It's strange because this is the first time I have been to this community and I gravitated to the words "Exhausted." I know how you feel, I really just wanted to normalize your feelings. I realize you wrote this message several months ago but if you are still by your partners side the exhaustion only has minimized which means you are probably still exhausted but coping a little better. All the words you used were the same words that trampled out of my mouth day after day. Some days I felt sorry for myself, some days I felt like this can't be happening to my life, some days I felt like my husband and child are so selfish because they expect so much from me, and some days I just stood in the shower crying because I didn't know why I thought such selfish things about my loved ones. You see I relocated to another state for my husband's transplant which meant I had no family around for over a year. A few family members came to visit but after that i was by myself. My child was 2 years old, so he constantly ran around, he needed a routine, a meal schedule, and play time plus my husband needed me to be his daily driver, his maid, his caregiver, his medicine giver, his bandage changer, Iv flusher, etc. So my life was revolved around everything and everyone elses needs, I felt I lost myself. But after 6 months of this I realized I needed to make time for me. When everyone slept I ate and not cleaned, when my husband was hospitalized I went out with my child, and I shopped when he had appointments. I stopped feeling guilty for being away from him, I stopped worrying that I wasn't the great wife because I choose me time while he sat at the hospital for his treatments/appt for 5 hours, and I stopped beating myself up for all the things I didn't have and I really started focusing on things "I" had. Sometimes it meant the cool shoes I purchased from Salvation Army for $2.00, believe me I understand your financial issues too. I was there. I had no job, no income, and all we had was SSID which started several months after our transplant. So thrift shops, coupons, and sale adds got us through a year+ away from home. Selfishly I think it's a positive thing to think about your needs as you process through each day, our patient's/family can take so much away from us, they can drain every once of energy and joy away but know it's not intentional. Our patient's are processing through so much fear and guilt themselves that they just don't have the energy to think about anyone else, the medication, constant visits with doctor's, specialist, blood draws, possible depression, etc. consumes so much of their physical body, mind, and coginitive functioning that the only thing that they should be doing is focusing on getting better. But remember you are still a person who has her own needs and wants, and yes you didn't ask for this but we normally aren't given things we can't handle so try to figure out if there's anything he can do to make things tolerable. Here's something that helped me to be a little less irritable with my husband, I asked my husband to be mindful and say "thank you" anytime I did something for him because It helped me to feel appreciated and not taken for granted. Little things do make a difference, someone once said "why do you always remind him to say thank you, he's SICK for god sakes, and I said I know he's sick but he should still show his appreciation because I don't remember the doctor's saying a lack of appreciation is a side affect of one of his med's and I'm not his employee, I'm his wife." Hearing my husband say those two little words "thank you"rejuvenated my spirit in some way, those words reminded me of times before our move for the SCT. Take care, things do ease up and everyday routines become so normal that you can do it with your eye's close which gives you more me time.
