This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear all,

I would like to hear from others about how they cope with the losses and uncertainty related to this disease. I was dx two years ago with RR at 39. Completely out of the blue. Walking is now not great and my hobbies have all been lost (running, scuba diving, tennis). I like, all with this disease, have to deal with changing symptoms / daily embarassments etc etc.

In the two years, I feel I have lost everything I have worked for. In addition to losing the hobbies are the friends that went with the hobbies - who now call to find out "how I am".

My MS nurse came to the house today and said that my anger had not changed since she saw me 18 months ago. It's true. She is suggesting that I try an anti-depressant for six months and try some counselling.

I don't drive anymore because my feet feel dead. She suggested that I get a car with hand controls. She seemed quite shocked when I ran through my view on life (or my future). I'm quite adamant that I will not ever go in a wheelchair. She asked about my swallowing - which is fine - but I told her that I would not go down the road - if it ever came to it - of being fed through a different route. I feel the same way about cognitive impairment - I could not, and would, not live with this.

I set out what I wanted from life - just to be normal. Nothing more. I want to be like all my other friends and fathers at my young childrens' schools. I do not want to be disabled - nothing about disabled people, it's just not for me.

The feedback I got was "live for today don't think about the future" - but that's just not me. "You don't need to play with children - read them a book". Again, this is just not me - I want to do the things with my children that my father did with me. I want to have a retirement after working hard. I want my children to be proud of me. I find that everyone without the disease is very brave - but the losses and uncertainty kill me every day (and every second of every day).

I told the MS nurse that I want to be well again - I don't want to be ill for the rest of my life. She said I would just have to learn to accept it and to adjust to it. But I just cannot seem to do this.

MS now dominates my like - injections three times a week, amitryptaline (sp?) every night, physio on a Friday morning, neuro appointments, blood tests because I am on an interferon, Serono calling about delivery of the Rebif, waiting in for the delivery. Now I look like adding anti-depressants and counselling.

Of course I know that better treatments are around the corner and we have a more hopeful future, and that some have had the disease for 10,20 and 30 years. But I want my life back and grieve every day. The neuro who diagnosed me said it would feel like a bereavement, but I'm still grieving because I died, or at least the old me.

I would like to hear how others cope (as many seem to) or if my experience is unusual. Is it because I'm a 6'2", 220lb male? I just get so angry when I see my 70 year old father mowing my lawn, or when my kids get hold of my cane which I keep with the umbrellas for emergencies. I also have a fundamental issue that I came to the health service once for help and they couldn't help me - in the sense that I want rid of this disease.

Sorry if this is all a bit self-indulgent but the MS nurse spent two hours with me and my wife is getting sick of hearing about it - i.e. my views on the injustice of it all, my view that you only get one life and I get one of the crappiest diseases etc etc. Most of you have to deal with the same fears and challenges as I do and reading between the lines, most cope with it much better than me. How do you really get to grips with the reality that you are likely to be ill for the rest of your life, that the illness will get worse, and that you may not live to the ripe old age that you thought you might (as my evil grandmother did)?

The MS nurse signed off with a positive - that stem cell treatments were just a few years away. I do believe that much better are in the pipeline, but I want them now. Not when my six year old son is 12!

Thanks for reading.

Hi Bromley,

Let me just start by introducing myself. I have been a long time lurker of this site, but decided to finally join after reading your post. I was diagnosed with RR'MS about 6 months ago. I am a 29 yo male. I have probably been dealing with this disease for about 6 years, though like many people here minimized my symptoms as they always resolved completely and fairly quickly. Last year in December though, I could not ignore my symptoms anymore as I was unable to walk with out help and eventually could not move my left leg at all. Fortunately, after 2 weeks of hospitaliztion and some IV steriods I regained 90% of my functioning and am now at an EDSS of < 2. This relapse in December came 2 weeks before my commencement for my Doctorate degree, so needless to say my initial reaction was one of anger and despair. The most awful thing about this disease is the unpredicatable nature of it. Btw, my degree is in Clinical Psychology, so I know from personal experience in helping others that the unknown is a terrible source of fear and anxiety. I think I coped with it all initially by trying to learn and read as much as I could about anything and everything related to MS. I think having this information gave me a sense of control. However, I still had a propensity to be alarmed by any small changes in symptoms as I feard another relapse. My day-to day living was predominated by MS. Sure enough I relapsed again in February of this year and was hospitalized for another week. I had a bout of double vision that lasted for 4 weeks and a right foot drop. Thankfully, I am again stable and my EDSS is <2. I have learned a lot about myself and others in this whole process (like the fact that I have a tendency to ruminate and worry excessively). I have realized through all of this that there are some things that I cannot control and that fretting over them will only do me harm. I have learned that although I too have lost my old self, this presented an opportunity to create a "new" and better me. Perhaps my physical capabalities are not the same as before but I doubt anyone else would know otherwise. This disease in a way has given me a sense of purpose and solidified my passion for helping others. Along the way though, I realized I had to help myself first. So I have created a lifestyle for myself that I often preach to others but rarely followed before this for myself. I now eat in a very healthy way, make sure that I get adequate sun exposure several times a week, exercise 4-5 times a week, take supplements, take LDN, do Tai Chi/ Yoga, and Meditate almost everyday. More importantly though, I have surrendered control over that which I have none. While the future in unknown and I may end up being disabeled, I do NOT believe I will end up that way. Although many people do end up that way, many do not. There is a 10 year longitudinal study that I read that essentially stated that 1 in 3 people whose EDSS score was <3 at baseline remained unchanged 10 years later. This was a naturalistic study and the patients took nothing for their MS. I suppose this is what might be labeled benign MS, but it indicates to me that this ill fated future that you fear is not guaranteed. I am now doing everything I can to take care of myself, so I feel my odds are better than 1 in 3. I have decided to live my best life "now" and not wait for a cure or better treatments. If you approach this disease this way, I can't help but feel that you are handing over any sense of control that remains away. In closing, I will say that this disease has shifted my priorities in life, as I now realize more than ever the value of my friends and family and that while this disease may rob me of many things, it cannot touch my connection with other people and the love that I share with them. I have learned to make time for myself and to be fully aware of the moment to moment nuances that make life worth living.

All the best,
VS

P.S. This experience has also crystalllized for me the power of the mind/body connection. I already knew that from an academic standpoint (as there is tons of research in the field of psychoneuroimmunology that suggests that how we think and feel impacts the functining of our immune system), but have experienced this first hand on my own. I believe my turning point was after my hospitaliztion in Febraury (which was preceded by tons of stress and worry). I now feel significantly better and am striving towards being 100% whole again. However, I am not letting my getting or not getting to that point determine the quality of my life.

hi bromley, man i send you my wishes for happiness, however you get there!

i was dxd 6 months ago at 35, and all my experience, is:

ms? what does that mean? oh, i see, just about jack. ms, huh. what EVER!! screw ms! i am going to kick this thing's ass! take my activities away from me? oh i am so taking you DOWN.

so far, it's working. but i am lucky because everything i look at with the bloodwork looks like i can explain why it's low in me, with ease. so fix the blood, and maybe i will fix the ms. if not, maybe i'll be pissed off in the future...

bromley i tried driving even though in was numb from the neck down, and i found i could do it, and the more you try, the more confidence you get and the more things have a chance to come back. they certainly did for me.

when you describe your feet as "dead" as opposed to "numb", i had that too but most lastingly in my hands. you must have read this from me before: they went from dead to sorta numb in hours one time when i took a big dose of b vitamins. that was with the klenner protocol in mind. that was the start of my getting to be able to type properly again and stuff.

not to say i have not been pissed off at the length of time some of these symptoms are taking to get lost. but if i slack on my routine, down i go again. so, gotta keep it up!

and for goodness sake go get your _ _ _ _ _ _ _ _ level tested! don't make me post all its links to depression...

hugz

Thanks to you both - its just been a bad day - the MS nurse ran through the past six months and thinks that the Rebif isn't working for me and could be making things worse. I certainly feel this way. As a natural control freak I hate to accept that I may no have much say in how things turn out - but I need to change my mindset and start enjoying my life again - for me, but more importantly for my wife and children.

Ian

Hi Bromley
Hi everyone. First of all I want to thank you guys for sharing your feelings about this disease because I know how hard it is to talk about it. I also know that it is a very important thing to do. Bromley, reading your post just breaks my heart. I feel every word that you have said.
Uncertainty is one of the worst forms of torture. I was diagnosed in Feb. and I feel that I died that day too. I feel that the old me is forever gone. I always say that I just want to breathe again like I used to before. Freely and without fears. I like the idea of making a new me though. I did not think of it that way before. Initially, I did not care to read about the disease because as a Nurse I already knew as much as I could handle. I would go online tying to find people that had the same fears and anxieties sa I did. Instead I would find stories of how despite having MS, people were happy and still went on with life. Initially this made me really angry because I felt alone in how I was feeling. I want to hear that there were people like me who could not eat, shower, or have any desire to live. Now...I am glad to see people like that. It gives me hope. However, I still have days when I just can not believe that I have MS and get angry again. I am struggling to accept this disease still. I don't want to though because like you, I know that the cure will come.

The way that I try to cope with the illness is by meditating (learn it from someone who really knows the art), yoga and Ativan. I also really believe in the mind body connection. I have seen a lot of evidence of it not to. It might sound silly to you but just to do yoga and go through the relaxing breathing that goes along with it makes a world of difference. I have DVD's of it and do it at home. I have also memorized the moves now so on a nice day i always go outside and do it. I meditate to sounds of nature and it calms me so much. Then there is Ativan. I was so anxious when I was first diagnosed and my DR. perscribed Ativan for which is an antianxiety med. At first I would look at the little small white pill and be really pissed that I needed its strength to calm down. It made me feel more out of control to have to need something like that. I have always been able to deal with my problems and never had to take anything for it. Now, I needed this stupid little white pill. I took it thought and it allowed me to go on with my life a little. I also started to see a psychologist that specialised in MS. That was a graet deal of help. Bromley, I know what you mean by people getting sick of you talking about it. I believe that you need to talk about it until you are sick of hearing yourself talk about it. So, who better to listen thatn a psychologist? Even if you don't think that they can help you, you can sometimes help yourself when you hear the problems out loud. I also started to journal. I write every dark and horrible feeling that I have in it and at times I cry while I am writing. I find that it really helps me. When I cry, I feel that all those feelings that were bundled up inside me are released and it feels good.
Bromley, there is more to you than just your physical being. I am sure that your kids will be proud of you no matter how you are physically. It is the hardest thing to think that you have to let go of all that you had planned for yourself. It is so hard...but like my psychologist always tell me, you don't have to. You know this as well as I do that there are drugs coming. I am not syaing that it is easy but you must enjoy your life now. Yesterday my fiance and I went for a walk and we were holding hands. I thought about how it would be to not be able to feel his hand one day. It would be horrible. So I decided to hold it tight and feel all that I could. To have it in my memory so that I could always feel it in my mind even if I would not feel it physically. A lot is stolen from us by these little tiny silent white spots but then again there is a lot that can't be taken away. Hold on to those things. I hope that you try meditating and yoga. I promise they will help you. I also think it would be a good idea to take some antidepressants. Just know that sometimes they take up to two moths to wwork. Do all you can to keep yourself as healthy as possible while we wait for the newer drugs. I think I speak for a lot of people when I say that we are here for you and that we understand how you feel. I think a lot of os keep our feelings to ourselves because we think that people in our lives will get sick of us specially because this disease has probably changed us to a person that we would never dream of being in terms on feelings. We feel alien even to ourselves let a lone to our friends and family. That is why I am glad and thankful that we have this place to share our feelings. I hope that things will get better for you Bromley. I know that they will. They have to. Please don't try and imagine yourself in a wheelchair and so on because you will be doing something that is very difficult at this time. IF, IF it comes to that, you may feel differently about a wheelchair. My thought are with you.
your fellow MSer,
NN

You're welcome. I too have had to learn to give up on my tendency to want to control everything. I once got a great piece of advice from my aunt. I was talking to her shortly after my relapse this year in Feb, and was telling her how the worst part of this disease is that it is so unpredictable (sxs, course, disability, relapses, etc). She was quick to reply and said "LIFE is unpredictable." And she is right, this is no different than anything else in life. I think a large part of our sense of control is an illusion, one that makes it easier to go to sleep at night. So nontheless, that moment was an eye-opening one for me. I think all we can do is play the best hand we can with the cards that have been dealt to us. Much like the serenity prayer, all I ask for is to have enough awareness to know what I do have some control over and what I do not. I hope you feel better. Have you considered trying another medication? Having lurked around here long enough, I get the impression that you wouldn't be as open to treatments that don't have the science to back it up. I can certainly undertstand a healthy amount of skepticism, but there are other options that may help out. And having the background that I do, I know that people often have a hard time believing that counseling/therapy can work. After all, what are you doing but talking. Yet, there are studies after studies that show that these options are often better than medications in treating things like depression AND more advanced studies that use MRI's show that things like talk therapy and meditation, for instance, produce changes in brain activity and function. I think it is important to keep an open mind about not only this but alternative treatments.

VS

Here is an interesting link with a summary of psychoneuroimmunology research, http://www.bcaction.org/Pages/Searchabl ... r014C.html

Though dated, it highlights some of the more interesting findings. And with what we know about NK cell activity and MS disease activity, it is certainly worth thinking about. I know it is difficult to do, but I truly believe that feeling better is half the battle in BEING better.

VS

Thanks to you both for contributing. I hope others get something from this discussion. Unlike most diseases you have to have this one to really know what it is like. My beloved wife is my soul mate but she admits that she cannot really understand the challenges / fears etc. I'm really starting to believe that if I can sort out the emotional stuff it may have a positive effect on some of the physical stuff.

Thanks again

Ian

one of the first things i did to get a handle on the situation was read and read as was mentioned above. i also assembled a health care team and there was a counsellor on it. i specifically asked for someone trained in dealing with people who have been handed an unpleasant diagnosis. i think my sessions were very worthwhile. we never even discussed ms half the time, but when you can get any form of stress off your mind, it is beneficial to your overall health.

Bromley, I identify with you completely. I know I should keep quiet, or send a PM at the least; but this will show you that there is another point of view.

We all handle this crappy disease in different ways at different times! I am "accepting" at times, but mostly I don't and am ANGRY! My advice: Do the best you can in any situation and FIGHT this MS. I think you are a fighter, Bromley. I hate the word "cope!" We have it, we don't like it one bit, we WILL get to the answer!

It does help to know there are understanding people here at this site; my husband is my soulmate, too, and I don't know what I would do without him!

Ian
First let me say that I have the utmost respect for you. I can't tell you how many times you have posted information that I have found extremely helpful to me and for that I am so grateful. I appreciate all the research you have done for all of us. I think that educating yourself on this disease and making yourself as knowledgeable as possible is the only way to get a grip on it and you have really helped me do that.

Having said that, I am wondering if perhaps you may be doing so much research that it is to your detriment. Maybe MS has taken up so much of your life that can't enjoy anything else in it. When I was first diagnosed 4 years ago all I did was think about this stupid disease, nothing else. Then I heard a song on my daughter's CD player- it was Tim McGraw "Live Like You Were Dying" . It was the title song and Tim McGraw had written it when his dad Tug McGraw had been diagnosed with cancer. I don't know if you are familiar with Tim McGraw (country singer) but the song was very meaningful to me. Tim asked his dad what he thought when he was told he had cancer and his dad's answer was that he was going to go sky diving, bull riding and all the things he had always wanted to do but had never gotten around to doing. In other words, he was going to just live his life. And when I heard that song I decided I liked that attitude so much I would try to follow that advice too. So I try. (I don't skydive!) I don't always succeed, don't always have good days, but try not to focus soley on MS. I admit it is not far from my mind but I attempt to compartmentalize. If I can't do one actvitiy with my kids (like running) I do another actvity with them instead (biking). They know what I can and can't do and they suggest things we can do together (movie or whatever). I think they only care that we are doing something together not what it is.

Please keep educating us. You are such a valuable resource. It probably helps you also. Just keep it in perspective for your health. We are all in this together!

Take care,


Lori

Lori,

You are right about too much research. The treatment which would be a breakthrough for me would be the one that reduces MS website use by 95%.

If they knew my address they would take me away in a straight jacket. Closely followed by Jimmylegs who will soon overtake me on number of posts.

So I plan to cut back on posting - but I still want to be the poster of the following when it happens: "MS caused by XXXX", "Treatment XXX stops MS in its tracks", "Drug Y repairs damage to CNS caused by MS".

All the best

Ian

Ian -

The responses to your post have been so meaningful, I'm not sure that I can add much. But I want to respond because I appreciate all you do for this site and because I want to echo the suggestions that I have found valuable for me.

I think that for many of us there is much to be gained by exerting some control over this disease in our lives. There's lots of mechanisms involved: mind-body connection, placebo effect, etc., but they kind of all get you to the same place. So, especially because there is no medication available to me right now, I focus on doing things that I believe will help because their outcomes are beneficial or because the act of doing is beneficial.

So, for example, I do accupuncture once a month to keep things even. I've transformed my diet and supplements. I can measure the impact through blood and urine tests, but more importantly I can take comfort in controlling some input into my body. I stretch. I try and meditate. I talk with a counselor when I feel the need. You get the point.

I hope that you are able to carve out something that works for you. And if you try something and it doesn't feel right, try something else.

- Arcee

okay i get busy at work for two days come back and this has turned into a lively discussion....okay so now its my turn...i understand what you are dealing with...i have 5 kids..yes count them 5...i love them dearly...i was unofficaly diagnosed in sept..however dr couldn't put that down due to the fact that everything came back negitive...now i loved my neurologist to death..he was a wonderful man and did everything in his power to get this under control and make sure the insuranse covered everything....now if ya havent heard my neurolgist pasted away while i went on vacation...the man who fought for me is gone...i was at a loss when i came back..now what do i do....i mean really now i have to start all over and on top of that i just went the other day and saw my neuropsch dr who did more mind testing as i call it and has informed me just last nite while at my 12 yrs baseball game that my memory is getting worse..it has depleted by 30 percent...so yes i went home and cried i mean what happens when i cant remember the simplest thing with my kids...but ya know what...my kids called me last nite..they were with their dad and told me that they would do anything i needed so that it would be easier on me..they brought over little coupon books that i didnt know were made for me while i was gone...it was from the parents and kids that i help in the pack my kids are in...i was just in awwww...i just didnt know what to say...i mean here i was feeling sorry for myself when i have kids and friends who will be there no matter what..yes you do get to a point when ya feel that you wont be able to do anything with you kids but ya know what....your kids love you so much no matter how you drive or get around....i truely think in this situatin my kids will give me the streaght to keep going no matter what...yes we all get angry and mad and even depressed about it..but thats why we have this wonderful site and all the wonderful people around us to help give us strenght...i work in the health care field and my brain i have to use everyday to do my job..but here at work everyone helps me..i understand the frustration you have and the not fair thing but ya know i realied as long as i am here to see my kids grow up and get married and see my grandkids it isnt going to matter a damn to me weather i am in a wheelchair or walking with a cane..so always look at the children..they give strenght when you dont think you have anymore....okay i feel like i just did a speech..hopefully it didnt come of hostile or anything..its just i realized that last nite and want to help other people get that..so you keep up the fight and we will all be here for u..i know you have all been here for me when i have needed..so i say thank you

chris(the insane losing her mind girl)lol

As ever, many thanks to all who have posted and for the pms.

I hope others may have found the responses to my post as helpful as I have.

Few of us have met or are ever likely to meet, but there's one thing this disease cannot destroy - human kindness.

Ian