I’m soooo tired of it taking so long for me to get up and get going in the morning. It takes me 4 hours. Yes, 4. I’m not exaggerating. And I’ll be honest, sometimes it takes me longer. If I don’t take that 4 hours to do it right than something suffers and there have been quite a few times this has happened for whatever reason. Sometimes things just don’t go as planned.

Why does it take me so long? Well, let’s see. When I wake up I can’t just jump out of bed. I have to take some time to stretch and meditate to get my head and body in line a bit and to try to loosen up. Then there’s feeding Cleo Kitty and taking the first round of meds with some food. I can’t eat all at once. I have to take my time because otherwise my belly yells at me. (I have recently learned that I have a lot of food allergies and have dealt with a small intestine bacterial infection off an on too along with other issues that I’m sure will come up in another blog.) Then I need to set up all the creams and things given to me by my dermatologist (yes, I have skin issues too) and of course I do have a bit of vanity (just a bit) and I want to wear some jewelry (the sparkly and colorful the better) and make sure my hair isn’t scary. Oh and then somewhere in there is my shower which can wear me out. A 5 minute shower can really take a lot out of me and it’s very rare it’s only 5 minutes. Then I need to put on special lotion since my lupus reaction to the sun is that I get very itchy (as if I’m allergic to it) and then comes the sunscreen which must be applied to the full body. Whoo. I’m tired just writing this. So then somewhere in there comes the next round of meds and eating some more and drinking a special anti-inflammatory tea and some much needed rest. If I don’t rest here and there then I’m really in for it. Resting includes some time in quiet and some time looking at Facebook and Twitter, of course, and my favorite weather sites and sometimes I check the news headlines to make sure the world hasn’t ended yet. And somewhere in that 4 hour period of time I need to do at least 45 minutes of stretching. I am truly committed to this because if I don’t stretch than my body has a bad day. And at some point there are some other things like getting dressed and things that might be considered TMI. You know. We all go through it.

So yeah. Those are just the basics. It’s a wonder I have any time or energy to do anything else but I usually do if I keep all of the above mentioned things as part of my routine.

But we all gotta do what we gotta do to live our lives and apparently this is what I need to do. I try to just go with it but sometimes I just wanna be able to get up and run out the door and start my day and not pay for it physically and mentally. Or maybe I could try to cut it down to 3.5 hours instead?

Feel free to share. I’m always looking for ways to relax, breathe and get rid of icky stress. Here’s what I’ve come up with in no special order:

1. Take a walk.
2. Love my kitty.
3. Be outside.–Now this gets really tricky because I have to be careful of sun exposure (lupus) and of getting too hot (multiple sclerosis).
4. Look at the sky.
5. Spend time with my plants.
6. Buy myself some flowers.
7. Guided imagery.
8. Meditate.
9. Acupuncture and acupressure.
10. Rock out to music.
11. Chill with music.
12. Dance.
13. Put my Hulk Hands on and punch walls.–Not recommended with unstable walls and with other living beings.
14. Laugh.
15. Do my special bath soak that includes quiet music and muscle soak bath salts.
16. Create with my hands.–bake, draw, write, color.
17. Explore.
18. Be in a really dark room.
19. Watch the right kind of movie at the right time.
20. Read the right kind of book at the right time.
21. Watch the right kind of TV show at the right time.
22. Bang drums on Beatles Rock Band.
23. Talk with others.
24. Get out.
25. Find a spiritual path and try to stay on it as long as I’m not trying too hard.
26. Spend time with loved ones.
27. Give myself nothing to do.
28. Exercise–sometimes.
29. Write Blogs–apparently.
30. Take care of me.
31. Watch live music.
32. Listento the right kind of music at the right time.
33. Theatre/Improv shows.
34. Going to Corey’s shows.
35. Corey and Cleo time.
36. Travel–if I’m feeling up to it.
37. Connections with others.
38. Play with Cleo Kitty.

I sit at the table eating breakfast and I watch Cleo Kitty. She’s in the window basking in the friendship of the sun. She is most content in the sun.

In December she was diagnosed with cancer. It broke our hearts and our heads went to bad places about the outcome but here she is in late March loving life. She plays (using the hallway as a toy mouse playground, chasing ribbons, and chasing humans), she sleeps on her blankets on the bed, she eats quite a bit still, she climbs and explores and checks inventories in our cupboards, she loves getting her tail tugged, she talks quite a bit with us, she purrs a lot, she eats her dinner while we eat ours, she sits in her own chair at the dinner table if she wants, she snuggles, she gets on laps, she loves her wrapping paper, she spends a lot of time taking care of us and she puts up with us obsessively loving her probably way too much. We have been completely in love with her since her “love at first sight” experience with Corey over 11 years ago. (I’m just the extra but she’ll love me too if I’m here…) She is the love of our lives.

And most of all she teaches us how to live our lives and I notice it especially now since she’s been dealing with health problems. She lives in the moment. The Present is what’s important. That is all. Don’t think too far ahead, she’s hungry so get on that. She wants to play RIGHT NOW. She tells us more and more what she needs from us and we do our best to listen. She’s a great communicator. She also has this amazing sense of when I am not feeling well and having a bad chronic illness day. She stays around me. She snuggles and cuddles a lot. If I’m in bed more than usual she gets on the bed and keeps watch over me. I’ll always remember June 2010 when I had hit my health wall and was knocked completely over and was having what I later found out was a major lupus flare. She was there at all times making sure I was ok. She was keeping watch. I spent a lot of time in bed and she make sure to lay up against me and would stay there as long as I was there. Brings tears to my eyes thinking about it.

Thank you Cleo Kitty. You are my bestestestest friend in the whole wide world. I love you and I can only hope that I can be as there for you as you have been for me.

Patience.

Just typing that word right now bothers me. Why? Because it is something I struggle with all the time. In general for me, I have to work on having patience. When it comes to chronic illness, I feel like I constantly have to work on patience and just when I think I have it, puff, it disappears.

As someone with MS and lupus, I am very sensitive to weather changes. I guess overall it’s a really good thing I live in Los Angeles, CA because there aren’t that many weather changes. But I gotta tell ya that when there are changes in the atmosphere I can feel them all. I have been told many times in the past that I am a better weather predictor than a meteorologist. Om…great I guess? It means I’m suffering from it. Before I knew I had lupus and was on a treatment for it, I was a lot more sensitive to any rain that might be coming and could tell you right before it started because I’d start feeling a “rush of awful” all over. Now, since I’m feeling a bit better, I’m not as good at it. And you know, that’s ok with me. However, this past crazy LA storm over the weekend had my body reeling. I started feeling it a week before and was kicked on my butt most of last week until the storm started and was up and down all weekend as it was all happening. That is where I had to practice having patience about how I was feeling at all times. It didn’t help to be hard on me. I have no control over the weather. This also comes up in the heat with heat fatigue issues and MS but I’m sure that topic will come up in future blogs. So when I feel like I have no control I lose patience and of course I have no control over the weather.

I also need patience about chronic illness in general. I have limitations. No way! Really? Sometimes I still baffle myself when I admit that. I want to deny it. I’m supposed to be invincible and be able to do everything I want to do. I’m also supposed to feel perfect during a special event. As I posted in my past blog, I was not feeling as well as I’d like to going to the Guster concert and I had a lot of issues with that. But, I did go and I had a GREAT time. But back to the topic at hand (can’t lose patience with how I’m not staying on topic) I am always feeling symptoms like pain, stiffness and fatigue (to name a few) and quite often those symptoms need attention. I can’t push them away. I’ve tried to push them away before and it’s only made me feel worse and can make me even more limited. Soooo, again I have to work on patience. I have to let go of the outcomes and try really hard to let go of how I’m feeling so that I can go forward. Sometimes it means having to cancel plans, postpone plans, say no, and sometimes it means I make the decision to keep going and then I have to work on being patient about the outcome. Again, I can’t control my body and I can’t control the outcome. Ugh. Patience. Yucky.

And I could go on and on but the last thing I want to focus on is having patience with the medical business I have to keep doing. It really is never ending. I find myself dealing with Disability entities, medical insurance business, doctors, medical tests, trying to get my medications (incredibly hard to keep track of when I’m on a lot of them and it seems at all times with MS medications), exercising (includes 45 minutes of stretches EVERY day), resting, relaxing, spending time with family and friends and the list goes on and on. This is all daily. Well the medical business is not supposed to be personal but it is. I have no control over companies and/or the people who work there. I can’t control how long I’m on hold on the phone, if they will do what I ask them to do, if they are coherent, etc. I just have to go with it. And it REALLY TRIES MY PATIENCE. It’s not personal to them but it is personal to me. This is my body they are playing around with. I am not just a thing, I am a person.

So patience continues to be one of my biggest challenges but I find that when I do have some patience life is a lot easier. I feel better physically and mentally. I think a lot of it has to do with acceptance of me and where I am at the moment even with my emotions and feelings. Things are what they are.

But there I go again. I’ve just lost patience with what I’ve written. So I’ll keep working on it.

So I wake up this morning and I’m wondering, how do I feel? Will I be ok tonight? What should I do? How should I do it? And the questions go on and on.

Over a month ago I bought tickets to see a favorite band of mine, Guster, perform tonight at Largo at 10pm. That’s late for me. BUT I was too slow to get tickets to their earlier show (it’s AMAZING that their 1st show sold out so fast since they have a history of struggling to gather audiences in LA) and I was poking around their site and saw that there was a 10pm show and I thought, you know what? I’m gonna do it. I’m gonna take that chance and I’m gonna buy those tickets and I’m gonna be a person who actually is out after 10pm on a Friday night and I’m going to have a life. And…if on the crappy chance I feel awful that day then I will decide accordingly whether to go or not.

Well the good news is that I don’t feel crappy today. However, I have spent the past 2 days on my butt and feeling like my butt has been kicked and then trying to recuperate from that. It is hard to have your butt kicked, let me tell ya, but I am starting to get off my butt. What I do feel is wary. I feel cautious. I feel overly worried. I wonder if it’s a mistake to go or even not to go. I weigh everything way too much. And do I stand a lot or do I sit? Yeah, I slept more to try to get some more rest but should I try to take a nap? What should I eat special? How will the seats be? How far away do we have to park? Where’s the restroom? Will I be able to bring in water and will they have water there? How long will it go? I hope they’re good. I could go on and on with what my head is telling me but you get the idea. I already have a really busy head but now I’m being overprotective of me because I have MS and lupus and to add more fuel to the fire in my head, they’ve both been flaring up on me this week. Isn’t that always the way? I felt a lot better overall before that but then, no, right before the show I have to be kicked on my butt yet again.

But then I think about how nice it will be to get out. How giddy I’ll be to be out with Corey. How giddy I’ll be about seeing live music. How excited I’ll be to see my favorite band, Guster, perform and I’ll be able to have fun and I just know that there will be times I won’t be thinking about my life and my current situation and I might even get glimpses of forgetting how I’m feeling physically. What a novel idea.

So I’m gonna try to enjoy myself and take care of me today and give myself extra love and try not to worry about it. It will all work out. It always does.

This should all be easy right? It is just a concert. But it’s not. It’s me with MS and lupus and my body comes first. Sometimes that means my mental sanity needs to come first so I can feel better overall. It’s about balance.

And I will keep trying to find it.

So I’m going along with my life and then I wake up on Wednesday morning and all I can think of is, “Ugh”.  That’s it.  How was I feeling?  Ugh.  My whole body was yelling at me.  Aches, stiffness, fatigue were consuming me.  So I had to go back to bed and rest for the rest of the day and pay for it when I was moving around and pay for it when I wasn’t.  And then what I considered a short list of things to do for the day became too long and I had to cut it down even more.  I had to keep it simple. 

This is my life.  I go along my way and try to pick myself back up from a “down” time and then my body says, “not uh, not doing anymore right now” and I have to go along with it and stop where I am no matter what is going on.  Or I don’t have to go along with it and then I pay for it even more.  Yeah.  That’s not so fun.  My life becomes a Life Disrupted.  Disrupted yet again by multiple sclerosis (MS) or lupus or a combination of the 2 or anything else can come up like an upper respiratory infection that my body gets often and I’m down and having to rest.

It’s so frustrating.  I can’t even write much right now because my hands and arms will get inflamed and hurt and get stiff just from typing this.  So I have to be careful.  But then how careful should I be?  I don’t want to get sucked into a big black abyss of isolation and darkness because I had to stop things where they were just to take care of my body yet again.  But I also don’t want to push it too hard and suffer more and longer.  Where’s the balance?  Is there a balance?

So then I just have to go with it.  I don’t want to have to go with it.  I don’t want there to be anymore of these waves.  I don’t want MS or lupus anymore.  I never wanted them for that matter.  I just want to be me.  I just want to live my life. 

And that is my reality.  I will go along on my life’s journey and then I will get kicked in the butt again and have to stop and in some ways start over.  I don’t ever seem to start over where I left off before but take just a different version of the journey because each time my butt gets kicked by MS and/or lupus I change just a little bit.  Then my life changes with me.  And I go from there. 

I tell you.  I’m tired of it.  But I will keep on going.

Today I had to ask for help.  I had to speak up.  I had to stand up for myself.  I don’t know why it is so hard to do that but the truth is, it is REALLY HARD.  I had to ask for money.  I had to say that I deserve more money.  I had to express myself and tell the person on the phone I need help.  I needed her specific help and yes it was personal.  It felt liberating and awful at the same time.  But the truth is, we all need help at some point or another and I need it now.

I NEVER wanted to be Disabled.  I NEVER wanted to have to be on Long Term Disability, but ever since I have had to be,  I have felt like I have been punished for having 2 diseases and not being able to keep up with “the rest of the world”.  Because I couldn’t keep up with what society has deemed the acceptable way to operate–working our butts off up to and over 40 hours a week usually 9 to 5–I have to explain every little bit of me…of why I need help…why I need financial assistance to survive in society and to keep a roof over my head.  I have to share the vulnerable parts of me to try to convince them: the fatigue, the pain, the stiffness, the weakness, the digestive problems, the balance issues, the cognitive issues, the heat fatigue, the sun sensitivity, the unpredictability–the idea that EVERYTHING I do is an event.  Yes, an event.  I have to make it clear that it takes me 4 hours to get ready after getting up in the morning.  And then what do I do?  I spend the day dealing with medical business such as doctor appointments and if I’m lucky, trying to rest and recover (so that perhaps one day I can work at least part time again…or even feel better again).  Nobody wants to hit that wall I hit in June 2010.  I don’t wish it on anyone and I am still recovering in March 2012.

So if I hadn’t asked for help today and spoken up for myself and at least tried to make the person on the other end (the one who might just be able to help me in this instance) then I would be screwed.  I don’t know how I’d pay for rent or even groceries or gas for my car, and I don’t use much gas.  And if it doesn’t work out, at least I spoke up for myself.  I am reminded all the time that this is not personal, it’s business and it’s all part of the game.

But here’s the point: IT IS PERSONAL and I am the one affected every day.

I want out.  I want out of my head.  I want to be able to move on.  Yeah I can say that I don’t want lupus or multiple sclerosis but if I’m going to be stuck with them then I want to be able to feel well enough to do more than what I do.  I don’t want my life to be defined by doctors and medications and health insurance and disability and all kinds of crap like that.  I want to be defined by who I am.  I want to do more than what I’m doing.  Or is it that I want to do more or that I want to be more creative and more fulfilled?  I have a feeling it’s both.

This is where the blog comes in.  I can’t tell you how long I’ve wanted to write.  It’s probably been since I was born.  I wrote quite a bit in school and then lost it.  Then when I tried to bring it back out to express myself I had a block up or at least that’s what it felt like.  I had also gotten into using my hands more with television and film production and expressed myself that way.  Then in 2002 when I was diagnosed with MS the idea of writing about it started to creep in.  That was almost 10 years ago.  It has taken me 10 years to really try again.  Sure, there are older posts here on my blog from 2009 but I guess I just wasn’t ready and I know it hurt my hands and arms greatly back then to type repetitively.  Then when I was diagnosed with lupus in 2010 it really hit me that I needed to start writing yet again.  So I did write and I kept those writings on my iPad only.  Good place for them.  At least I wrote right?  Then I stopped again.  It was so hard to write and think about what I was going through and I was soooo busy trying to medically get better.

Well, I think it’s time to get back to me and what my soul needs.  So say I was born with this NEED to write and express myself.  Sounds like that’s what I need to do in order to get out of myself.  I need to get out.  A lot of the time I can’t seem to get out and go far physically or even mentally so I need to stay in and yeah I have a roof over my head but those walls can close in on me.  Thank goodness for a wonderful husband and the most beautiful kitty in the world who help keep me sane.  But I need more.  I want more.  I deserve more.  Hopefully writing can help free me.

I gotta get it out.  I gotta share it.  I gotta write it.  I gotta express it.  I don’t know if this makes any sense to you all but it makes sense to me.  Perhaps I won’t continue and will pause again…but I wrote today and I needed to get out of my head Just for Today.  Just typing this is helping me to feel better.  Let’s hope it helps.

Alright so it’s been awhile since I’ve posted.  I come from a place where it’s really hard to share a part of myself.  I keep thinking that a light will go on and I’ll be ready to share this part of myself with the world.  Why is it so hard?  Will I change the universe with my blogs?  Am I that much more special that I have that kind of power?  Or is it just that I feel that now more will be expected and required of me?  What will it all mean in the end?  Can I say EGO???

Not only do I have that conflict in me but since I’ve been dealing with MS, over 7 years ago the symptoms started, I’ve been feeling like I want to hide even more.  But there is something in me that says no way.  The time is now to come out.  To express myself to the masses or at least the 1 other person who will make it look like someone else other than myself and my husband might read this.  I’m not sure what it is but it is what leads me to write these blogs.  Do I give it more power so I can write more and feel more vulnerable after sharing myself with you?  I do know that I can’t argue much with that force within me and that eventually it will win.

Ah, that gives me a feeling of relief.  Yes.  That force inside me is my inner voice waiting to be heard and when I give it a little more leg room it is relieved.  I am relieved.

So what is wrong?  What will happen?  You might know me.  Great.  It’s about time.  I’ll let you know when I come out and then maybe you’ll read this too at some point and I won’t just keep it to myself.  After all, what good is a voice if it isn’t read, written or heard?

There’s something I must confess.  I am 2 people.  There’s the Me (in cooler weather) that is gung-ho and ready to conquer the world with more motivation than she can even handle and there’s the Me (in hotter weather) that gets overwhelmed easily and isn’t sure what to do next and sometimes even how to do it.  I think these 2 Mes existed way before my diagnosis of MS but have been magnified in the past 7 years of MS symptoms.

Right now I am the Hot Me.  The Me that needs to follow already established routines in order to function.  The Me that almost needs a script because her head is in a cloud of heat fatigue.  The Me that gets jealous when she watches the world live their lives around her.  The Me that assumes that these people have “normal” lives.  The Me that gets me into so much trouble because I end up with bruises on my body from mentally beating Me up.  The Me that needs to remember to take it one day at a time while it’s hot.  The Me who watches her husband put on warmer clothes while he’s in the apartment because the AC is on full blast and it still doesn’t sink in internally in My body.  The Me that forgets that one day the heat will end and that there is another, more confident Me out there just waiting till it gets cooler.  The Me that needs to be gentle with myself and keep it simple even more in order to survive.  That’s where I am right now.  When it gets cooler I’ll make sure to tell you about the other Me.  Right now I gotta go put myself in the freezer.

Maybe one day these Mes can unite and I can be a Me that is able to comfortably put up with any temperature.