Autopsychotherapy and MS Cognitive Aids

I made that word up! Wait... I coined that word. Sounds much more impressive. After writing my last blog post, I went straight to my word processor and wrote my little heart out. And my head. Who needs a psychologist? ;)

This is what I wrote:

Thoughts March 10, 2013

I don’t know why I am so upset or why I am crying.

I think I am tired. I am worried I will not be able to sleep. I am worried that my sleep problem will never improve. I cannot be functional without sleep. Even with Ambien CR, I am not sleeping well. I am worried that my sleep therapy is not working. It’s not changing anything.

I wonder if I can increase my Ambien CR dosage. I wonder if there is another medicine I can add. I wonder if I should try increasing my Celexa dosage.

I wonder if I am traumatized by my surgery. After all, I was awake and felt them cutting. The wire hitting my dorsal nerves was incredibly painful. Then I had the fear of them giving up.

But they didn’t give up. They tried a little more and got it.

Maybe I am feeling sorry for myself. Maybe my tears are coming easily today, since I am so exhausted. That is normal for me.

I think I am anxious about the week ahead. I am so exhausted already. I was not able to rest, since B was here yesterday. But I love to see B. Can I not have anything I enjoy anymore?

OK, time to look for distorted thoughts.

Worried that I will not be able to sleep. This is fortune telling. Worrying about it might make it worse, because I might be anxious at bedtime. I don’t know what will happen in the future. It’s true that I might not be able to sleep. I can talk with Dr. Rob about it. I can talk with Dr. Eric about it. But I might sleep better again tonight. I hope that taking Flexeril tonight will help.

I would like to speak with Dr. Eric about my behaviors of speaking dream dialogue and acting out dreams. Also the weird breathing—is it snoring? Also fragmentary myoclonus—my finger twitches. I learned that sleep groaning is not from an emotional or psychological disorder. I learned that SSRIs (like Celexa) can exacerbate periodic limb movements, like sleep myoclonus. Maybe speak to doctor about discontinuing Celexa for a while. I keep seeing that clonazepam is used to treat fragmentary myoclonus. Can I try this? The fact that Flexeril helped me sleep makes me wonder.

Wow, researching Flexeril made me hopeful. It has helped a lot of people sleep. It has been shown effective for fibromyalgia, and I can’t help but compare that with MS—both being neurological.

About my possible traumatization from the surgery. I could bring it up with Ruth or Dr. Eric. Probably Ruth, since she knows me better. But isn’t all well that ends well? I don’t know how much it really bothers me.

About my fears of not making it through the week ahead. It certainly will be a busy week. But again I am fortune-telling. It is true that I might not be able to do everything. Or I might be exhausted. So I might need to miss some work. I would like to see all three kids on Monday. I must see J on Tuesday, and I must go to R's meeting. But I can miss R and maybe P. Rest up for R's meeting. On Wednesday I can go in late, start with C's meeting at 11:00. Thursday I should work all day. I know “should,” but it kind of is a should. I missed the last two Thursday mornings, and I would love to pull the boys for their 9:30 session. On Friday I can just go to Head Start for 45-60 min then rest before the pain clinic. That schedule should be manageable.

L will definitely drive me to the hospital on Friday. She can’t drive me to work on Thursday. Maybe A C and D can. Or just A C. I wish I could get a ride to St. Augustine on Tuesday.

I need to make appointments with the MS Clinic and the dentist. The dentist is definitely a need. I don’t want that broken tooth getting infected or breaking more. I would like to call tomorrow.

I am worried about working with A. His mom is so crazy. (Labelling!) But she does love me. Hopefully that love continues. I am really good at getting kids intelligible. She is excited to get back to Cycles therapy, since A has stagnated in the last month or so. I will probably need to coordinate targets with K, which may be difficult, since she dislikes me and is disinterested in trying Cycles. I can let A's mom fight that battle. I hope I can keep A interested and working with me for a full 45 minutes. If not, we can cut it to 30 minutes. I can work on Metaphonological skills, if A will cooperate.

Back to the dentist. Friday midday would work. Or next Monday afternoon. Or Tuesday afternoon, missing the Pals meeting.

I feel so much better. Points of action (as much as I can handle of this):

• Dentist appointment for 3/15 midday, 3/18 pm, 3/19 pm, or after work
• Plan A's session (mom wants to begin with /s/ blends)
• Put out the word that I am looking for rides on Tuesday and Thursday.
• Speak with Ruth about surgery
• Speak with Dr. Rob about Flexeril (possibly start), Klonopin (possibly start), Celexa (possibly stop), bowel issues
• Make an appointment with Dr. Rob (see above availability)
• Speak with Dr. Eric about speaking dream dialogue, acting out dreams, fragmentary myoclonus, groaning, possible snoring, relaxation homework, results of the intake paperwork I filled out (rating scales), chicken and egg with depression and sleep—seems insomnia comes first bc I am only depressed when I am exhausted and sleep deprived
• Look up MS memory strategies. Oops, forgot.

Here is what I found on MS memory strategies

• Memory exercises on a computer? (no evidence or testimonials that it works)
• Home or work strategies with notebooks, organizers, or filing systems to help you remember things

These were strategies that people with MS suggested on a message board:

• Notebooks for doctors
• Print out weekly calendar pages, take notes on them, keep in “go bag”
• Make a place for bills to live before being paid.
• Say it out loud, then write it down.
• MS memory problems or cognitive problems are often attention/concentration problems.
• When trying to remember a list of things that you need at the store, you can visualize the items.  Picture a room in your house, like your foyer.  Imagine a place where you would set items, like the foyer table.  Visualize the item you need on the table.  Visualize another item you need on that table, underneath, or in a weird location in that same room (maybe hanging somewhere in the room, tipped on it's side, etc..  Do this for all your items.
• A variation of this is called method of loci.  Imagine the item in a familiar place or route.  "Pick up" the items when you visualize yourself either walking through your house or driving your car.  You can memorize your shopping list, etc. this way.
• There's many other tips, using other senses, like auditory.  Songs, rhymes, hearing you say the words, lists, nams, etc.  Then there's organizational techniques, like mnemonic devices--  For example:  My Very Earnest Mother Just Served Us Nine Pickles.  This acrostic is the planets in order from the sun out:  Mercury, Venus, Earth, etc.
• Another one that I like a lot is to make an association to remember names of people.  My husband gave me this tip.  He's the world's best at remembering names of people.  I had a friend name Stuart and I couldn't remember his name to save my life.  When I saw him in the grocery store last, I was sweating bullets to get his name out to introduce him to my husband.  He took the pressure off of me and introduced himself.  After we left the grocery store, my husband told me that this was an easy association.  Stuart "Little" because Stuart is not little he was big.  I still remember his name to this day, and have no problems with that.    Associations are big in education these days.  Association and making connections is key to remembering  what you read.  Connect when you see something that you should remember.  That reminds me of . . .
• I've found that when the brain is working its working, when it goes on holiday and forgets to let me know, it doesn't matter what i know, um all the tricks are packed away in the bottom of the suitcase, probably still going around and around the luggage carousel waiting for my brain to claim it lol. 
• I would recommend checking out the ADD, Dyslexic or even CAPD (central auditory processing disorder) community or information sites, lots of usefull information to be found.
• The other problem is a total lack of recall of fairly important conversations. One would think that given the importance of the subject and length to which it was discussed, someone could trigger my memory, but NO. – So true!!

Thoughts Log

In a Thoughts Log, you state a problem and tell the automatic thoughts associated with it. Some of the automatic thoughts may be just fleeting thoughts that you do not really notice or possibly do not even believe, but you try to catch all of them. Oh, and you tell the feelings associated with the problem. Then you try to replace the automatic thoughts, which may be distorted, with more reasonable thoughts. Then you see how you feel.

Problem

Getting sicker

Feelings

Frustration, worry, depression, anxiety, loneliness

Automatic Thoughts

1. How much worse am I going to get?

No one knows how much worse I am going to get. Any person could get sick at any moment, or even die. We never know. If I were healthy, I still could get sick any time. Only god knows what will happen to us. Worrying about it does not help me feel better. And worrying does not prevent my disease from worsening. Worrying does not help me handle it better. Worrying stresses me out, which probably makes my MS worse.

2. What if I cannot work?

If I cannot work, I would feel sad. I would grieve. I have felt sad and grieved for my MS diagnosis, and I am still grieving it. I believe I would get over it. I am strong; I can handle a lot. Who knows, maybe I would like a life without the worries of work.

3. What if people at work find out and do not want me, even though I still can work?

I would fight it. I would tell them that I am able to work. I would explain the symptoms I have, and I would show how they have not affected me despite experiencing them for at least three years.

4. Everything is so hard.

Yes, everything is so hard. It is much harder than before. But I also have more freedom in my schedule and more support. Also, I have become more righteous. I am more spiritual. It makes me sad that I needed this disease to purify me, but it is having that effect. That is the point of being here on earth, so I could be happy for that. Or relieved. I do want to be righteous, but temporal concerns often distract me from that goal. I cannot help but keep it in my head now. I need blessings, and I want to be worthy to receive all the divine aid I can get.

5. I want to give up.

I could give up. But what if I had given up when I was first diagnosed? I would have missed some fun skiing, enjoying time with friends, building relationships, and fun at the beach. There are probably good things to come. I am not sure it will be worth it, but I am willing to give it a shot. 

6. I do not want to work anymore.

I did not want to work before I had MS. So that has not changed. :) Actually, I enjoy my job more now, because I am getting better at it all the time. I usually like it when I am there.

7. I want to go back to Heavenly Father.

It is okay to want that. I can read my patriarchal blessing and remind myself why I am here, what I need to do. I can ask Heavenly Father to let me come back as soon as possible. But dwelling on that all the time will not make it happen sooner. I do not want to take my own life. 

8. No one understands what I am going through, what I am feeling.

Other people with MS might understand. I can make friends with some of them. Maybe online or through email. The Savior understands, because he has felt everything. He atoned for my sickness. I can ask him to help me, to comfort me. Maybe that would help. I can give it a chance.

9. I want to ask for help, but I do not know what specifically to ask for.

I can ask an MS Navigator or MS Peer. My shrink suggested asking them to come and spend time with me, just be with me. But that usually makes me more tired. I do not know. I would love for people to make food for me, but I feel badly asking for that. Besides, I could use it all the time. People are so good about acute, urgent problems. Chronic problems are harder for people to help with, because they lose stamina. I lose stamina, too. It is hard to continue working on something for weeks, months, years. I can be patient with people and recognize that they do not know how to help me. Also, they get busy with their lives. It is hard for me to continue dealing with my MS, so it makes sense that it would be hard for other people to continue supporting me. If I want support, I probably need to ask for it.

10. I want a break.

I will have a break from work soon. Two weeks! Then I will have a whole week off, at the beach. Otherwise, I can try not to schedule things on the weekend, to use that as a true break.

11. I hate having MS.

I wonder if this feeling can change. I am thankful that my MS is making me a more righteous person, that I am praying and reading my scriptures much more consistently. I think with a more spiritual perspective. And I am thankful that my MS has made me more understanding of people who have disabilities. But I am less patient with normal people when they are not accommodating. I think the good outweighs the bad as far as personal growth. However, I do hate feeling sick on a day-to-day basis. Sick every day. It stinks, there is no doubt about that. No one wants to be sick. But I do not know what the future will bring; maybe I will get better. I believe that god can do anything; I believe in miracles. While I try not to hope too hard for one, I am open to the possibility. I may continue to hate my MS or have mixed feelings about it. That is okay, as long as I do not dwell on it too often. I am still in the grief process, and I can be patient with myself, allow myself time to work through all of my feelings. It is not wrong to have this feeling. It is normal to hate MS, because it makes my life so much harder.

12. What did I do wrong that I developed MS?

MS is probably not a punishment. It might be a blessing. Or it might be totally unrelated to Heavenly Father or to me. I do not understand everything about trials and challenges. Or I might have done something wrong. All I can do is try to be good now, which I am doing.

13. What did I do wrong that I got sicker again?

See above! It might not have anything to do with me or my actions. I might want to pray about this, to understand the purpose of my disease, if it has one.

14. What if it is all in my head and I am crazy?

It is not. I am more and more confident of this all the time. I have MRI and ophthalmology evidence, if I need objective proof. But I do not need that anymore. I know that I am not making it up.

15. I do not think I can do everything I need to do. I am too tired and sick. 

If I really need to, I can call in sick. But so far I have managed to handle everything. I will probably continue to manage everything. One thing that will help is to process my feelings in writing--it always helps, but I am often too lazy to do it. Or too tired! Doing this is so helpful. But if, eventually, I am truly too sick to work at all, I can stop working. I can research SSDI to prepare for that day. I have family who are willing to take me in. I will not be homeless.

16. I want to do my calling, but I cannot do it right now. That makes me feel guilty.

I am doing so much, working while I am so sick. I have limits. I can learn to recognize and accept my limits. Doing my calling may be over my limits. That is not my fault. I wish I were not sick, and I wish I could do my calling.

17. Maybe I can do my calling, and I am not trying hard enough.

Maybe, but then I think I am doing what I can. I am barely making it through work. Already things at home are not getting done. Maybe I can try to schedule one thing for my calling every month. Or one thing every two months.

18. If I push myself, I might be able to do my calling, but then I cannot rest.

This is true. So why push? I cannot risk making myself sicker.

19. I am afraid that doing my calling might make me sicker.

There you go. It very well might. I can try once in a while, as I mentioned before. Or I can ask to be released. My shrink thinks I should ask to be released. Maybe she is right. I am already doing a lot, with interpreting and daily support of a disabled friend. I might need to accept my limits and set a different standard for myself. It is okay not to do everything. 

20. What if this is all my fault, and I am doing it to myself?

How can that be true? I guess it might be true if I have awful sins and am being punished. But it is probably not my fault. I do not want to be sick. I am so desperate sometimes that I beg Heavenly Father to let me come home. I am suffering silently most of the time, obviously not looking for attention. No, this is not my fault, and I am not doing it to myself.

21. I am worried about money.

This is a very real concern, and it is okay to be worried about it sometimes. Many people with MS have financial problems. Probably most people with MS do. MS is an expensive disease, and when you cannot work, money is likely to be a problem. I can set a goal of setting aside a certain percentage of my earnings to savings and retirement. Things might be better next year, when I switch to a different employer. I believe the benefits will be better, including disability and retirement. For now, I can focus on paying off my debt and saving money. I can do a little each month, so that I do not go off the deep end and start spending a lot. Also, I can pray to Heavenly Father to help me not want to buy things. I know that this is a righteous desire, and he will help me if I ask.

22. It was stupid to buy a new laptop. I cannot afford it.

This is labeling. I am not stupid. This was not a financially sound decision, but I did need a laptop. My other one is dying, and I do not want to lose my information. The bottom line is that it is done now, and I cannot change the decision. I can learn from it. Maybe I would do the same thing again, maybe not. Maybe I would wait. But I can afford it. It just means not saving and paying off my debt as quickly. That is not the end of the world. I can pick myself up and try again. And if it were not for all the medical bills, I would have the money for several laptops.

23. I read that people with MS leave the work force because of fatigue and cognitive problems. I have both.

This is validating, because these are the worst things about working. Feeling fatigue while at work is tough. Feeling fatigue in the morning before work is also hard, because I do not want to go. And feeling fatigue in the evening is hard, because I feel like I just work and rest. So this statistic or fact was validating. But I do not know that I will leave the workforce because of that, or that I will leave the workforce early at all. No one knows what the future will bring. I might get better. Or I might get hit by a bus. I am fortunate that I started off on a high level cognitively. While I miss the abilities I had, no one else does. I am still doing better than my peers.

24. I read that people with MS continue to work an average of 8 years after their diagnosis. That is not long. Do I have 7 more years to work? I cannot retire in 7 years. I do not have enough savings.

I cannot magically make my debts disappear and my savings account grow. I can only try to save a portion of my earnings every month. And I can pray that things work out. And pay my tithing, of course. I have not had financial problems since I began paying tithing faithfully, so there is no reason to be afraid of that.

25. If I cannot work, I will lose my home.

Maybe. Maybe not. I do not know how much I would get from disability. Or who knows, maybe my dad would become nice one day and help me pay it. Anything is possible. And if I lose my home, I might not mind. It is hard to predict how I will feel in the future. 

26. If I lose my home, where will I live? I do not want to live with my parents or my aunt.

Again, it is hard to predict how I will feel in the future. And there are two non-family possibilities, people who might take me in. I believe that if I pray and have faith, things will work out. I might not mind living with one of my parents.

27. I do not want to leave my ward.

I wonder if I will feel this way in the future. And do I really expect to stay here forever? Or that my ward will not change?

28. I do not want to lose my freedom. Earning money gives me freedom.
It does. But it requires working, which is a big cause of stress on me. Have I not expressed that several times here? I might find that I enjoy not working. It would give me time to help other people. Maybe I would like to write a book or maintain a website.

29. I have too many responsibilities. I should not have taken on private clients.
There have been times that I was stressed out before or during sessions. But it gave me more money, which I needed. That was a blessing. It is almost done. Maybe the problem is not the number of clients but the scheduling and type of clients. Also the location. I can consider that next spring, as I prepare for the summer.

30. I should stay on top of insurance claims more.

That is a "should" statement. It would be nice if I stayed on top of insurance claims more. I can try to do that. But I have called about the most grievous errors. And I have paid my bills. I am so tired and overwhelmed; I am doing the best I can. This is just not my top priority.


31. I am frustrated that some claims have been processed incorrectly. They say I owe a lot of money that I do not have.
I have already asked that they re-process those claims. They might work out to be less. Or they might stand. I will find a way to pay them. It is okay to be frustrated about that.

32. Should I have been able to heal myself or to be healed through faith? What is wrong with me that I cannot?
I am not sure what to think about this. It is okay to be unsure. We do not know everything, we cannot see everything while we are here on earth. It will all be so clear later, but for now, we can only do our best with the abilities we have. I can pray for this. But I also need to surrender. If I place all my hopes on healing, I will be crushed and become depressed if I am not healed. I do not want to set myself up to fail. I can consider how to balance faith and surrender.

33. I am worried that I will become dependent on Ambien.

It might happen. I will continue to seek answers about why I have developed this sleep problem in the first place. If I become dependent on Ambien, I may have to go through withdrawal. I can do it. I have done many hard things.


34. I am worried that I will have a nasty withdrawal from Ambien.

It is possible. It is okay to be worried, because other people have experienced this. However, I do not know that this will happen to me. I do not seem to have an addictive personality. I am grateful for that. If I do experience a terrible withdrawal, I can call out sick that week, or as long as it takes. Or I might be able to do many things through it. I was able to work while on steroids, even though it was hard. I can be kind to myself and let myself take time off when I need it.

And now... feelings again
I feel so much calmer. It is amazing how getting all these thoughts and feelings out helps. I have some direction. I may do some work tomorrow on financial planning and medical planning, such as power of attorney. Or I may put it off another day. I can be kind to myself and give myself extra time to do things while I am sick. It is okay not to do everything perfectly.