With a hand slowly opening more day by day, and increasing pain from holding the right arm up to either write, type, or drive, I have learned again that I can, and do, make it through each and every single challenge that is placed before me.
How? With the knowledge that I MUST. I have no other choice! I am learning how to ask for help. I am learning to not get as annoyed each time I drop something, or knock something over which has been every day in this last month plus of the spontaneous paralyzation. Many clean ups, many attempts that seem to get more impossible each time I try to pick something up that has been dropped on the floor, each one of those seemingly small things make me stronger. Emotionally.
The ability to LIVE and live with happiness through decades of ever-increasing back/now neck pain, (Chronic Pain), shows me that I can continue to face each issue that faces me, physical or not, with determination, a sense of purpose, a reason for it all, and a 'never give up' attitude.
If you are feeling alone in your pain, or in your physical issues, please know that you are not alone. Just because I have chosen to write my life for the world to see in a blog means nothing when it comes to my being any different than you. We, the sisters and brothers in pain/hidden/and sometimes NOT so hidden illnesses, must band together and begin to rely on even the simple words we read on these blogs geared towards these subjects. I want to help you all. Yet, I have not even been able to read, or forbid, answer the emails sent to my blog address.
No one is being ignored. I just can't do it. Not like I used to I mean to say. I need to work through things in my life one by one, and take the priorities first. We must prioritize- or then it will all seem like too much, and become overwhelming
Just hang in there. The pain may never stop, but the daily will to overcome it won't either.
Saturday, March 14, 2009
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I'm no longer certain that your final sentence applies to me, at least not for much longer. I've been reading your blog off-and-on for quite some time now. I admire your strength and spirit so much, but I have personally reached a point in time where I am simply getting tired of fighting. I've noticed over the past few weeks that my pain meds have started making me nauseous, I have no idea WHY, after all these years it has started having this side-effect. I've tried all of the pain meds available, and this is the only one I'm able to take and remain in the land of the 'aware'. The trade-off, of course, is that they aren't super effective on my 'bad' days. I wish you could share your spirit with me. I wish I could be like you. My personal 'adventure' in chronic pain began over 38 years ago, and I have reached the point where I'm ready to say 'enough'. I honestly doubt that I would do anything 'stupid', cos I wouldn't want to do that to my family, but I might be ready to take the stronger meds even though that would mean that I wouldn't be able to continue any sort of active life at all. I've discussed this with my doctor, and he is leaving the decision up to me. I'm just curious to know what you think. Is it always wrong to take the 'easy' way? How do you cope with the days when it just all seems 'too much'? Where do you find your strength?
ReplyDeleteYou are in my prayers. Thanks for being here.
Shauna, hope things continue to improve. Meanwhile, I think the one thing we all understand is that sometimes we just can't email or comment or post on blogs :-) We worry when someone doesn't post for a while but we all understand how it is and are always there waiting when a friend returns :-)
ReplyDeleteCarolina, I don't have an answer to your dilemma and it's a difficult situation. I've found that this winter has been one of the worst for my chronic pain than in previous years. Maybe it's the overall climate getting colder and that's just the cycle we'll be in for the next few years. I've had to adjust pain meds also over the past few months. I wonder if others are noticing the same thing. Hope you find some relief soon!
Dear Carolina,
ReplyDeleteMy last sentence does not always apply to me everyday, that's for sure!! Somehow, I DO keep on keepin' on, but some days I am ready to pull out my hair! ( hopefully the grey ones!) lol
I feel so sad for you in your situation. I really can't give you the advice here that you seek, yet if I can get in touch with you--write me at my email, as I'd also like to read your blog; I tried to go to it just now.
I can not thank you enough for the sweet words you wrote to me, I don't have a magic potion or a huge 'reason' for my strength. It is just there. The days when I wake with a 9/10, or go to bed after a day of a 9 all day, I say 'ENOUGH"!! But I call my best friend and she listens to me. I rely on other bloggers and those in my life that understand, and do not judge me. God forbid I discuss in depth my meds with certain people. They just don't understand, and never will. They don't say, "Wow Shauna, I'm so glad that you can at least get out of bed without crying for an hour...all due to your new med change!" No, it is negative and downer talk about taking meds at all. That's why I stick with those who do not judge me, for they either know what it is to live in my shoes, or they listen with compassion.
If you are in 8 to 9 of a pain level on a daily basis, I have always said that no one, in this day and age, needs to live in that level of pain with all the choices available in meds.
Hopefully there is something out there that is not so black and white--to either be in horrid pain; or knock you out and render you unable to have a life at all. Sounds like your doctor trusts your own judgment, and that you have a good repertoire between you. That must be a long-term relationship I am guessing?
Like Sherlock said, she has had one of the hardest wintertime's on her pain. Everyone is affected differently by cold, heat, climate changes, hormones, stress, support or lack of it, etc. It could be that one or something else in your life is really knocking you down right now, affecting your pain.
My heart is breaking for you. I wish you only the best, and know that my life is certainly not always roses and happy thoughts. Today, for instance, follows a night of not one moment of sleep, too many stressful events going on in my life on top of my pain, the hand thing, and I AM overwhelmed. It can happen to all of us that are in pain on a daily basis.
And I DID drop things all dam day yesterday and spilled, and knocked things over, and arggghhh!!!
With gentle hugs,
Shauna
Dear Sherlock,
Thanks for the words of encouragement and understanding that you know when one of 'us' is out of the loop for awhile. Aside from long intervals between posts, I haven't been able to even visit my sweet friend's writings at all lately. I want to, I just can't. A dear friend awarded me something so fantastic, and I want to put it up, but I lost my list of those I am passing it on to. (Which you are one of!) It's frustrating, those 'little' blog things....And I know you understand.
I can tell your heart goes out to Carolina also. It is hearing those stories that just make my empathy overflow. And sometime leave me feeling so frustrated.
Thanks again Sherlock,
Gentle Hugs honey!
One of the symptoms of Chiari is the "drop" attack. This hasn't been a big problem for me until recently. I've noticed, though, that on bad days, it's hard to hang onto just about anything in my left hand. Thankfully, I have no paralysis issues to make matters even more challenging, but I can definitely relate to the frustration of constantly picking or cleaning up after I've dropped something, LOL!
ReplyDeleteHere's wishing you a less painful day with only a couple of messes to clean up after. :)
Shauna,
ReplyDeleteI am so sorry for what you're going through but your attitude towards it is great, as always.
This is an excellent post as always. I recently had to (reluctantly) take my email off of my blog because I was getting totally overwhelmed trying to individually answer each email. Thanks for a great post.
Jeanne
P.S. That petition you signed reached 300 signatures today! :) Pretty cool, huh?
Shauna,
ReplyDeleteNot sure how to "friend you back" in Blogger's follow tool.
How did you do that?
Jeanne
P.S. The email addy I have for you is no longer working.
Carolina,
ReplyDeleteI just caught your comments & feel compelled to respond.
I think most everyone who is seriously chronically ill goes through very challenging periods that can be dark, depressing, and even scary.
Most of us would love to have the ability to stay positive all the time but realistically that's just not always feasible.
I tried pulling up your blog (which appears to be about fibro?) but it was invitation-only.
I have fibro (along with 16 other chronic illness diagnosis). My chronic illness journey began at age 13 when endometriosis symptoms began.
Seven surgeries later, I have many illnesses that have been connected to endo (including fibro)... plus a pile that do not seem to be connected as common co-existing conditions.
Since my endo finally got diagnosed in 1992 (after 10 years of suffering undiagnosed), I have participated in local endo support groups (in person) and started a group in my area in 2001.
These support groups have been invaluable to me.
As Internet support increases (and people's schedules get ever-busier), in-person support grp turnout nationwide is way down.
So we stopped monthly meetings last summer but we stay conected.
In the meantime, I started my chronic illness blog last June.
I cover many chronic illness topics including fibro, endo, interstitial cystitis, neuropathy (permanent nerve damage caused by an Rx taken exactly as the Dr prescribed it), Reynaud's Disease, multiple chemical sensitivity, and much more.
I KNOW WHAT IT'S LIKE TO REACH THE ULTIMATE FRUSTRATION POINT
I don't know enough about your situation to begin to know what to suggest for you but thought I'd share some things that help me other than the typical "drugs & surgery" route...
Some of these are free and some are not. The free ones may be just as helpful as some paid methods. So if you haven't tried it, consider trying something new:
* acupuncture (I just posted a couple of videos on this topic, see my blog for more info)
* Chi Nei Tsang (I know support group members who swear by this
* meditation (studies show this has measurable health benefits - as back & white as lowered blood pressure)
* deep breathing exercises/diaphragmatic breathing
* progressive muscle relaxation
* Maya abdominal massage
* homeopathy
* Reiki
* Massage therapy
For 27 of my 40 years, I have been chronically ill. Many of my conditions have overlapping symptoms. For example, I might have off-the-charts pelvic pain that any one or more of 5 different illnesses could explain. Lovely.
For me, therapy is a huge component in my overall healthcare. I need my therapist's reassurance that I'm walking (or, some days, crawling) through the "mine field" the safest, more productive way possible. It's NOT always easy. Let me revise that statement... It's NEVER easy!
However, we each get dealt a hand in this life and I try my best to do what I can for my daughter's sake. (That's not to say I put her needs above mine because I totally believe in that analogy where they refer to airline flight attendants saying, "put the mask on yourself first and then your child". I believe that I must take care of myself in order to care for her.
THIS IS NOT ALWAYS EASY!
From what I gleaned from your profile, it sounded like you're a mom. While being a parent is the hardest job there is (bar none), I get strength from my daughter. She may only be 8 but she knows I'm sick. I try not to belabor my illnesses or "take away her innocence". But I also tell her the truth.
So if she asks me questions about WHY I can't do xyz, I answer (age-appropriately) the best I can so that she understands it's the ILLNESSES that are keeping me from doing certain activities with her.
I never want her to think it's somehow her fault (!) that I'm not more involved in the physical stuff (i.e. I have vulvodynia... so I can forgot EVER riding bikes with her... which makes me sad).
I'm not sure if you were having a particularly trying day when you commented on this post or not but I cannot tell you how beneficial therapy has been for me in dealing with the stress, grief, loss, and frustration of my daily life.
I agree with you that there is much to admire in Shauna's strength and spirit.
We ALL get tired of fighting sometimes. That's OK. Maybe you are in a phase where you need a rest from "fighting". Maybe you need some peace and quiet, a good book, a snuggly blanket, a cup of tea...
As far as pain meds making you nauseous, I get it. Drugs I used to take with no side effects now are totally intolerable (nausea, dizziness, feeling drunk, falling down in the shower). So I "get it".
Your body may have just reached a point where it's having trouble metabolizing that stuff. I would suggest talking with your Dr.
In my case, I had to abandon all traditional painkillers (traditional meaning narcotics or non-narcotic painkillers).
I do take gabapention to treat my neuropathy (very low dose after falling asleep at the wheel scared me to death)!
However, gabapentin is technically classified as an adjunctive anti-seizure med that just happens to help certain forms of chronic pain.
If you have not tried acupuncture, I would HIGHLY recommend it! It doesn't hurt. See my videos for info on it.
It sounds like you are going through a really tough time! I have been there. Trust me. I "get it" more than I could possibly sum up here!
Your spirit sounds tired. It can be revived. Just be patient with yourself. Rest, rest, rest...
We all reach the "enough" point. Be patient and get any help you need or can access during this difficult time. Support matters!!!
Your comment that really got my attention was this:
"I honestly doubt that I would do anything 'stupid' "
This is alarming. I urge you to tell your PCP (or therapist if you do have one) that such thoughts have even fleeted through your mind. Seriously.
I don't know what type of doctor you already discussed this with but I am concerned that you need more support from your health care professionals.
I know you didn't ask me my opinion... but I think you need to push back to your doctor(s) and emphasize just how serious things have gotten. They need to know.
I find strength in simple things (free things) like meditation and relaxing music. Seriously. You'd be amazed how much this can help!
Some people find strength in religion.
Whatever has helped you weather storms in the past is fair game.
You are in my prayers. I hope you see this since I can't get to your blog. I hope something in here helps!!!
Jeanne
P.S. If you do have fibro (as your site name seems to imply), I have LOTS of ideas for fibro resources for you, fibro info. LOTS! Feel free to visit my blog. This month is obsessed with Endometriosis Awareness Month but if you look at older posts, I've done plenty on fibro. This is been a BRUTAL year for my fibro and Reynaud's Disease with the cold! Hang in there!! [Hey Shauna, let me know if she does see this, please]...
Carleen,
ReplyDeleteHoney, I didn't know about the 'drop attack' with Chiari!! I suddenly do not feel so alone in cleaning up my messes!!!You have, always, such a great attitude, lots of humor in and with your writings about such an unreal diagnosis to live with. It is those, like you, here on our 'weblogs' that keep me going!! '
Thanks for a darling comment and yes, I dropped 2 things today, but no clean ups!!! Whoooohoooooo!! (They were outside!) lol
Hugs!!!
Jeanne,
So glad to hear the petition has reached 300! with your never-ending hard work on this issue, you are sure to pick up some influential people...I just feel it.
Thanks for your sweet comments about the post. Just typing one, (or typing anything), is really tough and I am now a HEAVY user of spell-checkers!!! LOL
Hugs honey, hope you are doing good, yes, do anything you need to, to lessen your 'blog-workload'. It just isn't worth it honey to deplete your energy just to try and answer emails. I haven't even been able to LOOK at mine lately, knowing there's no way I cn type the responses. And anyone with a heart should know that from reading my latest posts.
Stay well, my special friend....
I know you'll blog when you're able to and just wanted to send you good wishes!! Miss you and hope you're doing well!
ReplyDeleteHi Shauna;
ReplyDeleteIt is good to learn that your paralysis is improving. That was scary for me to read. I know that you will do what you need to do to regain your strength and the use of your hand.
This past March was one of the worst months I have had to live through. I know that March is the worst month for people who seasonal depression affects. Nevertheless, this one seemed particularly sever. It was not just depression; it was an increase in the pain level. Although I would prefer that other not have to suffer like this, it was comforting to read that I was not alone.
Thank you for your always open and personal blog. Your willingness to share your struggles and your successes is why your blog helps so many readers.
There is never a need for you to apologize for the frequency of your post. You are chronically ill. Whenever you post, we are blessed!
Be well
An inspiring post...sometimes when the pain is excruciating we just have to push on because there is no other choice!! I found this so inspiring I've shared it with my RSD/CRPS friends on fb:
ReplyDeletehttp://www.facebook.com/topic.php?topic=8869&post=33829&uid=50278818557#post33829
Wishing you relief and thanking you for the hope xoxo
Hey there Caf!!!
ReplyDeleteThanks so much and so glad that you found this post inspiring.
You know I haven't been posting at all lately, my hand is just too much to deal with and the typing ability has just come back! whoooowhooooo!
Glad you wanted to share it hun....I'll try and make some 'rounds' today....
Gentle hugs <3