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!

The Storm Rages

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

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

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

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

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

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

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

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

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

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

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

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

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30 Day Chronic Illness Challenge- Day 17

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How would things be different if you weren’t ill?

I thought about this one for a while. Its difficult to imagine life without illness but I will return to the time when things weren’t this bad although I was still ill.

In terms of my family I would do more with them. Most times I have to absent myself from outings and activity because either its too much for me or I know I will not be able to stay as long as they will want to; so instead of ruining their fun midway I just don’t go. So, I would be more present in their lives…………especially the children.

I would run. Just run for the feel of it, for the fun of it. I would exercise regularly. All the aerobics and swimming and running that I no longer do because of pain I would do. For sure I won’t take the ability for granted.

I would have my house under control…………..at least a bit more than the general out of control status it holds. I am not a neat freak or an “every surface constantly sterile” person but I would have it together.

I would generally do more, more with family, more with friends, just more. Its difficult to put into words. I think I would be more fun loving and carefree as opposed to ultra cautious- I won’t be careless- but just enjoy life and activity more.

Professionally, I would have been further in my studies. Since education is expensive and illness is expensive; I would have had more money to spend on the education earlier.

On the subject of money, I would not be in the amount of debt that I am in simply because I would not have the medical bills- doctor visits, medications, tests etc. that I now have on a monthly basis.

On the other hand I would like to think that I would be as empathetic and caring as I am now even if I weren’t ill. I know that a large part of who I am now is as a result of the experiences I have had. I don’t know if I was never ill if I would be the same person I now am.

I can’t say I would be happier because I am happy. I would say I would be less frustrated and less angry at times.

Life would be very different. Chances are though if I had all that and had not been ill, I would take it for granted. If I were to become cured and no longer ill I would treasure each moment because I know what the other side is like.

 

 

 

 

 

 

 

 

 

 

 

 

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.

The “Calm” before the storm….

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I wrote a few days back about being in a downward spiral and feeling helpless to stop it. Right now I feel as though the spiral has slowed but intensified- just like a hurricane that slows down is building strength and will be more dangerous when it reaches land.

Since my visit last week with the surgeon and the next day appointment with my doctor, well actually since the meltdown and IV meds the week before that things have not really improved.

True I am not in pain at level 10 anymore but it is not going below 6-7 either. Most times I hit 10 and have to go in for emergency relief, things get better for a bit. The pain levels drop way down to 5 or below. I feel as though I could have a few “good” weeks without having to go into the office or emergency for help. As if the pain can be managed with my meds at home alone.

This hasn’t happened in this instance.

Over the past 7 days I have been in pain at a constant 6.5-7. In the midst of this has been hours of pain ranging 8-9 where I just had to stop doing everything and stay in bed. I have been home from work and have had the opportunity to rest. I have not been trying to do much of anything at home.

On Friday, I decided to put some clothes in the washer, mainly my stuff because hubby and children do most the laundry anyway. I got the basket down the stairs- no problem- and put the clothes in and set the machine going. There was food from the day before so I didn’t have to cook and I just left the house as it was (no cleaning) and went to rest while watching a bit of television as the washer ran.

When it stopped, I went back down the stairs to hang the clothing on the lines (most people in Barbados don’t have dryers and if they do we usually hang clothing on lines to dry because its generally hot and sunny here).

I don’t know if it was the reaching into the washer to get the clothing or the raising my hands up to hang them but I was instantly dealing with some sharp pain. Being who I am I gritted my teeth and decided I would get the clothing hung regardless of the pain.

This is just one example of the week  but all week long I had situations like that. I have increasing pain in my back and pelvis with full bladder or bowels and after emptying either. Walking is an exercise in pain right now…………actually any movement is. I have difficulty sleeping because of the pain.36f0cbd188f1591a57846d6368ebcf67The past few nights I’ve just rested my head on hubby so he could hold me and offer some comfort as I lay awake-obviously this means he is not sleeping either.

Its almost as though every pain has been magnified since I’ve been home. The pain is not reaching 10 but dancing by and then jumping back. It’s scary.

Emotionally, I am on edge because I can feel that the worse is yet to come. I am not trying to be pessimistic, rather realistic. When you have lived with illness for so long you get to know certain things. I can feel the decline in my body. I feel weak both physically and emotionally.

Its as if all of me knows that something I would rather not deal with is around the corner. Yet there is nothing more I can do to prepare.

Just like a hurricane warning………its given, we secure the house as best we can; raise the refrigerator and freezer temperatures to the highest to preserve the food longer in case the power goes out; we pack go bags in case we need to leave the house for a shelter; make sure everybody has water, canned foods, non-perishable stuff, medications; then we wait. After we have done all we can, we wait, praying it will pass us but prepared for the worst.

I am waiting now. Trying to go about my day, doing what I can, when I can, resting when I must. Dealing with the pain as it comes; taking pain meds as prescribed and just waiting.

I feel as if I think about it or talk about it too much I will break. If I break there will be no putting me back together soon because I am spent. Yet I continue….I just do what I can when I can……………..and I wait.

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.