I'm an emotional wreck already today - for VERY similar reasons - and your post brought tears to my eyes. My situation dealt with getting an e-mail from an "old" friend (maybe we should stay off our e-mails...); she and I used to teach classes for our kids, when life was different...just hearing how things are going for her (and as happy as I honestly am for her) reminded me of just how very limited I am.
I wish I could offer you the wonderful ideas that Linda did (and I'm sure others will). I just wanted you to know, that even with different life circumstances, I can very much relate to the feelings you are going through. I live with my husband (of 15 years) and six kids - and, yet, I too deal with feeling very much alone. Honestly, I don't think it is possible to relate unless you have dealt with the severe limitations that we all have.
I told my husband last night that I've figured out something about having a long-term chronic illness. It is not human nature (for most) to deal with something like this for long-term. 95% of the people that were there for me the first two years of being ill - have gone on their way. Not many of my friends and family could deal with the fact that I'm not the person of before - I can't go out , can't talk on the phone much, and what little energy I do have...I HAVE to give to my kids and husband. VERY few people have stuck by me through all of this.
Boy, I'm in an uplifting mood, I know - I'm sorry. BUT, please know - we DO understand and are here for you. I'm praying you can find a way to just try to take your mind off it and just find some type of relaxation for tonight. To me, it's just about getting through each day right now. I'll be thinking of you :)
PAlady, I can totally relate where you are coming from and I am sorry about your family member's insensitivity. i am on disability and left my career kicking and screaming. I have a very hard time dealing with this part of what I have lost to pain and illness. Good for you for writing her back and telling her how you feel, but if there is one thing I have learned about this whole process is "normals" will never understand this road we are on unless they have to travel it. And, I don' mean for a weekend trip, I mean everyday, all day for a very long time. Until that happens we are wasting our energy trying and hoping to make them understand. This is illustrated by her response to your reply. Instead of apologizing and saying she sees where you are coming from, she makes a wise-crack about having a sense of humor.
I need reminded of this fact too as I go about assuming people understand my situation and limitations, but time and time again, they show me they have no idea. I was watching something the other day(sorry I can't remember what it was, but it wasn't a movie or show, it was real people) and people didn't feel good and their lives came to a complete stop as they dealt with it. It really effected their lives. But they got better and off they went. We don't get better, what they suffered for a limited time is what we go through all the time. Even though they had a small taste of what we go through, they can't relate.
Oops, sorry to go off on a tangent, just wanted you to know I understand.
Post Edited (skeye) : 10/24/2008 8:29:42 PM (GMT-6)
It's been a few hours since I posted you; and just wanted to let you know that you HAVE been in my thoughts. I'm praying you had a better night tonight...
Sorry you've had a rough day, my dear Post when you can.
Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.
Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)
Past Meds: EVERYTHING. Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.
Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)
Post Edited (Pamela Neckpain) : 10/25/2008 1:41:35 AM (GMT-6)
I understand your post very, very much - and I'm sorry. I could have written much of it myself. Many people would say that just to imply that they "care"; (and you know me, I do care, of course)... But, reading between the lines as they say, I have experienced very similar loses and very similar situations.
I've received books of the very same nature. Or things people have copied off the internet. Mind over matter stuff. OR, if I would just start "(fill in the blank)", I'd feel better. I have other medical conditions on top of the chronic pain; I've had friends (?) give info on juicing, alternative-doctors, exercise (which actually puts me in bed), etc. I know some of it was well-meaning. BUT the "mind over matter" stuff IS trash. I agree, that's where it needs to go.
My husband's family, who never embraced me anyway, thinks everything I have is in my mind. This is despite all the tests, everything that has come back. Nope, to them - I'm a drug addict and a mental case. It's very hard trying to maintain a marriage with all that stuff in my husband's ear. He says that he knows the truth and everything, but does he? At his very core, does he really know how much I'm suffering and how bad things are? I don't know.
So much of our issues (pain & health stuff) involve grieving, don't they? I don't know about you, but I feel like my old-self died. I'm trying to find my place in this world with my "new self" and it's VERY difficult. Especially when I am faced, everyday, with memories of how it used to be.
Hope today is a better day for everyday. --Tina
Post Edited (Pamela Neckpain) : 10/25/2008 6:50:26 PM (GMT-6)