Hints, Suggestions, and Ideas for Caretakers, Loved Ones, and Friends
...But don’t have any FUCKING idea how to help them!
Note: If the above message applies to you, then this posts' for you baby! : )
1. Please do not force us to lie or be sarcastic by asking us, "How are you feeling/doing?" Also, unless you purposely want to make us go postal, Do Not (Ever) say, "You look great!"
Trust me, when these chains finally break, and I AM feeling better, you will not only be the very first person I tell, but I will also probably Broadcast it ALL over the Radio, TV, and (possibly) Internet! In fact, don't be surprised if you see a YouTube video of me doing a victory dance to the song "Walkin' on Sunshine" as well...
Hint: Try saying, "It's so nice to see (or hear from) you!" and give us an extra bit of "Love" in that hug instead.
2. Please do not judge us if we're not "perfect patients"!
This is a BIG one for me...and when I see those disapproving stares as I take that first sip of coffee or reach for that deliciously comforting Raspberry Scone, sometimes I literally want to scream:
"I'm sorry...do you SEE wings on my back or something?! NO - I'm human, I'm flawed, (and am going through some seriously frightening SHIT at the moment that I'm trying to handle with as much grace as humanly possible!) Please forgive me if I'm not being a complete "Angel" about it!"
3. Please do not "Ask" if we need help! Of COURSE we need help...
This is basically a story of "IF and THEN"...IF you love someone who has Late Stage Lyme Disease, THEN you should already know what their symptoms are, be educated about the very controversial climate we suffer in, and understand that we are desperate!
Also, it really does take a "Village" to help cure a Late Stage Lymie. Please do not mistake yourself in thinking that a single caretaker can do EVERYTHING by him or herself! It's simply not possible, and when OUR caretakers get stressed, WE get stressed (which does not help our already "Off the Charts" Guilt factor we have from knowing that our illness is a CONSTANT burden to them!)
Here are a few suggestions for those who do care enough to help:
We often spend the day by ourselves, sometimes not talking to ANYONE for days (which is extremely lonely). This can either be because we don't want to burden you with "talking" about how we are feeling, or it can be that "talking" is literally too exhausting for us. BUT we miss our friends...please DO send texts, e-mails, or letters just to say you're thinking of us, or even maybe something that will make us laugh : )
Food is critical, and we have a particular diet to follow, however - seldom do we have the energy to actually make our own meals. You would probably bring us to tears with gratitude if you'd be kind enough to bring over some leftovers we can eat.
Give our caretakers a break once in awhile and offer to either drive us to our Dr's appointments, pick up our medications, or any other "stuff" we may need.
The financial costs for treatment of this disease are astronomical, and is probably the number one thing we worry and stress over the most. If you are unable to help us out yourselves in this regard, please consider throwing a little fundraiser for us - trust me, we are grateful for every cent we can get. (Plus - it's good for Karma : )
Sometimes, just coming by and sitting next to us for an hour or two while we watch a movie will do wonders for us. (Even if we don't say anything, knowing you are there, sending your love to us really is enough!)
Please do whatever you can to create a private healing "space" for us to stay while we are sick. We've already lost everything, and being "on display" in front of everyone, adds one more notch to the complete and utter shame we already feel about that.
If you are far away and can't do any of these things, please pray, send love, prana, energy, or hopeful healing thoughts to us whenever you can. It really does help!
4. If we "Offend" you by either saying, not saying, doing, not doing, or forgetting to do pretty much ANYTHING - Please, don't take it personally!
Understand that we are suffering from a Multi-systemic (that includes the Brain) Infection. Because of this, it is extremely unpredictable as to what we will be able to do or not do, act like or not act like, on ANY given day. This BAFFLES us as much as it does you!! If you are still by our side after seeing us deteriorate to a near invalid, trust me - the very LAST thing we would want to do is upset you in ANY way!
5. We understand that it is VERY hard to relate to what we are going through, but do YOU understand how hard it is for us to relate to you??
Honestly, when my friends call me and start talking about their "normal" day or what they did over the weekend (went out for dinner, had a few drinks with friends, went shopping, etc), it does three things to me:
It metaphorically makes me feel as through you're talking about a dream I just had, but now that I'm awake, is something that my body vaguely recalls but is just beyond my mind's reach.
Makes me realize JUST how sick I am, and the comparison makes me want to cry.
If I'm being brutally honest here, sometimes it makes me wonder...you know I'm desperately struggling just to keep my head above water, right? Would it really kill you, to spend one night in, like maybe once every three months, and help me out just a little with the money you saved from doing so? Is that TOO much to ask? If so - why?! I'd do it for you in a heartbeat!
6. We KNOW that it has been years since we've "been well", please understand that this frustrates and upsets us as much as it does you! We WANT to be well again more than ANYTHING! Don't give up on us!! (And we won't give up on you!)