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 ūüôā

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 ūüė¶ 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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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 ūüė¶

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.

 

The Space I’m in….

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I am slowly learning to accept and embrace my present space.

Many times someone would ask me a question and upon my response I would say “I’m just not in that space right now”. Meaning whatever it was I was not in a position to think about it or deal with it, my mind was elsewhere and I was not trying to shift it.

You know I have been talking for the past few weeks of the levels of pain and the challenges I have been having with just everyday stuff. Things like the ordinary cooking and sweeping and just trying to have a relatively tidy space.

I’ve been doing the physical back and forth to hospital, insurance company etc. in preparation for surgery. I’ve also been doing some reflection and just getting myself emotionally ready for the procedure and really going in blind as I will be.

As part of this have been turning down speaking engagements and presentations; trying to ensure that I am unencumbered and can just take the time to recover. However, over the past week I have had a few commitments to meet including a presentation to colleagues.

I have been “suffering” along with everything else with some serious brain fog. Just can’t remember anything. I prepared for the presentation as usual and although I really didn’t feel well I was off to do the presentation.

Sidebar: I have been on the other end of someone cancelling on me the last minute and I really try not to do that to others. Yes, they are aware that I have been increasingly ill recently, yes, I am sure someone else could have done the presentation even if I was still at the meeting but….I like to keep my commitments as much as humanly possible.

If I’m really honest as well I still want to be able to do something besides staying at home……….so I went to do the presentation that I had agreed to do two months ago.

I stood to do the presentation and I was trembling, not from fear, rather from the pain and fatigue.

I made it through the presentation but in my mind it was horrible. I was lost so many times and just filled in the spaces until I found my way again. I guess persons thought it was planned.

They complimented me and said it went very well. I decided to just accept what they said. I know though, it was far from reflective of my abilities and my preparation.

So what space am I in?

I’m in a space where I just have to accept that I can’t right now. Not even those things that I can usually do when in pain.

The brain fog on top of everything else is too much now. I haven’t given up……..I’m accepting that in this space some things are not possible.

I’m in a space where stress is not my friend and it makes no sense to worry about what I cannot do…..what I cannot change. I just have to work with it. It won’t last forever. This I know.

For the next week I will just continue to prepare for the surgery emotionally and psychologically.

As all else ………….this too shall pass. Until then I will embrace and accept the space……..

 

 

 

 

 

 

Pearls of wisdom :(

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This week is shaping up to be an epic week. Its absolutely amazing all that has happened and this is just the second day.

I wrote just yesterday about being tired of explaining to people that I am ill regardless of how I look in the post¬†How to look sick‚Ķ‚Ķ‚Ķ... I really am tired of it. I wonder sometimes how many people really believe me when I say I am in pain. I’ve had enough medical professionals call me crazy so I guess the average person isn’t that far off when they doubt me.

I was talking to an acquaintance this morning and the person asked me what were my plans for the day. I responded that there was not much on my schedule and I was in bed getting a bit of rest because I wasn’t feeling great. The response I got was ” you always in bed, try and get out,¬†conquer the pain“.

As positively as I tried to regard that statement my thought was “what! really!” I really wanted to give a genuinely nice slant to it but it reached me as a negative comment about me and in turn the way I handle being ill.

The word conquer means to get the better of/ overcome/ master/ take control of. Those are the words that came to me in the first instance. How could this person say such a thing. As if it is sooooooo very easy to control the pain and not let it control me.

So what, I am always in bed. No, I don’t love being in bed so often but lying down helps significantly because it takes the pressure of my back and pelvis and the pain is less intense. So, if I can stay in bed and still do work on the computer etc. I will.

This morning though I was just in bed, in pain. I had already started doing laundry and stopped because of the pain. The washer was still running and I fully intended to at least hang the clothing when it stopped, but for the moment I needed to rest.

Conquer also means to surmount/ rise above/ get over. Unfortunately, these more positive meanings did not come initially. In the moment I responded to the individual “if only it was that easy”……. instead of all the other words in my head. This was good though, those other words weren’t reflective of my character.

After I had calmed down and was able to get out of bed again, I decided to look at it positively instead of negatively. I decided to process it, think all my feelings through. See what else was coming to bear on my reaction and look at the statement for what it was…..just a statement; not necessarily intended negatively.

Truth is that it is very easy for me to lash out, if only in thought, at others because of what they say and do or rather how I perceive what they say and do. I have to be so careful with what I say because in the midst of pain and especially extended periods of pain my judgement is skewed.

Pain causes me to be short and sharp with people. Many times this is why I stay alone……for fear of lashing out in anger and frustration at the person in front of me when it is the illness and pain that I want to shout at. I am working on this. Like most other things, awareness is where the change begins……. I am aware.

So, I will not let the pain define me. I will not let it change me. If I inadvertently hurt someone because of it I will apologize but I will try first not to hurt them. Even if the thoughts come, I will keep my mouth shut until I can process them. Some things when said cannot be unsaid.

I will take the advice given this morning. I will conquer the pain. I will rise above it and surmount it. This I will do by continuing to follow my dreams. I will continue to work and study. I will continue to do the best that I can from day to day.

On those days like this morning where I have to rest, I will not view that as the pain conquering me; rather, I will see it for what it is. That is just me doing the best that I can in the moment.

The only time the pain will win is if I give up………….and that is not an option.

I will conquer!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

How to look sick………..

641b9af8f29d699da4896b1fc2d25545I’m so tired of explaining to people that my looks have nothing to do with how I am feeling or whether I am actually sick/ ill or not. Time and again I say to people I am not well and hear them say “but you don’t look sick”.

Just yesterday, someone approached me; I was sitting hunched over with my head on a table. “Hi Lyn, I heard you weren’t well”. That comment made it seem like it was in the past so I responded ” I am still not well”. ¬†The next response was ” but you don’t look sick, you, look healthy and bright”.

“Looks can be deceiving”, I replied.

You know there’s a book titled “How to be sick”? I thought I should write one titled¬†“How to look sick”.

Now since I can’t write a book overnight, I have done what I am calling “Lyn’s Quick Guide to Looking Sick: All you need to know in one place”.

I should probable say that these steps are guaranteed to get people to believe you are really ill. Try one or all and tell me about results:

  1. Don’t Smile– Keep your face screwed up all the time. Never wear a smile, only frowns. If you smile people will think that you can’t possibly be sick. It’s a fact! Sick people always frown, that’s all they do apparently. So if you want to convince people that you are actually ill……… don’t smile.

2. Stay at home– This should actually read, never leave your house to go anywhere ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬†beside the doctor and back. That is…..no shopping- groceries or otherwise; no ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬†conducting business of any type; no work; no driving; no going to the beach or ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬†park……… or anywhere else. It’s proven that sick people don’t leave the homes ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† because if you leave you can’t possibly be ill. It would mean that you are faking it ¬† ¬† ¬† ¬† ¬† ¬† ¬† because somehow ill and housebound are synonymous (no offense meant to those ¬† ¬† ¬† ¬† ¬† ¬† whose illness leaves them housebound). So just stay at home.

3.¬†If seen walk slowly– There is no way that one can be ill and walk at a regular pace ¬† ¬† ¬† ¬† ¬† ¬† or faster than another person; that is absolutely unheard of! If you are ill as you ¬† ¬† ¬† ¬† ¬† ¬† ¬† claim to be it must be manifested in your walk, you must move slowly and with ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† caution (mind you depending on my pain level I do walk rather slow but I’m not sure ¬† ¬† ¬† it makes a difference). People who are not ill walk briskly and get where they are ¬† ¬† ¬† ¬† ¬† ¬† ¬† going quickly; the sick ones don’t……. that’s just the way it is. So walk slowly.

4. Cry Often and in Public– Ok, firstly I do cry often when it gets really bad. That’s not what I am talking about though. You need to cry and let loads of people see you crying. If you are actually ill with these chronic and painful conditions, you will be constantly sad……right? Actually, you would be depressed (truth is some of us get depressed and are depressed I know, this is not about those of us).

So someone who is sick cannot be happy and go through a day like any ordinary person without crying. We must cry from the pain and the situation and every and any other random thing. We do this because we are actually ill and that’s what ill people do. Apparently crying often and in public are sure fire signs of being sick………..if its not present we just don’t cut it. Cry in public¬†……….do it often.

5.¬†Be Disheveled and Unkempt– Friends, this is a biggy. This really is a good indicator of illness. We must be disheveled, untidy………..somewhat not put together. There is no way under the sun that we can be sick and dress well, with everything in place, neatly ironed clothing, hair well done and styled or at least visibly combed. We definitely cannot have make up- even the basics like powder or lip gloss……….that is an absolute no no.

If we are actually sick, all those things will be things of the past. How can I look at someone and say that I am ill and look so amazing in my clothing and everything in it’s place? That’s impossible…………it must be! I must be lying!

 

This is as far as I have gotten in my “Guide to Looking Sick”. When the other tips come to me I will be sure to share with you all.

Unfortunately, even if I do all these things people will still look at me and doubt every word coming out of my mouth. Its hilarious because if I had to choose an illness to have……….if I had no option of being well but had to be ill and could choose it…………I would probably choose one that people could see manifested somehow.

I don’t like the term “invisible illness” because it makes it seem as if the people are invisible too…………..and I am far from invisible. However, I would choose an illness that was less stress to prove its existence. One that I won’t have to prove that my pain is real and I am not mentally ill.

So, I don’t care if i don’t look sick/ill to those looking on. The way I look on the outside says nothing about the constant turmoil and pain I experience. If you doubt me, that’s ok, just leave me be. I have no time for people who need proof. Truth is, for some they will never sympathize or empathize unless its hits home to them, either they become ill or someone they love dearly. Only then will they believe me and others like me.

That is sad and unfortunate……..but it is the truth.

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?