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Reality of MS Sinking In
Two days before Christmas I read in our Uk papers that a 42 year old man with MS had gone to Dignitas in Switzerland to commit suicide "legally" . This is the second case that I have read this year where someone with MS has been to Dignitas and it sent a cold chill down my back as I wondered how bad is it going to ge?
So I am the greatest advocate for saying that none of us know our own journey and how our illness will progress and that it is best not to waste time worrying about what we do not and know and no-one can predict. However....I have not had a great Christmas health wise and think I have had a mild relapse. I had bad IBS for four weeks and a constant headache and that overwhelming fatigue that all of you will understand. Being unwell and relapsing is a strong reminder that the remitting phase is just that..a welcome break but not a long term release.
So where am I going with this post....I think that I put my positive coat of armour down for a minute when I read about that man taking his ownlife and allowed myself to feel what is going on in my body and I touched on my inner fear of what may be ahead. I also felt some anger and resentment that I do not want this wretched illness and that things will never be the same again. I cannot change this and know that all I can do is pick up my shield, sword and body armour and fight again. I kind of feel that I started this year not quite on the positive note that I intended but it was only a momentary blip.
I am aware that last year I tended to answer posts on the forum, rather than share what I am feeling and this is my way of coping..I fully admit that I like to help people. So I thought I would start the New Year doing something different by sharing a little bit of the more fragile side of me as I begin to accept and face the enormity of what a diagnosis of MS means.
Love Sarah
So I am the greatest advocate for saying that none of us know our own journey and how our illness will progress and that it is best not to waste time worrying about what we do not and know and no-one can predict. However....I have not had a great Christmas health wise and think I have had a mild relapse. I had bad IBS for four weeks and a constant headache and that overwhelming fatigue that all of you will understand. Being unwell and relapsing is a strong reminder that the remitting phase is just that..a welcome break but not a long term release.
So where am I going with this post....I think that I put my positive coat of armour down for a minute when I read about that man taking his ownlife and allowed myself to feel what is going on in my body and I touched on my inner fear of what may be ahead. I also felt some anger and resentment that I do not want this wretched illness and that things will never be the same again. I cannot change this and know that all I can do is pick up my shield, sword and body armour and fight again. I kind of feel that I started this year not quite on the positive note that I intended but it was only a momentary blip.
I am aware that last year I tended to answer posts on the forum, rather than share what I am feeling and this is my way of coping..I fully admit that I like to help people. So I thought I would start the New Year doing something different by sharing a little bit of the more fragile side of me as I begin to accept and face the enormity of what a diagnosis of MS means.
Love Sarah
Your heart-felt experiences are something we all have crossed paths with at one point or another. This MSerable disease does sink in after awhile no matter how we try to be positive. I used to be very positive and forward thinking. Having a disability since birth was somethign that I thoguth would help me cope better when I got the diagnosis of MS, but it didn't make a difference. I guess not knowing how things will turn out for us is difficult to imagine and then hearing or reading stories like the one you mentioned makes it even more difficult.
For me, I have faced this demon you are speaking of many times. The only way I've been able to put this in perspective so that I don't worry myself is to prepare for what could happen. I have a plan in place and have been building a foundation of support now, before anything more happens.
I'll still get sad when I hear stories about those who can't take it anymore and it will bring up those deep feelings in me too, but I have made a decision that the least I can do is to make sure I have a support system in place and when I can't cope anymore someone else can come into the picture and help me through it.
Your feelings are real and we can all relate and it is very good that you can express them. Sometimes just expressing them can help you and even help others who read it.
We are all in this together, aren't we.
Hugs and big thanks for sharing your thoughts.
Julie
For me, I have faced this demon you are speaking of many times. The only way I've been able to put this in perspective so that I don't worry myself is to prepare for what could happen. I have a plan in place and have been building a foundation of support now, before anything more happens.
I'll still get sad when I hear stories about those who can't take it anymore and it will bring up those deep feelings in me too, but I have made a decision that the least I can do is to make sure I have a support system in place and when I can't cope anymore someone else can come into the picture and help me through it.
Your feelings are real and we can all relate and it is very good that you can express them. Sometimes just expressing them can help you and even help others who read it.
We are all in this together, aren't we.
Hugs and big thanks for sharing your thoughts.
Julie
I am usually upbeat about my MS but I am facing the real possibility that I will need to drop my MS Specialist this year. I have to spend $200 dollars copay I do not have for a 15 minute check in with a PA because my MS Specialist canceled my six month follow up and is booked for a year. The cost is too high now and an article in the paper echoed my worst fears they are going after the State Worker's Health Plan without mercy in 2011. I will go back to only using a Primary Care no Specialists what so ever. No ER, No Hospital, and no Urgent Care. The problem is there are so few MS Specialists that once you are out you can't get back in.
Some dumb lady sent me a chain e-mail New Year's Eve about how we have to protect our medicare and medicaid from these people who want to take it from us. This lady has two kids getting disabilty I can't get and I have been disabled since the age of 2 1/2.
I Wrote: I have MS. I am the person you are protecting your Medicare from. It is impossible for me to get any government assistance. I can afford my MS Health care may be another year. Then what should I do? If our country does not do something soon 40 somethings like me won't make it until we are Medicare eligible. I guess that is fair.
I often think I would do my husband a favor going to Switzerland. This disease drains all of our families finances. I kinda jokingly said that today he could have a secure future with out me. He did not think it was funny.
I am going to live a long life. I guess something has to give and if it is my health care so be it. I went with out health care all together for two years. At least I have a great PCP who loads me up with as many samples as possible.
Oh well that is my rant. Back to happy Face.
Remember the old joke. "Other than that Mrs. Abraham Lincoln what did you think of the Play?"
Some dumb lady sent me a chain e-mail New Year's Eve about how we have to protect our medicare and medicaid from these people who want to take it from us. This lady has two kids getting disabilty I can't get and I have been disabled since the age of 2 1/2.
I Wrote: I have MS. I am the person you are protecting your Medicare from. It is impossible for me to get any government assistance. I can afford my MS Health care may be another year. Then what should I do? If our country does not do something soon 40 somethings like me won't make it until we are Medicare eligible. I guess that is fair.
I often think I would do my husband a favor going to Switzerland. This disease drains all of our families finances. I kinda jokingly said that today he could have a secure future with out me. He did not think it was funny.
I am going to live a long life. I guess something has to give and if it is my health care so be it. I went with out health care all together for two years. At least I have a great PCP who loads me up with as many samples as possible.
Oh well that is my rant. Back to happy Face.
Remember the old joke. "Other than that Mrs. Abraham Lincoln what did you think of the Play?"
Sarah,
Your post had me searching for more information on this young man and his decision to end his life. From what I read he had done his research and saw the path his MS was taking him and wished only to control his own destiny rather than rely on others to make decisions for him.
Even though we might disagree with his decision to end his life, I doubt anyone here wants to relinquish control of our lives to anyone else. This is so complicated and evokes strong emotions from both sides of the argument.
Being able to contemplate his story and how it relates to our own health is an important mental activity, even though our decision may be different than his. Thanks for bringing up this important topic.
This leaves me wondering if the UK has living wills and advanced directives like we have here in the US? Not that these legal instruments make a difference to our care during the time we might have until we hit end of life decisions.
Andrew Colgan, rest in peace.
Lu
Your post had me searching for more information on this young man and his decision to end his life. From what I read he had done his research and saw the path his MS was taking him and wished only to control his own destiny rather than rely on others to make decisions for him.
Even though we might disagree with his decision to end his life, I doubt anyone here wants to relinquish control of our lives to anyone else. This is so complicated and evokes strong emotions from both sides of the argument.
Being able to contemplate his story and how it relates to our own health is an important mental activity, even though our decision may be different than his. Thanks for bringing up this important topic.
This leaves me wondering if the UK has living wills and advanced directives like we have here in the US? Not that these legal instruments make a difference to our care during the time we might have until we hit end of life decisions.
Andrew Colgan, rest in peace.
Lu
I can get pretty bad, but having someone or something important makes it so much better. A good neurologist can a major difference too.
Yes here in Uk we have the ability to create living wills and/or health and financial powers of attorneys. I am just in the process of finalizing my own powers of attorney and as the law recently changed it is a much more lengthy process now and requires the power to be registered with the Office of the Public Guardian. It has taken several months to sort mine out with solicitors meetings etc, but I am glad that I have done it and can now leave this for a while..but I do not anticipate needing to change it.
I could respond to your Freudian slip by saying something like...yup I reckon you have a fairly wicked streak in you. I know MS can get pretty bad as it is written on the faces of people when you tell them for the first time who are left speechless and don'tknow hwat to say. All we can hang onto is hope that we will be one of the luckier ones who are not left so disabled in the future..but that is outside our hands. I agree with you that having something important makes it easier and for me this is friends and family. I am fortunate to have an excellent neurologist also.
Julie - thank you for your empathic response and you are so right that it is important to have a good support system in place.
Cheers for now, Sarah xxx
Julie - thank you for your empathic response and you are so right that it is important to have a good support system in place.
Cheers for now, Sarah xxx
I'd like to make the suggestion of anti-depressants for some. Not only are we having to live with MS, we also have to try to face other struggles that we have in life.
None of us really know what our futures hold - in reference to MS or anything else.
Even now, after just being diagnosed since July of this year, I worry about having our 2-story house and whether or not I'm going to be able to continue to make it up our stairs. It's already a struggle. And with the economy, I worry about losing my job and my health insurance, and my prescriptions for MS.
My mom gave up on life and was sick of being sick (cancer & other medical problems). When she "died" at age 51, she only weighed about 58lbs. Towards the end, she always told us that she was sick of her ____ing life.
However, I'm one of those ones, who doesn't really understand those who choose to give up.
None of us really know what our futures hold - in reference to MS or anything else.
Even now, after just being diagnosed since July of this year, I worry about having our 2-story house and whether or not I'm going to be able to continue to make it up our stairs. It's already a struggle. And with the economy, I worry about losing my job and my health insurance, and my prescriptions for MS.
My mom gave up on life and was sick of being sick (cancer & other medical problems). When she "died" at age 51, she only weighed about 58lbs. Towards the end, she always told us that she was sick of her ____ing life.
However, I'm one of those ones, who doesn't really understand those who choose to give up.
You were so kind to me a few days ago. I must say, that when our daughter took her life, it was in the moment of such dark emotional pain, she couldn't see her way through. And as much as we understood the emotional trouble she was having, and had for many years, it is still such a shock, such a troubling way to have to had to let her go. We love her just as much, I'm happy that she is in heaven and is no longer deaf or unhappy, and we just love and miss her and want to hold her. So no matter what happens, as long as a family knows your wishes and knows you love them, perhaps it will ease a tiny minutiae of pain for those left behind. I know we can all fear many things...but at least for today, we can all be here.
LPT
LPT
Dear Sarah,
It was with great interest and empathy that I read your post. I am so sorry that you felt you had let your positive armor down and felt resentment and anger. I can relate very well to these sentiments.
Using your occupational knowledge as a way to deal with your disease is another thing we have in common. As a former nurse paralegal, I know the stages of grieving and am always"fighting" these stages as I know too much per a friend of mine. Her suggestion is just to let nature take it's course and let things happen. I also use my knowledge as an armor to hide behind feelings I am experiencing as I receive positive feelings from helping others as do you.
Unless we work through the anger, resentment, bargaining, etc. how will be ever reach the acceptance phase? Knowing too much can be a double -edged sword and can slow down a natural process. I hope that you will let us help you through the journey just as you have helped so many of us. We appreciate you sharing your knowledge and compassion with us as it has helped so many, including myself.
Ren
It was with great interest and empathy that I read your post. I am so sorry that you felt you had let your positive armor down and felt resentment and anger. I can relate very well to these sentiments.
Using your occupational knowledge as a way to deal with your disease is another thing we have in common. As a former nurse paralegal, I know the stages of grieving and am always"fighting" these stages as I know too much per a friend of mine. Her suggestion is just to let nature take it's course and let things happen. I also use my knowledge as an armor to hide behind feelings I am experiencing as I receive positive feelings from helping others as do you.
Unless we work through the anger, resentment, bargaining, etc. how will be ever reach the acceptance phase? Knowing too much can be a double -edged sword and can slow down a natural process. I hope that you will let us help you through the journey just as you have helped so many of us. We appreciate you sharing your knowledge and compassion with us as it has helped so many, including myself.
Ren
Hi Sarah,
I must admit I felt the same as you on reading that article. I have no Dx as yet, it has been something I have been searching for. It made me think prehaps I am better not knowing.
We have too keep moving forward, down our own path. If I am honesty I'd rather close my eye to this sort of info, which is I guess very self centred of me but that's the survival instinst in me, which I don't think is a bad thing!
Love Twist
I must admit I felt the same as you on reading that article. I have no Dx as yet, it has been something I have been searching for. It made me think prehaps I am better not knowing.
We have too keep moving forward, down our own path. If I am honesty I'd rather close my eye to this sort of info, which is I guess very self centred of me but that's the survival instinst in me, which I don't think is a bad thing!
Love Twist
I just wanted to thank you all for all your lovely kind responses. I am feeling a little better and as I sit in my warm kitchen looking out at the beautiful white snow that fell again overnight, I am glad for the excuse to just stay at home!
I have accepted what happened about the man with MS who went to Dignitas and realise that it touched a much deeper wound inside me. One of my best friends, who is a fellow counsellor has Huntingdons Disease (she is 42). She has already told me that she wll go to Dignitas before she gets too bad and she has been given about 10 years to live. I realise that I had not made the connection with the man with MS and my friend and by sharing this with you I have processed it and put things in the right place. My husband and I are going to see the Northern lights with her and a friend in March and I know this will be a special time.
I have accepted what happened about the man with MS who went to Dignitas and realise that it touched a much deeper wound inside me. One of my best friends, who is a fellow counsellor has Huntingdons Disease (she is 42). She has already told me that she wll go to Dignitas before she gets too bad and she has been given about 10 years to live. I realise that I had not made the connection with the man with MS and my friend and by sharing this with you I have processed it and put things in the right place. My husband and I are going to see the Northern lights with her and a friend in March and I know this will be a special time.
Late chiming in from me as usual.
I just wanted to thank you for sharing the story and how it affected you, and for the extra little bit of yourself that you gave to us. I understand the admitting vulnerabilities somehow leads to our demise thought, I do it myself. But, it can also lead to solutions and much needed help if we are lucky.
((((hugs)))
shell
I just wanted to thank you for sharing the story and how it affected you, and for the extra little bit of yourself that you gave to us. I understand the admitting vulnerabilities somehow leads to our demise thought, I do it myself. But, it can also lead to solutions and much needed help if we are lucky.
((((hugs)))
shell
Sarah, the other point that I neglected to make again is that everyone's MS is different. We can't assume that the worst or the best will happen to us. As Alex talks so often here, we just have to stay in the moment and make the most of this time.
I'm glad you've processed this and have a better understanding of why this hit you so hard. Lulu
I'm glad you've processed this and have a better understanding of why this hit you so hard. Lulu
What I fear the most is "loss of control" and isn't that what MS really is loss of control. So facing the Monster is Facing the Lack of Control. Control is really an illusion. This is what all the great religions and philosophies teach once you give up the control you are free because you never really had control in the first place. This is the great lesson those with terminal diseases learn.
This is this whole acceptance thing I am talking about. The thing for me is I am dense and it is not a one time deal I stray from my resolve. It is like a tetter/totter and I get off balance then realize it and balance again. It will be a perpetual dance hopefully I will realize more quickly and save myself pain.
I get depressed but I think life is really too short in the scheme of things. I am much more than the sum of my functioning bodily parts. I have had one of the most trauma filled and best lives imaginable but the one thing I have in abundance is hope.
I love Hamlet's To be or Not To be. "The Strains ands Arrows of Outrageous Fortune and the Thousand Natural Shocks that Flesh is Heir to" kinda sounds like MS doesn't it? Life isn't fair and it isn't predictable the lesson every adolescent has to learn.
Who knows when the life changing discovery is going to come. I for one want to be there.
When my legs no longer work I can read, when I can't do that there is other media. We are living in the best time for handicaps. Look at the technology. We are communicating all over the world! Yes this disease is hard but it could be worse. There is more for me to learn than I could possibly in a lifetime I find that exciting.
Alex
1. Denial—"I feel fine."; "This can't be happening, not to me."
2. Anger—"Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"
3. Bargaining—"Just let have a few more years to play with my children."; "I'll do anything for a few more years."; "I will give my life savings if..."
4. Depression—"I'm so sad, why bother with anything?"; "I'm going to be in a wheelchair. What's the point?"; "I miss my "healthy old self", why go on?"
5. Acceptance—"It's going to be okay."; "I can't fight it, I may as well "learn to live with it"
I our case, it isn't DEATH, it's MS. We can't see the end to our struggle.
Adapted from the Kübler-Ross model, "On Death and Dying" 1969.
Bob
2. Anger—"Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"
3. Bargaining—"Just let have a few more years to play with my children."; "I'll do anything for a few more years."; "I will give my life savings if..."
4. Depression—"I'm so sad, why bother with anything?"; "I'm going to be in a wheelchair. What's the point?"; "I miss my "healthy old self", why go on?"
5. Acceptance—"It's going to be okay."; "I can't fight it, I may as well "learn to live with it"
I our case, it isn't DEATH, it's MS. We can't see the end to our struggle.
Adapted from the Kübler-Ross model, "On Death and Dying" 1969.
Bob
One thing that kind of helped me with this was reading autobiographical works by a couple people who were profoundly affected by MS. They both found that when they eventually reached their lines in the sand, they were able to find the inner strength to adapt to their new reality,
sho
sho
This might sound silly, but I have an MS role model - and that is Annette Funicello. As seriously as she is effected by the MS, she still has a joyous spirit and is loving and kind...along with having a deep faith in God. She has totally met MS with dignity and grace
Someone told me last year that my having MS has opened doors for me to show God's love to other people I meet like at the dr.'s office, hospital, etc. The thing that has really helped me is the realization that even though I was surprised when I received the dx of MS, God wasn't. I tell my husband who is quite ill, alot of how we face problems, illnesses, etc. depends alot on the spin we put on things. We can choose to take the "woe is me" attitude, or the attitude of, "this is a challenge...and life is an adventure." That might sound rather simplistic, but it works for me. It also tremendously helps me that if I need to have a bit of "woe is me" I know I can do it here because it's a safe place to share the difficulties. I thank God for this group.
As far as the young man from the UK, there may be alot more to the story. Such as perhaps his girlfriend decided she didn't want to deal with his illness, etc. Maybe he needed a group like this, and an antidepressant.
My prayer/hope is that I can handle the MS with as much grace and dignity as Annette Funicello has.
Someone told me last year that my having MS has opened doors for me to show God's love to other people I meet like at the dr.'s office, hospital, etc. The thing that has really helped me is the realization that even though I was surprised when I received the dx of MS, God wasn't. I tell my husband who is quite ill, alot of how we face problems, illnesses, etc. depends alot on the spin we put on things. We can choose to take the "woe is me" attitude, or the attitude of, "this is a challenge...and life is an adventure." That might sound rather simplistic, but it works for me. It also tremendously helps me that if I need to have a bit of "woe is me" I know I can do it here because it's a safe place to share the difficulties. I thank God for this group.
As far as the young man from the UK, there may be alot more to the story. Such as perhaps his girlfriend decided she didn't want to deal with his illness, etc. Maybe he needed a group like this, and an antidepressant.
My prayer/hope is that I can handle the MS with as much grace and dignity as Annette Funicello has.
Alex,
Well put! I couldn't follow patterns for crochet any longer, my hands don't cooperate, but I've learned how to do simple sewing projects. They might take longer, and I may have to read the directions many times, but when I'm done? Wow. I also made my first knotted quilt. So, I'm with you...and my thought is, "As long as I can think, even if I can't walk, speak, etc., I can pray for others."
Well put! I couldn't follow patterns for crochet any longer, my hands don't cooperate, but I've learned how to do simple sewing projects. They might take longer, and I may have to read the directions many times, but when I'm done? Wow. I also made my first knotted quilt. So, I'm with you...and my thought is, "As long as I can think, even if I can't walk, speak, etc., I can pray for others."
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I am so sorry to hear how you have been feeling physically and also how this 'assisted suicide' has impacted you so immensely. It sounds like you had a really rough Christmas with all of this. Times of sickness and pain take such a toll on us emotionally---it makes life so hard.
You give to all of us here all the time and never ask for anything, I am glad that you are sharing your vulnerability with us and that you can express your fears so well. Like you said, it is a choice that this man made for himself---he had drawn a line in the sand and had decided that he wasn't willing to live in a more disabled manner.
I guess my hope for you is that you will allow us to care for you and hold you up when you need us. We want to give back to you! I don't want you to be sick and to feel so badly, just please reach out to us like you did today!
You are a very special woman and such an asset to our community. You are so loved!
((((Hugs)))) XXX
Red