A Fine Line Between MS and Depression
MS Fatigue or what they call lassitude is when you are physically and mentally drained. The ability of doing simple task is draining. Going anywhere or doing anything becomes crippling. MS Fatigue can easily be misconstrued as depression. Not to mention it can lead into depression because you begin to feel useless, bothersome and alone. So, you can see how there is a fine line between MS and depression.
I was diagnosed with MS about 5 years ago. In the beginning I was blinded with a lot of “what if” statements. What if I can never walk again? What if people get tired of taking care of me? What if my boyfriend leaves me? What if I cannot have children? The list goes on. But, I wouldn’t say I was depressed but more overwhelmed with the diagnoses and the unknown.
It did take me a couple of years to get a handle on things dealing with my various symptoms. For a good solid 5 years nothing new came up. I grew up in sunny Los Angeles California and was diagnosed during the drought. My body didn’t know what cold was till this past winter; it went from cold, to warm, to hot every other week.
I started to realize that my body couldn’t handle the extreme climate change; it couldn’t adjust fast enough. It just decided to, what I call, “breakdown”. My fatigue went on overdrive. I could barely stand up or walk. Not that it hurt but the amount of energy and effort to just get out of bed was crippling. It was like I was caring a 100 pounds around each ankle. Going to work became harder and harder; I did go but I was a zombie sitting at my desk.
What made this worse is now my fatigue was so extreme I couldn’t sleep. Then the not sleeping made me anxious. I was at my wits end. My doctor did prescribe me sleeping pills but they no longer seem to work. I contacted my doctor on a Thursday morning. He advised me to speak with my Psychiatrist, the one I first spoke to when I got diagnosed. He expected that I had too much in my head going on that was keeping me awake; those “what if’s”. Maybe I just needed to talk this out.
My Psychiatrist first advised me that he wouldn’t be able to speak with me until the following day after 6pm. I thought to myself “I can manage this, not a problem, just one more day of little to no sleep. Then at 8pm on Thursday night my Psychiatrist texts me that he cannot meet with me tomorrow at 6pm and doesn’t look like he has the time to work with me and wished me the best. “Are you f**king kidding me” was the first thought that came to my head. You are telling me this at 8pm at night. My anxiety went to panic. I questioned him if I should go to the ER. “ERs are very familiar with your condition” was his response. Thursday night off to the ER I went; with no sleep, anxiety, not far from a full blown panic attack and crying historically.
The ER doctor began with those questions: “Do you want to kill yourself? Do you want to live? Do you want to hurt other people?” Each time my answer was “No, I just want to sleep” I tried to explain that I had MS that’s linked into fatigue that linked into no sleep. Each time after I went through my explanation here came the questions again. “Do you feel useless? Do you feel alone? Do you want to kill yourself? Do you want to live?” Again I said “No, I just want to sleep”
This went on for about another 5 minutes he explained that the ER cannot give sleeping pills. He explained that I would need to speak with a Psychiatrist, “Do you want to speak with a Psychiatrist?” this first of two questions that sealed my fate of 51 /50. I responded “Yes”.
After 10 hours sitting in an ER room, my boyfriend left the room to have a smoke. When he left is when he was told I was on a “Hold”, on a suicide watch and couldn’t be left alone. He was upset. He asked if anyone had told me and they explained to him that they didn’t want to further upset me. He tried to take me home but they continued to say that he couldn’t until a Psychiatrist clears me.
I sat and waited for another 3 hours. Finally this young woman who I assumed to be the Psychiatrist came and with those same questions and I gave that same answers of “No, I just want to sleep”. I was getting frustrated and just wanted to go home. She repeated those same questions multiple times like wanting me to trip up and give the answer they wanted to hear. I went through the explanation that I had MS. I told her of when I was first diagnosed and how it was difficult to deal with in the beginning. Then there was a moment of silence “How long do you want to sleep?” she asked. “I don’t know an hour, a day, months, FOREVER, however long till this feeling of exhaustion goes away.” I responded. There it was the one word they have been waiting for “FOREVER”. The response they wanted to hear finally came out of my month. Not intentional but out of frustrations. That single word sealed my fate “FOREVER”. With that she walked out the room.
Now it turns out that she was not a Psychiatrist she was a social worker who was there to deem me eligible for a 51/50. Meaning I could have left at any time prior because the order of the 51/50 was not signed until the following Friday morning at 11am. Meaning I was lied to about my status and now being sent on a 72 hours of hell.
I demanded to be told what was written and of course all my words were twisted. She stated that I was lost with the diagnosis of MS, having a difficult time dealing with it and had no will to go on. She took my past experience and made it current adding that I was depressed and wanted to sleep forever. I demanded to be reevaluated but nothing can be done once that order is written. That only a Psychiatrist can take me off the hold. Not to mention no one has yet address that I hadn’t slept in over 4 days.
Finally at 2am Saturday morning I was being transferred to a psychiatric word 32 miles away by ambulance. My boyfriend assured me I would be okay. My sister told me to just do whatever they ask me to do.
Once I arrived I was admitted by a nurse that once again asked those same questions. I tried to explain how this all went wrong. But, as I was told before; ‘no one but the Psychiatrist can release the hold.’
All form of privacy was taken from me. I was told to remove all my cloths as they examined me for contraband. They took all my belongings and gave me a hospital gown. I had lost all freedom and control; due to that one word “FOREVER”. I was first assigned to a room by myself. I still didn’t sleep that night because someone came into my room every hour flashed a light on my face to make sure I was still alive and in my room.
As soon as day broke I jumped out of bed and eager to get out of there. Trying to figure what I am suppose to do there and where I was suppose to go. They handed me food that was probably warm four hours ago. They explained to me that depending how I participate and control myself I would be given the privilege to go to the cafeteria and get hot food. I asked about seeing the doctor but no one could tell me when they expected him and that I would just have to wait.
I wondered from room to room trying to stay away from everyone. There were actual crazy people there. People who wanted to kill themselves, multiple personalities, schizophrenias, girls with eating disorders. I honestly felt like I was dropped in the movie Girl Interrupted; the difference is it was coed. There were aggressive men just wondering the corridors. There was one that would grunt and lunge at you as you walked by. Another that looked like he hadn’t seen soap and water in over a year. There were girls with bandages around their wrists. There was one woman that just paced back and forth down the hall talking to herself. I was lost.
Finally at 12pm I was seen by my doctor, all of less than a minute. “Okay looks like you will be here till Monday” he stated. “Wait this is a big mistake I have MS and the social worker misunderstood me” I frantically tried to explain to him. “Well that might be but you are here till Monday. I sure they had their reasons.” He stated as he signed pages in my file, never once looking up at me. He called out for the next patient. “Wait a second; aren’t you going to evaluate me?” I began to panic and cry. “It looks like you are unstable; I’ll prescribe some anxiety medication.” He signed another page in my file and called out for the next patient. As the nurse led me out I said “I don’t have anxiety, I need sleep”
Just like that I was lost within the system. I was just a number on a binder, nothing else. He didn’t care or want to care to listen. He just was going through his procedures and signing away on people lives. It’s now been 5 days without sleep and no one has addressed it.
I was assigned two roommates. One that heard voices in her head and talk to herself nonstop, the other tried to kill herself because her boyfriend broke up with her. I spent my days going to group meeting; listening to people I literally had nothing in common with. People talking of being alone, helpless and wanting this to all end. I learned that any extreme emotions expressed they will note you as unstable. If you slept all day and never left your room; which I did the first day, it was noted that you couldn’t handle daily life. If you didn’t bathe each day, you were listed as unable to take care of yourself. If you didn’t take the meds they prescribed you were noncompliant. Everything was just black or white, there was no grey. No individual cases just people lumped together and cattle from one room to another. Each day I would see my doctor and he said the same thing. “Looks like you will be here till Monday, next patient”
What was only three days turned into four; once again I fell through the cracks. My doctor signed my release paper for Monday and a caseworker was listed to visit me on Sunday; she forgot and left early. When Monday morning came around my doctor tells me that I can’t be discharge until Tuesday. Technically my 72 hour hold isn’t up till 3am and they don’t discharge at that time. By law they are required to have documentation establishing why a patient is at the facility. They require you to sign a document stating that you are there voluntarily. If you didn’t sign you would automatically be put on a 14 day hold. Not only was I placed here against my will, now I have to state on a document that I want to be there.
Tuesday morning came and I had yet to see my caseworker. I had read on my paperwork that I was to be discharged at 8:30am. So, my sister got there at 7am. They even told her to go for breakfast and come back later; she refused. She reminded the front office “by law since she signed the voluntary paper she can leave at anytime and refusal of letting her go is against her rights.” All of the sudden my caseworker appeared and was out of breath from rushing to be there. She became frantic on trying to get me out by 8:30am.
There were over 25 people in my facility ward and I was one of three patients that had visitors. I was the only one that had visitors every day; twice a day. My mom called every morning begging the nurse to let her come during my lunch time to bring me food. My family was relentless and fully supportive. Reassuring me every day that I’m okay and this is not my fault. Every time they left me there I wanted to scream out crying; I didn’t because it would look bad. My boyfriend called me everyday several times a day stating he was my husband, the only way they allowed him to speak with me. He didn’t want to visit afraid he would make it worse; he was just full of rage because he couldn’t fix the problem.
In evaluating people that appear emotionally unstable they need to ask more than the simple question of “Do you want to kill yourself?”. Doctors need to spend more than 2 minutes with a patient to really diagnosis them and try actually listen to them not just listening for a buzz word to sign them off on. I understand that yes there are people that are depressed and do want to hurt themselves. I was not that person. I did everything I was supposing to and got no help; instead got labeled suicidal based on the fact that I was restless, anxious, and emotionally distraught. One word changed my fate that day “FOREVER”; I said this out of frustration. They berating me with the same questions over and over till they got the answer they wanted. Never once was my medical history reviewed. Never once did they contact a neurologist or my primary doctor regarding my MS; even though I asked. Never once was the issue of sleeplessness addressed. Never once did anyone listen to me or my family members.
All this experience taught me is that unless I have a broken bone or bleeding profusely then I may go to the ER but I will not cry too much because then I might be deemed unstable and placed on a 51/50 and left bleeding. Yes, there is a fine line between MS and depression, and not understanding the difference can be the difference between freedom and imprisonment. MS is a disability. It’s time that all the symptoms of MS are recognized not just the physical that can be seen.