Reentry and Recovery

I have been home a little over two weeks now. The time has flown by and the time that I spent in Mexico feels like a dream, an otherworldly experience that I was immersed in, a fairyland of sorts. I know it was very real and it did happen, it just feels like a strange blip out of normal life. Now that I am back home things once again feel familiar and routine for the most part.

Nils was able to be home full time for the first week.  He went back to work half-time for the second week and as of Monday of this week he is back to work full-time. It was incredible to have him here as we figured out this new lay of the land.

These two weeks have been about reintegration, figuring out how to set up our day-to-day life and our home to keep me protected from infection, and just getting my bearings in general to figure out what’s working, what’s not working, and how to settle in to the long-game of recovery. It’s like stepping out of the vehicle after a car crash in checking that you still have your arms, legs, hands, feet and that you’re not bleeding. What is the damage assessment, how bad is it?

My assessment is that I’m doing well. Unexpectedly, my energy is better than it was before I went for treatment. The lifting of my MS fatigue that I experienced during treatment seems to have held. All my reading says that it will take a year to get back to my pre-HSCT baseline, that it will be a roller coaster of good days and bad days. At this point I feel pretty close to my baseline already. My muscles feel weak, and my endurance/stamina is perhaps a little less, but the increase in energy gives me the ability to do the physical work I need to do to get stronger and I already feel like that is happening. I need to be prepared for the roller coaster and I also need to be prepared how slow this process of rebuilding strength is likely to be. Impatience is my kryptonite.

My days consist of a rotating physical therapy routine which includes the MS gym, physical therapy exercises from my PT, hand/arm exercises from my OT, handwriting practice, and mindfulness meditation. I’m also keeping track of MS symptoms in a more concerted way than I have in the past. My goal for this blog, as I’m thinking about it right now, is to post every two weeks. I will track my PT/mobility progress and symptoms monthly to help me determine how things are changing, or not. The other post I plan to do monthly is a check in on mindset, motivation, life in HSCT recovery, identity, finding meaning and purpose in a differently-abled body – musings, for lack of a better description.

This post is going to be the progress and symptoms report.

Mobility/Walking/Legs

As of today, I have been consistently doing the mobility plan I laid out for myself six days a week. This consists predominantly of seated and supine exercises aimed at building core strength and hip mobility. I have taken a video to document my walking, my hip flexor function and spasticity levels in my right leg, and how my right ankle is functioning (or not).  As I mentioned before, I feel pretty close to my baseline before HSCT and the post I created pretreatment reflects this.

Arm/Hand/Handwriting

I decided to start using the Saebo Reach device prescribed to me by my OT a couple of years ago. This is a device originally designed for stroke victims to regain arm and hand strength and function. Ideally they want you to use it six days a week for an hour, but I’m committing to about 30 minutes three times a week right now. I had done it in the past for about six months and it did help to increase my strength so I’m willing to give it another shot.

I’ve included a video showing how my hand and arm move currently.

I’m also spending some time every day practicing my handwriting. I have picked a random structure for doing this that includes writing the alphabet in upper and lowercase, practicing my signature, doing some shapes that exercise my hand, and practicing the sentence I remember learning in grade school, “the quick brown fox jumps over the lazy dog.” My handwriting was never that legible to begin with so not hoping for a miracle there, my goals are to have it feel like I can write for longer without my hand fatiguing and to be able to comfortably fill out cards, forms, checks, etc.

Fatigue/Energy

As I mentioned in my initial post about my symptoms pretreatment, fatigue has been one of the most debilitating parts of having MS. On any given day fatigue would be this background soundtrack, sometimes very quiet and sometimes exceedingly loud, but always there. During treatment, when my fatigue seemed to disappear, I was able to get clear on the distinction between MS fatigue and being tired. I still feel tired when I don’t get enough sleep or when I’ve pushed my body, but it is a very different feeling than MS fatigue. This has been incredibly hard to explain to people in my life who haven’t experienced it. There are a number of us in my cohort who have had this experience and we all agree that this distinction is important. When MS fatigue is present it is like a weight in your chest, in your head, in your arms, and your legs that saps motivation and the ability to move anything forward. Now my energy is consistent, even if my body is tired or weak, I still have the motivation to keep moving and building.

Bladder

This is one area that is still pretty much a bummer. Since having the hemorrhagic cystitis during treatment my bladder continues to be cranky. If you remember, this is the area where we quickly get into TMI. Please feel free to ignore this section. I am tracking how frequently I have to urinate and it appears to be anywhere from every 30 minutes to every 1.5 hours, average of about every 45 minutes. And it’s typically a pretty full bladder and I don’t have a UTI. I am currently getting appointment set up with a urologist and I hope this improves!

Bowel Function

On the flipside, this is an area that seems to be pretty darn normal of late. I was so nervous about the possibility of getting severely constipated during treatment that I used every tool in my dietitian handbook to make sure I erred on the other side. Since coming back I continued to do daily Metamucil and 2+ liters of water per day and things seem to be nicely unremarkable.

Hair Growth

Shortly after I got home Nils did a really thorough cleanup of my head, so everything is now even all over. I’m excited to document how it grows back! Will it be curly? Will it be straight? Will it be more or less gray? Can’t wait to find out!

On a final note, getting outdoors, spending time at the ocean, and just immersing myself in the beauty of where I live has felt so essential since I returned home. It is still winter but we’re trying to take every opportunity we can to spend time outside. We are just waiting for the day when we can get out on our trikes!