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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Don't judge me (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/204098-dont-judge.html)

AZ-Di 05-06-2014 02:47 PM

Well, I'm able to post a little today so that's GOOD huh?
I don't think anyone on here is intentionally bitter
There are times we need to share difficulties along with positive
events. Coping mechanisms huh? I like to think of it as providing
our own "therapy".
Allanira, thanks for reminding us that we can all understand being in
those "dark holes" and that we can encourage each other to try
to dig out.
I'm lucky that I too have a good Dr. who really gets it.
On a good note, I've been going to my continuing education for
my real estate license. It's inactive but I still keep it. It was kind of
a sideline for the last decade because we moved around. I lost my
"day job" lately of course. Now, I'm doing the classes in hopes that
someday I'll actually be able to do more.
:hug:

PamelaJune 05-07-2014 01:21 AM

Non judgemental fluff
 
I have to chime in, I apologise upfront for this bit of fluff I'm about to spread.

I don't have CRPS, I have enough of other painful conditions that have cause to give me me great distress. Financial, Emotional, Family, Friendships to name a few and those are the ones that don't keep me or my partner up at night because either I can't sleep or I'm knocked out and I'm crying in my sleep.

I don't have CRPS but I've been called a drug addict an attention seeker and a malingerer.

I don't have CRPS and I don't have any obvious physical disformity.

I do have 24 hour pain, I suffer with chronic pain, severe depression, generalised anxiety, advanced osteoarthritis, fibromyalgia, PN, a dodgy bowel, cluster headaches and the occasional grand mal just for good measure. My spine is crumbling and I will probably have my 5th fusion some time this year. I take the minimal amount of drugs possible to enable me to live a life in this 4 walled prison fondly referred to as my home. Of course there are times when I take the full prescribed amount of medication, they are very few and far between, wherever and whenever possible I try to survive the day on less than 10mg of OxyContin. I'm cutting down my anti depressants with the aim to once again cease them. I judge myself harshly when I have failed and had to resort to taking 1mg benzo, 5 months into the year and I've taken them thrice. I hate them, but I am grateful for when they knock me out and the relentless headache abates for an hour or so once awakened.

I don't have a support group of family and friends, they are all talked out, they still love me and I them, but we talk no longer of my ailments because I choose not to. They don't understand and rather than them suggest the I try this, that and, or the other thing because it worked for Aunty Betty or Uncle George and so forth I've found it better to keep my mouth shut and be selective about what social events I can make it to.

I cancelled the cleaner my mum arranged, no one cleans as well as you do yourself and if it means my house is no longer as clean as I would like so be it, because I know that at least once a fortnight I will force myself to move that vacuum round, I will move the furniture and I will dust and vacuum away cobwebs. All things cleaners no longer do as they are not covered by insurance. I used to laugh at my mum and dad cleaning the house before the cleaner came, then I learned why when I experienced it myself and I thought well bugger that, if I have to move this or put this away so that can be cleaned, I may as well go that one step further and do it all myself. There is nothing better than loving that feeling of knowing your house is clean.

I rarely go out. I use a walking stick and can never find somewhere convenient to put it without it falling over, someone knocking it or me forgetting it. It's very uncomfortable to sit in a chair at a Restaurant without fidgeting and moving and disrupting everyone and I in my insecurity feel people with me are thinking for gods sake just sit still. Well I know they are, my mother says it all the time even when I'm at home in my own house.

Last week I cleaned inside the house, that was Thursday, on Friday I got the Stihl blower out and blew the backyard and sideway to Kingdom come. On Sunday I went to the football, caught the train there, cheered like a loon for the 2.5 hours (we lost) and then walked 1k to the club for a drink. On our way to the game we change platforms just the once. Over 40,000 people attend the matches, a fairly normal crowd number, and with tickets in hand, public transport is free! So I'm sure you can imagine we were walking along with hundreds of other people. A man, a young man dressed all in black and carrying a backpack ran through the crowd at full tilt, he knocked me like a tenpin skittle and I literally flew up in the air, hit the outside of my right thigh on the corner of the metal handrail at the foot of the platform stairs and as you can imagine I was fairly panicked. Luckily for me an opposition supporter caught me midair (we all proudly wear our teams colours) and saved me from what could have, or definitely would have been a very nasty fall. My husband too was panicked.

In the last week I've upped my treadmill walking to 60 minutes, that together with the increased activity, the train walk to and from, walking at the grounds and walking to the pub gave me 2 you beaut blisters on each foot between my 2nd little toe and the one on my right foot has burst.

So I've got one hell of a headache as usual, my hips are weeping and throbbing, my neck, back and left arm hurt as they always seem to. I have the additional pain in my back from where the kindly man caught me and I undoubtedly twisted myself and I have a ripper of a bruise the size of a bread & butter plate on my right thigh where I connected with the metal post plus I have two blisters on my feet.

And today I'm all over the place, the blister on my right foot burst yesterday, it felt like the worst pain, it was so bad I imagined I must have damaged it in the flying tenpin skittle fall because yesterday I would have rated it on the pain scale. My other pains faded and all I could feel with every step was this intense ripping as the friction of the skin between the toes caught and rubbed. I can't walk properly with good body posture and that causes my hips to throb more and my upper and lower back to ache. I'm peeved because I can't work on losing weight gained through inactivity and I won't fit into my business suits when I'm ready to begin getting back out there and going for job interviews.

I'm bitter because I'm scared, I used to be good at my job, I won many awards and was widely acknowledged for the job I did, now I 2nd guess myself and put myself down and on reading job summaries I think to myself you won't be able to do that. I'm sad that I can't talk about my pain, I'm sad my dad is no longer here and mums health declining and I can't do for her what I want to do.

I'm bitter that my husband is finding it tough to live with me and my constant hospital visits, married 23 years and not a year gone by without my being hospitalised and more than 10 times in the last 2 years. I'm angry that the car accident 10 years ago ruined what quality of life we had despite finally after 6 years of court action the payout paid off our mortgage. I'm bitter that I have more than one freaking illness or condition and I'm frustrated that I had no choice other than to resign from the workplace just short of 2 years ago and I don't qualify for disability payments because my husband as a DDO earns too much.

I'm angry, sad and bitter about a lot of things as you can see, but, I'm grateful, so very, very grateful for the opportunity to write my stories of my sadness and my struggles. I'm grateful to the friendships and acquaintances I have gained on this NT site. I'm grateful to have learned I am not alone, that there are others in the world who like me suffer every day and not all with the same condition. I had never even heard of CRPS until I joined this site and some of the people I have learned from suffer far more than I can ever imagine possible. I've learned of different pain management techniques, different remedies and different approaches. I would not have had the opportunity to learn of any of these things if it were not for someone feeling a moment of bitterness and turning to this site and beginning to write of their journeys. I don't think anyone chooses to be permanently bitter here, everyone who I have encountered has had a story of gaining something somewhere.

There are those out there who are battened down and I hope that one day they will reach out and read some stories here on NT or YouTube and realise there is something to be gained from living and breathing, illness need not define us, for some, it can make us. Thanks for reading if you got this far. Like a said in the beginning I apologise up front for the fluff! :hug::eek::hug:

Allanira 05-07-2014 06:13 AM

Sweetheart it doesn't matter if you have CRPS chronic pain is still painful (no pun intended). For those blisters make an epsom salt foot soak with warm water. It will help the new skin harden up. It's rotten when you go from being great at your job to falling behind and not being able to do it. I was the same way. For years I was bitter, angry, and lashing out at everyone. I even yelled at my poor dog because she was being a dog. I kept going to Dr's hoping someone knew what was wrong. Here in the USA the drs really have the gods complex going. We understand being scared, we understand a lot more than people think. I'm on another RSD/CRPS forum and am about to leave it because it's become a who's more bitter and angry than the next person contest. Yeah I don't need that. I need information. I need people that can talk positive more than bitter. Any chronic pain disorder is more than the pits. There have been times I just thought of taking my dog and walking away. We could just walk. Just her and I. My husband wouldn't be getting yelled at, my family wouldn't have to hear me being a bitter angry person who turned her back on everyone because "they didn't understand". This was before my goober boys came along. Then I realized I would be hurting my husband more, and my pain would follow. If I gave up and just walked (or in my case hobbled) away I wouldn't ever really find out what is wrong. So I'm still here. I'm still fighting to figure everything out. Yes I'll have this for the rest of my life. I can only hope and pray I have more good days then bad. I can only work to get the word out more about chronic pain issues. Also it doesn't matter if the nice guy that caught you was supporting the opposition. We are ALL human. Now for the kid that knocked into you. He needs a good switching as my Nannay says lol. I remember getting those when I needed them lol. What I was trying to get across was don't let the fear become your world. Don't hold it to you like it's a lover. We need to try and let it go. Your husband sounds like he is really trying to support you. Also moms are like that everywhere. Mine tells me the same thing. If I get too cold I start fidgeting because I start hurting. I'm in my mid 30s now and still get it lol. I can understand about the cleaning thing. I prefer to clean my own home. I have a full sink of dishes that need doing. I'm getting my oldest son to help some. There are times I don't get something done or physically can't. Right now I call my father in law to help. I'm paying yesterday and today for planting my trees but I'm still proud of doing it. We need to try to find something we can do that makes us happy. We are all scared of the unknown and what ifs. We just have to figure out how to do the things we want with out letting every scary thing get in the way. I use a cane daily. If I don't I fall or some how end up with my nose in dirt. I don't like relying on someone to carefully maneuver me around things, or sit on the sidelines. I want to dance my way thru this. Yes it's not a very good dance but I'm dancing my version of a jig. If you're scared, or hurting talk. Don't say maybe tomorrow I will, or maybe next week, or month, or year I will say something. Let us know. We will commiserate, or say buck up, or something. I tell myself all the time just do it. You never know what you can do until you try. You never know what worlds open up until you take that first step. Don't let any of this beat us. If you want to try something try it. Now I'm not saying go climb Mt Everest. I'm talking about the little things we can do. Go run the vacuum across the floor, go sweep out the cobwebs, go plant something. Even if it's in a pot someone brings you. Just do it. Enjoy life and don't berate yourselves if you have to take a pain med every now and then. It's only a sign of weakness if you let it be. Go laugh and smile and enjoy life again. Just a little slower this time. If you live in a neighborhood go sit on the porch with a pitcher of tea and say hi to everyone going by. See who stops in to talk. Give life a chance. It may be a lot slower than before the pain started but we can still enjoy. :grouphug:


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