Monday, December 20, 2010

Christmas has always been magical my whole life. There is something peaceful and joyous about the time, special and happy. It's not about gifts, but it's about the time, basking in the lights of the tree, the music - the more rediculous and fun the better and Christmas Eve is my favourite over Christmas Day, possibly because that means it's almost over. Yes, I have mistletoe tattooed as a tramp stamp. I had to do that.

This year means so much more to me. 

Last Christmas I don't remember at all. I do remember that I couldn't do anything for myself, I had to stop working so suddenly. It has been a year since I've worked, gone grocery shopping, checked my mail, cooked, drove my car. It was a very scary time. I remember feelings, but not events. If I think about it too much it really is very surreal.

I was not expected to make it, let alone to make it now, a full year later. My PT also didn't think I could make it when he first met me.

I've had to relearn how to do so much, eat, swallow, hold things, and there are still so much that I cannot do. I still can't drive, work, check my mail, but I can eat once or twice a day, I am continuing to adapt and learn how to adjust to do everything and everything. I am slowly getting stronger. 

I'm not sure how I did this, how I came back to life, how I continue to fight, yes, I can't do much of anything, and the constant insane pain never goes away - but somehow, I keep waking up despite it all.

My love and sincere thank you goes out to my family that is taking such good care of me, and my friends south that take care of me for the winter. You have brought me back, you have made it be 'okay' even though I am so so sick. And a thank you to all my friends that are in my life everyday, make me laugh, be silly and have reason to not wilt away. Thank you for the donations, honestly that has been helping pay for what I can't manage to do medically. 

As tough as this is, and it is daily hell, I have so much to be thankful for.  Thank you all for being there, and making light out of the darkness. 

I have no idea what will happen, but I hope as I continue to get stronger, and continue to keep fighting to stick around this joint as long as possible. I don't wish my past year on anyone. 

I'm here to make new memories to make up for the scary ones last year.

Merry Christmas and happy holidays know matter what this season means to you. It means love to me.


Sunday, December 12, 2010

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,'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.

Saturday, December 11, 2010

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,, 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.