I'm Broken, Yet Still Me.

In the same topic as yesterday's post, the following are points that are helpful for those of us dealing with chronic illness. The points are sourced by Author Unknown, but I have seen it on many sites. I have decided to add my own points under, as I have in the previous post. As always, comments and thoughts are welcome. All I know is my experience.

1.   Remember that being sick doesn't mean that person is not still a human being.

This I do struggle with often. I am so dependent on others that it is hard to think that I have an opinion, and I am guilty of not treating myself as someone that matters. Being out in the chair, people look at me, and I am still working on what kind of etiquette I am comfortable with. I appreciate being spoken to, but please try not to help by grabbing the chair unless you ask, it's just so much pain. Because I am in a chair doesn't equate to having no feeling in my body, it's quite the opposite. I do still have a working mind - usually - and yes sometimes I have to say "I need you to think for me". I'm still me even though I am broken.

2.  Recognize the difference between "happy" and "healthy".
As mentioned in the last post, I'm not healthy, but I make efforts to try to do things, that make me happy. Laughing, music, friends, people that I care about and really care about me, that know me for me, and not just my illness. Many people I have lost, but others I am close to only have known me ill, but I'm still able to be happy. It doesn't take the pain away, but it helps my soul.  
  
3.  Understand that being able to stand up for ten minutes doesn't necessarily mean they can stand up for twenty minutes, or an hour.
This is something that was very hard to grasp. I was frustrated at being able to do something, then not. I cannot stand for 10 minutes consistently, and if I walk without holding onto the wall once, that is about my limit. I can stretch one day, but not after. Sometimes I have to sit while I brush my teeth, sometimes I have a hard time holding the toothbrush. There is no predictions to this, and it does require patience, including from myself. Sometimes I have forgotten how to turn on the car, others I couldn't figure out how to open the door. It's cruel, but it happens. 

 4.  Repeat the above step substituting, "sitting", "walking", "thinking", "concentrating",  "being sociable" and so on, it applies to everything.

 5. Realize that chronic pain is variable. 

6.  Know that "getting out and doing things" does not make the pain vanish and can often make it seriously worse.
Sadly true. However it helps my soul. I love when people offer to come over, it helps me be home, and is so kind for people to ask to come visit, or to help out a little bit. I love love love going out, but it's just not possible without a to-do. Going out other than to a doctor's or a hospital is wonderful and I love it, but also I have a fear or placing more burdens on people and it is taxing on the body. Luckily I have time that I have to to spend back home, in bed. It's a fine line and again hard to not just be able to go out, forget doing things.   

7. Understand that if they say they have to sit down, lie down, stay in bed, or take these pills now, that probably means that they do have to do it right now, it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something.
 When I hit the wall, I hit it hard. I get no warning, no migraine-like auras, it's horrible, then BOOM. Shutting down happens and I'm done. I tend to try to push it, and I know I shouldn't.

8. Don't suggest cures. I do appreciate the suggestions, but often I have done research and if I could try something I would. Usually if I haven't, there is already a reason in place, due to costs, side-effects, and I cannot take standard pharma meds. I have alot of limitations. Sure, if I could take 42 pills a day and manage 'fine', yes I probably would do so. There is a reason, please ask if I have heard of something, like the new 'miracle' Benlysta, but again, there is a reason why I can't. I'm not just being difficult.

9. Don't be put off if they seem touchy.
Pain hurts. Imagine how you feel with a headache or a flu, miserable right? I am not comparing my everyday pain to a headache or a flu, but it's the closest thing I can try to compare to. Sick, pain, miserable, frustrated...it's all serious. I do try to mask it, not bitch about it, the fact is - I am in a very severe part of the sickness, it's quite alot more advanced and happened very fast with me. Sometimes I can't get enough snuggling, sometimes, the slightest touch sends me to screaming and tears. I have no way of knowing. It just hurts - all the time. There is zero break, and zero times do I ever be pain free.

10. Be helpful.
And thank you for that. As I've said, I need help with very simple things. I want to do everything for myself, but I can't. It's very humbling and a loss of alot of dignity. Thank you for being patient and helpful, I cannot do the big deals like taking myself to the doctor. Any little bits of help, and that includes asking how I am REALLY doing, if you don't want to hear, don't ask. I am not one to bitch about it much. Yes it's overwhelming, and I want to help you, I want to help you as I used to do. I want to be independent, and more than anything, I don't want to leave it to others. I just can't.

Thank you as always, for reading, sharing and I hope there might be some gems in here to help. I'm still me, I'm just broken. It is hard to stay positive, I try my best. Feel free to ask me anything, it is a very hard and confusing struggle for everyone involved. Thank you for taking care, and being still kind to me. It helps me stay strong and try to fight.

11 Thoughts

 This flu is kicking my ass this month. I have been thinking alot about words or phrases that I find very hard to hear, and compiled a small list that are from some other chronicillness.com, bydls.com, thelupussite.com and to see if it's just me being dealing with extra epic pain, and all the troubles that comes with having a flu when you are immunocompromised. Perhaps you will agree, or you will have other ones that you hear that you wish to share in comments. I'm very blunt, so a warning if it is read harsh, I don't mean it to come across that way.

11. You’re never given more than you can handle.

Then I am one damn strong woman. That is like saying things happen for a reason, that there is something that I did to piss off the universe that much to be a good person, working very hard when I shouldn't and I'm even the kind of person that blocked traffic so a family of ducks could cross the road. Oh but I'm sick now because of some vendetta someone had against me so I deserve it.

10. You can’t be in that much pain.
My auto response to this is, 'how do you know how much pain I am in. Since when is this a competition? 

9. Stop being lazy and get a job.
I'd love to, do you have the magical cure so I can? It makes me truly sick to see people work the system. This is why there are so many hoops to jump now for those of us legitimately ill. I've worked many jobs at once, and usually 6-7 days a week most of my life since I was 14. I took pride in my education both physically and academically, and by the way, no I am not on social assistance of any kind now, I have zero income and not on government support. 

8. You just want attention.
And you want to be an asshole. Think about this, why would anyone wish this kind of life for themselves? To be in severe pain where nothing works, life every minute is a struggle. If I want attention I will paint myself blue and stand on a street corner downtown. 

7. Your illness is caused by stress.
It is possible and probable that it was triggered by some kind of trauma, but we don't know. Thank you very much but I'm not going to be cured by rainbows and unicorns and waterfalls as much as they are pretty. Don't get me wrong, my purple unicorn pillow is very comforting, but I can't meditate the sickness away.

6. No pain…no gain!
Bullshit. Nuff said on this.

5. It’s all in your head.
Don't I wish? Again no amount of positive thought will help this one. Trust me I have a very good imagination but I never ever thought I would be like this.

4. If you just got out of the house…
You're telling me! I'm the girl that talks to anyone, anywhere, and even to things. Keeping a social butterfly down is hard work, but I can't make it to my elevators by myself, so going outside is something that I cannot do without a major production behind it. 

3. You’re so lucky to get to stay in bed all day!

Yes I am. The risk of blood clots, the atrophying muscles, the low blood  pressure, the pain of clothes, and even blankets and the odd stiff breeze. You got it sherlock!

2. Just pray harder.
I do thank those of you that keep me in your prayers, it does mean alot to me, however back to the what-have-I-done does not apply. I am not being punished because I perhaps have a different God than someone else. I am spritual, I have my own way of keeping people in my thoughts and pray in my own way. I don't judge (most) people on their religion, but I also keep in mind the 'so mote it be, ain't it harm none.' This should be something for everyone to do.

1. You LOOK so GOOD!

 Thank you? No really, I do thank you. Because I may look well, I am really not, and I understand how hard that is to grasp. Also going back to laughing or being happy a little, I do try to be happy and positive when I can. Yes this pain is severe, overwhelming and over this year I have had to relearn how to do alot of basic things. The looks I get when I'm in the chair go from pity to almost excitement, but I don't have casts, I don't have any tells, except for the butterfly rash. 

Thank you, I do want to still be pretty as my body is a monster inside.

New Year

Thank you for the amazing birthday messages. I'm the luckiest girl in the world. 

This birthday is very important to me. Not just because it is a special day, but it is a very mind blowing one.

When I was little, I never thought I would make it out of 36. I have no idea why or where this possibly started, but I was convinced that at this age I wouldn't get past.

It's now 3 hours past, and I am 37. I made it. 

I thought many times this past year my prophecy would ring true. In the hospital last Christmas, I thought that was it, made my peace and was ready to face the end, if that is what would take me.
 
Somehow, I fought. I don't know how I do this, but I just do.

This birthday is epic. I made it. 

I thank you all for helping me fight, I surely wouldn't be here otherwise. This is know is true. 

I've been terrified, which doesn't mean giving up or giving in. It means that I am just a person. 

Everything, as little as it is, is a new accomplishment. This year, I do feel as if I was having to relearn how to do anything - eat, breathe, walk the little that I do, fight for what is right and what I won't put up with.

I might be coming back to me. 

I thank you for the love, the support, treating me for who I am, not what I was, and feeling sorry, or leaving me. People I loved have left me, and that is okay. Perhaps I should come with a warning label now.

Love me or leave me. Thank you for loving me. This birthday is more than a birthday.


I made it.

Getting Stronger, Inside and Out

A week ago I was able to start physio.  This has been possibly the best breakthrough I have had to date.

I first met my physiotherapist when I first got back, and there was nothing he could do for me, as I had no strength to stand, let alone open the fridge door, turn on faucets, and barely lift the toilet seat lid.

I've gained some weight, I can function very very very basically on my own, just at home except for cooking, yet opening my front door is still a bit of a challenge. Once I leave the apartment, I need help with everything.

My PT started with some basic stretches, and he remarked at how flexible I still am, despite the pain. He started me on a plan, with reps and to progress and increase them. I exceeded this on the first day. 

I have been doing these, with increasing reps - and adding resistance and including some core work - just abdominals so far. Every day, and part of my exercise is to bring my laptop to the living room, where I can  do my physio on the couch. 


Yesterday was my second visit, as he will be seeing me every week. He was again pleased with my progress, and with my ab work, and gave the okay to continue, I am attempting to increase this by 25 each day. He even said that I could gain 20 more pounds and be perfectly in range.

The other day, I noticed my hip popped out, not a dislocation, as I'd be screaming, no doubt, but it does hurt and my knees are out of alignment, starting from my hip. It is burning and sharp, but in comparison to my usual pain, it's nothing really.  I have a twisted wrist, but that is from just trying to sit up in bed, not physio related.

My new section is to increase what I have, and including strengthening and adding core now, even for my back, but I can still do that lying prone, as I can't lie on my front at all still. 

It is hard not to compare what I used to be able to do as a dancer, but if I think and compare from day to day, I am thrilled with how I am doing. It feels so good to move, and it is still limited, but I'm happy that I am able to lie down, pull one leg up, and my knee comes to my nose, like a reverse split. That is a different pain - and one that is welcome.

This is so exciting. I finally feel like I am accomplishing something real, even though to normal people it is probably nothing. I have something to look forward to everyday, and everyday I am feeling myself change. 

I even can walk down my hallway without needing to hold on to the wall half the time. I still need all the aids from my Occupational Therapist in the apartment, and I still can't stand in the shower, or cook, but it's the little things, that are really most important now.

Yes I have lost so much of my life, and this is new life as I know it. And for this, I am thankful of the support and I am proud that I still have that drive that I used to. 


Perhaps I really am still a fighter...

Love Beats Hate

Love and hate are powerful things. Seems like those that hate, get ahead. I don't understand why bad things happen to good people and the haters keep going. 

It's too bad we need a 'day' to express why love beats hate, but it is important to remember why love is better.

Most people want to love and be love. I cannot fathom those that live and thrive on negativity, especially over the small things. Stupid drivers, stupid people working at drive throughs, stupid machine made coffee too hot, and on and on.

I've always been the 'nice' girl. While I don't have long left here, it is becoming more apparent that I will not put up with hate. I am usually patient and put up with alot, but I can't give in and be nice to hate. Cheesy yes, but life is too short to live that way.

The kindness and love that I surround myself with, surprises me everyday. I will not tolerate anything less. Hate tends to make the world go round. 

It needs to be love. We all can learn to live with love and kindness, don't hate the haters, just don't play the game.


Love not just for today, but for always. Reach out a little more, let this jaded world be, and embrace love. 


Love beats hate, lets keep it going. Who's with me?


Thank you to those that have reached out to me, loved me sickness and health. 


Really does mean the world. 


Love love love.
 

The HorribleNoGoodVeryBad Tests

When nurses, techs, doctors are honest when things could be hard, I much appreciate it. I would much rather honesty then sugar coating.

As was the case with today's tests. I woke up at stupid o'thirty and went in for Arterial Brachial Pressure and Peripheral Arterial, the second part to last week's DVT. I knew from research and talking to medical professionals this would be a tough day.

I wore the super-fly paper dress, and again, remembered real underwear. My technician was a bit brisk, but she became very kind and explained everything as we went. She told me it was tough, and will take over an hour. 

She started by putting blood pressure cuffs on my arms and legs, and attached a mic and wand to each cuff, and started the tests, lots of squeezing and pressure, and release, repeat. The machine recording the the test was so loud, and quite disconcerting. And it hurt. I try to think I am strong, but when air hurts on a good day, this sent me flying. I concentrated on trying to breathe properly, and let her do what she needed to do.

She took off the cuffs once she asked me if I prefered, normally they keep the cuffs on the entire time, but I was thankful that she took them all off for the remainder of the time. Similar to the DVT tests, she followed my arteries from my groin all the way to my calfs, searching for my arteries and anything abnormal. This hurt. The pushing by my knees and on down was very tough. When the machine stopped making noises, I tried to not worry what that meant, as the bed was raised and lowered the entire time. She had trouble finding my lower arteries, but she said that was because I was so tiny, so everything was tiny. She just said that was how I was made..it was kind of endearing when she smiled at me so warmly.

With a towel she helped me get the gel off, and to sit up. I was terribly dizzy. Good news is there are no evidence of clots, however the possibility is that my arteries and veins are seizing. She also mentioned the potential of MS on top. I needed help to get dressed, and home to sleep. 

I am currently in so much more pain, than the usual horrible. I need help with everything. This is my body in some kind of shock after being in some kind of trauma. 

This may take weeks to get over. Thank you everyone that sent me love and well wishes today, it helped to try to stay strong to get through it all. 

Someone you love and know has lupus, and it is made better by love and support, to get through every day.  

Strong Butterfly

Today was the DVT test, woke up early and despite my fears and 'what-if's' and being awake in the real early morning, I wasn't even cranky.

Being super packed the night before helped, and of course my favourite red hoodie and matching flannel PJ pants, like hell was I going to wear real clothes out. Besides, my transfer chair is red too.  I tried my old hiphop shoes too, and being split soles, they were such a help. Didn't take the pain away, but I had more control and felt somewhat good (in comparison).


Checked in to the hospital 30 minutes before the test was scheduled, and as promised I bypassed triage completely.  I was then taken to the waiting area for the testing and imaging units, and I was grateful that it was small, and curtained areas. 


My tech nurse was quite nice, but she started by saying she couldn't do my tests. I felt my eyes start to well up and felt a bit of hopelessness come up. I asked her if we could do the DVT at all possible, because I didn't know what else to do. She agreed to that, but clarified the other two tests on the requisition were not able to be done there. Such a relief, as those tests are booked elsewhere on November 10th. 


I was decked out under my PJ's in some of my old dance clothes which helped so I could stay a bit warm and still not be in full undies, since I don't know how much is shown to the world. 


She gelled up my left groin first and asked me about pain, since she had to press quite hard with alot of force. I told her that I might cry and gripped the bed rail. I think I bit off most of my chapstick during the test.


The pain was tolerable till she got to my knees, and pushed hard underneath and with her hand pushed down on my kneecap, and followed the arteries down to my achillies. This was the toughest and searing pain on top of my already searing pain. 


Still no real tears.  She repeated the same on my right leg, I continued to bite my lip hard, grip the bed rail and tried as much as I could not to jump. 


The final part of the test was sitting up with my legs hanging off the edge, one hip more in front than the other. As soon as she was done, she helped me to get the gel off, and she said I did so great. I really appreciated that so much. 


She told me the results would be to my doctor in a week, and I took a huge breath. I have been terrified of the worst. She said quickly that there was no sign of any clots or PE. However, I'm not supposed to know this until I go to my doctor for the details. So nothing conclusive as to what it is, but at least one more thing that it isn't.


This is when the tears started. I was shaking, but not Oprah-Ugly-Cry.


Fell right into bed when I got home, and slept for a while, had a visitor and slept some more. I expect this will take days to get over, as my knees are now twisted and my muscles are screaming, and somehow my ribs feel even more popped out than usual.


I'm relieved, and this is over for now. The next major tests are still coming, and this will be another tough and longer ones.


Again, thank you for sending the love and support, and to my friends for updated and being my voice when I couldn't do it myself. 


Loves, here's to no clots. Time for a glass of wine, it is a blood thinner after all.