To all of the Multiple Sclerosis Motivates blog:
I have moved my blog to the website for the book I have just published. Please continue to follow me there. Now that I am finished with the book, I will begin blogging regularly again. 🙂
Mentally Disabled?
It was at an informational luncheon for MS that I met the first person to tell me she didn’t work anymore because of the reduced mental capacity she had due to the disease. This was in the beginning of my MS Journey; before I had many symptoms. I remember being in wonder at how someone could have such mental impairment that they could no longer work, yet when I talk to her she seems bright, competent and normal.
I used to wonder if I could ever be disabled that way and what it would be like. Now I am disabled that way and I often wonder (on my good days) if I truly do need to be on disability. It turns out I had the perfect assessment test handed to me in the first week of June.
My 3 children got off school and home for the summer. In the first week of this new schedule, I volunteered at Vacation Bible School as a group leader until noon every day. The kids were in my group. And the temperature was over 100 degrees outside every day.
Under these conditions, I have been able to prove to myself, once again, that I am disabled. It’s not that this doesn’t happen to me very often, but I end up questioning it again every time I have a good spell of a week or more.
The mental damage part of MS is more difficult for me to accept and not be surprised every time it happens than the physical part. When my disability was mostly physical, it was obvious to me daily that I could not work. Now that it is more mental, when I live my life daily in the ‘cognitively-slow friendly’ environment I have set up for myself at home – I sometimes question it.
But when I disrupt my calm home environment and add in all the constant distractions of life, I am immediately reminded. This is a reassurance to me that I am doing everything I can daily.
Let it be.
Something amazing happened to at the beginning of this week and I feel like a transformed person. I experienced a moment of tremendous relief. I have only experienced relief in this sort of magnitude once before in my life. That was when the excruciating MS pain I had been feeling for over a year finally disappeared. But this was not a physical relief, but an emotional and mental solace. For the first time in my life, I finally figured out how to truly be happy. I know, it’s shocking that it took me 40 years to do this, but it did.
During all the difficult times of my life (the things MS has gifted me with being some of the most difficult), I have sought to learn all the truths in life that you need know and accept to be happy. I’ve blogged about them all. I’ve coached others on how to find happiness.
However, I was using these truths separately rather than all together. It wasn’t until this past Sunday when the pastor at church explained it in a way that it finally clicked for me.
I had an epiphany when it finally sunk in the next day. It was if someone had lifted an invisibility cloak (excuse the Harry Potter reference) off the unhealthy behaviors I had been using my entire life. I had known my actions were not producing the happiness I wanted, but I was completely blind to what wasn’t working . . . until now. I was almost embarrassed, but I couldn’t see what needed to change until I completely relinquished any idea that I had control over anything in life except my own emotions.
I have always known these nine secrets of happiness:
- You cannot control everything.
- Every emotion you have is a choice.
- Reacting to something never helps.
- You cannotchange anyone
- You cannot knowyour future.
- You must choose to take care of yourself first.
- Every person is a whole and competent person, and they are all doing their best.
- Live in the moment.
- Meditate every day.
I learned all these years ago, but now I can finally apply them and use them correctly with one last step: fully understanding that the only thing you can control is your happiness and attitude about life and giving up on trying to control anything else.
I was going to explain what I was doing wrong, but then I realized that was me and it would not help you. Only you can figure out if you are doing any of them incompletely to make them all work together. (I have done previous blogs on everything I listed above separately over the years and if you want to hear more about my experience with them send me a message so I can tell you more about it.)
However, I decided today I want to impart a new secret to you. I started practicing this one a while ago, but just like all the other ones, because I wasn’t using them together in every situation, happiness would easily and quickly slip away.
Here is the 10th secret: Always say yes. When someone asks you to do something, it is an opportunity. An opportunity to have fun, to help someone who needs it, or whatever else life has in store for you. I have learned to only say no if I don’t have the resources (money, energy, or time) in the moment it is offered to me.
Goodbye for now. Someone is calling, and I’m going to say yes. I hope you do the same when you get an offered an opportunity.
Uneven Playing Field
I went to the gym today to do my normal Tuesday/Thursday HIT (high intensity interval) class. I ended up leaving early, after only 20 minutes instead of the full 60 minutes for the class. I told the instructor, “I just can’t do it today.” I then I started to cry. She asked if I got hurt, and I said, “No. I’m just over-tired.”
I cried because I hat to give up. I was embarrassed. But I have no reason to be embarrassed. I ran on Monday, did the Tuesday HIT class, and ran on Wednesday. Of course I’m tired on Thursday!
The MS Specialist in Seattle gave me the best explanation of why I get so tired now. People with MS use four times times the brain matter to figure out simple problems compared to someone without MS. They showed this in a study they did years ago. Four times! And this was shown just to figure out simple math problems, like 2+2. Imagine all the things coming at someone with MS on a daily basis, watching the road while we drive, getting the kids fed and off to school, and then working out on top of that. All of this information has to be interpreted by our brains that have had to reroute several times already. This is exhausting.
If you think about it, I should do ¼ of the class, and I did 1/3. I usually do the whole thing. I should be overjoyed I had the ambition to try to work out today, not feel ashamed that I did not stay as long as the rest of the women there. I am not playing on an even playing field. I have every right to leave early and hold my head high.
My new goal is to hold my head high no matter what. When I have to leave, I have to leave. Who cares if the other people there don’t know why. They can think whatever they want, but I know I’m doing great! I am thankful that I can do it at all. I will try to never take that for granted again.
Chapters
I have always felt that my life has happened in distinct chapters. From gutting fish in Alaska, to backpacking through Europe – these chapters have molded me and made me who I am. Some are longer than others, and I certainly enjoy some a lot more than others, but all have imprinted on me.
The last chapter in my life, Recovery, has not been great. The one before that, Transplant, even worse. And the one before that, MS Takeover, was especially bad. I didn’t even know if I would survive it. But now I am finally feeling like I am in a good chapter again. I know who I am and what I am doing again.
I am truly enjoying being a stay at home mom. I have gotten over feeling worthless, and wishing I could do more. I have started enjoying taking time fore just myself. I have started enjoy planning and executing healthy meals. I have activities lined up for my kids most evenings after school. And I am working out again on a regular basis.
The self doubt that lingered for so long since MS Takeover is gone. I enjoy being me again! Thank God for HSCT. I hope this chapter goes on for a long time. And I am intending to start blogging more regularly now.
First World Problems
A while ago, my husband used the phrase, “first world problems.” I think it is related to a phrase often used by our neighbors, “problems of the rich.” They both mean the same thing. How can we feel bad that we don’t have enough money for the perfect (insert your want here), when we have so much to begin with? How can my kids reject food because they don’t like it, when there are kids around the world that don’t get food to at all?
This is the same sort of theory I struggle with about my disabilities now that I have undergone HSCT for MS. I feel bad because I still have symptoms, and most of all severe fatigue at times, when it is so much better than it used to be. I can only run two miles, but two years ago I couldn’t even walk across a room. I don’t feel nearly as accomplished on a daily basis as I used to because I no longer work, but I take care of my 3 kids every day.
It makes me wonder what I am waiting for. What is going to make me feel all better? I need it to be enough that I am alive. I need it to be enough that almost all of the pain is gone. I need it to be enough to exercise at all, no matter how minimal. And I need it to be enough just to be caring for my family and myself without help.
The main problem is that I used to be a huge overachiever, and I probably thought I was contributing more than I actually was. I was busy all the time. Now I am not, and I need to figure out how to be content with the new me. I am very different than I used to be in a lot of ways, and the thing that bothers me the most is that the damage to my brain from MS may never go away.
For this next stage in my life, I am now going to focus on just living in the moment, and being happy with what is happening right now. I need to be happy with the little things and not focus on the big things that I do not have control over. As Buddha said, “Health is the greatest gift, contentment the greatest wealth.”
Was it Worth it?
A question that many people ask me after I’ve had the HSCT is ‘was it worth it?’ I always tell them that I cannot decide that for them. It depends on your personal situation, and when I did it I had no other choice. I was feeling like I was not living anyway, so if I died it didn’t matter. At least the pain would stop.
I was in such dire straits before the transplant that I could not even take care of my children. I could not leave the bed at times. I could not cross a room without resting. I could not take care of myself. I thought, and my father told me this as well, that if the disease did not kill me, I would eventually have to take my own life given the amount of horrific neuropathic pain I was constantly.
So for me, it was not a choice. It was a necessity to try to go on being a mother. I owed it to my children to try it. Even with all of this, there were many times in the last two years that I asked myself the same question. ‘Was it worth it?’
There were weeks on end where I was very ill and it seemed I just could not or would not ever get better. There were days that I would lie in bed all day because I was too tired to try to do anything else. These days would come very close together, so I felt like I wasn’t doing anything productive in life. So I asked myself, ‘was it worth it?’
I am now just 11 days from two years out. I would like to say that I am now sure that it WAS worth it! I have finally gotten over the worst of the fatigue and the immune system problems. I am running again, and feeling pretty good most days. I am cooking for my family again. And I am close to finishing my book about the whole process that I believe with help others that are considering it or are about to go through it.
This does not mean that I am ready to go back to work, I will never be able to work again. I will not run another marathon, or even a 10K. But I have figured out how to live my life. This is an amazing thing for me, and my family! I am so grateful that everyone has supported me so much through these last few years of misery so that I could get to this point again. I am happy to be here!
Feeling Good
I am feeling good. I have gone out to exercise three days in a row now. I am going to keep it up. I do not get so tired that I feel like I’m going to die afterward, but I get tired in the evening, and that is OK. I do not feel guilty. I prep dinners in the morning when I still have energy, and I feel good about what I accomplish during the day.
Two years out of transplant, and I’m finally starting to feel better for more than a day or two. I’ve felt good for a week or more now, and I feel like it might be becoming the normal now! I don’t want to jinx anything; I know that in the past I write about how well I’m doing and then get sick the next day. But I still wanted to document this.
I am still doing the run/walk routine, but I’m getting into longer jog periods with shorter walking breaks. I am in up to running in 5 min. intervals now, and I can feel normal doing it. Before, I felt like I had to push myself forward with every step. Now it is more of a natural run. This is a huge step! I am also giving myself the ‘me-time’ I so desperately need. I am actively loving myself when I do this routine every morning.
I am also feeling really good about the book! I have pretty gotten through when I left Seattle and moved in next to my parents for recovery. It is such a relief to be so close to the end!
This is my next checklist:
1- Go through the medical details from my release folder to get the medical details specific and correct.
2 – Write and insert the story of Josh giving my replacement wedding ring to me. It was in the hospital at some point, but I’m not sure exactly when and for some reason it was omitted in the previous writings.
3 – Figure out how to end book, and write the final chapter.
Roller Coaster
I go through a lot of ups and downs these days. The phrase about transplant recovery being a roller coaster is no joke! I also struggle with depression, due to the MS, and exacerbated by my new life of disability, recovery, and minimal energy. Instead of complaining about how crappy I’ve been feeling lately, I am going to write about how to get out of a real depression funk.
The first step is something I cannot really help you with. If you’ve been there, you know what I mean. The first thing you need to have is the hope of feeling better. You have to have a plan in place to know that you are going to start feeling better soon. For me, it is the hope that we’ve finally figured out how to get my meds and serotonin levels more stabilized and someone is finally listening to me.
Once you’ve got that piece figured out and you can feel a little better, it’s time to start thinking about how to enjoy life again! I personally need a lot of social interaction in my life in order to stay happy. Not having a job that make it necessary to interact with people on a daily basis makes this part difficult. And kids do not count! This means I have to make plans for lunch dates, make more phone calls, and make it out of the house every day.
The other very important piece is to love yourself every day. I am using the term ‘love’ as a verb. This means I have to do something intentional to take care of me every day. Today, I went for a walk/jog, and I’m going to lunch with a friend. I am also going to style my hair before I go out. These are things I enjoy. That is very important. You have to take care of yourself! This is something I often forget to do, but you can’t take care of others if you do not take care of yourself first.
I also know that enjoy life so much more when I exercise. It is hard to do it without energy, and impossible to do when I’m depressed, but I think I can finally get back to it now. This makes me feel better. Whatever you do for just you, it a necessary thing nearly every day.
For fun, and to prove to you all I have not given up on my book, I am going to give you all another sneak peak at what is to come! I am really feeling like I need to get this book done and published soon. This last chapter I’ve been working is going through the transplant when I was staying at the hospital. I decided that it is intriguing if I write this part from everyone’s own voice; going back and forth from caretaker, to caretaker, to me and back. I had everyone take detailed notes of this part because I knew I was going to write a book, and I knew I would not remember it all. This is not to say this won’t change before publishing, but this is what I’m doing for now.
This particular part is using my mothers voice when I got my stem cells back:
At 1:50 Rachel spoke to me, but I couldn’t understand her. When I went closer and asked her to repeat herself, I realized that her speech was slurred and what I could decipher didn’t make sense. That led to a flurry of phone calls, an army of staff showing up, the bed being wheeled out to the elevator, emerging on the imaging floor and into a cat scan room. As she was wheeled away from me, she could no longer respond to me in any way. She was completely unconscious.
Scared and alone, I debated about what to do and realized there was nothing for me to do but wait for information. Both Josh and Mike (the main support team) were in cars with kids, so calling them without any useful information would only lead to potential panic. Luckily a nurse came out and explained the CT Scan had ruled out a brain bleed and that was very good news. Good news or not Rachel was still out of it and there was, as yet, no answer as to what had happened. Back up to the 8th floor and down again to imaging for another look at her brain. By this time they were asking me if Rachel had had seizures in the past, to which I answered “no.”
Balance
Balance is an important term for people with MS for many reasons. There is the physical balance that you lose which makes is hard to run, walk, and do yoga. For instance, I stopped running outside a while ago, when it got to the point that I fell every time. But luckily, because of the HSTC, I have regained enough that I can run outside again. I cannot run far, but I can do a combination of running and walking to get exercise and make me feel good. I can no longer do advanced Yoga successfully either. It gets too depressing when I just fall on most of the moves. To compensate for that, I have to do a more beginner friendly version. I do have faith that I will still improve in both of these area’s as I heal more from the transplant and my brain cells grow back.
Then there is the life balance that makes it so important to choose what you spend time doing because of the much reduced energy that you have. I can not work and still take care of my three kids. I am on permanent disability now. Making this choice enables me to make dinner for them and do their laundry while they are at school. This is not really a choice, however. I could probably work at a job that did not require any physical energy or mental alertness if I only did it part time and then spent the rest of my time in bed. But I could not make enough money to hire a housekeeper, and the nanny that would be necessary to do the rest of the family duties.
Yesterday, my five year of said to me as I was walking her home from school, “I know what you will do tonight.” I said, “What?” She said, “Lie in bed. Because that’s what you do every day.” This was a real eye opener. I do not do that everyday. In reality it is probably 1-2 days a week that I do that, and only when my husband is home. But if I tried to do more during the hours they were at school, it probably would be every day.
The most important thing to balance, for me, is my brain chemistry. Part of the reason I have not blogged in so long is that I have been depressed. MS causes depression. I no longer am able to produce the right amount of serotonin in my brain to keep me feeling OK. MS also causes anxiety, for a multitude of reasons. I did not realize my antidepressants had stopped working until I got suicidal. The good thing about knowing what is going on is that I would never act on these feelings, but it still makes it impossible to do much when you can’t stop thinking about how horrible, miserable, and unworthy you or your existence is. When I finally figured out what was really going on I got an appointment with a psychiatrist who informed me that after being on the same medicine for a long period of time, your body can stop reacting to it. So he switched me to a different drug, that works in basically the same way.
This helped a lot. Now, I want to clean the house. I want to cook dinner. I want to get out of bed. And most importantly I want to write again. I really need to finish my book. People are starting to hear more and more about HSCT for MS, and I want them to be able to read about my personal experience so they know what it is like. I think we are getting closer and closer to this being offered for those with MS as a treatment, rather than only allowed as a research project, and I want my book to be out when we get there.
As a side note, if anyone knows anything about getting a publisher for my book, or anything else I need to get the book finished and published and out there, please contact me!
Multiple Sclerosis Motivates 