So, I’m finally updating everyone on how home treatment and being home is. You probably got a bit of the gist from my post about trying to figure out what fun is or my post about my victory. There’s a lot to it.. and I have had so many thoughts and so many different kinds of days since I’ve been home. That’s something new. My days used to be each the same pretty much. I’m going to be real with you here and while most of this post is sunshine and butterflies, there are moments where I’ve been emotional the past 2 weeks.. so you’ve been warned.
My arrival home on Saturday (Day 12) got off to a wonderful start. I got to the airport late Saturday night after 4 hours on the plane. My Mom wheeled me through the airport and we met my Dad. He was so excited to see me and we hugged/kissed on cheeks 10 times in 3 minutes. We got on the elevator and went down to ground level… the doors opened, and there was Jake (my fiance if you’re just tuning in). I hadn’t been expecting him to be there. He’d said with work he couldn’t make it to the airport and to wake him up when I got to our house. “Did you really think I’d sleep instead of coming to get you?” he said. Then when we got to the car, my Dad had a cooler full of my favorite fruits to snack on for the ride home. I felt like the luckiest girl in the world and was really happy to be home with the people I love. I was also proud of myself because I had done my treatment prior to my flight so I didn’t miss a day. I know I don’t have to be perfect, but I do enjoy it when I am. LOL
It was so nice to see Jake again. We talked away Saturday night and all day Sunday except for the 2 hours I spent on my treatment. I was extremely fatigued. Not only was I dealing with POTS, I’d traveled the day prior, and had been glutened 4 days before that. Yuck. I was bummed and angry I was so fatigued now that Jake finally had the chance to see me in person. He wasn’t getting the “full effect”.
Monday, we were going about our happy day. Sleeping in my own bed was wonderful. Internally, I was bummed out I hadn’t been able to get all prettied up (pressure #1). Heck, I wasn’t even half-prettied up. I was in yoga pants, baggy shirts, and hadn’t washed my hair in recent memory. When I was in Dallas, Jake kept saying how beautiful I was and how something was different but he couldn’t quite figure out what (he says I’m beautiful all of the time, but he was talking about my done hair, real clothing, and make-up). I remembered how sick I would have been after all of that travel and being glutened if it had happened prior to The POTS Treatment Center, and found some consolation in that. However, sometimes when I take that route it feels like I’m telling an amputee to be happy she has her arm even though they just lost a leg. Anyways. We were talking about how we needed to go to the store. Jake offered to go alone so I could save some energy, but I insisted I wanted to go too (pressure #2). I was realizing how pampered I’d been in Dallas not having to do any dishes or clean up after my cooking. I knew all I needed to do was call my Mom and she’d be here cleaning and ordering me to bed, but I missed not even having to worry about how/when things would get clean (pressure #3). All of this was whirring around in my head without me vocalizing any of it. When I walked back into the living room where Jake was brainstorming our grocery store trip, he said, “We could get ingredients and you could make me Rice Krispie Treats.” I stood there (okay, I have to point out it is amazing I was standing there) and in my head was freaking out. I was thinking how I really couldn’t make them with my current energy levels, then I was thinking how easy they are to make and I shouldn’t even think of it as doing anything, then I was thinking maybe he could make them, then I thought “no he asked you to do it”, then I remembered I am a new woman who is in treatment and I had to tell him no. After some silence as all those thoughts occured I replied, “Sorry, but I just can’t. I’m too exhausted. I’m really sorry… I just —” He stopped me and said, “Babe, it’s fine! Just tell me what you can and can’t do. I asked because sometimes you like to make them to save us money. I am happy with the pre-made ones.” I said, “Okay.. I’m going to lay down.” Into our bedroom I went. I continued to think about the Rice Krispies and how Jake probably couldn’t even see an difference in me than before I went to Dallas (pressure #4). Of course, this was all just in my head. I don’t need to ask people what they’re actually thinking because I’m psychic.
What did I do when I laid on the bed? I cried of course! My thoughts were this was so hard, how was I going to do it? Why did I think it’d be so easy? Cry, cry, cry. Jake happened to walk in. He realized I was crying and looked confused and like he really wanted to comfort me. He crawled in bed, pulled me over to him and asked “What’s up?” That’s what he always asks when he can see something is wrong. I blubbered about how my hair wasn’t done and how adjusting to home treatment was more difficult than I expected. He told me he hadn’t expected me to get all dolled up. He had expected me to need rest. Oh. In that moment, Dr. Kyprianou popped into my head, “There is not outside emotional stress, only my response to it, which I can control.” Her voodoo worked! She was in my head. I am really great at not letting relationship stressors, financial stressors, work stressors, situational… all the stressors you can think of not get to me. You could tell me you smoke crack everyday before you breastfeed your baby, and my face wouldn’t show a reaction if I didn’t want it to. I attribute this super power to the crisis line I volunteered on and also just being confident I can handle most anything. However, my super powers do not encompass the ability to stay neutral in the face of POTS stressors, so her little mantra helped. I was fine. I kept hugging Jake throughout the day as I thought back to this because he’s so sweet and I felt bad he is engaged to a crazy lady who cries out of nowhere. Now that I’ve looked back and labeled the pressure I put on myself, I can see it wasn’t out of nowhere.
My confidence in my ability to successfully continue treatment at home came back very shortly after my little meltdown. Tuesday Jake was back at work. I worked on getting into a routine. Each day, I must do 2 20 minute temperature training sessions, 1 20 minute heart rate variability training session, 1 25 minute relaxation session, and exercise if I am able. I love this program because I can do it. Mayo Clinic basically wanted me to exercise as my treatment plan (in addition to medication and continuing to salt/fluid load). It is difficult to exercise when you can hardly stand or sit up without becoming ill. After Mayo Clinic, I constantly felt as though I was failing myself by my inability to get through exercise. With this treatment plan, I am supposed to exercise when I feel I am able and for as long as I am able. The doctor stated she wouldn’t ever expect me to exercise all dizzy and nauseous. Her treatment makes my dizziness and nausea go away. Also, her exercise goal starts at 5 minutes. Very doable and I haven’t felt as though I am failing even once.
Wednesday (day 16) Emma (stepdaughter) came for her 4 hour visit. What happened Wednesday is my Victory #1 and is coming up in a post. Emma and I did an activity together and I didn’t become more ill throughout the 2 hours of the activity. It was AMAZING. Thursday, I learned where my limits are. At some point last week, I found out someone who cares about me and has been a huge support throughout the last year is going to pay for me to have a maid for a few month. I was shocked at her generosity. She says she feels my most major stressor is the pressure I put on myself to keep up with the house, and she wanted to help lighten the load. I think it is going to help a lot. I feel so loved by how much people have and continue to help me.
Friday, I got a call from The POTS Treatment Center checking in on me. I explained how I had stopped advancing in how I was doing with treatment, but I had definitely maintained progress. I was assured this is completely normal and just the fact I had maintained my progress was amazing. She predicted I’d begin to continue progressing within a week or two. And here I was concerned I wasn’t still advancing. Later on, I picked up Emma from daycare. I was excited to pick her up. I haven’t been well enough to do that in awhile! Her and I went to the grocery store then met my friend and her son at a park. I became exhausted and symptomatic, however not as much as I normally would have. It’s bittersweet. These moments make me realize how far I have come, but also how fragile I still am and how easily all my symptoms can get bad if I’m not careful.
Jake, Emma, and I had a fun reunion weekend. Emma seemed happy I was home and was a “Jackie’s girl” most of the weekend. I continued to fit in all my treatments. I was so proud of myself for that! Emma was interested in my treatment and especially my heart rate variability program (Heart Math Emwave 2). It was sweet she had such an interest in my treatment. I’m going to post about that at a later time. Sunday, I had a victory. The day really wore me out and just talking for a prolonged period made me sick (again reminding me how fragile I am), but I recovered pretty quickly afterwards (again reminding me how awesome my ANS is becoming)
This brings us to Monday of this week, or day 22. I was hoping this day would be miraculous because it is my favorite number. However, not only had we had an energetic 4-year-old running around the house, I’d actually done quite a bit with her. My Mom came that day and cleaned and cooked for FIVE hours. She had the idea of me resting in bed while she cleaned so I wouldn’t get stressed out, feel guilty watching her work, or use up energy talking. I came out when it was time to eat and, unlike usual, had energy for it. Good thinking Mom. Tuesday, my sister came to visit. Just for fun, I took my hand temperature while we were catching up. It came in at 90.1 without any special breathing. She’s always been my relaxing presence. Despite the fatigue, i was in these two days I became 100% sure I was going to progress even more at home than I did in Dallas. This is where everyone who loves me is and it is where my home with Jake and Emma is.
Wednesday (Day 24) the veil of fatigue began to lift. I began to see signs of progression again. I scored 100% in the high zone doing my heart rate training. Granted I was lying flat and was on the lowest level… it was still something to celebrate because it was the best I’d ever done, even lying down and on low. Jake had the day off Wednesday, so I attribute my success to that. Jake had a cold Wednesday, so I offered to run to the store for him. My hand temp (I bought a portable hand thermometer) was extremely low in the store even though I still use the motor cart. It shows my body just hates the grocery store. It has had too many bad experiences in them. Later in the evening, Jake asked me to get or do something for him. I was really proud of myself because I told him I felt awful I couldn’t take care of him when he’s sick, but I was feeling really sick too and couldn’t do it. He didn’t mind and he always tells me to tell him these things. I just am for once doing it!
Thursday, Jake and I drove 20 minutes to go out to eat. He was impressed with my ability to sit up all the way through a restaurant meal without losing my color, my legs turning purple, needing to go lay in the car, needing to rush the check…. none of that happened for the first time in a really long time. We quickly ran into a grocery store to see if they had a good organic selection (they didn’t) and headed home. I began to become symptomatic on the way home, but again, this is an improvement.
Friday (yesterday), I did my heart rate training on level 2 (medium). There are 4 levels and I had been doing level 1. All week I’d needed to do the training lying back in the recliner or lying in bed. Yesterday I did it sitting up with my feet propped which is challenging for me. I got 98% high ans 2% medium! I was ecstatic. That’s better than I scored on the low level while lying down earlier in the week. Yay progress. I also got my temperature to 96 or above within 20 minutes during my morning and evening sessions.
Then… I went to go to bed. I was doing my same old routine of reading my book and suddenly felt really emotional. Before I knew it I was crying. I have felt sudden surges of sadness throughout the last week. It’s not a depressed type feeling. I think it is a feeling of loss, maybe even post traumatic stress. Although I’ve had POTS for 5.5 years, I pushed through 4 of those years and did most of whatever I wanted. However over the last 18 months, I’ve had a rough time and haven’t been able to do the most basic things. At times I thought the ability to eat was an amazing accomplishment. I’ve had to give up my job, living in the city I loved, taking showers, going to movie theaters, taking care of my house, I was hospitalized for a week, lost a lot of connections, there was a month where I slept 20 hours a day… I just really missed out on a lot. I have always celebrated what I do have. I have a wonderful fiance, I have a home, I have a supportive family, I have all you guys reading this supporting me, I have access to good medical care… However, like my reference to the amputee earlier, there is no denying there is a lot I have lost and missed out on and it is understandable for me to mourn that from time to time. It’s like I’ve had my head down pushing through the storm, coping with each new thing thrown in my path for all of this time, and suddenly I have breaks where I can look up, around, and behind me. I suddenly realize all I have been pushing through and the losses that came with it. I suddenly realize why people tell me, “I could never imagine going through what you have.” or “You’re so brave.” They say these things because what I have been through has been awful! I’m not going to say I never realized my illness has been a raw deal. I’ve always known this wasn’t the best hand to get dealt. However, I think I didn’t realize how devastating it was on most areas of my life… my ability to enjoy the simplest things. I didn’t realize it was sort of sad, at 24, how miraculous I used to find just getting through a meal in a restaurant without having to leave, even if it meant I’d be sick for day. Experiencing going to dinner and not feeling sick in the restaurant for the first time in 2 years, and considering myself lucky for symptoms not worsening or appearing until the ride home made me realize how sad my illness was prior to treatment. I’m sure someday I’ll look back at this experience I’m all excited about and think “how sad”. My positive attitude in regard to past restaurant experiences… that attitude isn’t going anywhere, but it is a sad thing to have so few things in your life you can do free of symptoms that just sitting up through a meal in a restaurant is something to be appreciated. I’m all for appreciating every little thing we are given, so I will keep celebrating little (and big) victories. It’s just sad to see what some of my little victories in the past 18 months have been and what that means about my life in general over the last 18 months.
My Mom and I were talking about people’s ability to adjust to sleeping during the day instead of night or sleeping very little. She said she can do with little sleep, but not sleeping during the day instead of the night and asked about me. I said, “Well.. currently both make me feel bad, but I don’t know how my body does with either one because I’ve never been healthy in my adult life.” She commented, “That’s a sad little statement.” I agree it is, but I know in my future, when I healthy with my healthy newborn baby, I will be able to report back to her on how I do with little sleep.
Anyways, back to my little emotional “moments”. Maybe this is some sort of post traumatic stress. It would make sense. I don’t know, but what I do know is it feels like a natural part of the healing process to me. Throughout my illness I’ve always felt it was important (thanks to encouragement from my Mom) from time to time to allow myself to mourn the loss of my life as I knew it. However, it was a cycle of mourning because the losses were never over. Now that they’re finally over and it seems POTS has stopped taking things away, I think mourning will be part of moving on with my life rather than a part of coping with life. Does all this make any sense? I almost feel like perhaps this should have been its own post. I almost didn’t even share this part, but I figure someone else will go through the same thing. Hopefully they’ll find this and feel they are not alone.
Then there was today, day 27. I woke up and found out poor Jake has the stomach flu and had to come home from work. Poor guy — a cold and stomach flu in one week. I have gained a huge amount of faith in my andrographis supplement for supporting the immune system and fending off bad bacteria and viruses because I haven’t got either from him. ** knock on wood ** I also have used nasal rinses several times a day. I ran to the store for him because I wanted him to have food that would be easy on his stomach. Prior to the store, I did my temperature training, relaxation session, heart rate training, and **drum roll** EXERCISE! It was for 6 minutes on the bike, 4.5 of which weren’t terrible and none of which I felt lightheaded. Oh yeah, it was my second day in a row of exercising. Yay! Ever since I got back from the store, my heart rate has been insane. That is one symptom not showing any improvement with this program as of yet. I’m not worried about it because I know it’ll come in time. It took me 5.5 years to get this way. In no way did I expect it to see improvement in all areas in 27 days. I have to admit, I was feeling frustrated about the tachycardia flaring up more than usual and my inability to take care of Jake outside of running to the store for him. That’s why I came and wrote this blog post. I’m feeling much better now.
Well, now you and I are all up to date. Life is better and I am continuing to take baby steps toward recovery. I still have a fragile Autonomic Nervous System and am easily thrown off track, but I’m also a stubborn woman who gets right back on track with the help of her new program. Although I continue to rest most of each day and require advance planning to visit or do an activity, I am actually able to enjoy visits and activities because my symptoms typically don’t get worse during them. That’s the thing, my symptoms aren’t gone, but so long as I stick to my program and don’t overdo it, they also aren’t quite as touchy as they used to be. To me, this is mind blowing and it is only going to keep getting better. I love calling my Mom and Dad with happy news rather than calling them to meet me at the ER.