This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear all,

Sorting through some paperwork I came across the letter that my neuro sent to my MS nurse. The final para reads 'Ian is very anxious about having a diagnosis of MS. In my opinion, his reaction is abnormal... He admitted to me that he commonly wakes in the early hours of the morning, worrying about his future.... I have recommended that he should seek formal counselling and possibly cognitive therapy to try and come to terms with the diagnosis of MS'.

18 months or so on the first part is still true.

My question - has anyone tried counselling and how did it work out? I've seen counselling services advertised for people having relationship problems and debt problems but these are problems that can be solved or improved. I would welcome any feedback on anyone's experience?

My big problem is that I've always been a future planner and MS isn't good for future plans!

PS I did write back to my neuro listing some of the possible symptoms, noting the fact that I had two very young children etc. He wrote back to say that on reflection 'abnormal' was a bit strong, but that some welcomed a diagnosis after years of not knowing.

Ian

I went completely potty after my diagnosis, I was very suicidal and considered to be at high risk of self-harm. In these sessions the counsellors emphasized that my reaction was completely normal!!! I think your neurologist must be rather an old **** to think you were abnormal. What does he know about anything?! I did find it quite soothing listening to the counsellors agree with everything I said but they didn't really help much with anything practical like, er, an effective treatment. Having said that it's good to be able to talk to people and they may have some helpful suggestions so I'd go with it if it's free/covered by your insurance. Otherwise just neck loads of statins, LDNs, antibiotics and vitamins. None of these seem to be particularly harmful and certainly might have more of an enduring effect than a sympathetic counsellor.

G,

Thanks for the quick response.

I think I got on the wrong side of my neuro when I said something along the lines of 'you get one life and I manage to get a one in a thousand disease that falls to the one medical specialism who never cure anyone'.

PS You might want to add under your list of what you are taking 'just my opinion, consult your doctor on treatment options'. I'd hate to see you sued for responding to my request.

Ian

My neuro also wants me to "talk" to someone, he's worried about my coping with my diagnosis. I'm about 18 months in and am in tears whenever I have to talk about it. But I don't really want to see anyone or be part of a support group, it's just really not my way, I'm quite private and am completely in the closet as well, I don't want my work or anyone else to know anything about my health (just my own personal choice). I do find this site helpful though and supportive, but part of that is because I can be anonymous. I have told my sister and one close friend. I had told another close friend, a girl I'd been friends with for 20 years and she reacted very badly, basically told me I brought it on myself, poor eating habits, some hard partying back in our early 20s...needless to say that friendship is over. Interesting, weddings, funerals and illness seem to show people's true colours I guess. When I see people with ms who are very badly affected it scares me, I have sympathy and empathy, but I don't want to see that, I'm scared that it will be me one day....I don't feel good about myself for having that reaction, but I do, and that is why I don't think I'd do very well as part of any group, plus I would feel very exposed. I think my reaction, my fear and anxiety and feelings of being completely overwhelmed are normal. I'm living with a huge question mark hanging over my head, I have no idea what tomorrow, next month, next year will bring. I suppose the same can be said for everyone, you just never know. I don't know if I'll ever be better adjusted to all of this, but I do hope that in time I won't have this dark crushing depression I feel, I hope I get to a point where it doesn't consume me.

Mary, G and Ian

How do they know what's normal? Have they been told they have an incurable illness?

Come on, I'd be worried if people didn't react.

It is tough. Mary, I am very much like you. I have not told many people, just a handful. It's a true test of freinship and support - I have been surprised like you.

My neuro was quite human - he asked his secretary to get me a cup of tea and look after me, which she did. I think I cried on and off for weeks, and ever since my dx, I get emotional very quickly.

Ian, I am not too convinced with counselling for MS. It's about coming to terms with it, which I equate with stopping fighting it. You don't strike me as that type of person! At least that's my take on it.

Well done for trying it though G. Glad you are still in pursuit though!


J.

Mary,

Thanks. Many of your fears echo mine. Some seem to rise to the challenge but I'd have a bit more fight if I thought I could win against it. I had a full blown medical in late 2001 and was told I was in excellent health and there was no sign of any underlying problems. The doctor told me I was a model patient - never smoked, teetotal, 5 veg / fruit a day, plenty of exercise. Yet 2.5 years later I'm given this dx and now my knees feel like an 80 year olds.

The uncertainty kills me. The usual response from people is that no-body knows their future 'you could be knocked down by a bus tomorrow'. But in many ways we do know our future and that wretched EDSS maps it out for you. It might not turn out that bad they say but does anyone know a 75 year old with MS? And one that still walks!

My motive is not to depress people, and I really admire the approach of many, but I just want to know that there are a few out there who may not be as positive as some folk who use this site.

I'd be happy to take PMs to avoid this thread getting too morbid. I just got up today and thought to myself - 'I'm sick of being ill'.

Ian

I basically agree with Mary. I've had progressive MS for 25 years. In my opinion, the only people really worth discussing our issues with are other MSers. Hence, sites like this are fantastic.

You may find an occasional helpful medical practitioner but even these people can be momentary in terms of their influence and interest. (And they cost $). Relatives are about the worst. I sense they have a fear of being so close genetically and therefore vulnerable. Kids can be pretty good and partners sometimes OK, although partners often feel cheated. Mary's experience with her ex-friend is not unusual.

So, from my experience, I would not expect too much from a Counsellor. Having said that I note that the MSRC in the UK has a phone Counselling service. If you wanted to talk to someone, I would try them.

Regards,
Phil.

I have worked with different therapists over the years for various issues, primarily relationship related ones. I consider myself experienced enough in this arena to be able to find a professional to help me to deal with the terror, grief, anger, etc. that I have around this @#%!!! disease. I have been to several, and they were not only a waste of money, but I feel they did me more harm than good. I could just hear them thinking, 'Wow, I've never contemplated anything like this before" as they babble in an attempt to wrap their brains around this living nightmare. Oh yeah, and that will be $120. Our plight goes far beyond grieving a loss. Try past loss, present loss, future loss. I can't think of anything that we can tell ourselves that will help come to terms with living in a body that is slowly, or in my case rapidly, failing. All I can think is that I must be paying off one hell of a karmic debt. Next life please.

Denver, you are funny.

Being in the health profession myself AND living with this disease too, what I find most helpful is concentrating on the things that I CAN do.

The stress of living with this disease while living with three teenagers and still working full time, wow, can be overwhelming at times.

I do that type of counselling for others and apply the tricks to me too. Anxiety and stress , whatever the cause, feels the same and the ways to improvement are often the same.

The most important thing is to sleep properly. Medication is necessary sometimes. Nothing addictive but something that will improve your energy level and quality of life the next day, ust because you slept properly.

People are different, I agree, but sleep is a must for all of us on here.

Take care, Carole

I hate that response. Simply, it's crap. Here's what I tell people. No, nobody knows exactly what their future will be. But I now know that I have a statistically significantly higher likelihood than you do of ending up needing a cane or crutches. Do I know for certain it will happen? Of course not. But your potential future is not the same unknown as mine. Need more proof? Ask the disability insurance companies what it costs you vs. me for health insurance. Most of them won't take me because I'm "higher risk."



Yes, actually I do. The mother of my husband's friend has had MS for over 30 years. She's in her early 70s and still wallks.

Ian, I want to answer your main question at the last here, because it's very timely. I found myself thinking about sending you a private note once or twice before, because I worry about you. You're on this site a lot. And you do post a bit negatively at times--mind you, that's not a judgement. I'm the Queen of Negative Thinking, just ask my husband.(Although I inheirited my title from my mother, Her Supreme Anxious Royal Highness of Negativity). And I have to fight very hard against it.

I spent years in and out of counselling from my early 20s until now, my late 30s. The eariler stuff was overcoming a lot of damage done in a very twisted family scenario--and also, in retrospect, looking for someone professional to help me grow-up since my parents, although I love them, are very flawed. My work with this counselor helped a great deal over the years. It helped me through a divorce, and to become the person I needed to be to find the right man and be open to being with him. And, most recently, it helped me deal with this diagnosis to some extent.

I say some extent because I think we're always dealing with it. I'm not so great about being in denial--I sometimes envy those who are. So for someone like me, which I think you are, who is facing things all the time and can easily "go negative" as they say in public relations, it takes new behaviors. To promise yourself not to think about it always. To make lists of the positive stuff. To use help someone else. To count your blessings. To take the day off, or just the hour off, from thinking about MS. To stay off this site for a week. And perhaps, to find a good professional person you feel comfortable talking to as part of the time you "allow" yourself to deal with MS.

Whatever MS may take from you, it cannot do half the damage you can do to yourself with depression and succumbing to negative thinking. Trust me, I know.

I've been negative most of my life. I was taught (by my mother) to fear a lot of things that never happen, to worry about EVERYTHING, to fret, to complain under one's breath without reallly doing anything to stick up for yourself, to be passive/aggressive. Basically, to bitch a lot.

In some ways, MS has helped me be a better person. MS showed me that yes, something really, really bad can happen to you and guess what? You're still alive. So if you were waiting for the bad news to be delivered, well, it's come. So it's time to move on. And if you were waiting for your life to begin, well, better get it started.

I find counselling I've gotten has been helpful. The psychologist I see can't help me much about the MS itself, and I don't expect that, but she has had some experience seeing people with various other incurable and/or chronic illnesses - we have a lot of company out there, unfortunately. It is more about having someone to talk to about things I can't say to anyone else, not to family, friends, or coworkers - I don't have to worry about upsetting her by expressing my thoughts. It can talk to her about how having this illness has impacted relationships with other people in my life. Although I'm sure she wishes me well, she doesn't really have any personal vested interest in my outcome like they do. That sounds callous, but it is actually extremely liberating.

She is there more to listen than anything. There is not much advice she can give me, other than to live my remaining life as fully as possible, which is as good an advice as anyone on this planet can get, whatever the circumstances. She'll gently prod me about that when I get really down and start wallowing in misery and worry for the future - "don't poison your time" she says. But she does let me express my thoughts and doesn't try to be perky and cheer me up and positive-spin everything. She is matter-of-fact when I discuss end-of-life decisions and doesn't go into denial about my situation. She made recommendations to other medical practioners, like a nutritionist, physicians, etc, that are interested in helping me out holistically. Those recommendations have also been helpful, perhaps more in retrospect than I even realized at the time. She is also willing to listen about the research and reading I've done about MS and other diseases and ask questions - stuff that is intensely interesting to me but not good dinner conversation. There are times that I think the sessions are not helpful, particularly when I'm feeling bothered or unwell, but something tends to happen, some catharsis or realization, and it may take weeks to register it. Just the act of writing this note made me realize some things about the experience. It's interesting, when attempting to communicate an experience unexpectedly leads to a self-realization. Like just now.

I got lucky - I just picked her out of the phone book. It was shortly before I got the diagnosis - I knew beforehand that I had a serious medical problem and all the possible diagnoses I could match up were pretty grim. I don't know if there is any useful advice to give when selecting a counsellor or therapist other than maybe to find someone that has had some experience working with people that have had some serious chronic health issues - it doesn't necessarily have to be experience with MS per se, I don't think. When you contact a person you can tell them your situation - good therapists that specialize in some other aspect like marital problems and who might not be grounded in chronic illness-related issues may recommend someone else. If they do that, it is a great professional courtesy, and not a rejection. And if you don't get along you can try someone else. A therapist that helps one person might not work as well for someone else.

Good luck with it if you take it on. I hope it will be helpful.

Lisa

Ian,
Just for the record I"m trained as a counselor, although that is not my profession. I'm 43, which I think is a little older than you are and I believe you were diagnosed in 2004 and so was I. I must admit that when my first MRIs came back and they confirmed my diagnosis I too nearly went "under." I have lived with symptoms pretty much everyday since then. They vary in intensity but are always there. I guess what I'm trying to say is that I'm here everyday if you need someone to write to. The best part is even if the answers if give you don't help, they're always free!

Somebody said that getting good sleep was important and I can't agree too much with that. In fact at the time when I was seeing a counsellor my main problem was the absence of sleep caused by the spasm in my right leg. I would spend long lonely hours at night seeing my mother wheel-chair bound, doubly incontinent and desperately sad at being such a burden to my father and I knew that was my fate too whilst my leg jerked around uncontrollably. I would get maybe two hours sleep with my head spinning at my inevitable doom. Then I was set up for the rest of the day with an unavoidable bleakness. Then a doctor prescribed me Baclofen which helped me sleep and the worst nightmare time was over. I think if I was still having majore sleeping difficulties I would still be pretty suicidal. If you can't sleep get some help. Insomnia is a major contributor to depression.

Ian do you have anyone at home that you talk to??? Not someone who is frightened to look at all aspects of the future but someone who talks about the possible worst case scenario as well as the best possible outcome. John at first went through extreme anger at the diagnosis his sister and I dragged him to an MS support group which he stayed with from March 2005- through to October 2005. Right now he has forgotten most days he has MS so he doesn't go right now. Fine with me as it is there if and when he needs it. This is frightening at times but no need to be paralyzed by fear as that is not living your life to the fullest. Listen to your body when you understand it 100% you will be in control. That in itself will make you feel more positive. Just today John decided he NEEDED to have wings and fries and he learned something extremely important. By the way I've been telling him this for months but today he heard what his body was saying. Since we don't eat sat fats we came out of the wing joint with the poor grandson with a tummy ache. I right away suspected to much fat in his system. Then John says I believe you might be right about the fats as my feet feel numb and the pins and needles are back. Right now he is napping something he rarely does since we took control of his diet. It was a productive day for John as next time he will know he can control his symptoms he doesn't have to sit back and wait for MS to take him down. You appear to concentrate toooooooooo much time on the what ifs and not enough on the here and now. Just an opinion. If you feel you can't talk to your friends and family honestly then by all means find someone impartial. You need to know you can't predict the future.

_________________
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.

Dear all,

Many, many thanks for all your advice. Also to all those who forwarded PMs.

I now intend to implement it.

I learn how to inject my Rebif on Friday so I hope I will feel like taking some control.

I'm going to cut back on my surfing of MS websites.


I really believe that in 5 years the treatment options will be far more effective in terms of controlling the disease and maybe providing some repair. I've got to learn to be patient.

All the best

Ian