From Relief to Overwhelmed

When I was diagnosed I gave myself a timeline of how long it should take me to be okay with having MS. I would say in a year from now everything will be fine and back to normal. I learned, although not fast enough, that somethings in life just can't be mapped out. I had to give myself all the time I needed and not rush myself through all the things I was feeling.

I realized the other day that I've gone back to setting timelines for certain aspects of my life, one in particular being my health. I have visits with my neurologist and my MS specialist every 4-6 months. When I saw the MS Specialist this past June, he referred me to a neuro-ophthalmologist. I had thought he had said if the neuro-ophthalmologist found anything that we would start looking at treatments. But after my most recent appointment with him last week that doesn't seem to be the case because although things were found he isn't ready to commit to the diagnosis of MS or put me on treatment. He wants to repeat the MRI in 6 months and then go from there. 

I've been using these 6 month periods as timelines thinking okay so after these 6 months we will look at medications. It wasn't until I took a step back and realized what I was doing that I'm able to stop myself. I'm learning to throw these timelines out the window because ultimately I have very little say in what happens 6 months from now as far as starting treatment is concerned. I think throwing away these timelines is going to be the only way to protect myself emotionally and ultimately protect my sanity. I think it might be the only way I'll be able to come out of my next 6 month appointment and be okay with not starting treatment should that be my doctors decision. 

At the end of my appointment last week I was so ready to throw in the towel and give up. I went in the span of a month from feeling an immense sense of relief to a place with an intense overwhelming confusion and fear. Instead of just throwing the towel, I paused. I went back and reread a post I wrote last month. Last month I wrote about the relief I felt and how glad I was that I didn't give up and that I fought for answers. Even though the overwhelming-ness is back, I'm looking forward to feeling that relief I felt last month once again. I'm not setting time limits, I'm hanging on and looking to God.

I'm learning I have no control over this situation it's within my doctor's hands and God's will for me. Here's to trying to give this situation over to God and not trying to take in back into my control. I'm so thankful for the support system that I do have helping me to get through this very tough situation.

Two years ago this month, I walked into what at the time was a new doctors office to me. Little did I know that it wouldn't be the last specialists office that I would walk into. At the time, I thought this is it...this is the last doctor. I'm going to get off this medication and switch to something else.

Two years ago this month, I heard words that I never thought I would ever hear. "I'm almost 99.9% sure that you don't have MS...there's nothing I can do for you." Some may think well that's a good thing right? And I guess it would be if not for the symptoms I experience. Deep down I knew something was wrong and I was pretty sure that something was MS.

Since that day, I've lived in so much fear and anxiety. Fear that I would get worse before they figured things out. Fear that they might not figure out what was wrong with me. Fear that I would end up giving in to the unknown and once again give up my fight for a diagnosis. I struggled a lot with wanting to just pretend that things were okay. Pretend that I hadn't lost my vision for a short period of time. 

Two years ago, I was overwhelmed with the fear, anxiety and the roller-coaster of ups and downs that I had taken a seat on. I could have let that take over me but I didn't. Today I'm grateful that I didn't give up. I'm grateful that I sought out other doctors and that I listened to them. I'm grateful that they saw what that doctor didn't see. I'm grateful that they referred me to other doctors within the neurology specialty when they needed to.

If I had given up that day, I wouldn't have the relief I have today. Today, I'm not overwhelmed with fear or anxiety. Today, I'm full of relief, the relief of having answers. Two days ago, I saw yet another specialist. He confirmed what I think I deep down already knew. I have MS. I'm so grateful that I didn't give up and have answers.

To those of you out there still stuck and being pulled down in what seems like quicksand don't give up. I know things may be really hard right now, trust me I understand. I've been there more times than I would have liked. But I do know things will get better. They may not be better in an hour, a day, a week or even a month. I know we want situations fixed quickly but I've learned that unfortunately that's not always reality. . Yes, it took me two years to get here but if I had given in and given up. I'd still be sinking. Hang in there because some day the sand won't feel so thick and overwhelming-ness of the situation will be gone. Hang in there because trust me if you don't your going to be missing out on so much. Trust me, things will get better. Have faith.

I'm not sure if it was because I was numb (emotional) before, just not feeling anything, or if it was because I had myself surrounded by a fortress of thick brick walls. Whatever the case may be I want to go back to that, to not feeling or whatever protection I had built up around me.

Growing up in the alcoholic family that I did, I learned quickly to keep my mouth shut and my feelings inside. I learned that sharing those feelings or asking for something I needed emotionally, would only result in getting yelled at. I learned to stuff my feelings inside, hide the hurt and pain and act like everything was okay. Everything wasn't okay but I was dealing. I wasn't feeling but that was okay because I wasn't feeling the hurt.

Maybe it was the counseling and working through my diagnosis that broke down my walls. In order to work through my diagnosis I had to be able to feel my emotions. I had to be able to let myself get upset, cry, be angry, and the thousand other feelings I had as a result of my diagnosis.

Opening myself up to deal with the diagnosis, I think really meant opening up entirely. Not exactly something I realized at the time but I'm realizing that now. The memories, the feelings, and everything I needed that I had stuffed down deep inside was and is now free to come out. And boy did it come out or at least up. Everything I had stuff down, tried to forget and hidden is coming out. I'm feeling it all now. Honestly, it doesn't feel good at all, it feels horrible. I want it all to go away, stuff it back down inside. Maybe I'm not as ready to deal with all of this as I thought I was.

Stable

When you have MS, also known as Multiple Sclerosis, hearing that your MRI is stable is a good thing. At least it should be. But sometimes hearing that your MRI is stable can be just as hard as hearing that you have new lesions, sometimes harder.

This is one of the hardest roads I've ever been down. From the diagnosis of possible MS at 16, to the diagnosis of probable MS at 18, to the diagnosis of MS at 21 then being undiagnosed just before I turned 23. Then being told again that my diagnosis is probable MS six months later. It's definitely been a roller coaster ride.

It's hard when you are having symptoms with no reason why. They say its from the MS but the MRI's don't show anything new. It's hard, frustrating and drive you crazy. At least it's driving me crazy.

I'm at the point of not wanting to see doctors anymore. I guess it's a good thing that my neurologist set my next appointment for next December unless I have changes and/or new symptoms. It's been a hard road but I don't see it getting any easier. I don't want new lesions but I would like some answers. Answers would be nice.

Too Little Answers & Questions Left Unanswered

I thought things would be easier after my diagnosis, I thought the first year would be the hardest just getting used to the fact that I had MS and adjusting to everything that meant. But that's nothing compared to this.

I never wanted MS, who does? I wanted answers and the diagnosis of MS gave me answers, all the answers I needed. Things finally made sense. I didn't fully accept the fact that I had MS because I don't think that's something you ever fully accept. But it's something you learn to live with because it means you're not crazy and what you are going through is real. It made everything seem okay. But now my diagnosis of MS is unsure and I'm left with no real answers.

In the past I've put my life on hold waiting for answers. I'm not going to do that anymore because I've realized I may never have definite answers. I may never have a definite diagnosis of MS, for now on it may always be a "possible MS" or it could be some other illness. All I know for sure is what I'm going through and my symptoms. I know those are real. It's still hard though, not having answers to my questions. At times I'd like nothing more than pretending like I'm fine and nothing's wrong but I can't. I may be tired of being sick and having no answers but I will make it through. One step at a time, even if my questions remain unanswered. This is just one twist in the road that I didn't expect.