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!

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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.

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- Catching Up- Days 18-20

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18. Do you think you have become a better person through illness? Explain.

Yes, I am definitely a better person as a result of being ill. I was always a generally empathetic person and sought to consider the feelings of others in everything I did; this is probably what guided me to my profession.

However, I have found that illness has given me another level of empathy, a deeper level; one that can only be reached through this type of experience. This has made me a better person, it has also made me a better Psychologist.

'I see a bright future, a transformation: Beauty, wings, elegance...'

19. How do you feel about the future?

I am very optimistic. If I am honest I would admit that sometimes I get down to the point where I can only see directly ahead, the next minute or hour.However, I also see God just setting me up for greater things.

Many plans and dreams that I have had and held for years, in some instances even doubted myself; I see falling into place. God has opened opportunities and caused me to meet people and make associations that are directly needed to fulfill these same dreams. Avenues that I didn’t even know existed have opened before me.

It gives me hope. My future may not be totally pain free or disease free; but I have a future…..and it is bright!

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20. Have you met anyone with the same illness? Did it help?

I have met numerous women with Endometriosis but I have not met anyone in person who has Pelvic Congestion Syndrome. I guess this is because it is relatively new and un-researched. I think PCS is also misdiagnosed and under- diagnosed; while Endometriosis, although enigmatic is a more common diagnosis and to some extent better understood.

Meeting these ladies whether in person or online has been encouraging to me. I felt as if I was alone for such a long time. Although it hurts to hear their stories and I cry with them it is comforting to know that others are fighting with me.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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 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.