Back On the (Weak) Juice

Today my neurologist put me on steroids again. (Head in hands...)

I am nervous, although I am not sure exactly what I am worried about. The main problems I have had from steroids were not sleeping (three hours and awake for the rest of the night) and joint pain. And blurry vision, but it was still functional. Joint pain was when I was on IVsolu-medrol, not prednisone, and this time I am taking prednisone.

This time I am on a much lower dose, though: 100 mg for three days then a five-day taper.

In addition to the prednisone, my neurologist prescribed a different sleeping medicine, Sonata. I am not sure it will be a good fit for me, because I read online that it only works for four hours. That is how long I got from Ambien, which works at least seven hours for most people. I will give it a few days. It looked to me like extended-release Ambien might be a better fit for me. I will ask about it if Sonata does not work.

Wow, I am feeling really anxious. I guess I am still not comfortable with steroids. I feel really sick while I am on them. However, they have helped my symptoms in the past, and I am struggling so much with my MS right now. I am in so much pain. It is worth a try.

I am worried that my sleep problems will get worse, but I am reminding myself that I worked through it in the past. I think I called out sick from work once or twice the last time I was on steroids. I was dizzy, not safe to drive, and absolutely miserable... but I survived, and then I felt better than before taking the steroids.

MS is not enjoyable.

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.

Back With a Bang

I am practicing cognitive-behavioral therapy with my psychologist, and it helps me handle my emotions. MS involves such ups and downs, it can be overwhelming. Right now my MS is on its way down.

I am having trouble sleeping. That began a month ago, at the same time as I had an increase in pain. Causal relationship? I am not sure. I suspect there is something underlying both problems, not that pain is causing the sleep problem (pain increased a day or two before the sleep problem showed up).

I have had incredible, mind-bending pain in the past and not had trouble sleeping. That makes me think that the pain is not the root of the sleep problem, but I cannot be sure.

My neurologist advised me to increase my tramadol, and he prescribed Ambien. I did not want to take it! I tried diphenhydramine (Bendryl, Sominex) first, at 50 mg, and it did not help a bit.

My sleep problem is that it takes me much longer to fall asleep than usual--a couple of hours instead of a few minutes. If I focus really hard, I can fall asleep after about an hour. The problem seems to be something like attention. My attention wanders, I think about things (not worrying, just thinking), and I forget that I want to sleep. I am exhausted, but I forget to sleep. If I can remember long enough and keep thoughts out of my mind, I can fall asleep.

If that were the only problem, I would be fine. I go to bed early enough that I have plenty of time to sleep even if it takes longer to fall asleep.

Unfortunately, it gets worse. I wake up every hour.

When I took 5 mg of Ambien, I experienced no change in my sleep. I tried it for two days.

When I took 10 mg of Ambien, I slept 4.5 solid hours, then I was up every 30-60 minutes.

Upon waking, I can go right back to sleep within five minutes. So I get a total of at least seven hours of sleep, but it is not restful sleep. I have done a lot of research on sleep since developing this problem, and I learned that I am probably not getting past level 1 or 2 of sleep. I need to get to level 5, which is REM sleep.

I feel like I am getting some rest, but not enough. It is not as bad as when I have been on steroids; I sleep about four hours and then stay awake the rest of the night. Then I am a zombie. I have been a zombie sometimes in the last month, but mostly I am just fatigued.

Sometimes the fatigue is so bad I feel nauseated or dizzy, or I might get a headache.

After 10 days of the problem, after making sure my sleep hygiene was excellent, after realizing I had absolutely no control over the problem, I developed anxiety. And depression.

Many times I have wanted to die. Too much pain, everything too hard. I am still working, and it is surreal to feel the way I do and still get my job done.

Yesterday I developed new problems: weakness in my right arm and pain and tightness in my right hip. Sometimes my right hip is extremely painful and feels like it has a deep bruise. It is okay when I am resting, but it hurts when I move it. I know that I did not injure myself. As I stretch and use it, I get better, but it tightens up again if I rest. Catch-22.

I will do a post of a "Thoughts Log," which is one thing I learned to do for my psychology homework. I want to get out every possible anxious thought. I want to sleep! I will do anything that might possibly help me sleep.