Painsomnia x 10

03ee38f1975521f2744a718f7a3dc10aWhat I would give for a good night’s sleep!

These past few days have exceeded my expectations once again as far as the levels of pain and challenges I have experienced goes.

Last week I had this delusion (will have to call it that now because that’s apparently what it was) that I was going to be able to just set this house/ life in order in prep for my surgery on Wednesday May 10. Well I wrote what happened on Wednesday last week in Thankful for friends who stay.

I never mentioned the blacking out from the pain- good thing I was in bed. Neither did I write about the doctor coming to the house on Thursday and setting up the IV- I was at my wits end- actually I haven’t said much because it has just been too much for me.

Since Thursday I have gone to bed each night with the absolute maximum amount of pain meds in my system that I am allowed outside of a controlled environment like the hospital. Each night I have tossed and turned. Hubby says I was groaning- I’m not even conscious of that. The pain has been just constant.

Really, in the dead of night, there’s not much that can be done. Well, that’s not completely true; there’s loads I could do if I were  not in pain. I can’t exactly engage hubby in conversation …or anyone else for that matter. Most people are asleep. To be honest though, even if there was someone to talk to I probably won’t want to talk anyway.

So I tossed and turned; sat up in bed; sat on the end of the bed; got water; sat in the chair; went from side to back to tummy to side…..just made it through the night with little snippets of sleep.

While all this was going on I was wondering how many others are out there just tossing and turning and praying for morning to come?

I decided to look at it this way: This is the last pain before the ease that will come with the surgery. I fully believe that life will be better after.

So, on Wednesday I go in for an operative laparoscopy. The intent is to deal with adhesions- separate the ovary from the bowel, excise endometriosis, deal with the cysts in the ovaries and remove them if need be. Time will tell what actually is done.

I look forward to the sleep, a full nights sleep.

This is my last post until sometime thereafter when I am able to sit up enough to type. Until then I keep on keeping on and continue believing that just as my sleep is around the corner, so is morning.

Joy comes in the morning!

 

Thankful for friends who stay.

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I woke this morning late, bad sign. I was in pain. I struggled out of bed to help the children get out of the house but things were bad. I just took some meds and went back to bed.

Before this, I messaged my doctor and let him know what was going on. Said I would give it two hours and get back to him.

This week I had planned to get some cleaning done, change the curtains, clean the windows etc. in preparation for the op next week. I wanted to do this because I really have no idea when next the house will be cleaned to this extent. I have no funds to pay a housekeeper and I’m not sure when mummy can come and help me out.

So, back to bed I went. A friend had planned to come help with the cleaning but even before she could arrive I was dozing. I sent her a message telling her which door was open and what I was planning to do.

My friend arrived and started to work. She removed all the curtains, cleaned all the windows, dusted, swept, tidied and cleaned the entire day. Also, in the midst of all this, she cooked a huge pot of soup for my family and made sure I ate some. I just stayed in bed. I only got out of bed to use the bathroom and take my meds.

She worked for 9 straight hours; from 9 a.m. to 6 p.m. This is no small favor. She did it all simply because she loves me.

Living with the unpredictability of Pelvis Congestion Syndrome and Endometriosis and not knowing from day to day, sometimes minute to minute how things are going to be makes life difficult, to say the least.

Many good acquaintances have exited my life over the years. If I count my friends, I don’t make 5. That’s not a bad thing really. Its hard sometimes for me to be a good friend in all of this.

Friends who stick with me are treasured. I value this sister who was here today more than I can say. Its hard for others to be around me, especially when I am in pain. I withdraw, shut people out and sometimes push them away. I thank God for those who stay.

So sis, if you are reading this; I am ever grateful for your love and your friendship. Thank-you for being there for me today. Thank-you for cleaning the house and letting me sleep all day long. Thank -you for taking care of me. Thank-you for listening to me, always praying for me and always being there.

I love you!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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!

Embrace the stretch…

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Just yesterday I wrote about The Space I’m in….. This was about embracing and accepting where I am on my journey with Pelvic Congestion Syndrome and Endometriosis. It was about dealing with those things I cannot do right now and not stressing.

Today I had a reminder of that….how hilarious it was.

Yesterday I wore a pants at home in the evening for probably an hour and after I had my shower this morning I took the same pants to wear. I proceeded to pull the pants up and attempted to zip it. The zip came about 1/5 of the way up and ran back down. I tried again and the same thing happened. When I looked down I realized that my belly was getting in the way and the pants could not be zipped closed. I started to laugh.

I laughed so hard I had to sit down. It was immediately distressing and hilarious……….most people won’t put those two things together but I did in that moment. In my head it was better to be laughing…….really laughing…………than crying.

I was reminded of one of the best pieces of advice my doctor ever gave me. He said “Lyn, embrace stretch fabric.”

Now I am sure that you have heard of the endo belly and I have written before about PCS causing my belly to swell to the point where I can be mistaken for 5 -6 months pregnant. So combine the two.

I must say when I got the piece of advice I was taken aback but I took it and ran with it. Good thing I did. I slowly started converting my wardrobe to stretch items or to styles that accommodate a big tummy.

 

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Faux wrap

I sewed several peplum and empire waist tops and dresses as well as a few faux wrap pieces. I made sure that anyone who ever purchased clothing for me knew that I preferred stretchy stuff.

 

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Empire waist

I even looked for pants and skirts either with stretch fabric or at least the waist from stretch fabric. Right now I would say probably 90% of my wardrobe has been converted.

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Peplum

In the whole scheme of things, being frustrated over clothing is one worry I could do without. I had days where zippers threatened to burst and I had to pin between buttons and that was extremely distressing. Embracing the stretch fabric has removed that stress from my life.

At the time it seemed like giving in to the conditions but now I know its more working along with the situation. Its just like converting to flat shoes – but that’s tomorrow’s blog :).

The pants today was a pre – advice item. It reminded me of how much my life has changed but I was also reminded of how much I have grown. A year ago I would have been weeping. Today I just laughed.

Maybe that’s the secret. Some things, when we embrace them and work around and along with them; its the best fight against the diseases we can give.

It says “you can’t bring me down…..I’m flexible like that”.

Embrace the stretch!

 

 

 

 

 

 

 

 

 

 

 

 

 

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!