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……..

 

 

 

 

 

 

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.

Mopping while sitting….Keep on keeping on :)

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This morning I woke with the kitchen floor on my mind. My tiles are white – huge mistake- everything is magnified by them, the slightest mark is seen ten times larger because of the white background.

Anyway, I decided that I was going to mop the floor, first I had to sweep it.

Sidebar- since the embolization in 2016 I can probably count the number of times I have mopped that floor…any floor in the house….on one hand. The house has been swept and mopped yes but not by me. Even before that procedure and definitely after I find the action of sweeping and/ mopping to be extremely painful. Something about the angle of pushing or pulling the tool causes me severe, undeniable, cannot be ignored pain.

Anyway, only my son and I were awake. The entire family has been doing some cleaning and tidying these past days so he had his chores already set out.

The only way that I am able to sweep or mop and actually complete the job is to do it while sitting. I was trying to find a picture to adequately represent this but alas there was none.

I asked my son to bring the mop bucket, the broom, the mop and the scrub brush on a stick for me. He helped me to get the water in the bucket and get it back on the floor. then it began.

I sat on a stool and swept one section after the next and then deposited the dust into the bin. Then I took the mop and sprinkled water on one section at a time. If there was need to scrub any stuck item off that section I took the brush and scrubbed, then mopped off the area. Pushed the bucket backward or in whatever direction I needed and the same with the stool on which I sat.

The entire activity took me about 40 minutes. Then I just sat on the stool and waited until the floor dried. My son emptied the bucket, washed the mop and scrub brush and I returned them to their storage spaces.

No, it was not pain free…..minimal pain it was….and I got it done. I was happy, but exhausted. Seriously, exhausted!

I had my breakfast, took a shower and then went back to bed to rest a bit.

Now, I know many people out there are like some of my friends who would ask why I didn’t let hubby or the children do it. As I have stated so many times they can’t do everything. More importantly though I don’t want to be the family member who is constantly asking or needing people to do every single thing. True, I may not be able at this point to do things like before. I may not be able to do what I want and how I want but I can still do.

I am an independent gal. I will do what I can, when I can. This is the reason that sometimes I cook and do all the prep sitting where before I would do it all standing. I also do dishes sitting sometimes…another activity usually done standing. Sitting takes me longer and the level of productivity or rather the speed is not the same as standing but I get the job done.

If I never said, someone coming into the house and tasting the food or looking at the dishes or the floor would never know that the process was different. The outcome is the same. It was done and done well.

Having chronic pain does not make me any less capable. It causes me to think and do outside the proverbial box of the established. I can decide I cannot do something and give up or I can find a way to get it done and move on.

I choose to move on.

It’s this that pushes me every day to continue reaching and striving. I may have to rest more often; some things may cause me pain but I push. My dreams and hopes are not built on shaky ground. I believe that with God all is possible, even in the midst of chronic illness and pain. My process will be different, my path may be longer and more complicated but I will get there.

So, to all those of us who sit and cook, do the dishes, sweep and mop. To all those of us who have had to reinvent and redefine and recreate ways to get the day to day done. To all those of us who create a new normal and walk in it. I say: Keep on keeping on!

Don’t ever give up!

So weak…………………sigh

sam_0270I am so tired right now. It seems like tired is all I know. Weak is what I feel more than anything else.

Today I left home for a bit. I took my daughter to the orthodontist, left and made a stop at the bank and then to the grocery for a few minutes. All in all I was driving for about an hour and walking for probably 80 minutes.

Truth be told, when I left home I wasn’t feeling even 70% but life goes on whether I am well or not. I was in pain, but not horrible. Everything went well until I got into the grocery.

Tomorrow is a holiday so there were many more people than usual shopping, the stores here will only be open again on Saturday and then not until Tuesday. I guess people were stocking up. Me, I just wanted to grab 5 things and get home.

I got the items and then moved to the cashier and joined a line. There were probably 10 cashiers open at the time but the lines were all long. By now I had been standing and walking for about 20 minutes. As I stood waiting to reach the cashier, I just felt worse, the pain got worse, my eyes grew a bit dark. I grabbed the trolley and just started to pray…”Lord don’t let me collapse in this place! Please don’t let it happen!”

I stood there sweating and praying, praying and sweating………..and hoping that I would make it. I even contemplated leaving the trolley and just going home. By now I was next in line but the pain…..it was blinding.

Thankfully, I made it through the cashier and to the car. The issue was how to get home. I live about 5 minutes drive from the supermarket but when I sat in the car I could not move. My daughter just sat there patiently waiting- its amazing how accustomed children become to these types of occurrences- until I lifted my head from the steering wheel and turn the ignition. Another 5 minutes passed before I actually put the car in gear and moved off.

We made it home, on no strength of mine. It was all God. I know that beyond a shadow of a doubt.

That episode upset me though, have I too become just resigned to this? How could being away from home for 2 1/2 hours tire me to that extent? I used to be able to shop for an entire day! I mean really shop, not make two stops and go home.

Thing is I was too exhausted and in too much pain to even be frustrated. I came in the house and went straight to bed. Just another day where the children would find something to eat on their own.

Its depressing, how little I am able to do right now but I know this is not forever. I may be weak now but I know God isn’t and He is carrying me from day to day.

Yes, today was a setback, not necessarily physical but psychological. That’s all it was though. I am going to be able to exercise soon and I will eventually regain my strength. I have no idea if I will be able to run as I would like or push as I will like but I know for sure things will get better than this.

I trust that morning is coming…..the night will soon be past.

 

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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………... 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.

Surgery on the horizon: bittersweet decision

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I finally had my appointment with the surgeon last weekend. Over the past few months I have been back and forth to my GP, the hospital, OBGYN and finally the surgeon. My last visit with a doctor other than my GP didn’t go very well. I wrote about that in Dear Doctor from yesterday 😦 . That visit was horrible. However, he did give a referral to this surgeon who specializes in Laparoscopic surgery. I really don’t want a large cut. I had that with the hysterectomy and it took sooooooo long to heal. I don’t want it opened again if I can avoid it.

I went to this surgeon and the visit was as far as night from day when compared to the last one. The appointment was at 8:40 a.m. I arrived a few minutes early and was immediately ushered into the nurse’s office for the urine, blood pressure and weight checks. The doctor came and ushered me into his office shortly thereafter.

I spent probably 30 minutes in his office with him. We discussed the referral from the previous doctor and then he put that aside. He was interested and invested in just listening to me tell my story. He took a comprehensive history of all my illnesses and medications, not just the pelvic issue related ones. He took the time to hear and see me. It was the most relaxing conversation I have had with a doctor, outside my regular doctor, in a long time.

We then spoke about the examination he wanted to do and why. He left me in the office to speak with the nurse and then ushered me into the examination room with the ultrasound machine. He took the time then to talk to me and ensure i was ready for the exam and then proceeded to do the pelvic exam. It was very uncomfortable but not painful. As usual it was most painful on the right, also as usual there was nothing “abnormal” about my examination.

After this was the trans-vaginal ultrasound. Again uncomfortable, but not painful. He concluded the examination and left for me to dress. He then returned and ushered me once again into his office where we spoke for just over half hour.

The ultrasound revealed that my left ovary appeared normal in size but for whatever reason he was unable to see the infamous right ovary. Trust me he did look and probe and probe. I actually asked him if something was lost while the exam was being done. It just seemed like he was probing a bit too much. However, the ovary couldn’t be seen.

Food for thought that is. Not sure what there is inside that could be hiding the ovary. Time will tell.

The doctor suggested that I go on a course of treatment with GNRH agonists. These would put me in a state of menopause. If the pain decreased then we would know for sure that the extra pain that I’ve been experiencing is due to Endometriosis. If it worked then I would have to use it indefinitely……..in reality more than 10 years.

The good thing about the visit was that although an OBGYN, he didn’t discount my Pelvic Congestion Syndrome diagnosis. He accepted that it exists and rightfully stated that there is still a lot of unanswered questions as far as PCS diagnosis and treatment is concerned.

He also accepted that surgery would help in determining and hopefully fixing the problem or at least alleviating the pain. I decided on the surgery, mainly because I had done the hormonal treatment before and it had not changed anything.

We put the wheels in motion for the surgery. I did the blood tests, made the appointment to see the anesthetist and sent the quotation to the insurance company. Due to the doctor’s schedule I will not be scheduled until May. I don’t have the date as yet but its better than nothing. I see the doctor in two weeks.

This decision is bittersweet to me. I am happy that there is some progress and we are going ahead. I am afraid though, that this op may change nothing. I am afraid to hope……….yet I can’t give up hope. Its all I have sometimes.

I accept that things may remain the same. That is the risk that I take. I am going in for an Operative Laparoscopy. While I am under, the surgeon will determine what is to be done. If Endometriosis is seen or any indicators of it they will be excised. The adhesions that are suspected, if seen will also be dealt with (this is a catch 22, this op will also potentially lead to adhesions). I also go in with the understanding that depending on what is discovered the op may be converted to open surgery. I’ve no control over any of this.

Yet, I am at peace with my decision. Like all else before, God and I will get through this together. He promised, and I trust His promises explicitly. This will get better, this too shall pass.