July 15th- Fatigue like I’ve never experienced before in my life! – Day 30

Wow! Not at all what I was expecting. I had a wonderful day first day OUT after being inside for one week. I enjoyed the sunshine,  letters from home,  talking to friends face-to-face and once again being outside. I was surprised that I needed help getting up the four stairs, when it had not at all been difficult in the past. I just figured it was just one of those things. From now on I will only go outside before 5 o’clock during the week when the door with the ramp remains open. Carol and Ellie  had volunteered to take me all the way to my room but it wasn’t necessary once I was on flat ground. I decided to visit Sheila, my New Life Birthday buddy and her wonderfully supportive husband, Dan because she was now out of isolation as well.  I was planning on visiting for about 10 minutes.  Sheila was watching  a movie, and Dan was ready for a nap.  Well, my jelly legs did not cooperate and I stayed chatting with them for over an hour until legs were ready to walk the TWO doors down while still using my rollator.

The next morning, Sunday, July 14th, I had a visit from both Anastasia and Dr. Fedorenko.  They both stressed the importance  for me to REST, REST AND GET MORE REST. I stayed in bed the entire day and only got up for meals.  I also realized that I had not been getting as much sleep as all the other patients.  I stay up too late thanking people for their donators, support, prayers and love.  I am also continuously fundraising to help meet my goal.

One of my first official sponsors was Erin Cassell, of Roll Up’Dye.  She so generously volunteered 200 shirts, her skills her dyes and her time.  I’ve been searching unsucessfully for a venue, inside or outside and 200 adults/kids willing to participate for over 4 month.  I could be a camp, a church, boy scouts or girl scouts, a swim club a family reunion.  Any possible gathering of people who enjoy tie dye!

The event can be indoors, outdoors, hosted in a back yard, etc.  The variables are endless!   If the shirts will sell for $18 each, my fundraising goal would be closer to my goal : )  Please help me find a group who might enjoy tie dyeing!

So, I will follow Dr. Fedorenko’s orders, sleep more, delegate more and get tons more rest.  My body has gone through a lot and now I need to help it recover.  No more late nights and I’ll even try to take naps 

Time to solely concentrate on myself. My latest thought was that everyone who knows me, used to know me or wants to help fundraise can ask their friends for a small donation – $5/$10/$15 if it’s a good day. If they have already donated, they are just the collectors I take a much needed rest from fundraising and who knows – it could actually work. A small amount can add up and help me with the remaining treatment costs. However, this is not for anyone who has previously donated any amount in the past. Just please encourage your friends and family to make extremely modest donations if they can. What do you think? It could help a lot!
***Already received a donation from my sister’s friend, Karen, from Sacramento!  It works : )

So, these are my thoughts for today:
Take care of Nancy.  I did not know I had done too much.  But that was fatigue like I’ve never experienced before and I will certainly take notice of what I do every day and how my body feels later and the following day. I’ve been advised that this level of fatigue will be normal for the first 3 months after coming home.  Good to have an idea about what to expect!!!

This is a breakfast that made me so happy when I was in isolation.  Oatmeal, coffee, yogurt and thinly sliced apples made very soft in the microwave.  Today, I made tuna with cumin, turmeric and yogurt and that was so tasty too!  The food is healthy and excellent here, but a little homemade variety is fun too!

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One more is an older photo of Dr. Denis Fedorenko.  Some how, I love this one of him : )

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Last shout out of the day is today is Stevie and Carol’s 25th Anniversary!  Stevie was so sweet to loan me his ‘new’ macbook charger.  It was compatible with my 2008 macbook and mine decided to quit working last night!   Thank you again, Stevie!

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8 Comments on “July 15th- Fatigue like I’ve never experienced before in my life! – Day 30”

  1. FLEA FOOT says:

    thank you for your updates, they are helping pave the way for me. Flea XX

    Like

  2. msedita22 says:

    ah Nancy, good to hear things are moving along. try to rest as much as possible while you have the chance. Enjoy.

    Like

  3. brookeslick says:

    HSCT fatigue takes MS fatigue to a whole new level, Nancy. Make sure you rest now and when you get home, It’s imperative. You know how they say “No chemo, no cure.”? Well, “No rest, no recovery.”. Make sure you take the time for yourself that you need. A year from now you will be rambling about and the fatigue will be a thing of the past. You’re doing an awesome job! 🙂

    Liked by 1 person

  4. cas124 says:

    Nancy – if you send me a link on the fundraising effort using roll up’ dye, I will see if I can help.

    Like


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