part.

Although labor was painful, it was better because at least people believed the pain existed…….even if it was minimized in order to provide encouragement.

 

As I stated earlier, I had oxygen and an IV during labor and I was becoming exhausted. After the doctor checked and said I was ….cm dilated I told him that I couldn’t do it anymore. I needed help.

Lesson 3: There comes a point when we can no longer push through…we need to ask for help and keep asking until someone listens.

The doctor did two things at that point. He got me some pain meds and asked me to pull myself up into a sitting position using the bar over my head. the meds helped with the pain and sitting employed gravity to help the labor progress.

I came to the point this year where I could no longer push. See, I am accustomed to just pushing through the pain. Doing what I have to do regardless, just getting it done. I realized that all that I was accustomed to doing and using were proving ineffective. I needed another level of intervention.

 

Again, people understand and accept this with labor. In my case they just behave as though I am making the choice to stop doing what I am accustomed and using an illness as the excuse……….instead of just saying I don’t want to do it.

Labor is known to or known of by everyone. I guess that makes it easy to empathize and sympathize. My illnesses being unknown and misunderstood must automatically place me in the category of someone who is pretending or lying.

 

Shortly after the sitting and meds I was ready to push. One push and she came screaming into the world.

Final lesson: Regardless of the journey, bruises and bumps along the way….I can make it through.

By the time my daughter was born, I was spent, physically, emotionally and psychologically. I was hungry, sweaty, bumped and bruised but I made it.

I take comfort in that. I know that chronic illness is not like labor. Labor is an event. It passes and then is no more. I am not going to have these illnesses one moment and then a few hours later no longer have them.

However, there will be acute pain episodes and sometimes weeks or months where the pain flares beyond the norm that can be likened to labor.

From January to now I’ve been in labor. The contractions are almost back to back now and I know it will soon be time to push. Through all the challenges with brain fog, talking about pain and being ignored and having to ask for help I know I will make it.

I will still be ill. However, this period shall pass. I will have the scars and memories but I will be ok.

After that, whenever next my labor experience begins again…..I will remember the lessons I learned to get me from one point to another.

Unrelenting pain :(

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These past few weeks have been rough, extremely so. I cried more than I have cried for years. I cried from frustration, from depression, from “isolation” (I wasn’t isolated but felt so), I just cried.

As you know I was at home from work for a while because the pain was just too much for me to cope with. It was not only physical, it became emotional and psychological. That combination threatened to undo me. I felt as though I was just unraveling and was powerless to do anything about it.

Reality is that emotional turmoil and psychological stress lead to decreased levels of coping. In my mind I just hit rock bottom. Truly, hit it. I had many days here at home alone in bed to consider all that was taking place in my body and mind. It exhausted me to the point where I just slept for hours on end. I needed to sleep, so I did.

I wish I could say that the pain has subsided or eased up any……it hasn’t.

I went back to work on Monday, not because I am any better, rather I felt I needed to go. This week is the last week of school here and I wanted to terminate with my interns and close off the office for the holiday.

Although happy to see me, my office personnel were and are concerned about my pain levels. I have been “surviving” on the maximum dosage of pain meds throughout the day. Just today, I had to put my feet up and lean back in order to stay at work. When the pain increased it jumped from 6 to 8 and began to threaten 9.

I came home after work, ate a little, took some meds and went to bed. I stayed in bed for 4 hours before I was actually able to get out. I tried before and it didn’t work. The pain was just piercing my body. As usual it was mainly concentrated in the right ovary but extended across my lower back and down the right leg. On two occasions I attempted to get up from the bed but the pain just pushed me back down. Its unrelenting.

So, from January to now my spiral continues. Yes there are moments where I can do stuff; I was able to bake the children some cake for the children on two occasions. They were really happy about that. I still cook, although I do most of it sitting instead of standing like before. For the most part though, my bed and couch have become my best friends. I loved them before but we are almost inseparable now.

How do you answer the question when you forgot what normal feels like? You don’t. At least not in a way that makes any sense to those who ask it. I’ve also learned that normal doesn’t exist, not really. It is what I make it. Right now, normal is more hours in bed than out, that’s ok. Normal evolves as things change.

I continue to pray and trust that my normal will one day be free of pain……….and if that’s not an option……….then that the pain will be manageable. I refuse to let this pain define me………I cry….. but then I move on.

 

 

 

 

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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30 Day Chronic Illness Challenge- Day 13

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Has your physical illness had any effect on your mental health? Explain.

 

As a mental health professional this is I think the most serious question thus far. The one that gives me pause. Has my mental health been affected by all this? The short answer is yes; how could it not?

I have encountered doctors who told me that my pain was all in my head and that there was nothing physically wrong with me. In the initial stages I started to doubt that I was actually physically ill. I started to wonder if I had Munchhausen Syndrome or was a hypochondriac. I actually considered it. My doctor reminds me on occasion that many referrals for PCS especially come from Psychiatrists because the women were convinced that something must be wrong with their brain since doctors could find nothing physically wrong.

I have had moments. days, weeks where I was down. I won’t say depressed because  for me that is a diagnosis and I have not gotten to that point. However, I will say that my being down if not dealt with could eventually lead there.

I have a greater level of stress in my life as a result of the illness as well. Both real and perceived stress. I do worry and process constantly. I have  a need to understand everything on a psychological level so I process as a rule. When the situation yields no answers then I become stressed.

I have had to employ for myself many strategies that I teach my clients. I have also chosen to seek therapy on a regular basis. I have a go to colleague who is there for me when I need them to be. A space where I can be totally honest and let it all out.

Chronic Illness is one of the major risk factors to mental illness. If the person suffering the illness is not made aware of or introduced to some of the protective factors then the risk is higher. In my case it is a blessing that I am aware on a professional level of many of the issues I face and have the resources and contacts to deal with them.

Despite all this, it is a day to day struggle sometimes to keep positive, keep looking up, keep fighting and advocating on my own behalf.

As I said in the beginning………….how could life with a physical chronic illness not impact mental health…………its not possible. The difference in outcome is how it is dealt with and the resources that come to bear in the situation.

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.