I have mentioned previously the anxiety that visits me daily. Every twinge of the abdomen while healing , feeling wired everyday, the shaking hands making everything taking a little longer to accomplish, the jitters in my legs causing me to feel unstable on my feet. And you all know, that's just less than half it!
Long before my transplant my boyfriend ( whom I live with ) frequently mentioned he did no want to hear about my many health issues. I was on dialysis for five and a half years. And now, I am a little over 2 months post transplant. He was wonderful the first three weeks as my caregiver. But now he's grown impatient with my healing process. And tired of hearing my woes.
This pandemic, of course makes matters worse .People don't visit much. Just as well! Friends just want to see a smile on your face and hear all the positive information concerning your progress. And that makes sense. I wouldn't want to run into a friend and hear all about their health woes and the loneliness. It would leave me feeling uncomfortable and sad!
Here's the thing .(there's always a thing). I am lonely! And I know I am not alone in this. But it doesn't diminish the feelings of Loneliness or Anxiety when I am in the throes of it.
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Pandemic is a very lonely time for almost everyone. It must be especially bad for people having recently had a life changing surgery. The surgery itself takes time to heal plus the body is getting used to uncomfortable side effects. It is completely normal to feel not yourself and more isolated than usual. Please focus on taking the best care of yourself and surround yourself with people who truly care. If it continues to feel bad, ask to see a counselor through your transplant center. They have the right tools to help you feel well again.
Dear Lisa Snow, I always love to hear from you. You are straightforward, inspiring and helpful. Once again , you have help me to feel better. Thank you for being there.
I am sorry that your boyfriend seems to be less patient with your care. I think COVID situation also makes him feel not so himself. Try to give each other more understanding and more space may help? I certainly notice how short on patience my SO and I have been with each other since last March, when lock down started. You have already conquered a great battle to make your life better, try to remember the spirit of hope and joy. The minor inconveniences of side effects are going to diminish in a few months. Hang in there!
The entire transplant process is inherently anxiety-producing. As our kidneys were failing we were anxious about our falling eGFR, then about all the uncertainties of evaluation and obtaining a kidney, then about rejection and all our lab results.... as well as all the little twitches you mention. A certain level of anxiety is a normal emotional response to everything involved in being a transplant patient. However, if you do feel your anxiety is interfering with your daily activities, talk with folks at your transplant center as they can probably provide referrals.
Hi, So sorry to hear you are feeling like this. Loneliness is a horrid thing but you are not alone as this community is here to support you. Family and friends are great and want the best for you. However they do not know exactly what it feels like to be you. Having a chronic illness is something that perhaps only those who experience it too, can fully understand. One way that I find in dealing with this is by being in touch with other people who are in similar situations. This community is great, also there are support groups out there: charities often have a social group who meet either on line or in person, to chat. Hospitals may have peer supporters, patients who have had similar experiences who they can put you in touch with to speak with. Also when attending clinic there are others to chat to and share thoughts with as I'm sure you do.
Your kidney clinic will also have a psychology expert who you can arrange to see if you feel you need to talk.
Family and friends are in a difficult position too. They want the best for us but sometimes just don't know how to help and this can show in frustration.
One way to think about it that I find useful is to remember that there is more to me than just my illness. And to let this show to other people.
Most of all, right now you are in recovery from your transplant. It can take a while to begin feeling like you again so be kind to yourself. It does get better. Having a transplant is a wonderful thing. It's tough right now but the weeks will go by and you will make your small steps towards recovery.
Lonliness is a universal feeling. We all experience it at times, particularly at moments as you have described - health issues and relational issues. Most we cannot truly control. We can only control how we react to them. Try to discover what makes you strong and happy. We all have characteristics that get us through the hard times. We have developed these as a young child. We at times depend on others for support but we all have some inner support system. Sometimes it's a belief in a god and sometimes it is a belief in some thing inside us that has no name. Sometimes it is a memory of a better time or a dream of a future event. Find yours and make it the priority of your conversation with yourself. Take care and continue to reach out to others for support but also be your own support system and share that strength with others.
I totally understand the feeling of loneliness. Even when I’m with others I feel alone. The transplant is a very personal thing and there is no way to get others to understand. The meds keep you on edge and for me every ache or twinge around kidney area I think oh no is something wrong. It’s been 10 months since my transplant. My advice is find somebody that will not just listen to your concerns but actually hear them. Ask to see or talk tothe counselor with the transplant team. Hang in there and you can post your fears and feelings here anytime. 💕
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