A New Year...

It is January 3 2013 and I finally have a moment to sit down and contemplate my last year, and really visualize this year I find myself beginning. Last year was rough in many ways, and in many more was quite a blessing.

The year started with Will in crisis, filling out paperwork and then waiting for the call from Spring Harbor (children's psychiatric hospital). The call came, none too soon, and we prepared for Will to go stay at the hospital....he was so excited to go to the hospital to stay so they would help him not hurt so much all the time. So as you can see, it was MUCH harder on me than it was for Will. February 2 was the day, his dad met me at the hospital to do the admitting paperwork/meeting. We went on a short tour showing us the ward Will would be staying, found out when we could visit etc.... Gave Will hugs and kisses and left with a broken heart. I was there visiting everyday, (except Sundays as I work all day every Sunday and his dad was there on those days) on days I had to work, I would go and have lunch with Will in the cafeteria. This was the longest six weeks of my life, but Will was thriving... I ran out of oil and spent almost a week with no heat in my house but I consoled myself that at least Will was warm at SH.

Will returned home mid March so much happier than he went into the hospital. We had services for him in the home and his classmates were happy he was back. Will had learned how to stand up for himself a little better at school, and he knew what types of behaviors he was willing to be around and what didn't serve him. This caused problems at school, his best friend still struggles and didn't like that Will didn't always choose to be around him when he was struggling. So he and another child started to bully and give Will a hard time at school.

I served my husband with divorce papers late March, which made him angry and wondering what other unpleasant surprises I had for him. (He had left me over 2 years before for a 24 year old girl, was in and out of relationships with younger women, and was finally in a relationship with an adult woman for 2-3 months- so he WASN'T alone, but all this had been his choice, not mine. I just needed to move on and if he wasn't going to file for divorce than my hand was forced so I could finally move on with my life.) It isn't final yet...... There seems to be one stumbling block after another for him, always a day or two before we have a court date to finalize. Can I say BEYOND frustrating?

Will started fifth grade this year, he asked to join the drama club at school! This is the first time he has taken an active interest in joining a club/sport/whatever....EVER! So we let him join, it quickly became apparent that it was very overwhelming for him to be in the group, so we rearranged his staffing services so that staff was able to support him during drama. Unfortunately he has since refused to continue as it is still too overwhelming for him. I am hoping that in a week or two he can be coaxed into trying again with staff providing more support for him. He continues to be bullied at school, they say they are working on it with an anti-bullying program at the school.

This summer I had my worst MS flare-up ever and was down for the count for about a month and ended up on 5 days of IV steroids. (I hate steroids!) My work has had it's ups and downs. My manager (who I enjoyed working for but who was extremely burnt out) quit, I got a new manager who was wonderful, but had come back from medical leave early and wasn't equipped to work in new houses, I tried to support him as much as I could but I felt more directionless than ever.....In October I was called into the office and told that my manager was out on medical leave again and would not be coming back. I continued the best I could with no direction at all, a week later I was told they had promoted someone else to be the manager and I was being pulled out of my homes, away from my clients, and put in new programs with 4 new clients. I was upset, I didn't want to leave my clients...I was given no reason why I had to move....had a new manager who was so busy with openings and overworked that now, on January 3 I still have not had the opportunity to sit down and talk with her about what her expectations are for me. 2 months went by at my new houses, I had a worse schedule, lots of stress about who would watch Will on Wednesday nights as his dad doesn't watch him on Wednesdays (only Sunday-Tuesday) because he is at his girlfriends. My parents offered to keep Will wednesday overnights which was wonderful and Will enjoyed it, but it messed up his routine and sleep pattern which was already in a bad cycle. Will would come home and work with his staff, at the end of her shift she would drive Will 20 minutes away to my parents. Over time my dad offered to drive Will back in the morning so I didn't have to drive out there every Thursday morning before school. Well, just as everything was falling into place and I was getting comfortable with my clients and their needs/routines I was called into the office again and pulled to 2 new houses, 4 new clients- same manager. I started 2 days ago. The schedule is minutely better, a lot more physical work, but less of the mental..... We shall see how long I am allowed to stay here before I get pulled with no explanation....

The holidays are always stressful, Will even threatened himself with a knife to his neck last week. I hoping this is only because of the added stress of holidays and vacations, but have no fear, I have locked up all sharps and am consulting his drs etc....

As you can see, it's been quite a year. I am not sharing this for anyone to feel bad for me. This is to show what Will and I have overcome. We survived all this, and have come out stronger. This is not to say I was grateful for the struggles while they happened, but looking back I am so grateful for everything we have gone through, struggled with, hated at the time, celebrated. Will for all his struggles lately is still solo much better than he was a year ago. He even bought me a Christmas present for the first time EVER, which makes this the best Christmas ever for me even though I had to miss my family Christmas for work on Christmas Eve and day. My divorce should be final tomorrow (fingers crossed!), and this is a new year and who knows what it will look like....personally, I am putting out the energy that it will be a great year for Will, and me. I expect struggles, grief, heartache and worry....I expect there will be much more celebrating, laughing and loving than the other stuff. I will take it all in stride (as much as I am able) and be grateful for it all. I will embrace this life of mine, and do everything in my power to make this Wills best year ever!

I had planned on no New Years resolutions this year, but as I write this I realize that I have one....to make this the best year ever for my son.... Happy New Year every one, I hope this year brings you health, happiness, peace and blessings (as much as I wish it for Will and myself ;~})

Good news

I got the call a couple days ago that I do NOT have the JC virus. This means that I can start on the Tysabri infusion treatment. I got the paperwork/release form to sign in the mail today. Everything is signed, I just need to drop it off at my neurologists office on Monday and I will hopefully start treatment within a month or two.

All this means is that hopefully my MS will be stopped in its tracks. I should (according to my dr) have no more flare ups. This does not mean everything disappears, I will still have the silent symptoms to deal with, but I'm becoming quite a pro at dealing with those.

All in all, really good news for me. I am very grateful......

I strongly dislike waiting

I have never been the most patient person. Those of you who know me will not be shocked by this declaration. I went to the doctors today for a blood draw. This does not bother me as I've never been bothered with needles.(unless I'm doing the sticking! Backwards I know)

The reason for the blood draw is because at my neurologist office last Friday I was told my MS, while not super active, is active enough that he wants me on treatment again. The best option would be a drug called Tysabri. This is a once a month infusion. So why not just start it? Well, I have to be tested for the JC virus. This is usually a harmless virus which "hangs out" in the body (my dr said around the kidneys) and doesn't do anything. About 50% of all Americans have the JC virus. The issue is that a small amount of people who have the JC virus and go on Tysabri have a problem. The problem is that Tysabri can potentially activate the virus, sending it to the brain and causing life threatening problems including death. So, now I have to wait 10 days for the results. If I do not have the virus, I will start the treatment and consider the 1&1/2 hours at the infusion center as "me time" every month. If I do have the virus then I will need to go in and talk with my neurologist again and try to weigh the pros and cons of taking the medication. So this is my waiting game for the moment and I'm not very patient. Ten days will fly by right? Besides, do I really want the results? Yes, one way or another, I need to get those results and make a decision which could alter the course of my MS and health for the rest of my life. Waiting.....waiting......waiting.....

Sometimes I feel like a fraud

Do you ever feel like a fraud? I must admit that I do sometimes. Why do I feel like this you ask?

Well I'll tell you, I feel this way when people tell me what an inspiration I am, or how great I am at staying positive. (now don't misunderstand, I'm not told this all the time) Lately its been my son Will's support staff. They come in and I have a smile on my face when I greet them. Because of this they have been telling me lately how wonderful my outlook is through this MS flare up. That I am an inspiration, and such a great mom.

I have to tell you, I don't feel like any of those things. I have felt more "down" lately then positive. Just because I'm trying (and I feel like lately not that successfully) to accept the things I cannot change about my circumstances and still smile at people and not want pity doesn't mean I'm an inspiration or anything else. I am a woman who's going through a crappy time right now and struggling. I have cried more in the last 3 weeks, felt hopeless, wanted to give up, and been too tired to care about certain details in my life. Does this sound like an inspiration to you?

That is why I feel like a fraud these days, I'm just a woman, I'm not that special.

I'm not feeling like super woman

It is five days post steroids. I am still all over the map as far as emotions, one minute I am so angry, the next I'm sobbing as if my heart is broken. I do not do well when I'm on an emotional roller coaster. On top of this, I am still not eating and/or drinking like I should. Part of the reason is the steroids are still effecting my sense of taste, but also a lot of the time I'm too tired to get anything, and as we know, that's not a good thing when you live alone.

I went to the doctors in Wednesday because I was having a lot of bizarre symptoms: a sore throat, a site neck- really, the skin was so sensitive for 3 days that the shower hurt when it touched my neck, to tremors, weakness, vertigo, heaviness and aching in my legs.

The dr had no ideas, sent me home with instructions to take 800mg of ibuprofen every 4 hours. some of these have faded, my neck is no longer sore and my throat is more irritated then sore now. My biggest problem is the vertigo, and the heaviness/weakness and aching in my legs.

My son has been wonderful through this ordeal, he has been more understanding than I would have given him credit for if I hadn't seen it for myself. He has put up with dr appts, IV treatments, and most of all a mommy who has no energy/ and moving VERY slowly due to legs/balance issues.

Today Will and I went grocery shopping and it wiped me out. I understand that I need to be patient with my body, I need to accept the help of others (extremely difficult) and be forgiving of myself for not being able to be everything I think I should be for Will, and everyone else in my life.

On the blessings side of life: my aunt surprised me with some beautiful vegetables this week, my soon-to-be-ex floored me by mowing my lawn (it's been a month since I've been able to do this chore) and do my laundry for me. I also had a wonderful friend(s) who brought me ice cream when that was all I wanted the other night but couldn't get down to the local DQ.

This relapse has certainly brought home the fact that I am not super woman. I am in fact a human, with a human body that is fragile and needs care. I am not a super mom, I am in fact a human mom that is not perfect, but who does her best for her child. I am a woman who needs to do more for herself.

I recently talked with a friend who has anxiety/panic attacks while driving. He called to tell me he was disappointed/angry with himself because he had been doing better lately, but that this morning he had a full blown attack while driving somewhere new. My advice was to cut himself some slack. So why is it so easy to give that advice out to others but take it myself? Why do we always think we have to be perfect but accept others imperfections? We are able to love and accept others for the perfectly imperfect people they are but we hold ourselves to unattainable perfection and then beat ourselves up for not living up to the impossible.

So, I have been given this opportunity to accept the imperfections, the "weaknesses", the humanness that is me. To accept, and to love this part which isn't going away. I choose to love myself, in all my imperfections. I will always strive to be better, but I will do my best to accept that my best is good enough as long as I keep going and try as hard as I can in all things.

What will you choose?

Day five and we're done!

Just finished day five. Unfortunately I do not look like an eggplant as was my goal, but still look like a beet.

My veins are not what they once were, at least I have one good one, so after a couple failed attempts they opted to go back to my right elbow for round three.

Being there by myself today was almost harder than having Will with me. I didn't have anyone to focus on and therefore went into pity party mode. I hate feeling sorry for myself, but there are times when it just plain sucks being alone with no one to hold your hand and/or help with the little things in life we all take for granted. Like getting a drink, or getting a quick snack.

I find that I am quite dehydrated from lack of drinking (all tastes like dirty rusty water, yuck!) and of course I haven't been eating well, either too tired to get anything or doesn't appeal to me. Now that's not to say I haven't been eating because I have, just not enough, and most of it not good for me.

So, now I am looking forward to letting my arm heal, letting my body heal, and flushing these steroids out of my system. I am putting out good vibes that my MS will continue to quiet down, old and new symptoms will fade and I will not need steroids for a VERY long time.

Luckily, both my clients for today have plans with their families so I didn't have to rush right into work. I can take the next 3-4 hours to relax before having to gear up and take care of others. Sometimes things just work out. Have a blessed day!

Picture 1. My IV back in place after failing to find any good veins anywhere else.
Picture 2. Nemo and Marlin. Had to take the picture for Will so he could see the fish again as he is with his dad and didn't come with me.

Talk about guilt

I've been reading a blog by a wonderful woman struggling with MS herself and the roller coaster of emotions that come along with it.

Today my own guilt has come crashing down on me like a ton of bricks. With this flare up (worst one I've had to date) and the resulting steroids I have not been up to doing ANYTHING. It doesn't help that I had such a huge falling out with my parents at the same time either.

My son has been amazing. I can't say it enough. He has come out of his own world in ways I wasn't sure was possible. Asking to help me, asking how I feel and what I want to do. He takes my breath away.

However, today when we came home after my forth day of steroids I fell asleep on the couch. When I woke up I realized as I was asked yet again "do mommy, what do you want to do now?". That I am not capable of doing much, and I haven't been able to do much of anything all week for/with my brilliant child.

This isn't fair to him. He has enough to deal with in life without a mom who can't do anything. Yes, he has come a long way and can thankfully occupy himself for periods of time. But he was looking forward to having his mommy time. He is definitely a mommas boy. He has fun with his dad, and they've been doing some really fun things lately. (I think this is part of my problem too. I'm supposed to be the fun one, but I don't have any money like dad does, and I don't have the physical capability that dad does right now. So I guess you could say I'm jealous right now.)

Talk about feeling useless and like I'm failing my child. And at the same time I feel guilty because I wish I had someone who could have taken Will this week so I could rest without pushing myself past my limits to take care of him.

I guess all this rambling is the jumble that is in my mind. I blame the steroids and MS. I will continue to breathe, do the best I can do, and love my son with every fiber of my being. Because with him in my life, how could it be anything but perfect? Have a wonderful day.

Well, it is the MS

Went to my primary dr this morning. He listened to all my symptoms (complaints) called my neurologists office and talked to one of the drs there only to be told it IS an MS flare up. I have started my 5 days of IV steroid infusions. What joy, what rapture. Everything including water tastes foul. At least they left the IV/port in so I won't be riddled with bruises.

I do have one small bruise on my right forearm where they made their first attempt. The bruise started developing immediately. Didn't really show up till a couple hours later. It amused me really because there are two little pricks side by side. One from the lidocaine injection and one the failed IV. Made me think of a little baby vampire attack. Then I started giggling over why they are turning babies so young into vampires. (can you tell I'm a little sleep deprived? lol)

I had to bring my son with me today and it went fairly well. Towards the end he decided he has all the symptoms I have.....only worse. So I called my mom to see if she would be willing to watch him tomorrow. She said yes and then proceeded to yell at me for something that unintentionally upset her. I apologized for my part but she was still very upset. I can only hope that as she calms down and looks at the situation she will realize that I was out of my mind with my MS flare up and couldn't think of a way to have her not share how bad off I was with the world on Facebook. I should have just called her and asked her nicely to take it down. I know she meant well, but I wasn't in a place to think that through. U just commented on her post that things weren't as bad as she made them out to be. Again I apologize and hope that she will understand I never meant to disrespect her or not appreciate everything she and my father do for me because I appreciate it all more than I can say.

Here are some pictures in no apparent order. I don't have a computer to put them in the right order and/or caption them so I apologize for that too.

They are of my baby vampire attack, my view and IV drip, my IV port which is now bandaged, and my son occupying his time with a rolling stool and a banana as only an ASD kid can! ;). Have a great night everyone!

If not MS then what?

For the last three weeks I have been having increasing problems. Have you ever had restless leg syndrome? I never have but my father lives with it and has for years. It started with a "restless/creepy crawly" feeling in my legs. It was very unnerving and annoying. I looked up online and saw many references to MS and restless leg.

Well, over the weeks (and especially the last three days) it has gotten worse. Much worse. It's not a pain, but I feel like I'm losing my mind. I am constantly moving my legs and now my arms to get a modicum of relief from this feeling. I feel like this has to be how drug addicts feel when going through withdrawal. All the tv shows and movies show druggies screaming that it feels like bugs are crawling all over them. They want out of their skin.

This is how I feel. It is all day with the exception of a few minutes of respite in between every few hours. Last night I only slept fitfully (with a lot of tossing and turning) for about 5 hours. -I'm a 8-10 hour a night kind of gal.-

Part of the problem is my concentration is shot all to H-E-double hockey sticks. My son wants to play games and have me watch videos with him. I can only tolerate about 10 minutes tops then I'm feeling nauseous with my need to move.

While at work yesterday I figured out that tapping my leg helps me concentrate. I sat down and read my book for an hour and a half. When I looked up I was so pleased I had been able to concentrate for so long until I looked at my leg. I had slowly been hitting my leg harder and harder. I have a large purple bruise on my right leg.

This is when I realized I need to call my neurologist. When I did I found out he is on vacation. I talked to a nurse in the MS department, she made me feel foolish (maybe unintentionally) explaining my symptoms. She talked with a dr and called me back telling me it sounded like nothing MS related and sent me on my way to calling my primary dr. Not related to MS? Was she serious? MS can present in almost any way possible! The Internet has many articles about this restless leg feeling and MS! How could they dismiss it so quickly?

I'm not saying it definitely is MS, but if MS can cause someone (a close friend of mine) to have everything she eats taste like butter except apples then why can't this possibly be MS related?

Anyway, my primary dr is concerned. He wanted to add an extra appt. to his day today to get me in. The problem with that? I was working alone today until after the appt. time. So, after playing phone tag with his nurse I now have an appt. Wednesday morning at 8:15. I hope he has done ideas as to what is going on and how to help because I feel close to losing my mind.

If this is how drug addicts feel in withdrawal I can understand their willingness to do ANYTHING to score their next hit. I feel like I would do almost anything to get rid of this feeling.

Sorry for the vent/rant session, sometimes a girl just needs to get it out there and not just festering in my mind. Hope you can take it for what it is. A woman who is slowly losing her mind, is sleep deprived, and so frustrated with feeling like this.

Have a beautiful and pain free day.

My MS is not being so quiet right now

For the last couple of weeks I've noticed that my feet (more specifically the inside ankle area) has been extremely sensitive and getting more so every day. I didn't think much of it other than it was strange but talking with 2 good friends from camp who both live with MS I brought it up only to find that they have both struggled with this too.

When anything, and I do mean anything touches my feet I want to scream. Like I said, it appears to be getting worse. My son wedged his foot under my thigh last night and then was moving it. Just feeling him move against me (anywhere on my legs) makes me want to scream as well makes me feel very nauseous. I'm not sure what all this is about, but it's very frustrating and I'm not sure how long I can handle feeling like this before I lose my mind.

It doesn't help that I just want to crawl out of my skin whenever I am still. I am now constantly moving my legs and/or rubbing them to deal with this restless/tingly/creepy/crawly feeling. I know I should probably go see my neurologist about this but it's $50 for my co-pay and I can't afford it. So, unless things get a lot worse I will be living with this until it resolves or till I go see my neurologist at the end of the month for my yearly appt.

Anyone else feel like this? Did anything help? And maybe most importantly: how long did this last for you?

It's camp time again

In one week my son Will and I will be at our camp again for camp meeting. I have been going since I was 6 (33 years oh my!) and my son has been going for 10 years (since he was 1 week old!). I've written about Empire Grove before. It is the balm to my battered soul, it is where I am closest to my God and my grandfather, and where I find peace.

As my son started to grow up and struggle more and more it's been harder and harder for Will to enjoy camp. It's such a foreign environment to him now. It does not hold the same structure as home does. There is too much freedom, too many kids running and riding bikes ( Will doesn't run fast, and can't ride a bike). These kids don't understand Will, they don't want to play what he wants to play and he can't keep up with their play. Can we say beyond frustrating?

And so he struggles.... We had a couple of years that were disasters. Last year was better, and I'm hoping this year will be amazing by our standards. We have spent a couple weekends at camp since Will was in Spring Harbor and they went very well.

This year should be particularly interesting as we are putting on a musical (it's one I did 30 years ago at the Grove!- wow time flies. I'm starting to feel old lol) and I really want to be in it. I haven't sung in too many years to count and I really miss it. I'm hoping Will is able to cope with me participating. However, this means we CAN'T leave early as I will be needed for all rehearsals and for the performance. Can he handle it? Do I dare try?

The last several years I have not participated in much because Will needed me more. Don't get me wrong, I don't resent any choices I've made in regards to this. I guess I'm just leery of pushing this, because I want to spend the entire week there. In fact, I guess you could say I need this time. Yes, I'm being selfish in this but I deserve to be selfish once in a blue moon right?

So, the question is...... because Will is getting older, and doing better, do I take this experience to try and push him a little? OR Do I keep things status quo so I have a better chance of being able to have my full week at the Grove?

Do I participate in something that brings me great joy knowing it will make the week more stressful? OR Do I pass on this opportunity to keep the peace?

I'm really struggling with this. To top it all off I have to consider my MS. I've had a lot of symptoms lately and they are exacerbated by stress and heat. (always a lot hotter at camp then at home)

How much is too much? Anyone? Anyone?

Got to beat this heat

The last few days have been rough for me. During the heat I have mowed my lawn, cleaned Wills therapy room (formerly known as my dining room) - took 3 hours of hard work and 3 trash bags full of trash. On top of that I have cleaned up around the rest of the house, done 3 loads of laundry, the dishes and a multitude of little things that always need to be done around the house.

Anyway, as anyone with MS knows that the heat is not our friend. Not only does it sap only strength all on its own, but when I add other activities that are strenuous it can be very detrimental. In fact, I am not supposed to even mow
the lawn at all because it makes me ill.

So why do I mow the lawn? Because I am now a single mom and home owner. I can't afford to pay anyone to mow for me, and my ex ( who is at my house watching our son 4 days a week, and promised to help for Wills sake) doesn't help out with that. He has since changes his mind about helping since he doesn't live here anymore. Oh well, I guess I can't complain about that as he's right he doesn't live here anymore. Would I like the help? Of course! However, I'm not good at asking and/or accepting help especially when he has never done a good job and it frustrates me to have to go back as redo what wasn't done well in the first place.

Sorry, let's get back on track. So all this heat and added activities have not been good on my feelings of well-being. I am feeling nauseous, extreme fatigue- to the point of spending hours on my couch unable to open my eyes or speak without slurring my words, my whole body is achy and I have a very small appetite (should be happy about this, but from past experience it never ends in me losing weight in a healthy long term way) and I end up not drinking enough water. I mean, I can go all day without drinking water. I'm not proud of it, and I know that it's exacerbating my symptoms but I just can't seem to make myself drink like I should.

So, what do I do to beat this heat? Well, this is what I'm doing tonight- I'm sleeping with the air conditioner on high, I'm forcing myself to drink some water and taking a cooling shower before going to bed early. And I will be using my cold marble stones on my neck and face to help cool down as well.

What I should have done this week- re-evaluated doing some of these strenuous activities. Did they REALLY need to be done or could they have waited? I could have gotten more sleep, had much more to drink then I did. And stay as cool and stress free as possible.

Hope I make better decisions next time around. How do you beat the heat? Or are you one of those people who thrive on the heat?

Why I blog and how I got started

I started blogging a little more than a year ago with Emily's Perspective (emilysperspective@blogspot.com) A friend of mine told me I should blog about my experiences. See I should tell you if you haven't seen that blog: I can have quite a unique outlook on things. She told me it was funny so I should record it. So I did, can't tell me I'm not my own person. I then started
This blog and one other (anartfilledlife@blogspot.com). The other was because I wanted something that would keep me on track with my arts/crafts/recipes/photos. See, I'm very inspired by crafting etc. and love to do it all (some stuff not as good as others, but I still enjoy it) and this was a way to make art a priority in my life. I have to say honestly that life has gotten in the way of keeping up with that blog as much as I would like, but I'll get there.

Then there is this blog. It started as an online journal. A place to process my life and everything in it. Now, it still is a journal, but along the way I decided I wanted to open it up for others to read and hopefully find interesting enough to follow. I decided that I wanted to share with other women my experiences and life in the hope that it might inspire as well as help them feel like they are not alone.

I still write to journal and process, and sometimes vent. But I write to inspire myself and remind myself of where we were and how far we have come too. If I can share with people who have amazing ASD children, or people with MS, or people going through divorce, or any combination then it makes this journaling/blogging even more worthwhile than it already is.

So, I hope you enjoy, learn, are inspired by what I write, but first and foremost I find that I am writing for myself. And that is good enough for me.

Let me help with that

Do you have someone in your life who likes to help sometimes? And every time they "help" it makes more work for you? It would have been better if they kept their help for themselves right?

My soon-to-be-ex is like that. Sometimes he's a lot of things, helpful NOT being one of them. Sometimes he just wants to help, well at least that's what HE says. Personally I think the jury's still out on whether or not he really is trying to help or not.

Anyway, every time he decides to help its a disaster for me. I end up undoing and redoing or just plain doing more to fix what got screwed up. If you don't know me, I like to do things 1. The first time around, 2. As quickly and easily as possible. Nothing frustrates me more than having to go behind someone else because of incompetence, laziness, or just plain doing a half-assed job. (please excuse the language). Needless to say I get frustrated a lot with the soon-to-be-ex.

I would much rather do it myself in the first place, save half the energy, the frustration and the time. I have repeatedly asked him not to help. I have thanked him for wanting to help, but explained as nicely as I could that it's easier on me in many ways to just do it myself.

Why am I bringing this up? Well, I came home the other night to find twigs littering my lawn. When asked why they were there my s-t-b-ex stated that a large limb fell from one of the trees in the yard and he broke it up for me. Does he not realize that now instead of moving a limb, or a couple of manageable sized pieces of a limb to the brush pile is infinitely easier than picking up hundreds of little pieces of twigs of varying sizes and making several trips? And then having to take up the REALLY small pieces? Does he remember that most yard work is hard for me, especially in all the heat we've been having- due to it being the middle of summer- and all the stress I've been under which causes my MS to flair up!

This is just the last in a long line of "helpful acts" which cause me more work, stress, frustration, fatigue, and yes anger.

It's easier to not get upset when my son is the one "helping" because with his autism it's a miracle he wants to help in the first place and I want to encourage that behavior. But my s-t-b-ex? He's 41 now, I can't think of an excuse that would work for him. Don't get me wrong, I appreciate any person wanting to help, and let's face it, I'm not good at accepting help but appreciating the thought and appreciating the extra everything it puts on me are 2 VERY different things.

So, thank you for WANTING to help, and thank you for helping (if you do it so I'm actually helped), but PLEASE don't help if it makes it harder for me. That's not helping. Not in the least.

Mixed feelings kind of day

So, I just finished my previous post about how grateful I am to be exactly where I am and am supposed to be. I decided to write this in a different post because it just doesn't "go with" what I just wrote. Although I still even in this moment believe and stand by my last post.

Again, I'm sitting on my couch although the ice pack is now back in the freezer until I need it later in the day. I find in my self reflective kind of mood that I'm finding it very difficult finding the balance in my life. I find myself more and more spending any down time stuck on the couch recovering.

There is so much to do every day. I don't have the time to rest as often as I should. I have staff who have all the excuses in the world as to why they can't mow the lawn. Some are valid I know, but some just don't want to work. In the last 2 weeks I have had to mow my lawn each week and a lawn for one of my homes. I understand having to mow my lawn. I own a house and only live with my 9 year old son. I get it. I accept that it is my reality. But to have to mow at work when my neurologist doesn't want me to mow ANY lawn it gets frustrating. I physically pay for it for days, but can't take the time I need to recuperate. There is always something else that needs doing.

I'll admit, my housework suffers for it on a weekly basis. I don't clean as often as I probably should. I have been saying for weeks I need to go through Wills stuff in the dining/play/therapy room and purge/organize. Still hasn't happened. Ok, so I cut myself a break and try not to stress too much about it. But I still have to get laundry done-- we both need to be clothed (no one wants to see me walking around naked I promise you that) I still need to go grocery shopping (btw, just found out that due to budget cuts at work I will be taking over the grocery shopping for all three homes and will have to make myself start doing the coupon/somewhat extreme couponing thing for all of them. I'd rather be tortured then have to spend that kind of time on flyers/coupon clipping). I still have to be physically active with my clients AND my son. And then there's all the little extras like the art show at Wills school last night which also included a scavenger hunt, frisbee golf, and a couple other activities.

I had to force my son to leave early, even though he was enjoying himself and socializing, because my legs weren't working right. They were aching so badly and I couldn't lift them. I was walking so slowly and stumbling over the uneven ground because I couldn't pick up my feet. When Will went to bed I had to go to bed too. There was no way I was going to be able to walk down those stairs and then back up them. I slept almost 12 hours last night and my legs are still aching and like lead.

So what am I saying? I'm still resentful of my MS. I feel like I am getting weaker with every day that passes lately. My stamina is decreasing, and with no significant time to rest I don't see how this will change. But it's imperative it changes! If I don't have the time now, what makes my body think I'll have the time when it shuts down on me? I'm caught in a vicious cycle and I can't seem to get off the damn ride.

So again, it comes down to balance. How do I find the balance to do everything that needs doing and taking care of and listening to my body the way it needs to be taken care of? Is there an answer? Maybe I need to continue the self reflection and learn to ask for help, hold others accountable for promises made and their responsibilities, and put myself first once in a while. What a foreign concept ;~}. Maybe, just maybe this is what is needed to be incorporated in my life......

Maybe.....

Reminiscing and voodoo dolls

Did I get your attention at voodoo dolls? Well, my ankle is a little messed up and I don't know why. I'd call the dr but can't afford it. Anyway, I've been given a couple of possible explanations as to what could have happened. My explanation was that I made a mistake in my sleep. My favorite? Someone used a voodoo doll. ;~}

Who knows what the real answer is, maybe the doctors are right and I'm "at that age" (hush your mouth!). Anyway, it's just one more thing to add to the ever growing list of issues to accept and deal with.

But you know what? I'm ok with that. Today, I'm in a pretty good space. My son is doing well, some bumps along the road sure, but overall he is amazing. My MS is maddening for sure, depressing sometimes and overwhelming occasionally, but I'm very lucky that it really IS a quiet case. So for today, on this wet and dreary day, I'm feeling pretty good about things. Gimpiness and all, it's a good day.

When will I learn?

I mean really, will I ever learn? Is it a matter of learning? Cause let's be honest. I DO know, I just refuse to listen to my body.

I have over done it again. I knew I had, I even knew it while I was doing it, and even before I started. I did it anyway. As much as I've accepted I have MS, and understand the effects on my body (to the extent that I can, it changes all the time) I still don't listen. I still joke it away to friends and family, but you know what? It really really sucks. Mowing the lawn shouldn't flatten me for days. Going for a walk with my son and trying to be active shouldn't wear me out to the point of days of exhaustion and weakness. This weekend I did both in the same day. 45 minutes of walking through the Maine Audubon in Falmouth and then mowing the lawn after 2 hours of sitting in direct sunlight (another killer for me)

How am I supposed to balance what I need vs what needs to be done? I need exercise. My son needs to exercise. He will sit and be on the computer and wii if I let him. I need to push him to be active, I can't do that if I'm not out there being active with him.

The lawn needs to be mowed, I have. no one to mow it for me, and let's be honest, I wouldn't ask anyone to do it for me. It's my responsibility and no one else's.

My son needs to socialize, he doesn't do enough of it with kids his own age, so of course I have to take him to a birthday party he's invites to....even if that means its outside in the sun with no shade.

So yes, I resent my MS. I hate it. I hate that part of me that is weakened because of it. Because of my responsibilities to my son, my home, my family, friends and myself I don't usually listen to my body. I pay for it later in the day, and for a few days after. Of course, I can not indulge my body even when it is shutting down on me. There is always a bedtime to enjoy, work to get to, and many more expectations in the coming hours and days.

Lately I am so exhausted all the time, I have aches and pains and a crushing fatigue that plague me constantly. I have moments where as much as I will my body to move it won't. How can I stop though? Where's the give? When will my body finally give up the fight and say enough is enough? How long will it take to recover then?

This is my big fear, there are too many responsibilities all the time to stop and take a couple days of doing nothing and resting. And yet, I fear if I don't I'll be useless to Will and everyone else for much longer than that.

Now, there is also an interesting twist. I have recently started to have a love life and social life. This has also put more demands on my body, and like with my son. I enjoy these demands ;). So how do I juggle these demands on top of the demands of my responsibilities. And don't I have a responsibility to do for myself and have a life too?

This is what has been on my mind today while I work. Sitting on the couch, struggling to use my hand to write my daily notes. When will I learn?

Me and my MS

I try to be positive in everything I do, think and be. I know I have my moments, and honestly, this is one of them. So please forgive me for taking tonight to vent (again) I promise I will be positive again tomorrow.

I have MS. I was diagnosed 7 years ago and overall I think I have accepted it pretty well. Then there are days like today, I resent my MS! I hate that I am not able to do things I should be. I have days like today when I get so discouraged. I live every day with the silent symptoms. The tingling, the random joint pains, the pins and needles feelings, and the worst: FATIGUE. Of course, no one can see my symptoms, so I look fine. That's a good thing, but can also hurt me at times. Of course, I usually hurt myself.

I get so frustrated with my limitations that I push myself much further than my body can actually handle. Sometimes it's accidentally, I feel absolutely fine until I've gone too far and it hits me like a ton of bricks. Then there are days like yesterday when I do something I KNOW I shouldn't. I mowed the lawn at work. Now, that doesn't sound so bad right? For a normal person it's not. For me? I get sick, and have major fatigue for days. The day after (today) is always the worst. I can barely move my arms. My legs aren't quite as bad. I am having to really push myself to move at all, as soon as I sit it feels like I'm paralyzed (even though I know I'm not) but to get moving again is a Herculean effort.

It doesn't help that I also have a new symptom: tremors, yeah me! So my hands are shaking slightly and between that and the lack of strength writing this is an effort- auto correct is my friend tonight.

I will be fine in a few days, by the end of the week for sure. And my wonderful optimistic sense will be restored by tomorrow. Thank you for letting me rant about the stupidity of MS, but at times like these when I'm reminded of my imposed limitations that it gets a little overwhelming.

Life is great.....This is Gods way of telling me to take care of myself right?