Things I wish they knew

September 7, 2006 at 2:30 pm

OK … here is a very, very blunt list. Sorry if I offend anyone.

(1) I am not here by choice. I am strong, proud, independent, athletic, responsible, intelligent, and fun. It is not by my choosing that I am stuck here battling this disease. It is not by choice that I need your help to survive right now. So [U]please, please, please [/U]don’t whine and complain (caregivers) about how much you hate your job, how tired you are, how much the hospital administrators have put on you so you don’t have time, or how much you don’t want to help me with restroom activities or any other problem that requires your time and effort. If I could help you with your activities and make life easier for you, I would jump at the opportunity. I want to be the best / easiest / most enjoyable patient you have ever had … but there are just some things that I cannot do. No matter how hard I try, my legs will not move. I am sorry. Please dont make me feel worse about my condition.

(2) I am awake, coherent, and intelligent. Please don’t talk about me with somebody else in the room as if I am not present.

(3) If I say I am in pain, believe me, I am in pain. If it were just a headache, mild discomfort, or an irritation, I would be too proud to ask for your assistance. I would much rather bear mild discomfort than appear weak. Trust me, if I am asking for pain relief, starting me off with 1 tylenol and telling me you will check back in an hour to see if I need another tylenol is NOT going to solve the problem.

(4) Please do NOT come into my room with a loaded heparin shot (stinging stomach shot for the non-GBSers reading) smiling and joking with stupid remarks like, “This is really going to hurt … get ready cause this really hurts” while grinning from ear to ear. Joking is fine … spiteful joking is just not funny (especially for those who are either thin to begin, or have lost so much weight that the fat layer for the shots are tiny).

(5) Hospital beds are not comfortable … look at them … the mattresses are plastic. Please don’t make it worse by using sheets with holes in them (the discontinuity causes pain for GBSers), using ratty pillows, torn-up pillow cases, etc.

(6) I can’t move. If the IV starts beeping, if the heart monitor patch falls off, if the oxygen sensor slides down, if the blood pressure cuff blows apart, or if the light bulbs in the room blow up, it is not my fault. Please don’t get upset with me when the alarms start beeping … I can’t help it.

(7) I am a proud, previously independent, intelligent, professional person. Please help me to appear so. I need to brush my teeth, wash my face, shave (face for me, legs / armpits for the ladies), get regular showers / baths, comb my hair, etc. Please help me to do this in the morning, before any visitors show up in the afternoon.

(8) Please don’t bring me piles and piles of puzzle books. The thought is appreciated, but the energy is deficient.

(9) Family members (especially medically trained) – please do not come in and tell me and my entire family everything that I am feeling … just because you have heard of GBS, you are not me. My aunt (Nurse Anesthetist) told my entire family that there was no pain associated with GBS, 95% of patients make full recoveries, and life goes on as if nothing ever happened. I actually had to argue with her in front of my family that I had pain … and she fought vehemently that I certainly did not. I am having enough of a struggle fighting the disease, don’t play “know-it-all” just to look important to others, or to belittle me.

(10) Don’t rub my feet!!! I know this is a personal choice for many, but at least ask prior to touching any part of me. I have been home for 8 weeks, and touching my feet will still make me leap higher than Michael Jordan ever did! (Hmmm … maybe there is an opportunity in the NBA brewing here?)

(11) Please don’t just make yourself at-home to my fruit basket / care package. Please ask … we get very few good meals in the hospital, so please don’t take away our saving grace of fruit or homemade cookies while we are sleeping. Besides being tasteful sustenance, it often has emotional value to us as well. I will likely share, but please be mindful that you can go home at night and eat anything you like … I do not have that luxury.

(12) Do not yell at me for the mistakes of the previous shift … it is not my fault.

(13) For family members – please dont go through a list of all the things that need to be done at home (mowing, laundry, cleaning, leaky faucet, plumbing, etc.) … I feel badly enough about my inability to help already.

(14) Do you know what a portable DVD player and some new movies would be worth to a GBS patient?

(15) I am scared … please don’t keep telling me it will be all-right. You are just making me even more anxious.

(16) Please don’t tell me of all the difficulties at my workplace … I cannot do anything about them right now.

(17) If possible, please take me outside, or for a stroll (wheelchair) through some different areas, through the lobby, by some different windows, or basically anywhere different. I can tell you that there are 1,783 holes in the tiled ceiling above me, and I would love a chance to look around without triple checking my counting again.

(18) In my mind, my relationships are very, very fragile, and I need to hold onto reminders as closely as possible. Please don’t ask me to give up my wedding band right now.

(19) For medical staff, please do pop your head into the room to say hi, even if for literally 10 seconds. It helps to think that we are friends rather than simply patients or work.

(20) Please do turn on some music during the daytime if I am awake and alone.

(21) Please surprise me with a “picked-up” meal (not fast food) sometime … that would be wonderful!

(22) Please do provide me with all the research and information you can find on GBS … the doctors and nurses tell the patient surprisingly little, and what they do tell you is generally incomprehensible to a non-medical background.

(23) When you can see me getting tired and struggling to keep sitting up, please let me know you wont be offended if I lay the bed down.

(24) Please understand if I am tired, groggy, frustrated, or depressed, but also feel free to kick my butt if you see my attitude going downhill.

(25) Please don’t just throw new blankets on the bed … yes, my skin really is that sensitive.

Hope this helps.

Things I wish they knew

May 11, 2006 at 11:59 am

[B]-[/B] One of the things that that irritated me tremendously was when I was paralyzed and was on the vent. people would become EXTREMELY animated and almost shout when speaking to me. I could hear, and I could understand. In one way it was rather commical, just got a little irritating after a while. 😀

– I found that the doctors,nurses etc. generally would’nt talk to me about what was going on, or even what tests would be done, or just generally what to expect next. They would talk directly to my parents as if I wasnt even in the room, or worse, they would call them out of the room to discuss things. Maybe the fact that I was 18 at the time had something to do with it, and Im sure that is the way to handle things when you are dealing with a child. However, I feel it is so important that family who are given information, relay that information to the patient, maybe even ask the health care professional/s to communicate directly to the patient so that they are aware of what is happening to them (unless they are too young). I found not knowing was worse than knowing.