8.24.2011

Dear Fiby...

I feel a flare up coming on. My stress has been through the roof (which honestly isn't out of the norm as I stress rather easily) and I'm probably pushing myself to do too much. I have a habit of pushing my limits. I guess this is my stubborn nature. I don't want to let fiby stop me from doing anything. However, the way I'm starting to feel and know what this feeling usually leads to (complete agony); I should probably listen to my body and pace myself.

I'm not really looking forward to what the next few days are going to feel like. The stiffness is settling in, the sensation of burning liquid is flowing through my veins, my brain isn't allowing thoughts to process or words to flow freely, and the exhaustion is taking over. And this is just the beginning! I just hope it doesn't last long because I've got a life to live and fiby is just going to have to get over being an attention whore.

I could really go for a hot bubble bath followed by an extremely attractive gentleman massaging me for hours...


8.23.2011

Dating cycle...

This is how the cycle works: Clingy is addicted to me, I'm addicted to complicated, rinse and repeat!

Ok...so a month or so ago I was venting on my addiction to complicated. Now I bring you my vent on "Mr.Clingy"!

Mr. Clingy is the majority of any "relationship" (few week fling is more like it) I have had in the past six years. This is the guy that wants to be around me 24/7 and the one that I generally treat like shit. Not on purpose. It's more of a knee jerk reaction for me.

It goes something like this: I meet a guy out and they seem pretty decent, actually hang out or go on a date, date is okay, guy proceeds to call/text frequently, I ignore majority of calls/texts, I don't mind the attention so I hang out with guy again, guy becomes even more persistent about hanging out, I get more annoyed and each time I see guy something new bugs me, my sarcastic behavior increases, guy doesn't back down, now if we hang out I get very tense and in my opinion send all the vibes of "I'm just not that into you", guy continues to want to see me, and it ends by me telling the guy I think you should keep your options open.

The guy I'm currently talking to falls right into the Mr. Clingy category! I met him about two weeks ago and he has literally sent me a text every single day. Always trying to hang out and I guess any normal girl would be thrilled with this. Not me! I'm someone who needs my space to do what I want to do and I'm sure if I was really interested in him that it wouldn't annoy me as much.

Since we have started hanging out I've thought about when is a good time to end it. I guess that means I should just end it then. The sick thing is...I kind of enjoy knowing I have someone in the event I get lonely. This is probably why the Mr. Complicateds get thrown into the mix as my karma for the way I treat the Mr. clingys?!?

I don't know why I attract these type of men? They are either attracted to me like flys to shit or use me to mend their broken hearts.

The madre has suggested I get on a dating site or fork over some cash to have my own matchmaker.

I think I'll stick to being single and have lovers along the way...and yes, I do realize that I'm slightly crazy when it comes to dating...

8.07.2011

For family and friends...

These are not my words, but they say a lot and it is so true! Found this on a support group page.


My illness is a difficult one to understand, even for me. Many of the problems it causes are invisible and difficult to anticipate. I need you to understand that my life always is subject to change because of the unpredictable nature of the illness with which I must live.  First, let me explain the depth of this illness-
1.  My joints and muscles constantly hurt, burn, ache, cramp and/or feel sore.
2.  I may need some very heavy pain killers and even then they still might not work.
3.  I never get deep sleep so I never feel rested and am always tired.
4.  I get terrible headaches, some may last days, and there is very little I can do about it.
5.  My vision, hearing, sense of smell, and sense of taste all can be affected. I may get a very dry mouth, very dry eyes and/or blurry vision, or be very sensitive to odours, noises, lights, etc.
6.  The fatigue I get can be overwhelming- and some days I cannot get out of bed no matter how I try.
7.  There are emotional side effects- like depression, memory loss, and difficulty concentrating.
8.  The medication I take has physical side effects- weight loss/gain, changes in my appearance, feeling doped up, mood changes, and problems with bowels/bladder.
9.  I may need to use walking aids, other aids like a helping hand, or sometimes even use a scooter or wheelchair. Other times I may need no help at all.
10. I might not be able to drink alcohol or eat certain foods because of my medication and illness.
11. The illness is here for the rest of my life- sometimes I will seem very well and "back to the old me"…and sometimes I may become very ill. It's unpredictable.
12. This is not contagious, and there is no evidence that it is something I have inherited or will pass down to children.   
This is all because my body has a serious fault in the way it perceives pain, and doesn't allow me to sleep in the way that gives my body the energy and time it needs to repair and rejuvenate itself.  Sometimes, I might go into remission meaning that I will do pretty well for a while- and sometimes, I will have flares, meaning that things will get very bad. I can't tell when a remission or a flare will happen, and I don't know how long either might last.  Most experts agree that if I can get good sleep, over time the pain situation will improve because overnight the brain will reset the pain receptors.  There are some things you can do which would make it much easier for everyone and I would be grateful if you would take the time to read this and try to understand.
1.  I will have good days, bad days, and many days in between. I can't always tell from one day to the next, or even sometimes from one hour to the next, how well I will be, so please be forgiving when I must change plans at the last moment. I don't mean to let you down. 
2.  Some days I will have all the energy in the world- and the next day I will be half dead. It's just the way things are- please don't say "You were okay to do this yesterday…" I can't help it.
3.  Please don't judge me as a complainer, whiner, or as a person making more of their illness than seems necessary. Many of the problems I have are invisible to other people so please be patient, understanding and compassionate. 
4.  I don't want to spend my days in misery, so even if I have pain, am very tired, or even if I am just worried, I will still try to be happy and enjoy myself. This does not mean I am physically better, it just means that I am coping with the chronic pain and fatigue pretty well that day. My health will never be "back to normal". "Healthy" and "better" will always be a relative terms for me now.
5.  I get lonesome and miss being part of the active life I once lead. Remember me- call me- visit me- don't give up on me. Please don't forget me or stop asking me to do things because I so often say no… It's not because I don't want to, it's because I can't. With a little help from you, I might be able to get more involved. I want to be part of your life.
6.  This isn't my fault and if I could I would get rid of it. It's not my fault there is no cure.  It is not all in my head! The syndrome of symptoms been discussed in medical literature since the early 1800's. Although there is no one test to prove it exists, that doesn't mean it isn't real. My pain and other symptoms are real, and result from both the chronic lack of deep sleep and the chemicals in my nervous system which triggers the pain receptors to feel terrible pain when most people would feel a lesser sensation like an ache. The body actually thinks it needs to build more pain receptors- so it does, making the pain even worse. The longer I have this illness the worse it will be.
7.  It's okay to talk about what is happening. I would rather you ask than pretend you haven't noticed how different I am or just avoid me. It's okay for us to talk about how my illness affects you, too. I won't see it as a betrayal if you talk to me about your frustrations with my illness as long as you don't blame me.
8.  It's okay to say "I know you don't feel well, but I don't want to hear about it today". Don't feel that you are obliged to listen to me … but if you ask how I am, I am going to tell you so if you don't really want to know, don't ask! I will try to remember that although my illness is a huge part of my life, you may not want it to be a part of yours.  If you find me overwhelming, tell me! Challenge me, but please do it with love and compassion. 
9.  Don't try to tell me that all I need is a little exercise, or just to get out, or try a certain pain tablet, or some new treatment, etc, because it works for you or someone you know… Please don't feel rejected if you try to offer me a solution for my problems and I don't take you up on it. I am under close medical care and am doing everything I can.
10. You may think I just need to push myself a bit harder or that I am giving in to things too easily. One of the problems with this illness is that if I try too hard, it can set me back considerably. I have to be more patient with myself and accept my limits- I don't like it this way either but I have come to realise that one day of trying too hard and doing too much could make me much more ill for weeks. I need to be slow but steady.
11. Sometimes, I need to sit down and rest, right away. When it gets like that, I can't wait… I really am at the mercy of my body and even though it may seem selfish I know that if I don't take care of my self, my body will get even with a vengeance because that is the nature of this disease. 
12. Please don't belittle my pain or fatigue. It makes me crazy when I hear "Yeah, you may think your back aches, but you just sit all day- I spent the day in the garden!" I wish I could have pain because I did something I enjoy- not just because my body is hurting itself. It is okay though to tell me how you are feeling- you may find that I am more compassionate than most when you tell me how you feel because I really do understand pain and fatigue… and you will find I may have some advice that can help you!
13. Please don't tell me I need to lose weight. I know.  I am doing the best I can. Don't criticise my eating, please. It won't help either of us.
14. I don't choose to be down and miserable but depression is part of this illness. I need you to remember that I didn't choose any of what this illness has done to me- I am struggling to learn how to manage, to cope with what it does to me, to grieve the loss of my health and to do the best I can to live the best life I can. Although I am grieving the loss of who I was before this illness struck and sometimes I get so frustrated I just can't help feeling sorry for myself, it's not just in my head- its an effect of the illness, too, that I become depressed and anxious.
15. The pain receptors in the membranes around the joints and muscles keep telling my body that it hurts even when there is no reason. This pain is real, it is perceived the same way you feel pain if you hit your finger with a hammer.
16. Sometimes I will have brain-fog. It's common in this illness to have moments when your memory is poor, or to find it difficult to think clearly. It will pass. It's not permanent- so if something is important to you please don't forget to remind me! I will be grateful. It's also ok to remind me to write something down, or to check back with me later. Please don't think I am ignoring you, being difficult, or just don't care. I feel terrible when I forget. It's because no matter how hard I try I can't sleep well, and medication doesn't help because sleep from medication is not the right kind of sleep, either.
17. I need to know if and how I can ask you for help. Sometimes, I will need more help and support than other times. Please let me know if you can help. If you can give me a lift, take me to an appointment,  help me with an errand or a task- maybe make a hot dish for me some night when I can't manage to make a meal- please let me know. When I am stuck in the house because things are bad, please come sit with me, even if there is nothing you can do. Little things like calling me every couple of days just to check in- sending a note, card, or email can make a huge difference. If you can, please reach out to me. Even if you can't do anything specific, just be my friend. Your friendship is the most important therapy I have. 
18. I can still do things for you. Please don't stop asking me to babysit, to run an errand for you, to do something I have always done before when I was well. I'll be honest if I can't- please, if it's something I did before, it's okay to ask me again. 
19. Please respect handicap parking and encourage others to do the same. Sometimes, people with illnesses like mine can't get out if they have to walk far- if everyone respected handicap parking, life would be easier for me and people like me who need those special spots. Defend handicap parking and it makes a real difference. 
All in all, I need you to realise that I am the same person I have always been- my heart, soul, hobbies, interests, sense of humour and mind are all still there- it's my body that is turning against itself. I am more desperate for your love and acceptance than I am able to tell you. Please try to understand.  Please accept me the way I am, please forgive me for the things that have changed, please forgive me and try to understand if I disappoint you, try to accept that I am not in control of what this is doing to me. Please forgive me if I let you down – I know that these changes are hard on everyone around me, too.  I wish it could be different, for all of us. With time, compassion and love, things will eventually settle and we will all adapt.

 

8.02.2011

ramblings...

I have a need to write...it helps make a small piece of my world feel whole. I'm not extremely talented (not even a little bit talented) and it's not something that I do for anyone other than myself. So, why do I make it public? I don't know...I get something out of sharing I guess.

Tonight, I can't promise to make sense, but I just felt a need to write. To listen to good music and write. I have kind of been neglecting this outlet lately. Not that I have not wanted to write, but just that I haven't wanted to share my thoughts. Been too tired and have too many other things going on. I have needed to take some things in and really spin them around in my head and digest them.

I've been feeling out of sorts. Thinking that it is time for change, but what would I change? I love where I live and I adore the people in my life. Every single day when I make the drive home from work I feel overwhelmingly thankful. My surroundings are truly breathtaking and I'm so lucky! I adore the friends that I have here. So, why do I feel alone?

I feel (warning: this is my perspective) that as a friend I'm pretty darn giving. When I care about someone and say that I love them...I mean it! I know that I can care too much and can be a sentimental sap. My ways of showing that I care are usually through mushy sayings, big bear hugs, or lending an open ear so that you can pour your heart out. I'll go places with you just so you don't have to be alone. I'll travel hours out of my way to be there during a tough situation. I'll send you 100 texts throughout the day to check up and just let you know that I care. Because this is all that I know how to do. It may not be enough and it may not be exactly what is needed, but that is what I offer.

Now don't get it twisted...I am not the ideal friend. I avoid actually picking up the phone and calling as much as I can (not a fan of talking on the phone). I can put my two sense in and tell you what I think you need to hear instead of telling you what you want to hear. I forget to send a card for birthdays and sometimes have a hard time remembering the actual day (I blame my shitty memory for this). I am far from a perfect friend, but I am not FAKE! Trust me, if I don't like you, you will know it. I won't be mean (unless you are a real ass and deserve it), but I'm not going out of my way to pay you any mind.

I'm fairly certain that these feelings I've been having have everything to do with me and nothing to do with people around me. I need to take a step back and examine myself. What am I putting out to the world? What do I need to learn from this to be a stronger/better person? But, don't you ever have moments when you want to stop being the strong person? To want to have someone who can carry your burdens for a little while? Being strong can be exhausting at times. However, I find writing this is making me feel vulnerable and uncomfortable...even thought about deleting the whole post a few times, but that kind of defeats the purpose of this outlet...right?

I just have an over crowded brain right now! I need to allow myself to deal with some things from my recent past. I have to let go of some friends reactions to some of those things. Maybe this is a start to that process? Maybe I can rid the feeling of being alone in a place I love. Maybe I won't have to leave. Or maybe an opportunity will present itself and I will leave and I will grow and learn and become a better person? I'd like to think that go or stay this hiccup in my world will lead to bigger and better. Lord knows I've experienced MANY hiccups in my life and I always end up better because of them. It's just harder to see it when you're in it...you know?

Oh dear...this was one heck of a rambling session. If you've made it this far...congrats/sorry! You got a glimpse of my hectic brain.

Also...I've been challenging myself lately. To be more honest about my feelings despite feeling vulnerable. To throw more caution to the wind instead of calculating every risk. This post is an attempt to that challenge.

8.01.2011

Meditate on this...

not quite keeping up with the nightly meditations, but I haven't completely given up on it...


On understanding the ego:


The ego is a wrong-minded attempt to perceive yourself as you wish to be, rather than as you are. Yet you can know yourself only as you are, because that is all you can be sure of. Everything else is open to question.