Transitioning home felt good. My mom was there to help and Bodhi was delighted to see me! Saturday morning we woke up and headed to Haymarket to get my fruits and veggies for the week and then went to Target to pick up a few necessities. It was my first day out of the hospital and I walked about 1.75 miles! When we got home my legs were throbbing and aching in pain and I found it difficult to stand up for the rest of the day. My nurse came to teach me how to give myself B12 injections. I wasn't feeling great and looking at the needle was making me queasy, it didn't help that the needles ordered were an inch too long for my lean muscles. I started crying because I didn't have the guts to do it myself. I wanted so badly to be independent and do it on my own. I also knew that if I could take the pain when a nurse did it, then I could also do it myself but my mind just wouldn't cooperate. I felt extremely frustrated with everything. I figured I was just overtired from the day and overwhelmed with how much my life had changed since the last time I was sitting at home.
The next day we kept it very low key. We went out for lunch and about an hour later I developed a rash on my right hand. It looked like pinpricks of blood underneath my skin and from what I can tell is just from having a low platelet count. I started crying again in fear of ending up back in the hospital. I felt so helpless and that my body was just out of my control. My second day in a row of tears was not feeling so good to me. I couldn't understand why I could be so optimistic in the hospital and now that I was home I just felt frustrated. I was told only to learn one new skill a day and thought since I had learned to carry something while walking yesterday that I would attempt going up and down hills today. Around 4 we went across the street to the Arboretum and walked up Weld Hill and Peter's Hill. About half way home I felt like I may have gone too far but was able to keep walking without any rest, we had gone over 2.5 miles! My mom headed back to Maine and I took a shower and went to bed around 6:30.
Monday was my first day truly on my own except for my nurse coming by to visit. I was feeling very frustrated with the fatigue and was in tears again. I just didn't feel like myself. I knew I should be grateful and appreciative of the fact that I could walk two weeks quicker than expected. I felt like my soul was missing - the epitome of who I am was just gone. My optimism and hopefulness replaced with extreme frustration. I connected the amount of days I had cried to the same amount of days I had been taking Nortryptaline. Even though it can prevent migraines it is actually an anti-depressant and was having the opposite effect on me. I asked my nurse if I could stop taking it and she said yes.
When I got up today I had a bit more energy and wasn't lightheaded. I knew that could be a side effect of the Nortriptyline so that made me feel like it was a good decision not to take it last night. I had the energy to make three bottles of green juice and was excited that I felt a little more like myself and could establish a healthy routine on my own. I attempted to teach my yoga class at 12 and train a client at 1. I sat down the entire class and didn't do any demonstrations to conserve my energy. Then I trained my client and made it about 45 minutes before I was too tired to continue. All in all I felt like it went well but it was definitely pushing my limits. I knew that they had told me to plan on taking at least the month of August off but I was hopeful that maybe I could handle one client a day.
Wednesday I wanted to push my limits again and tried going for a run when I woke up. I made it 8 minutes and ran a little over half a mile. When I got home my legs were aching and my lungs were burning. Unfortunately those 8 minutes of work incapacitated me for the rest of the day. I could barely get up off the couch. I kept trying to go for walks with Bodhi but couldn't make it past the front yard. I drank another green juice, tried an energizing tea, herbal supplements, hot showers, naps but nothing helped the fatigue. At 4 I had to head to physical therapy which was really nothing more than an assessment. She couldn't believe I had only been out of the hospital for five days and thought for sure I had been recovering for a year. I was exhausted after even though we only walked back and forth a few times and did some balance, coordination and range of movement tests. I headed home and took a long nap. I woke up and ate dinner and went right back to bed.
Thursday I had to go to Dana Farber for my hematology appointment. I was there from 11-4 and by the time I got home I was completely exhausted. The fatigue was so bad today that I had a continuous desire to lay on the floor while I waited for my appointments. The only thing that stopped me is that I was wearing a dress! The medical system completely annoyed and irritated me today. My nurse told me I should stop taking the B12 but I didn't feel like I could completely trust her so I asked to see the doctor before leaving. Then my doctor told me I definitely needed the B12. I was supposed to have a follow up with neurology this week but nobody scheduled it and my hematologist said I had to be seen immediately since I am still having symptoms. The neurology office informed us that they couldn't see me until September 30. At that point I just walked out of the hospital because I couldn't handle the ridiculousness and wanted to go to bed. After I ate dinner I started having a hemiplegic migraine and lost all feeling in my left arm. I felt like I was being pinned to the bed and so weak I wasn't sure if I could speak if I tried. I texted my mom and she felt that I should go to the ER but I didn't have the energy to move and didn't think I could speak to explain what was happening. After a couple hours I started regaining the feeling and was able to sit up but still felt very fatigued.
Friday I didn't wake up until my mom called me around 10:30. I was still feeling fatigued. My goal of having one client a day felt crushed. I had really had a crappy week so far. I think I cried every single day, my attitude was shit, I was so frustrated with the fatigue and my body not cooperating with my mind. Everything felt kind of terrible. I went to physical therapy and felt like I could barely move I was so tired. She put me on the bike for five minutes and it made me feel a little bit better about myself. My mind started thinking about trying out a spin class but then physical therapy proved that would be a horrible mistake. We worked for about 30 minutes. My routine was 10 lying leg lifts, 10 side lying leg lifts, 10 bridges with marching, and repeat for one more round. Then balance with one foot in front of the other for a minute and then balance on one leg for a minute. That simple tiny routine made me sweat and that was my workout for the day. When I got home I was feeling frustrated that I hadn't made progress with the amount of steps I was taking each day so I forced myself to take Bodhi for a walk through the arboretum. My right leg ached with every step but I listened to my motivational podcasts and was feeling good that I was capable of walking.
Saturday I got up early on my own and felt a little better besides having a migraine in the back of my skull. I was finally feeling more like myself, maybe not so much in my body but my personality felt better. I felt ready for a challenge and ready to push myself. I headed to the farmers market and then straight to physical therapy. I asked her to push me harder than Friday so she add a couple more exercises into the routine. I went home and slept for three hours. I attempted to try another run with Bodhi but after three minutes he was way too hot and refused to move. I figured it was a sign that I probably shouldn't be running either. After a nice shower and late lunch it had cooled down a bit and we headed back out for a long walk through the arboretum. Afterwards I got another hemiplegic migraine and my left arm went numb but I didn't have the severe weakness this time. I was able to mentally handle what was going on. I was thinking about the Nortriptyline and how it felt like it was finally out of my system. I googled it and found that it usually takes a minimum of four days to get out of your system. I felt so grateful that my optimistic and hopeful self was back. My night ended with a severe migraine in the right side of my head but all in all it felt like a great day.
I am stubborn and headstrong. I am used to being able to control my body even when I am tired and now I have lost that ability. I push myself as hard as I can each day and my body just won't cooperate no matter how hard I try. I think it was easier when I couldn't even wiggle my toes. At least I could sit there and stare at them while continuously trying again and again. Now my body is essentially fully functional but no matter how hard I try I can't get out of bed or off the couch. When I was in the hospital it felt like everything was out of control except for my attitude. I couldn't walk so I definitely couldn't go to work and didn't feel guilt about missing it because it wasn't even possible. This week it feels like I have had more control over my body (in the sense that I can actually walk) and no control over my attitude. This felt like a really long week and I felt like I made no physical progress at all. I had a lot of bad days but I ended with a pretty great one. I think now that the Nortriptyline is out of my system it will be much easier to handle the fatigue and push through the rough days. My optimism is the key to making the best of this situation and this week I felt like I completely lost that ability. I am truly looking forward to the week to come and can't wait to make progress!!
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