When you are diagnosed - a lot of questions arise.
Earlier when Sclerose.info had a mailbox - we got a question from a newly diagnosed sclerosis sufferer, and even though it is some time ago, it does not change the questions that always arise.
Here are some answers from various of those affiliated with Sclrose.info's then letterbox editors and asked them to respond to the letter sent by Mette.
The letter thus looked;
Headline: What to do though
This week I've been told I have sclerosis, I'm 27 years old, good job, sweetheart.
I simply do not know what to do - and I do not know what to do now. A cry for some advice and help.
I have read the page here - New diagnosis, and it reassures me a little to know that you can move on, but those are all the questions I have, tell me how to calm myself.
I beg you - because I do not know what to do with me
Psychotherapist Søren Beejo Hansen replied:
As you have just been diagnosed, I can vividly imagine your inner chaos with thoughts on the future, impact on relationships, work and especially the body. There are certainly notions of how wrong it can go on all fronts or a fear of thinking so far. And a jumble of feelings of anger over this unfair fate you have been assigned to paralyzing fears of ending up as invalid. You have landed as completely powerless in a world without dreams, without prospects, as everything at once looks bleak and black to you.
Your boyfriend and your parents and friends will certainly do and will in the future do what they can to support you, but it is limited what they can alleviate inside you, afflicted and unprepared as they are in such a situation. Therefore, it is a good feature you have chosen by contacting sclerose.info, where experience, understanding and compassion jumps you into your difficult situation. What we want to tell you is our experiences from your own life or from meeting people in situations similar to yours, and you can then take what you are capable of right now and return both to these expressions but also to new issues at a later date. Consider us a source that still flows and which you can drain as needed. Read e.g. our answers to other questions in different phases and problems in relation to a life with MS.
Now to your words and what I have to say on that occasion. You simply want to know what to do with the life that has suddenly changed for you. When big changes happen in our lives, and what was important before suddenly loses meaning to us in relation to the new that has crept in, without asking us, and says: now it is me who decides! From now on you dance to my flute and I decide whether you like or enjoy. You have been possessed by a power that has no emotions or intellect or even any body where no communication is possible, no negotiation. You can not just be sweet and do what the disease asks you to do - on the contrary, it seems as if the sclerosis thinks you are wrong and should be punished again and again, no matter what the hell you do.
Right away, it's a hopeless battle you can't win no matter what you think of. Therefore your rudeness, your powerlessness and your inner chaos.
Maybe you should give up the fight beforehand, give up on escaping, ignore or contradict the terms and reality that are yours. Because it's not going to change. It feels hard to write this, but I can't help you deny the truth, but on the contrary, start accepting it and see what happens. Maybe it's not even wrong, maybe even good for something. Who knows? If, right now, you are reading this label for who you are other than a newly-diagnosed diagnosis, then what do you see, what do you feel?
You may be in shock, unable to do or be anything to anyone right now. Then do not. You are a person who first and foremost needs your own attention and care right now, e.g. by continuing to do the things and be the Mette that you until now liked to be, and at the same time get to know the mystery of the disease so that you can best relate to it and do for yourself what is required - and not more. The body does not ask you to worry about the future or imagine what might happen, but just to take action when necessary, and otherwise continue your good life with boyfriend and work, etc. You get an extra area of expertise you need to be expert on, but just take it easy, right now you can step by step learn what it takes physically to tackle a symptom when it shows up. There are a lot of people who know the clutter that will guide you if you ask, to get you started again on these new terms.
In addition to the physical, it may be nice to learn to relax consciously in the body. Try right now eg. to focus on a point in the abdomen behind the navel possibly. with the palms of the abdomen, and notice how this point moves in and out as the breath moves in and all the way down the abdomen and back out again. Your job is to sit for 20-30 minutes. and without doing anything other than keeping this focus on the point behind the navel, nor controlling the breathing, it does it by itself, just straining and each time your thoughts take attention away to bring it back to your adopted focus. It is a meditative process that can help you stay centered and relaxed rather than constantly letting you flutter like a rowboat without veins of thoughts and feelings away from yourself. It may be difficult at first to keep the attention on the spot as the tendency of the mind to flare, but quite quickly an effort will bring fruit in many ways.
If I need to support you further, it is necessary to know more specifically what you are having trouble with, but I hope you have some getting started now after this harsh drive you have been on.
Søren Beejo Hansen
Nurse Lene Bangsgaard replied:
Hey Mette! Where do you live? Which hospital do you belong to? In some places, nurses take newly-diagnosed calls and try to clarify some of the issues that arise. I assume you have been told that you can contact the psychologists in the sclerosis association for free.
You are also very welcome to call me and I will give you the name of a nurse you can contact.
You can get my phone number by contacting sclerose.info on phone number 33 13 33 97
Physiotherapist Nicolas Nyemann replied:
It is important that you start exercising as soon as possible. Training can help you regain your strength and balance after attacks. Contact your doctor and get a referral to your local physical therapist. You don't just have to go down to the local gym and work out. It is important that the training is planned and guided correctly.
If you live in the Copenhagen area, please feel free to contact me.
Remember that physical therapy is free.
Kim Gelser answers to you are:
I'm very sorry on your behalf Mette.
I wish I could take it away from you and make you healthy again - but I can't.
When I was diagnosed with MS I remember sitting out of the window for hours.
I was 25 that time - and felt like you probably do now - my life is over !!
Everything seems unreal - and as I read your question you are in the middle of the "it can't be right - it's an evil dream" period.
Take your boyfriend and your parents to a conversation with your doctor, but first read about sclerosis (which contains some very useful information on our website) so it is not totally foreign information to them as the doctor will tell them.
At the same time, they can also ask some questions to the doctor - questions you may not even think about now, and otherwise you will probably also have difficulty keeping track of everything, at least I had.
There are a few things I think are important for you to know -
/ Take it at your pace. It's not something you need to accomplish - give yourself time, too, to be sorry. Sometimes it may seem like one's family, boyfriend, friends are pushing one - but you have to remember they only make good sense - but already learn how to say.
/ You are still Mette - people still love you. That has not changed and will not change
/ Your points of view - family, boyfriend, friends - are still around you and they will do everything for you right now - use them Mette!
/ There is treatment for MS - not healing, but treatment that can help you. (see the treatment section on the site for more specific information when you want)
/ We are many who live a relatively free life from sclerosis (although it has become part of one's luggage)
Where you are now - it's hard to relate to things that are going to happen in the future - bodily, therapeutic or otherwise.
Therefore, take one thing at a time - at your own pace.
Keep ongoing dialogue about your development, then I and the other affiliates at Sclerose.info will try to help you as best we can.
I want to emphasize to you that a life with sclerosis does not in any way mean a life without content and a life without quality of life.
You can always contact us if you have any questions or you would like to know more, and I hope we will hear from you again when more calm has occurred to you.