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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Post – Surgery Update

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I arrived at the hospital just after 10:00 a.m. and was immediately processed in by the staff nurse on duty at the time. She informed that the doctor was already in theatre with another patient and that she had been looking for me earlier.

We went through the usual review of all documents and anaesthetic checks and then I changed into a gown, anti embolism stockings, booties and head cap; got the IV attached along with the blood pressure cuff and waited until I was to be escorted into the theatre.

I walked into the operating room and proceeded to lie down and prepare for all that was to come.  The last thing I remember was the Anaesthetist saying that they were just about ready to proceed because I was going under and the oxygen mask being put over my nose and mouth.

The next memory after that is being pulled from the most exciting dream by people calling my name and becoming aware of the most intense pain and feeling as though I was about to freeze.

Sidebar: This is always my experience coming out of anaesthesia. I am always dreaming and not immediately aware of being in hospital and I am always cold; cold till it hurts.

I tried to talk but my teeth were shattering and my legs hurt like I could not remember them ever hurting before. The nurses covered me with the electric blanket to get me warm quickly and the doctor came over to examine my legs (they had told me to bend them and I could not get it done, I tried but was unable to move them).

Looking back, my feet (legs) were placed in stirrups for the entire procedure, which was around two hours. Not your ordinary GYNAE office type. these ones held from my knees down in a special boot to keep circulation going. I was positioned as in the photo….my boots were a bit longer though.
933267_dMy thighs were rebelling from the pressure placed on them for such an extended period. After another 15 minutes or so I was able to bend my knees and move my legs however I chose. Despite all this progress the pain was not easing enough for me to rest and I was just too groggy to be discharged anytime soon. I ended up being admitted to the ward and spending the night in hospital. I didn’t sleep much since I was monitored- vitals taken etc. and medication given every few hours or so.

The Results??

Well the doctor’s words ” we didn’t find much in the way of Endometriosis”. No surprise for me there. That should be he didn’t find much that he can identify as Endometriosis. What he definitively identified was excised. However, he did say they found numerous “unknown” deposits throughout my pelvis. Those were also “cleaned up” but most sent to pathology for examination.

Secondly, my ovaries were left intact…yeah (NOT)…sigh….because all the cysts had disappeared and they looked fine.

My left ovary was stuck to the bowel, which was then adhered to the pelvic wall. There were also numerous other spots of adhesive tissue/ bands which were cut and the scar tissue removed.

In effect, there was more to be done than I anticipated.

Progress?????

Well its been just about 7 days and I am slowly improving. The 5 incisions are healing but they still hurt. I am able to walk around the house but tire quickly. I have been mainly just resting and taking my pain meds.

It will take a few beats for me to really gauge the success of the procedure and improvements. However, I can say that the separation of the ovary, bowel and pelvic wall has been immediately noted on my end. Whereas, before the op I would have  a BM and feel the stretching and most times have cramping and have to lie down for a bit; since the op I have not had that experience…..no stretching……..no cramping….no pain. So, that’s one positive!

Beyond that, I am hopeful and I do believe that overall things will be better……….especially with the pain.

I have no delusions. Whether Endometriosis of Pelvic Congestion Syndrome; both are chronic, progressive and degenerative. I take whatever I get from the procedure and move on. Continuing to fight, advocate, research, learn and grow. I know that whatever happens God’s got this …………..and that’s good enough for me.

Embrace the flat/ or nearly flat…

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Yesterday I looked at Embrace the stretch… and that was mainly about the adjustment I had to make in the type of clothing I wore. I promised to look at the changes I made in my shoes.

Let me say that I love shoes. I guess in that way I am a typical woman. I think that any day can be fixed with a sexy pair of shoes…..I’m serious here. There were many days in the past where I was in a bad mood and I just put on a popping pair of shoes and my entire attitude changed. There is just something about how I feel in the shoe. Anyway, enough of that.

I am 5ft 10inches tall. So I really didn’t need to wear heels to begin with. I just loved them from the time I started wearing them around age 12. I would wear heels between 2 and 4 1/2 inches high. To work, church and to any occasion that was not completely casual.

I realized whenever I had a period- before the hysterectomy, or whenever I was in pain- after the hysterectomy, I couldn’t tolerate the heels. I always wore flats of shoes with 1 1/2 inch heels of lower. There was just something about the angle of the heel that made the pelvic pain worse. I think it increased the pressure somehow. I’m not sure.

As things got worse I found myself less and less able to wear the heels for any period of time. I would wear to work my heels and after about 1/2 hour take them off. The same would happen at church. I found that the pain was just too much to bear.

It came to the point about a year ago, around the same time I was adjusting my wardrobe, that I had to stop wearing them all together. Standing alone was painful if I had to do it for more that 20 minutes furthermore in heels.

I was depressed over the shoe situation. Really depressed. One day I took all my heels and looked them over. Those that I could give away I did and the others I threw out. There were numerous pairs of shoes. It was a sad day.

Since then I have built up a store of flats. Nice flats. I have a few shoes that are 1 1/2 inch high but most are flat. Even those with the small heel I can’t tolerate when in pain.

So, another lesson learned. Test and adjust a friend of mine always says.

I have come to accepting that I have to do what is best for me. I have come to accepting that flats look nice also. I have come to deciding that pain will try to define me and bring me down ………………but I won’t let it.

I am stronger and more flexible than I thought.

So what, my clothes and shoes are different………….but you know what? I am still here and that to me is victory!

30 Day Chronic Illness Challenge- Day 16

What is your favorite inspirational quote?

There are so many quotes that I absolutely love that I had difficulty choosing just one. So I chose three that surround the same theme but speak volumes to me:

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This first one reminds me that there is value in my tears. Many times I have wanted to cry and either out of fear of embarrassment or just thinking it was not an appropriate time I have not. This quote tells me that my tears are a language all their own and its ok to cry.

I have been able to use it to help others and myself in some really tough times. We can’t always enunciate everything but tears speak for us.

 

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This next one reminds me that the dawn is coming. Realistically just before dawn it is extremely dark, then the sun peeps out and all the darkness quickly dissipates. In my struggle I sometimes need to be reminded of this. Its dark now and I cannot see my way but dawn is just around the corner. Hold on!

 

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This final one is one of my favorite Bible verses. Weeping may endure for a night but joy comes in the morning. This is a simple verse but such deep meaning.

Sometimes the night seems to last forever. Sometimes the pain and challenges I face seem never ending. I feel as though I cannot get a break, not even a moment to catch my breath. I am reminded that although I may weep there is joy around the corner and the metaphor of the night is a strong one.We all know that nighttime always gives way to daylight.

Therefore, my weeping will come to an end, there is no doubt and there will be joy in the morning. This too is sure.

What quote/ saying has been an inspiration to you?

30 Day Chronic Illness Challenge- Day 15

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What would you say to people newly diagnosed with this illness?

Dear friend, if I could have spared you this aspect of life I would have because I have experienced it and it is not my wish for anyone. However, that is not within my control; neither is it in yours.

The first thing I will say to you is never be ashamed or hide the truth about your illness from anyone. The way you treat your illness is the way others will treat it and you. If you are ashamed and timid then others will treat you as if there is something to be ashamed about.

Secondly, do not let the illness define you. There is so much more to you than this illness. It is not who you are it is an illness that you happen to have. Do not lower your goals and expectations of yourself based on being ill. Your path may be a bit more complicated than some but it does not mean that you cannot achieve all you have ever dreamed and more.

Thirdly, become your own expert, research the illness and journal your experiences. It may seem tedious at first but that information will be important when it comes to your care. The symptoms and effects of this illness are so wide and varied that you need to understand how it affects you specifically and convey that to your healthcare team. They do not know all. You have valuable contributions to make in your care.

Next, advocate for yourself. This is most important when you have a chronic illness and one that most times leaves you looking just fine to those looking on. You need to be prepared to fight some battles on your own behalf. Expect it…………its inevitable.

Fifthly, talk to other women. Learn from others who have been through the same or similar. Acknowledge that you are not alone…………..at times it may seem that way but you are not. There is a large community out there, get connected. The support is vital, especially in the difficult moments.

Next, accept there will be good days and bad days. This is the nature of life with this illness. There may be treatments and surgery, time off work and pain. There will also be great days. Days with family and friends and lots of happiness. Enjoy these days most so that they can carry you through the not so good ones.2d85fe82508def73712e4307699f6a53

Lastly, never give up or in, keep fighting and keep on moving forward. The battle may seem long and difficult at times but you can do it. This will test you in ways that you may never have imagined but you are strong………….stronger than you think. You can do it.

 

You can live with this illness and still have the best life ever.

30 Day Chronic Illness Challenge- Day 7

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What was the biggest realization you have had?

As I look back over my life and all the experiences I have had with chronic illness there are many lessons that I have learned.

The first thing that struck me was how much more difficult life is than I ever anticipated. I really am not sure what I expected but not this. Not to be diagnosed at 16 with one chronic invisible illness and then again at 35 with another………….after years of pain and struggling to find answers.

Certainly, I did not expect to be 38 and still fighting the same war- just different battles.

I’ve had countless moments when I thought that life could get no worse and by the same token would get no better.I’ve been down to the lowest of the low.Flat out on my back and only able to look up but not move.

In each of those moments, someone came by to give me a word of encouragement. Someone let me know they were praying for me. Someone came and cleaned my house. Someone brought us food. Someone helped me through.

This continues even now. The days when I think I can’t go on anymore and want to give up. Someone does or says something to remind me firstly, that I am not alone regardless of how I feel.

More importantly though, I am reminded that “this too shall pass”.

I guess maybe that is not the type of realization that others may have with chronic illness. However, it has been my biggest realization thus far in this battle.

The feeling of hopelessness and helplessness will pass.

The gut wrenching pain that had me on the floor of the doctor’s office will pass.

The fear and doubt and desire to give up, will pass.

I will be OK. I will be able to fight again and go on again and have happy moments with my loved ones and enjoy life.

The pain and sorrow will pass. I just need to hold on.

I am stronger than I think.

This too shall pass! It will get better!

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.