You just walked out of your neurologist office after receiving the devastating news that you have Multiple Sclerosis. What now?
This is when you need to make some very big decision and some very important lifestyle changes. Most of us loose control at this stage, but I am going to try and give you choices you are now presented with, and exactly what you should and should not do. There is a couple of ways to make this all the more bearable for you, and could also help you in your life ahead. Note that, I say your life ahead, as this is not the end of your life but the beginning of a new chapter in your life. What you do from now on will determine the rest of your life. You are likely to go through the certain stage emotional feelings and thoughts that most of us go through after our diagnosis.
The first of these stages is denial and it happens to all of us, and certainly after the recovery of your first relapse. You are now over your relapse and you feel fine and you are likely to feel normal again. “I feel fine, the Doctors could be wrong I don’t have Ms”. In about 5% of the entire patients this is certainly true, but a good neurologist will not diagnose you after meeting the criteria for Multiple Sclerosis. In certain patient you do get what is known as Clinical Isolated Syndrome in other words you only have one attack in your entire life and the symptoms disappear for ever. This diagnosis will only be given if you do not meet all the criteria of Multiple Sclerosis and most case you do not present with a second attack. But in 95% of all cases the diagnosis of multiple sclerosis is definite and no matter how you try to deny it you still have Multiple Sclerosis. The first thing you should do is not to dwell on this point to long; because the sooner you accept you have Multiple sclerosis the better it will be for you.
The next step is to get all the info you can get on Multiple Sclerosis out there. Be careful in this selection of reading material on the subject. The internet is probably in my opinion the worst place to get first time information on Multiple Sclerosis. There are so many false promises and hopes being published on it, unless you can get it from a recognised organisation out there. The best place to get this information is at the local chapter of a Multiple Sclerosis society. They have been around for many years and have lot of credible information on Multiple Sclerosis. If there is not a chapter near you, write to one. They will be more than willing to send you the information. Read through all this material and digest it all. This info will guide you through the rest of your life. Once you have informed yourself on the basic facts on multiple sclerosis it would be safe to get on the internet. Join a support page and get some friends on it. But be very careful of opportunist out there. Multiple sclerosis is a disease that is fear driven, and a lot falls in the trap of trying to find a miracle cure out there. 99% of these operators have one thing in common, and that is to get you in their trap and use their powers of persuasion to follow their so called cure. Guide yourself by recognised societies information, and for the better part avoid all the so called cures. Do not let yourself be fooled into believing all that is on the internet. We live in an era with very modern and fast spreading information out there, and this is called the World Wide Web. It has it positive side, but it also has a very negative side to it. Avoid the pitfalls on the internet as this will lead you to false hope in most cases.
Now that you are informed comes the big decision; do I tell my family, friends and co-workers? This is a definite yes, because the support of them will help you a lot in your life. Or in certain cases the lack of support will also determine what you do in your life. The same information that you have armed yourself with now comes in handy. Use this information and pamphlets as a tool to educate others in your life. Spread the information to the important people in your life and rally them behind you. But do it in a constructive way, so that they don’t pity you as this is not what you need. You need to surround you with positive people and friends out there. You are not over the wall yet, and the more positive backing you get the better for you. But they also need to understand what to expect as to your physical abilities. This education is an ongoing process, because as your Multiple Sclerosis changes so will your physical abilities and certainly while you are in relapse you may require the help and understanding of these persons in your life. But this is also the point where you should not be stubborn and accept the help that is given to you. It will go a long way in your recovery process.
Now comes the important part, do not give up hope. There is a good Latin saying “Dum spiro, spero, “While I breath, I hope”". This is not the stage to crawl in a corner and give up. Giving up is the worst thing that you can do now. It is understandable to feel helpless while you have a relapse, but as soon as this relapse is over get back out there and live life again. Set goals for yourself to achieve, but now your limitations. Do not set impossible goals to achieve. Get constructive, get involved. If you do still work, try to remain there as long as possible, but also do not over exert yourself or put to much stress on yourself. Avoid stress whenever possible, as this is one of the worst enemies of Multiple Sclerosis. If you are not working get involved with volunteer work, but get your mind busy with something else, it will go a long way to helping you. Take up a hobby, but the important part is remaining active as long as possible. A healthy mind supports a healthy body. Keep your mind active, get books read. But keep your mind active, stay positive as positive thoughts lead to positive life.
Change your lifestyle, this is very important. Forget about the past the future is now and that is what counts. Change your diet, follow a healthy eating plan. But going healthy does not mean to go to the extreme i.e. vegetarian etc. You do not need to make drastic changes, but avoid fatty food, and eat more so called heart healthy foods. Eat a normal balanced diet. But it does not mean you cannot reward yourself with some treats every now and then. You are still you and there is no need to stop eating out etc. But the key figure is moderation. A big question that is likely on everyone’s mind do I stop having alcohol. Again moderation applies here as well. Have a glass of wine or a drink or two, but be conservative.
In comes the next step; exercise. This is a very complicated issue as you can only do what your body allows you too. Avoid exercise that will raise your core temperature. Exercise in moderation, for the longer you muscle stays active the longer you will be active. A very important part is to get back into action after a relapse. The better your muscles are trained the better your ability will be to handle Multiple Sclerosis. I am not saying getting trained to run the New York marathon. There are exercises like yoga that can get you in just as good shape without exerting yourself. Yoga type exercise will keep your muscle toned and supple, and this helps a lot to avoid muscle wasting away and going into spasm. For those who can afford it get physical therapy. But the important part is train your body to deal with Multiple Sclerosis. If you can do small exercise while you are sitting and watching TV etc, if you have leg that spasm, stretch and to subtle exercise. Put a tennis ball under your foot and roll it, it will help even for foot drop.
Listen to your body; it has a story to tell. Look for early warning signs of a flare up or relapse. Know the early signs like numbness, painful eyes, facial pains etc. When you see the warning signs get treatment sooner rather than later. Your primary physician or neurologist is trained to look for other early warning sign. Go to them if you see a sign of a possible attack. The sooner you get treated the quicker you will recover. Avoid opportunistic infection like flue or any viral infection. Don’t let this go untreated as it could trigger an immune response. Avoid contact with sick persons if possible. For those mothers of young children, this is going to be extremely difficult. The motherly instinct will take over, and I think it is unavoidable as your child comes first. Get vaccinated every year for flue and do so for your whole family, but check that the vaccine is safe to use in Multiple Sclerosis. Rest when your body tells you too. This is very important in multiple Sclerosis.
Inform yourself as to the treatments out there, as disease modifying drugs (DMD) can go a long way to help slow down your Multiple Sclerosis. For those that can’t afford it, find out from your local Ms Chapter or neurologist as to drug sponsored help programmes. Certain countries do have them. Get the right DMD, if one do not work inform your neurologist as there are other options. It is likely that your neurologist will not put you on a DMD before your second attack. This is just good practice and do not worry about it then. Always inform your primary if you are on DMD as certain medicine does not react well in combination with DMD’s. Also now keep a dairy of all new and strange symptoms as this will come in handy in the future. Take this to the Doctor with each visit and keep it up to date. This is the most important part of your literature for the future. It is your Ms Biography, keep it up to date. It is now part of the rest of your life. Lastly listen to the doctors as to what you can and cannot do.
Now comes my last part of important information. Having multiple sclerosis does not mean you should stop living, follow all the important guidelines and you can live a long productive life being it with a bit more difficulty. Never give up hope, there are important medical advances made in the field of Multiple Sclerosis, and in the near future the new line of treatments and medicine will go a long way to help our battle against Multiple Sclerosis. The next five years is going to be very exciting times for Multiple sclerosis and I believe we will see a cure in the very near future or a stop in progression at least.
