New definitions of Long COVID

I am the fiance and caregiver to a long Covid sufferer of starting four years this past April. Just reading some of these comments helps ME to an extent. What he and all others are going through is such a debilitating and life altering disease and so very sadly - most people Do NOT get it! I deal with this when I try to explain his situation ( OUR situation) to others….. even family can be so judgmental …. This is especially hurtful when what the person needs is empathy and kindness. Everybody’s situation is different and I feel him slipping away - he is a completely different person and I love him dearly .If not for his faith he would not be here.
Thank you for letting me comment.

Sadly, @karen8, it is incredibly difficult to love and care for someone who is not who they were. My spouse is being patient and I know I'm a pain because I'm in pain and just never well enough tho' I try to pretend to be.

Thank you for trusting us and for loving him and for being there. The more we support each other, the greater our strength in explaining what we know to those who choose to know too little.

Thank you for the comment . It is hard when your partner is not who he/she use to be. Thankfully he and I can talk about it however I try to not say too much because he already feels so poorly and lost . I also care for my 88 year old mother who lives “ somewhat independently “ in a senior facility nearby.

Tho' it should go without saying .. I'll say it: PLEASE care for yourself too. Please ensure your mom is well-vaccinated and that if need be, that she masks. You too. I can speak from experience that having long covid and being dependent on others is really tough and new to many of us. My spouse would tell you I'm a pain in the tush tho' he helps lots.

Sending hope for you all.

Yes, it is a huge burden on the family members. Especially the primary caregivers. My husband has really been there for me, and taken on all the household chores. In addition, I am just not who I was before. After so many failed therapies and procedures, I have become very negative and depressed. I try to show my appreciation, but I know I am a burden even though he never complains. Also he endures my meltdowns when I just can’t take the misery anymore.
I am so thankful to have a loyal partner. I could not have come this far without him.

Here's to partners and family and friends who allow us to be and to be supportive of that different person.

A Canadian friend, not seen for years, was in town for a conference and I had to say no, I can't see you - it's too much for me to do.

It is hard to explain that even having someone over requires (regardless of what they say!) some cleaning up which I do not have the strength to do.

Today is 'one of those days' where I am accomplishing too little work and am too tired and realizing there are not yet any real helps for my symptoms.

Here's to us and each other.

Yes, thank you!
I’ve had to say “no” sometimes to things I really, really want to do. I have missed weddings, and reunions, and it breaks my heart, but I can not control what I can do at this time.
Some people don’t understand.

I am sure all caregivers esp those to Long Covid partners appreciate that . “Disheartening and helpless” is what I say to him when he and OTHER people say “ burden “ . To me , it is simply what you do if you truly love someone. As much as I absolutely hate this disease and what it has done to us both I would rather be with him than not….. other caregivers who feel terribly alone ??

My husband has said the same to me. He still wants to sit on the couch with me, and watch a movie because that’s really all I can do now.
Our life appears to be forever changed, but he stays by my side.
It means everything to me.

I am sure many of us so understand. I just had to explain again to a colleague why I can't see them and there is so little understanding of the energy it takes us now that it didn't before.

Here's to us continuing to try our best. (And here's to streaming good viewing!)