Sep 30, 2009
Please, tell me how to make this into something more useful.
Health Page Draft on Acceptance for MedHelp MS Forum
A little over a week ago, our PatHC began a thread titled simply, “Acceptance.” Her request for advice opened such a wellspring of wisdom from so many members that rendean suggested it become a Health Page, aiming to capture the essence of the many wonderful replies for those who might need such a resource in days ahead. This is my attempt at editing what I felt was the most useful, remarkable, or just plain touching advice into something that might be all of the above for someone in the future. I’ve deliberately refrained from correcting typos, spelling, etc., hoping to include a clear picture of the many challenges faced by so many of us.
My prayer is that it is never again necessary for anyone to have to learn to accept MS or anything that resembles it. My experience tells me that the complete fulfillment of that prayer is yet a bit in the future.
I’ll open with PatHC’s question:
I have been thinking about acceptance a lot recently and especially since I now have an opportunity to own a scooter that is light weight and would be there to save my energy (or when I haven’t got the energy) for the walk to the ladies, back to the car or other routine journeys at work. It could also be for personal use too.
My reaction to this offer was “absolutely no way” (or words to that effect and unrepeatable here). The retort was that is the usual way that MSer’s react but after a time you begin to see the sense in saving energy for the things you want to do instead of using it on things which are mundane. I still kept seeing this as a giving in and not fighting this thing.
My question is not about the scooter but about acceptance of a new state of affairs and grief for what you once were. Does anyone want to offer me any advice? as this has been filling my mind since I received a copy of the neuropsychologist report which said ‘this lady is sad most of the time’.
God bless her, Lulu54 was the first to reply; she and Pat had this exchange:
Gee Pat, you should count yourself fortunate if only "sad" is your state of mind.... I include angry, frustrated, confused, depressed and discombobulated along with sad in my personal assessment! :-)
Well shoot, why wouldn't we be sad? There is plenty here to make us feel that way and so much more. I think what we have to do is figure out how to work through the emotions and find a place where we can be emotionally comfortable.
I've been grappling with this as well, because my neuro has identified me as needing therapy and drugs - I told him I would consider both and we would revisit it in a few months. Then I relented and called and told them to send the prescription. So I am now on wellbutrin (only one week so far) and we'll see how that works.
Coming back to work I have reached another decision, much like you are wrestling with on the scooter idea. I am going to ask the doctor on my next visit for the rx for a handicapped placard for my car. It just makes sense to me to save my energy where I can to use it in other places. It seems like a horrible admission of failure at first. but I now see it is as a wise use of my limited resources. I won't use it every day, but will keep it handy in case the need arises.
I don't think there is any advice in what I have just written - just a lot of commiseration. You know you're not alone in grappling with these issues.
I know what you mean and I too have all the feelings that you describe but it just made me feel so rotten to be described in that way.
If you saw my post from last week you will know that I received my disabled badge for my car last week and I used it for the first time last weekend to visit a friend who is only 44 and has just had a stroke. He is ok and recovering but it made me think maybe I shouldn't be so upset all time. The badge saved me walking so far as my legs hurt all the time these days.
The physio who assessed me for my parking permit just said everyone with your condition should get one automatically and that also scared me as it made me think OMG this is so real and so serious.
So I just wanted to know if anyone ever comes to just accept it?
Accept it? probably never.
Pretend its not there sometimes? as often as we can!
A few posts later, HVAC (aka Alex, one of the many bright stars in this forum) shared these deeply personal experiences and observations:
I have had a lot of practice with acceptance. I have learned that accepting something and liking it our two different things. I find it is too tiring and drains energy in not accepting things.
I have two thing written on my fridge
It is not what happens to you in life. It is what you do about it.
True contentment comes when you play the hand you are dealt.
I have had double vision my whole life. I had to accept this. The world is a scary place when you have little depth perception. I could not read, play sports, and driving I have my tricks. No one explained any of it until I was an adult. I had to accept it and do things even if I was scared. I did construction and climbed three stories all the time.
I have had Bipolar disorder for most of my life. I did not want to be different or labeled crazy. I did not want to have to see Doctors and take drugs to balance out my brain chemistry. I thought I could will it away. It has taken over 50 Doctors and every drug imaginable to get the right combination. It has taken me years to realize fighting depression just makes it worse. When I am depressed I acknowledge and accept it.
Twenty- eight years ago when I was eighteen I had to accept I was an alcoholic and not drink. I have to still take it one day at a time.
Then I had to accept I had asthma and have to take all these medicines everyday. Some days I do not want to and I get into trouble breathing.
Then I found out I was deaf in both ears. I had one fixed. I have to accept I do not hear everything people say and sometimes have to ask them to repeat things several times.
Next I accepted I had migraine headaches all the time and not much can be done.
I also have two blown discs and two blown knees which made me give up my HVAC career. I have treated none because I can not afford to. I accept the pain and do my best.
Finally MS and its challenges had to be accepted.
I basically I have all these obstacles to life no one can see but me.
I never accept anything easily but when I do I realize how much needed energy I wasted trying to control something I have no control over.
A scooter is not who you are its an aid. If something makes your life easier use it.
We as humans have to mourn things we lose. It is normal. That is how we are wired.
I am not a wildly happy person. I have learned to do the best I can. Even my Psychiatrist is shocked when I tell him how low I get because I smile and act calm no matter how scared or depressed I am.
I worked Veterinary for many years. When they had to amputate a dog's leg they would cover his run with quilts. As soon as the dog awakened it would start to get up. It always amazed me how it would fall and get back up over and over until it learned its new balance. The dog did not have his self esteem tied up in having four legs.
Once it got the hang of walking on three legs it would go all over wagging its tail.
Mourn this new stage, find your balance, and go where ever you want with your Scooter. If people look they are jealous they do not have a cool scooter.
Take care and be kind to yourself
Much to think about there. Many of us did, and here are snippets from some of the replies. First, from PatHC:
That is one of the most humbling posts I have ever received you are a truly beautiful person. I know that you are right and I know what I have to do maybe it is silly pride getting in the way then of the acceptance? of just plain selfishness? either way I had hoped someone would make me feel that I just needed to get on with it and you certainly did that.
Thank you so much mine is a small burden in comparison.
Then this, from essdipity:
I agree with Pat that your post humbles me. Your own humility in the face of adversity is stunning, yet you are so incredibly strong. You do know the difference between what can be changed and what can't, and you are so wise to focus on the doable. You have learned more about life than most people ever do.
And now for something not so serious ;o)
My friend has a refrigerator magnet that says
Sometimes you have to look reality in the eye and deny it!
Boy, do I agree.
There were others; I’m trying to save space (and keystrokes; I’ve thought for several years that I’m developing arthritis, or something like it, in several of my typing joints).
I was really blown away by this post from supermum_ms (JJ), giving us, I think, a peek into how she earned the name:
I am surrounded by family living with anxiety and or depression (Mother, husband and both children), I have spent a lot of years trying to understand and help if I can. There are a few things i have worked out living the life i have and that is, you absolutely have the right to feel right royally Peed Off, its not bl##dy fare and it is scary when your hit with something you never got a say in. You are courageous and take on this battle every day, accepting what you cant change takes courage, fighting to make the changes is no easy feat but YOU are doing it.
The other thing i've noticed is sadness appears to be contagious with the opposite, happiness being contagious too. I dont know if anyone else has noticed the sadness hitting the forum lately, we feel connected to others fighting what we fight, when they get blue we feel a ripple of their emotion, we are human and its natural to feel for others. Feeling exstatic and happy when something good happens to someone else is emotionaly empowering, we need to hear these good experiences to give us hope and courage to keep fighting the fight. You might think getting your sticker was nothing much but you made my day, i could feel how good you felt getting that one small concession, you made me happy knowing you were happy. I hope i'm making some sense because i want to give you a feel good moment of mine, hoping you feel my happiness.
My daughter hasn't had a very easy life, it been a battle and there never has been an easy day. From the age of 10, she's given me the impression that she hated me for giving her the life she has had to live, I was the enemy and i've felt guilty for everything she had to battle. She also has Asperger Syndrome (a form of autism) so understanding and expressing emotion has been hard for her but last week she let me know just what she thought of me. She was talking to her little brother who had just told me to shut the F up, she pulled him aside and said "we are lucky to have her for our mum. With out her fighting for us and doing everything that she has, we would never have got to where we are now. You should be greatful for the person she is, there is no one else like her, she would give up her life for us, there is no one else in this world who will ever love you and support you like she does, do not ever disrespect her like that again or you will answer to me." She then sat down and told me how thankful she was that i never gave up on her, even when she was so destructive and hateful, she thanked me for being her mum, then she told me to fight 'it' like i fight for them because she still needed me.
Isn't she wonderful, she makes me proud and she continues to be my insperation to get up off the floor when things get tough. I hope you feel my happiness!!!!!!!
Pat brought us back to earth a few posts later, reminding us of the reality that so many of us and our loved ones face every day, and for most, every hour.
Everyone here is inspiring, the support I have received since joining this forum has been empowering. I know that this 'thing' makes us feel like we are riding a roller coaster every day. Since finding this forum you have all sustained me through to finding a dx and beyind and you are all beautiful.
I do understand that there are people much worse off than me and we do need to reach out and feel each others happiness and pain.
I know I will end up riding the scooter as walking is such a painful and difficult process but at least I can manage some walking which is more than others can do.
My family are supportive although my youngest son is very 'difficult' at the moment and I am trying to help him, but as my fourth child I should be used to it. Udkas I also have wonderful moments with family too and they are precious, thank you for sharing I can feel your happiness.
Over my 20 year history with this I have been through some very black times and we are becoming aware that depression is one of my sx, I am more than a little afraid that this sadness is leading me there again as it has happened before and I really don't want to go back there again. Although in the past I have tried to hide my (sometimes suicidal) depression from my doctors as my old GPs labelled me as neurotic, maybe now that I am dx I can get help with it.
I am also concerned this maybe the start of another relapse since this is how my major relapse a year ago started and there are other sx happening to. Including a lot of head anf face pain which I am finding difficult to deal with.
Anyway enough of my moaning I have been inpiired by all of you and can see now that this rollercoaster just doesn't have an end so I am glad you are all on here with me.
It is right that you can feel all of the emotions through this screen.
Be well everone and thank you all once more.
Michelleric then sharpened our focus on Pat’s original question.
I too am struggling with acceptance these days.
I am "trying" to figure out the reasons of WHY many things have happened to us this year, and really need to stop that. Doesn't do any good. I am trying to focus on all the good I have in my life, but I have to tell you, for me it isn't too easy most times.
It is a bit like the stages of grief, by Elizabeth Kubler Ross. Acceptance is the last one, and I hope and pray we will all reach it.
Hugs to you,
I began the responses here, but I was far from the only one.
Michelle, you are absolutely right about the WHY questions and our (hopefully) eventual acceptance of things being very similar to the stages of grief. In fact, we DO grieve the loss of our former abilities, our former independence (real, imagined; usually a little of each), and the more positive self image we each carried before we were afflicted with whatever it is that we have today.
In my experience, the adversities through which we each go in life have a profound effect on our character, and our character has a profound impact on the way we handle adversities.
We are like uncut gemstones, rough around the edges, and not particularly attractive to anyone except the most perceptive, any who can see what we could become in the right hands. God uses life's trials to shape us, knocking off our most obtuse corners, and grinding the roughness off of all the others, before sanding and buffing every surface, to bring out the natural beauty and enhance our lustre. Only He knows fully what we can become, but we should each remember that He isn't finished with us yet.
Accept this: that you have a purpose not yet fully accomplished. The struggles through which you presently journey can make you bitter, or better.
I try to be a “big picture” person, so my thoughts didn’t really “zoom in” the way those of others seemed to do, but we were quickly brought back to the real question, as Weakandfalling followed with this very practical post:
I'm pressed for time now, but will say that it seems very natural to mourn what we have lost. You're entitled! Still, one way to possibly feel better is to list what you value that you can still do. Make a list of those things you can do that are important to you. Most MSers aren't blind, can still move their limbs, can still savor the taste of food, can still talk, do not have their lives significantly shortened, etc. unlike many unfortunate people with other medical conditions. But still, we do have significant losses and it is quite alright to regret them and to keep the hope that one day we will find the way to get back to normal. But in the meantime, lets focus on what we can do to maximize the abilities and the energy we have left.
I suggest reading two books written by Judith Lynn Nichols: Women Living with Multiple Sclerosis (the first book) and then "Living Beyond Multiple Sclerosis." They consist of dialogues between MSers about all different MS experiences. I found those books comforting. Another book I liked was "MS and Your Feelings" by Allison Shadday who has MS. I think it's important to have reading material like the above on hand whenever you need to just kick back and be comforted whenever.
I tried a scooter the other day and loved it! I had fun zipping around the store. On a scooter we can do MORE than other people. We can go faster for longer than they can!! I loved it! Keep in mind, insurance companies may only pay for one such vehicle - i.e. it may be better to pay out of pocket for a relatively inexpensive scooter if it is felt that in the future a more expensive heavier-duty power chair may be required.
In Pat’s follow-up, I think we see a hint of the degree to which this simple peer-to-peer forum can provide a pathway to growth, and yes, to acceptance.
Wise words Michelle and Pastor Dan, it does feel like a form of grief. At the moment all I see are the things I can't do rather than the things I can. I do hope it will make me better in the long term and not bitter since at the moment it feels like the latter. Everything I do seems to remind me of what I was and what I am now.
I used to enjoy so many things and they all required me to balance, see and walk, most of those things are now compromised and although I can still do some of them, these require careful planning beforehand.
WAF - the scooter is being bought by am organization called Access 2 Work, my company pays some and the government pay the rest. It is there as they figure it is cheaper to keep me at work than replace me and my experience.
I have read the book Women Living with MS our dear Jane (Jed9999) is one of the contributors to that book. It is inspiring and I must get it out again. I have not read the other one though and will take a look.
I read so much about MS and many of the stories are inspiring, I guess we just have to find our own way through all of this. The unpredictability is probably one of the most difficult aspects to come to terms with.
Of one thing I am sure though that this illness has made me see others and the world in a very different way and often for better.
Bless you all.
Shoshin then shared this wisdom:
I don't think I can add much to all the eloquent replies that you've already received, but it often seems to me that the thing that makes it hardest to accept the ravages of MS is that it just keeps going. It seems like as soon as I get used to one thing and make some sort of truce with it, another thing comes along to mess up my world.
There has been some research that suggests that people have a happiness setpoint (sort of like they talk about a weight setpoint). Not that it is impossible to reset and it is only very partially determined by external circumstances, but they have found that the effects of even major external changes are not lasting. The happiness levels of both people who won a lot of money in the lottery and people who were paralyzed from a spinal injury temporarily experienced a dramatic change. But after a year, they were both more or less back at their baseline. The thing with MS is that it's a moving target so I don't know if you can ever really come to acceptance and go back to baseline.
I read a couple of autobiographical books about people with MS who experienced drastic physical limitations due to the disease. Both of them describe this experience of recursively struggling with new limitations and coming to some peace with them. They both said that over time they were able to adapt to things that in the beginning they couldn't even bear to contemplate and thought they could never take. One of them actually seemed to think this gradual stepwise approach was easier than sudden dramatic disability. Both of the books were testimonies to the power of the human spirit in the face of difficult situations and loss. All of us have to find that place of strength in ourselves somehow.
Also, here is a really good blog post on this topic:
I hope you are able to use the scooter to your benefit.
WAF began a series of follow-up posts from others who had weighed in, but been inspired by subsequent input from the rest of the forum family:
I think its great your company and govt. are paying for the scooter!! It'll save you some energy for the things you want to do after work!!
It sounds like you are cheering up!! Thanks for sharing that one of the contributors here was in one of the books by Judith Nichols.
If you haven't read the book "MS and Your Feelings" by Allison Shadday I heartily recommend it!! Last night I was reading one of her chapters about mourning the losses brought by MS: I thought of you and how much you would benefit from that chapter!! I keep all three books close at hand in my bedroom - like MS friends waiting to chat. No telling what time of day I will need to read about an MS issue I am experiencing. It really helps to go to those books and see that whatever you are going through - whether it's difficulty getting diagnosed, trouble with a doctor, or with a symptom - others have also experienced. I really identify with Tara in Judith Nichols' books.
The thing I miss the most is my energy and my ability to get lots of things done. Now I get very little done and it is frustrating!! But I accept it (most of the time). On the days I can't accept it, I take Provigil.
I realized the hardest thing for me to accept is the drain health care is on our finances and that it just is the way it is.
In 2001 my husband was laid off with no severance. We lost our retirement because it was a company stock which went in the toilet. My husband worked opening a gym for two years until being hired by the state which was a considerable reduction in pay from his corporate salary. We had no insurance for two years because we could not afford both Cobra and the Mortgage. We had just climbed out of the hole when I was diagnosed and a month later our health insurance changed and all the out of pocket costs doubled. I have rationed my health care for years, but there are things I can't just not treat.
This week I came to terms with my guilt about the financial side of illness which I have carried for two years. I was thinking unilaterally of what would be best for our future financial situation. I then realized there are two of us in the marriage and it was not about the money. I did not see my husband cares about me not the money.
I had to accept the medical costs are beyond my control. I used to look at health care as a luxury, but for me it is now a necessity.
Thanks for getting me thinking and over one more hurdle which had me stuck in the worst depression imaginable.
Of course, yours truly had to pipe in again:
I worry about similar issues, as I am taking on a new phase in which I will feel not merely responsible to carry my share of the financial load, but also to set a good example for a growing boy who desperately needs a role model other than his father. Nancy loves me, and of course, she says it's not about the money, but she's a planner, so she's wondering if she should be doing without some things in case I get sicker in the future and can't provide income at all, or have greater expenses associated with my health care. That just makes me worry about burdening her and her son with my health problems. I am trying to teach myself to sing "Que Sera, Sera," but then I feel like I'm not being responsible enough... Yet, I really dont want to be responsible most days; I want to run and hide -- but I've learned that there really is nowhere to run, no place to hide.
One thing I have seen in life is this: it will change. No matter what we do, something in our plan will seem so out of place when we see it in our rearview mirror. Every day we face new things, and this is the way God planned it. What an adventure, huh? It really is amazing.
PatHC, after six days of exchange among so many, brought the thread she’d opened to a beautiful summary:
That is sooooo true, especially the bit about not wanting to be responsible and having no where to hide.
I only complained the other day that it would be so nice to just put this burden down if only for a few hours.
I guess what I have learned from everyone who has replied is that acceptance is something that we all do in our own way and that often it is just accepting one small thing at a time that gets us there.
The main problem with MS is just as you accept something either it disappears or something else happens or BOTH.
I still feel very sad each time I try to walk anywhere and find that after only a few hundred yards I hurt too much to carry on but then there is still hope that one day it may get better and some can't walk at all so I should be grateful..
It is still hard to accept when you have been told that if I had been dx'd at the time I may have had treatment that would have helped and now the inflammation has already done the damage - that makes me think that it was sheer neglect by the medics that caused my situation, especially with a 20 year history. But then it may have happened even with treatment eh?
So I will try to carry on accepting each bit at a time but forgive me for now if in spite of all the humbling comments from you wonderful people I still keep crying and having my own pity party !!
Sorry guys but I'm still very down about the walking.
((((hugs))) to all