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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Pelvic Congestion Syndrome Research

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So I’ve been reading a lot of journal articles recently. I have stated before that one of the reasons I started this blog was to discover what other women were experiencing with PCS. I also want to keep track of what the medical fraternity is saying about it.

Last blog I wrote how having the surgery Update….Helped one Condition….Hurt the other  (

I spoke there about the challenges with my veins that I have been having since the op. The pics above explain what happens wen there is a diagnosis of Chronic Venous Insufficiency. Pelvic Congestion Syndrome is also known as Pelvic Venous Insufficiency/ Pelvic Venous Congestion. I guess if they can’t settle on a name that says something about how far the research has gotten 😦

In seeking to learn about the compression stockings and the issues others here face I had a conversation with a relative, this was after being in the same location and having to get some meds from her because my veins were popping again and the pain was starting to increase.

What was most interesting to hear, after the information about the stockings, was that years ago an OBGYN had said to her that she will probably have to wear stockings. That was the extent of the conversation. The doctor at the time gave no further information, no explanations; basically offered nothing. She believes that if she had been informed back then the situation would not be as dire now. Her diagnosis is Chronic Venous Insufficiency. Her issues are localized within her legs; while mine are pelvic  and only spill over into legs hmmmmmmmm.

This makes me wonder though, actually it makes me angry. Some doctors are just not worth the title.

My research has revealed a few things. Women who have or have had the following are more likely to develop Pelvic Congestion Syndrome. Of course there are always the exceptions. Note also that the number of studies done are so few that this information cannot be considered conclusive from a research methodology standpoint.

  • More than one child: they say this has to do with the veins being stretched by the weight of the baby through multiple pregnancies. Yes I know some women have never been pregnant and still have the condition. There also seems to be a genetic link in some cases. Maybe mothers just thought their issues were normal and never sought to investigate.
  • IUD: This has to do with the impact having a foreign object in the body for the extended period of time has and the changes that take place in the body as a result. I don’t fully understand from a scientific standpoint – really was never good at pure science- but I am told it leads to blockages and blood not being able to flow freely.
  • Tubal Ligation: Cutting/burning/ tying the Fallopian tubes clearly leads to a blockage and departure from the natural processes. This also leads to blood being rerouted and affects the flow- well at least in the most natural way.
  • Hysterectomy: Removal of the uterus and other organs- depending on the type of hysterectomy- again causes several blockages. All the arteries and veins that fed the uterus need to be blocked off because the organ is no longer present. Therefore, with hormonal changes, the blood still rushes into the pelvis but one major outlet – menstruation- is gone. Hence there is increased congestion in an already tiny space.
  • Anorgasmia: This is an inability to reach orgasm or coming to the point of orgasm without achieving it. There are women who for whatever reason will engage in sexual activity and intercourse but choose to avoid the orgasm e.g could be fear of  the level of pain. I think I wrote about this in Sex………Love to Hate to Love It!!! There are also others who have never orgasmed or were previously able to orgasm but no longer can as a result of illness/ emotional issues.

Whatever the reason, by choice or involuntary,  this also leads to increased pressure           within the veins and pelvis and no outlet for it.

The studies that I read indicated all of the above either individually or jointly as risk factors to developing Pelvic Congestion Syndrome. I have had/ done/ used the first 4 and intentionally on occasion done the last one. Seems my situation is the perfect PCS storm 😉

Looking back, an IUD seemed like a good contraceptive method after I had my first child; after the second child a Tubal Ligation was a good decision since my family was complete and I definitely did not want any more children and the hysterectomy was the best treatment decision for the issues I was facing.

If I knew then what I know now, would I make the same decisions? Absolutely not!

That’s the thing about hindsight- its perfect vision 😦  I will not be angry or regretful about those decisions though. I always believe that once we did the best we could at the time with the information at hand, we should have no regrets.  Or at the very least, we should not live in the regret; acknowledge it and move on.

So, that I have done. I move on. I cannot reverse time and make different decisions. However, my knowledge now can help someone else.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Angry Bowels- IBS?

She's just discovered her IBS isn't caused by chocolate!

My toilet and I have become close friends :(.

Closer than I ever thought imaginable.

Last post I looked at The Measure of Success. That was focused on determining whether the surgery had been successful or not and how that determination would be made. I said then that its not as simple as pain/ no pain. Boy, was that ever true?

So I had the pelvic issues I mentioned with the shooting pains and cramping. Then I started to develop some abdominal ones as well. I was moving between diarrhea and constipation and things just would not settle down.

Then came the gas and intense abdominal cramping. As you may imagine the pelvic stuff and this on top didn’t make for a happy camper. I was literally bent over in pain.

I found myself on the toilet trembling, with dark eyes and just trying not to scream. Yet what felt like constipation wasn’t and what may have presented as diarrhea was not necessarily the case either. What on earth was going on with me?

So, the good doctor and I had one of our conversations and he suggested that I use Buscopan. I had used it previous to the op for just two days when I was having abdominal cramping after BMs. This pain though was times worse.

I did as advised and the meds did help tremendously but I found the pain would return depending on what I ate.

Being the good research student that I am I started to look for possible causes. The symptoms I experienced all pointed to Irritable Bowel Syndrome. I was not satisfied with this and dug deeper. I discovered loads of threads, blog posts and research papers about IBS developing after abdominal surgery and laparoscopic pelvic surgery ;( There was also some research stating that IBS symptoms are sometimes confused with bowel endometriosis. Hmmmmm.

WOW!

Maybe, my body is just angry for being invaded and manipulated 🙂

I started reading many of the comments and experiences of the women involved and then I stopped……………it was not very encouraging. Many of them stated that the problems have persisted for years.

I chose to look at how my diet could be modified to help me. I discovered quickly that certain things had to be cut from my diet immediately. Each time I ate the item I found within 1/2 hour the cramps and rumblings would start. I have cut greasy foods, pepper, cheese (didn’t eat much of this anyway…like once every few months), lentils and channa (ate loads of these though) and citrus fruit thus far. Many of the other recommended changes I already had within my diet e.g brown rice only, gluten free, no dairy, minimal animal protein and no fried/ processed foods.

I have also taken to drinking tea………..in Barbados we call any hot beverage tea, regardless of chocolate, cocoa, green tea, black tea…………I have taken to drinking herbal tea everyday. I drank herbal tea before just not often. Well I’ve been drinking it at least 2x a day recently. I have also cut the portions I eat. I now strive towards 5 small vs 3 large meals and take the time to eat in an unhurried setting and manner…………making sure to chew my foods well.

This also means that I cannot purchase any meals but must ensure I prepare and travel with what I am to eat. This is not really an issue, I usually do this most days. I will just have to cut out the once in a blue moon purchases.

These changes have helped significantly! I have little to no IBS like pain once I follow these diet rules well. If I slip up, even a little, in 1/2 hour my body and I start to fight.

So, is this permanent? Lord knows because I don’t. All I can say right now is that I keep on moving forward. Test, adjust and step. I continue to deal with it one day at a time.

 

 

 

30 Day Chronic Illness Challenge- Days 26-28

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Day 26: What impact has this had on your friends, partner, family etc.?

Think that I answered this question before earlier in the challenge but:

My Family- Husband and children

This has not been easy for them on any level. My husband has been with me from the beginning through year after year of doctor’s visits, medications, surgeries and has watched me be well and then be at the point where I can hardly walk or function without his help. He has been my rock- quiet and sure. It has been difficult for him I know, many times I think this is not what he signed up for. It seems more “worse” than “better”. Despite it all though, he’s still here and I praise God for him every day. He never complains or gets upset, he just does what needs to be done and we move along.

My children, they are on a roller coaster. Sometimes with mummy happy and up and able to do stuff, go places etc. with them and then sometimes not. They do get frustrated and lash out at times. For the most part they just accept it. In some ways, they are resigned and/ or desensitized to my pain. They have learned to make the best of whatever I can do when I can. They have also become self-reliant and do whatever they can for themselves.

My Friends

I don’t have many of these. I have loads of acquaintances but friends no. The few that I do have are faithful. At times, they too get frustrated because I must cancel at the last minute of just stay home all the time but they are here for me whenever I need them.

 

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Day 27: What’s the most helpful advice you have had?

The best advice that I have been given is:

“Have your meltdown, cry, scream, fall apart. When you are done, get up and go again, fight again. The world will continue with or without you. So, decide.”

This helped me to realize it was ok to lose it ever so often and that I am in control of what happens after that. Life is hard, yes, it is. I must decide what I want and go after it. Staying down is no use to me and does not help me to progress. Everybody has a struggle; I either fight and continue or stop and die but the world will go on.

 

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Day 28: Name 5 things you have achieved despite your illness?

Despite this illness I have achieved some of my dreams in mainly my professional life. I have:

  1. Completed a Master’s Degree.
  2. Co-authored and Academic Book.
  3. Started a Business.
  4. Got a second part-time job.
  5. Started this blog.

30 Day Chronic Illness Challenge- Days 23-25

I have been ill for a bit now and am way behind in my challenge, even this has depressed me. However, I strongly believe that I should complete what I have started and am doing such now although I don’t feel like writing a thing.

 

 

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Day 23:  What do you say to yourself when you need a pep talk?

I am an advocate of self-talk. I firmly believe its what we whisper to ourselves or the scripts that we constantly play in our minds that determine our actions and our outcomes. Why? This is what we believe and it plays out in every aspect of our lives.

When I need, a pep talk I tell myself a few things:

  • God’s got this, no need to worry.
  • Serenity- accept what you can’t change, change what you can, know the difference.
  • This too shall pass.
  • It won’t always be this bad.
  • You can get through this.
  • You are stronger than you think.
  • Look how you handled ……This is no different.
  • You can do today, one minute at a time, one step in front the other.
  • There are lessons to be learnt, learn them.
  • Share with others what’s happening now, it will strengthen you all.

 

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Day 24: How have you managed to juggle your social life through your illness?

 

Social Life?

I am not your regular social butterfly. I was never one to be out and about every weekend or any such thing. I have always spent most my time at home or at least with family. Most my social activity came from church, although I do enjoy plays, recitals, dance productions and a good dinner outing.

I have become more a home body because of illness. So even the activities I did previously I don’t do anymore. I stopped driving at night, a while back, unless necessary. I found that the Pelvic Congestion Syndrome brought so much fatigue and heaviness as the day progressed that by night time I was just too tired to focus on the roads as I should. Many times, I am sure that angels took the wheel from me and drove me home. I was just exhausted and not alert. I remember one night, I arrived home and parked the car and could not remember driving or which road I had travelled. After that I decided it was foolhardy to continue driving, especially at night.

If I have an event now, I will rest as much as possible before. This brings no guarantees of my ability to attend or stay through the end of the event. That’s just how life is.

So, social life……………I don’t really have any.

 

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Day 25: Name 5 Activities that you have managed to pursue while being ill and 5 that you have done that you wouldn’t have done had you not been ill.

 

I don’t think that I can find five things in either category but here goes…………

Since I have been ill I have managed to:

  • Complete a University programme.
  • Do other self-improvement courses- cooking & dressmaking.
  • Run a 5K Cross Country Race
  • Volunteer services to train others
  • Open a business.

 

Things I have done that I wouldn’t have if I were not ill:

  • Start this blog.
  • Start a book.
  • Register for a Psy D programme

The Storm Rages

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A few days back I wrote The Calm Before The Storm . In that post I spoke about what was going on in my body, what I was feeling and the gradual decline that I felt taking place.

The calm now has passed and the storm rages. Funny thing is I don’t believe its at full strength.

Over the past seven days things have just gotten worse and worse. I returned to work last week Monday, March 13 and was only able to remain at work for three days. Each day, by afternoon the pain was so intense I could do nothing but lie on my desk and wait until my transportation was ready. Upon arrival at home I went straight to bed and stayed there for a few hours, unable to do anything else.

I have been home since then. In varying degrees of pain.

On Sabbath I took the children to church and to participate in the Global Youth Day activity- where they go out into the community doing acts of kindness for others- and I was in trouble from the time I sat behind the wheel of the car. People may ask why I went although I was in pain but the truth is, I have to try. I have to do things with and for the children, my husband cannot do every single thing all of the time. He has been doing most of everything for a while now. Sometimes he needs a break.

So, I drove them to church and sat in the car propped up on cushions while they went out into the community.

Sidebar- its amazing the number of people who asked me if I was going with them and dropped remarks about it; made comments about my sitting in the car and not in church or just looked at me in a disapproving manner.None of these people asked how I was doing. Only the one or two who were responsible for the activity in which the children were involved inquired of my health. Just another example of how quick we are to judge others.

So, I sat in the car and waited for about 1 1/2 hours until they returned. As soon as they returned I left and returned home to bed. I stayed in bed for the remainder of the afternoon and evening. Hubby took them to the evening activity. Although this is my life, I still have to try to let the children do stuff.

Sunday was horrible. Along with the constant heaviness and dragging pain I also found I was having sharp blinding pain in the right ovary. It drove me to the codiene – which I had decided I was done with- I took both the tramadol and codiene in layers as advised by the doctor. Thankfully, the two together knocked the pain down to 7, which is still not a good level but reduces the probability of me having to go in for urgent care and IV meds. When I took the codiene I literally could not move from the bed but about an hour later I was able to at least go to the bathroom on my own and move from the bed onto the sofa and spend some time with the children.

That has been the story since then. I have been taking both meds and living between 6 and 7 on my pain scale. I have been mainly in bed or at least on the sofa laying down.

My appointment with the surgeon is still days away on March 31st. I am lucky to see him since his office was booked up to July when I took in my referral but still its a long way off.

For now I stay quiet, trusting that God will either calm this storm or calm me but either way I will be ok.

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30 Day Chronic Illness Challenge- Catching Up- Days 18-20

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18. Do you think you have become a better person through illness? Explain.

Yes, I am definitely a better person as a result of being ill. I was always a generally empathetic person and sought to consider the feelings of others in everything I did; this is probably what guided me to my profession.

However, I have found that illness has given me another level of empathy, a deeper level; one that can only be reached through this type of experience. This has made me a better person, it has also made me a better Psychologist.

'I see a bright future, a transformation: Beauty, wings, elegance...'

19. How do you feel about the future?

I am very optimistic. If I am honest I would admit that sometimes I get down to the point where I can only see directly ahead, the next minute or hour.However, I also see God just setting me up for greater things.

Many plans and dreams that I have had and held for years, in some instances even doubted myself; I see falling into place. God has opened opportunities and caused me to meet people and make associations that are directly needed to fulfill these same dreams. Avenues that I didn’t even know existed have opened before me.

It gives me hope. My future may not be totally pain free or disease free; but I have a future…..and it is bright!

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20. Have you met anyone with the same illness? Did it help?

I have met numerous women with Endometriosis but I have not met anyone in person who has Pelvic Congestion Syndrome. I guess this is because it is relatively new and un-researched. I think PCS is also misdiagnosed and under- diagnosed; while Endometriosis, although enigmatic is a more common diagnosis and to some extent better understood.

Meeting these ladies whether in person or online has been encouraging to me. I felt as if I was alone for such a long time. Although it hurts to hear their stories and I cry with them it is comforting to know that others are fighting with me.