Tell me it will get better

[Leslie]

I had my third infusion today. For a few days after my first two I felt great, I owned the world. However, I would get sick after that. Today the nurse asked me to call her if I had a flare up. It must have hit me wrong because I got really upset. I've never felt good except for a day or two in over a year. I've been in incredible pain for three. I feel like because I'm not a complainer no one is understanding how bad this is and how this is affecting every aspect of my life. I don't want to burden the people around me, no one wants to hear how sick you are every day but this is a very lonely disease. I'm trapped in a body that hates me and I dont know how much longer I can keep up the "power through it" act. I'm done. Please tell me tomorrow is another day and I will get on the other side of this.

 

[handle]

Hi Leslie,
Sorry to hear you battling away on your own. It is a very personal and often painful illness - with all sorts of disgusting side effects and things we would rather not discuss. You do need to find a way to release the emotional stuff inside. It helps to put it out there. Complain away!
I think it's a good sign that you got a few good days after each infusion. Hopefully it will build up over time and your body will have a chance to heal. Each little break from pain is a chance to recover. You will need support via other medications (pain meds etc) while you go through this. And yes, it will get better.
good luck and all the best.

 

[moogie]

Some days are better than others. I agree to that.

Not complaining is one of the worse things you can do I think. You can,T just whine either mind you but your family is there to help so I suggest you use them. We can,t go through all this hell wihtout any support.

And never forget we are all here for you.