Five Stages Of Grief
1.Denial and Isolation.
At first, we tend to deny the loss has taken place, and may withdraw from our usual social contacts. This stage may last a few moments, or longer.
2. Anger.
The grieving person may then be furious at the person who inflicted the hurt (even if she's dead), or at the world, for letting it happen. He may be angry with himself for letting the event take place, even if, realistically, nothing could have stopped it.
3. Bargaining.
Now the grieving person may make bargains with God, asking, "If I do this, will you take away the loss?"
4. Depression.
The person feels numb, although anger and sadness may remain underneath.
5. Acceptance.
This is when the anger, sadness and mourning have tapered off. The person simply accepts the reality of the loss.

In a recent post that I made, there was a mention in the comments about the 5 stages of grief. Which is one of those things that I've heard about but sorta just yea, yea, yea-ed and didn't really consider. I'm not sure if I've ever really looked into this model until now and I gotta tell you, I'm not sure that I buy it. I do think that it nails down some of the major aspects of grief but to put them into clear cut steps like this, I think is a crock. I'm not sure if I'll ever reach true acceptance, because Idon't understand what my future will hold.

I think this step might work for a death, or divorce, or job loss or something, but for our disease I do not think this model works. Hell, I might run through that whole list in one day. I think that if I were to follow this list I would be eternally stuck on #1. I have a big problem with denial...not denial of the MS, but if what it restricts me from doing...or remembering...or thinking. And I also think that no matter what kind of "support system" we have, we will always feel some sense of isolation. It is incredibly isolating to be feeling something that literally no one else can understand. I go through stages related to this model all the time, but to say that the anger, sadness, and mourning will taper off is not something I can accept. I do not think I'll ever stop being upset in someway about this. I can accept that I have it, but for me that doesn't mean I will not feel those other things.

I think that acceptance of a disease has an entirely different process that never ends. I was just talking to Dana about this and how I think its common after your first year of diagnosis to think you've accepted this disease. You think you're ok with it, and life will go on. But then shortly after, something clicks in your brain and you realize you haven't accepted it. I think that the path to acceptance is long and curved and it has breaks in it. I think the path to acceptance of a disease like MS is more like a labyrinth. You can try all you want, but you may never find the end.

You may have years where you're totally ok, physically mentally and then all of a sudden something happens and you are put right back to the beginning. The sadness, isolation, anger can rear their ugly heads again and THAT IS OK. I know I'm only 2.5 years in, and for the most part..I'm ok. But sometimes, some days I feel all 5 steps within 1 day or a few hours. It can be overwhelming and depressing, but remember a lot of people do this. Its so hard to accept something that has no clear cut guidelines. Remember that this shit is hard. Its not fun. And it can be down right painful sometimes, but this is life. If it wasn't this, it would be something else and the only choice we have is to live through it. You take it step by step, minute by minute, and relapse by relapse. Its ok to never stop being mad that this happened to you, but its not ok to let that hinder your life.

I had a conversation with a good friend today and she was explaining to me how it just didn't seem like I was affected by MS. "I know I don't see you every day, but you seem like the same Dana you were before MS," she said. I think that what she really meant, was that it was hard for her to understand, because it didn't seem like I was physically dealing with anything. I did a lot of explaining about MS, and how it works. I explained that following my attack in November, there are parts of me that aren't ever going to be the same. Symptoms that I am going to continue to have, on a coming and going basis. Because my symptoms aren't necessarily painful, and because they aren't visible to others, I understood why it was so hard for those around me to really understand. I explained to her that I didn't really expect anyone to "get it." I didn't mean this in a negative way at all, I was just being honest. I said that if the tables were turned, I would feel the exact same way that she did. When I was having this talk with her, I ended up making a point that actually sort of shocked me, since I don't feel like I'm all that great at expressing myself lately. I told her that although my symptoms aren't generally painful, and I'm not scootin' around on four wheels, I am reminded of my disease each and every day. Whether it's my little pinky that's shaking uncontrollably as I write this, or parts of my face going numb, or some random muscle twitching like mad, for just a few minutes. These things are so small and they aren't typically painful, they are irritating at best. Everyday though, these invisible symptoms are my reminders. I am reminded each and every day, sometimes in very small ways, and sometimes more dramatic, that my body is ever changing. I explained to her the fears that I have had to deal with, have been one of the most difficult parts of this disease. I like to think I'm tough enough to actually deal with the physical or cognitive symptoms that may rear their ugly heads, but I fear what this would do to the people I love. Maybe I'm not yet ready to admit out loud that I fear becoming a burden on those that I love; that I'll be a source of shame, or that my life will cease to provide some greater purpose. I'm smart enough to find consoling words for myself, so I don't necessarily feel like this is something I need to hear from others. I am not so consumed with these fears that I can't see straight, but for me to deny that there are moments when I become overwhelmed by them, would be downright false. 

I am just five months shy of finding out that I have MS. This is still fresh for me, and sometimes I forget how new it really is. Although I'm not dim enough to feel like I have totally come to grips with this disease, sometimes it feels like I'm just starting over completely, back at square one. I found myself hanging out on the bathroom floor yesterday, begging whoever the hell was listening to my silent plea, to just take this away. "I don't want this anymore" was what I kept saying. How appropriate that I should hide myself away in the smallest room of the house. I feel like so much of this disease is about hiding from others how broken we sometimes really feel. I know I'm not the only one who spends unnecessary energy making sure that others don't know how shitty I really feel, and I'm talking about emotionally. And on the flip side of this, when I am spending time with others, I generally don't want to have go out of my way to let them "know" angry or sad or scared I sometimes feel. I don't want to beg people to see how "affected" I am. This surely only adds to the fact that it may seem that I haven't been changed in any way by MS. This disease has left me at times, feeling more isolated and alone than I have ever felt in my life. I don't necessarily feel like this is something that will change either, and I don't totally think that it has to. I have a community online in which I can find true understanding, and I have family and friends from which I can find true compassion, but I think there will always be moments where none of this is quite enough. I have read various crap about how we're really supposed to be our own best friend, and I sort of understand this a little better these days. There will never be someone who knows "me" better than me. Maybe these little "bathroom breakdown" moments are just part of what keeps me being "mine" and mine alone. But anyway, enough about me and my feelings. Barf.

I never ended up getting weighed in after my month of working out. I finally weighed myself, (but didn't take measurements) and after 7 weeks of intense work outs I lost 1lb. 1 fucking pound.

This is beyond discouraging. I was talking about this with the doctor and he suggested some thyroid tests. And at this point in my life, I would gladly take a malfunctioning thyroid because then I would have some hope. Well I got those results today...I am A-ok in the thyroid area.  WTF.

I know that I feel better in the sense that I can do things longer, and be less winded. And I know that being mobile and feeling good is more important that looking good, but damn it, is it so wrong to want to look good too? I understand why people give up and become severely obese. I get it.

i'm not sure what to do anymore. I have cut out all the easy stuff, like pop, fast foods and snacks. I eat more veggies and fruits. I eat smaller portions, and have changed my protein intake. I eat my larger meal during the day and have a smaller one at night.

I feel depressed and hopeless at this point. I'd love to talk to a dietitian or nutritionist and get their advice/opinion but oh wait....I can't afford it. (for  a profession that is so concerned about helping people, you'd think their pricing would be much lower than about $100/session)

I do live alone, and I do have a house payment, so buying expensive foods isn't really in the plan either. I don't really buy quickie meals, I do try to cook, and I don't use that many ingredients. I don't understand what I'm doing wrong here. I eat better than I did before I joined the gym, and I'm working out a min of 3 hours a week.

I have thought about doing the Swank Diet, but starting a life long diet plan seems like such a process. It seems damn near impossible. I don't want to be one of those people who can't go out, and can't do anything because they can't eat anywhere but their own kitchen.

Does anyone do the Swank Diet? What do you think? Does anyone have ANY suggestions for me.

Ugh. Whatever. I'm in a real shit mood today. It feels as though my moods have been severely effected by the weather lately. When it rains, I find it hard to leave my house, when its sunny I am  happier than can be. And it has been raining for the last 2 days....

So lets talk about how I feel like an idiot ALL THE FLIPPIN' TIME. Dana recently talked about her cog fog problems, which I can totally relate to. There are definitely times where I just cannot process a real thought, and other times where I really have to work to understand what someone is saying. I give people this "deer in the headlights" face often, but it really just means that I'm trying like crazy to follow the conversation.

I used to pride myself on being a intelligent, educated, and thoughtful person with an extensive vocabulary. However over the last 2 years or so I'm pretty sure I'm getting dumber. I have even in fact, honestly and sincerely asked a few people that I know if they think I'm getting dumber.  And it appears to be getting worse. I cannot remember things to save my life, and I have all these people I know who say things like "oh I know, I can't remember stuff either" or "i forget all the time too!". Wrong. This is different. I hate to pull the "I'm dumber than you" card but I'm gonna. You can take some ginko and remember stuff...I can't make my myelin grow back and repair the holes in my brain. I think I trump you. I win. It's different.

This morning I woke up, and remembered I had a meeting for work, one that required me to look nice and put make up on, you know to make people think I really do know what I'm talking about. Its all doom and gloom outside so I was bummed that I'd have to walk across town in the rain and my nice pants to go to this meeting with people I've never met. The meeting is scheduled for and hour and a half from now, so I started to prep myself for it. I reread the email from the coordinator about the meeting....Blah blah blah....location....time....date....  Ok got it. Thursday at 3.

Well on my planet today is Wednesday, not Thursday. I had spend all last night and this morning thinking this meeting was today. I read the very same email last night before I left work and went, ok yup, 3 on Thursday. Now this may be a fairly innocent error, could happen to anyone right? But it doesn't. It doesn't happen to everyone weekly....daily.

My boss even recently made a joke about my forgetfulness, which is when it sorta really truly hit home. People are noticing, and not only am I forgetful but its making me, a once intelligent, educated, well versed person, now look a total complete ditz. I would say its humbling, but it was humbling the first year of my disease. Cognitive issues definitely took me off my "I'm smart" high horse. Not only have I proven to myself and the world, that I am in fact not smart, but am also getting dumber.

I don't have many people in my life who let me feel sorry for myself in these instances, which is helpful. But until meeting Dana, no one understood it. No one gets whats its like to know that you're not dumb, but for everyone around you to think of you as the ditz. No one gets what its like to actually have to concentrate on normal conversations just to understand them, or what its like to write EVERYTHING down, but then still forget about it.

I write EVERYTHING down for work, otherwise I will truly walk around like an idiot. If I forget my notebook, I'm worthless. But even sometimes when I write it down, I forget. I do everything I can to stay on top of the black hole that is my brain, but it seems like no matter what I do to fight it, its getting worse.

I don't ever feel like my head is clear and focused. It feels like a case of ADD and Alzheimer's combined together. I can't focus, I can't remember, sometimes it even feels like I can't learn anything either. Having cognitive issues is one of the worst that I've ever experienced in my life. Its enough to put even the cockiest person in their place. It almost makes you feel like you don't know who you are anymore. After all, if you can't control what goes on in your head, the way you think, talk, and interact with people....who are you? You sure as hell don't feel like yourself.

So I'm getting all teary and stupid over this, but what happens when I don't remember what it was like to be me. To be a smart intelligent person who could be insightful and carry a conversation? What happens when all I am is the flaky space cadet who can't remember to put on pants every morning?

I guess everyday will be a no pants party.

So today was my first follow up neurologist appointment since starting Avonex. I went in with a few questions written down, since I seem to space out immediately upon entering the office. It seems like everyone is zombied out, from the lady at the front desk, to the nurse, the other patients waiting in akward silence. I half read some stuff on stem cell therapy in Neurology Now, but couldn't really focus much. I just brought my copy home.

 Anyhow there was the typical exam with pins and pokes and walking and the like. My doc seems to think that I'm doing well, and I'm pretty sure I am too. I asked about the fact that there hasn't been a day since November that I haven't had any sort of symptom, be it buzzing or numbness or what have you. I asked if this was normal, as in is this what "remission" is like for me. It's different for everyone, and I know this. I am just wondering if remission for me, or for anyone, means feeling absolutely NO symptoms whatsoever for any length of time. He couldn't really answer that, and I suppose this is okay. I also asked when I would have my next MRI, and he said either if I have a worsening of symptoms, maybe in a year, or perhaps if the specialist wants one sooner.

Even though I knew going into the next question what the answer would be, I sort of wanted to know what his take would be. So, I asked if when they looked at the results of the next MRI, if they would be able to tell me if the Avonex was really making any sort of a difference. At first he said it depends on what week you ask him that question, since opinions are always changing. He then went into the schpeel about how short a time the drugs have been on the market, how we really don't know if they're helping this generation of MS patients, but there is a chance that perhaps less will be disabled, as in wheelchair bound and the like. It was the answer I expected, and I appreciated it. I know it isn't his job to feed me a line of crap, and he didn't. I was pleased.

Another one of my questions was in regards to the cognitive issues I have been dealing with. His response to this was to ask me if I was depressed, which I do understand. I realize that depression can play a huge factor in cognitive issues, but I don't necessarily think this is my issue. Understandably so, I'm not the happiest I've ever been in my life, but I'm certainly nowhere near the saddest I've ever been. I feel pretty even keel right now, especially considering the circumstances. He suggested I sit on the issue until the next appointment, and then possibly think about starting anti-depressants. While I appreciate the thought, anti-depressants are not on my list of to-do's. I have had pretty negative experiences with them in the past. I'm not writing anything off completely, but it would take a heck of a lot of depression to put me back on medication. I think the cognitive issues will be something that will probably be better addressed with the specialist, which is a-ok with me.

I didn't really come away from the appointment with anything I didn't know before, and this is just as well, and what I expected. I understand that we can't expect doctors to have all of the answers, especially when it comes to a disease like MS. In a sick and twisted way, I sort of enjoy being somewhat on par with my regular neurologist in terms of knowing what's going on with my disease. On another note, I was hoping he would redeem himself today, after my unimpressive prior visits. I am happy to say that he was the least zombie like out of everyone in the office today. I have found that just being more assertive and demanding with him seems to work a little better. I also think he appreciates the fact that I'm doing my research, and not simply relying on him for all my information.

I hit a low point Friday. I was at the gym, starting a new class that I hadn't yet taken, and things started to feel funny. I just assumed it was due to the previous work out, like everything was just sore or something. Well less than half way in, I was already taking breaks, and just feeling wrong. My legs were on fire and I was having balance issues and started to get shaky. Then I got this pain in my lower back on the sides that I had never felt before. I finally just took my own cues and left the class.

It was humiliating. Here I am, you're average 24 year old in a class full of people ages ranging from probably 18-50 and I'm breaking every other move, and finally just gave up. I can't help but to wonder what those people were thinking of me. My body temperature was through the roof, so I left the class, grabbed my phone and texted Dana while I sat on the bike. I was on the exercise bike, because I didn't want to stop "working out" but I knew I needed to turn down my temperature. I told Dana how embarrassed I was. How much it sucked to watch little old ladies getting through this class when I couldn't do it. When I was in physical pain because of it. It was horrible, and I think it essentially has set my tune for the last few days. I've been in this melancholy state since Friday and I just can't seem to shake it. There have been times when I felt tired or weak, but I've never had to quit something before. I've never not been able to do something. I left the gym and went to my sister's house to hang out and my face was on fire. I had red cheeks for well after an hour after leaving the class. This is not right for me. It seems like anything I do lately, turns my face red. Not like the "shy blushing" red, but the "I'm working so hard, I might die" red. Today I'm having some lower back pain which for my is a symptom I haven't felt in a LONG time. Which isn't helping my mood.

I hate feeling like I can't do something. I hate feeling limited. I hate being embarrassed. I hate feeling like I was confident in something and then shortly after like a fool for feeling that way. I also really really hate not knowing if I'm having a problem because I'm lazy, or because I have MS. I often feel like the lines are blurred for me, but this time I know. I know I couldn't do those things. I also hate knowing that few people will get it. Most people just think I'm out of shape and tried to over-do it, but I really don't feel like that's the case.

I know we all hit low points, but I hate it when I do. I have another class tonight, and I'm nervous about going. I'm scared I can't get through it again. I'm freaking myself out into not wanting to go to the gym at all anymore, which is no good.

Ugh. Today is just no good.