How To Deal

Dealing with Syringomyelia everyday can be a real struggle. This is why I am going to try my best to help the people suffering from SM just like me, figure out How to Deal :

• TALK ABOUT IT

Talking about how it affects you is a very good way to deal with SM. Talk to your family about it. Talk to your friends about it. Don’t be afraid to talk. Just talk, talk, talk!!! Share your fears with your family and friends. Tell them how SM is affecting you or how much physical pain you are in. They care, they will listen! You are not alone in this.

If you don’t feel like talking, then you can write about it too. There are some online groups and forums where you can express yourself or ask questions. Hell, you can even blog about it! The important thing is for you to share your feelings with someone, anyone. It could be a family member, a friend or even a complete stranger. It doesn’t really matter who.

So just talk about it!

• BE POSITIVE

Yeah, I know! You’re probably saying to yourself: “What is she talking about? How can I be positive while this stupid disease is destroying my life?”. Well, guess what? You CAN be positive! Besides, do you even have a choice? You have to keep going. You cannot give up! So, be positive! Enjoy life.

If you can change your mind, you can change your life. – William James.

Positive thinking brings positive vibes. So if you are positive, life will bring you pleasant surprises.

• GET EQUIPPED

Getting equipped is very important.

For example, if your symptoms include weakness and pain in the arms, you can get yourself to wear a wrist stabilizer. In my case, I had to get two of them: one for each wrist. I look pretty good in them! They give me the appearance of a real fighter! Now seriously, they help by allowing the arms to get some rest. After a little while, the pain or fatigue you feel in the arms will either go away or your arms will just feel better. There are items of the sort for wrists, knees, elbows etc. You will easily find them at the pharmacy. Personally, I also have a knee pad and I am beginning to think that I probably should get myself a second one.

For the pain most of us have in the neck, sometimes a neck brace can be very helpful.

I know how its hard to fall asleep at night because of the neck and back pain. That’s why I got myself one of these body pillows. I sleep on the side therefore my back really hurts at night. I find a way to put the body pillow so it can give my back some support. I’ve got to tell you, this pillow really bothers my husband because it takes a whole lot of space on the bed. But what wouldn’t we do for a good night sleep! We have to deal!!

So get equipped. Ask around. Find whatever suits you best. Whatever gives you some relief.

• Cry if you feel like it

That’s exactly what I said! If you feel like crying, then cry! It will help you release some of the stress. With SM we definitely live with a big load of stress. That’s why you have to cry it out! This way, you will not crack. After a good cry, you will feel better, stronger. Do not be ashamed. You have the right to cry and to go in your little, private, dark space for a moment, once in a while. But that’s it! You will not stay this way, you will not cry all the time because as I said before, you have to be positive! The crying part is just to get rid of the stress caused by this disease, the fears it awakes in you.

• Ask for help if needed

Ok, I know sometimes it is hard to do so but you have to admit that your body is not the same as before. You do not have the same physical strength. Besides, making an effort you shouldn’t be making might put you in pain for days to come. Therefore, ASK FOR HELP IF NEEDED! Do not feel diminished. It is not your fault if you can’t pull that chair, or pour yourself a glass of water. It is not your fault if you cannot cut your meat or comb your hair.

You have some good days and some bad days, so you have to deal. The days you feel you can’t do something, ask someone to do it for you. There are some things you cannot do whether its a bad day or a good day because they can worsen the syrinx and/or the symptoms, and you know it. Ask for help! For example, ask someone to move the furniture for you, you know you shouldn’t do it even if you feel like you can!

• Get some rest

When you feel tired or that your body just can’t anymore, get some rest! With SM the body gets easily tired, that’s why rest is important. Sometimes its just what your body needs. If you were doing something and you feel you need to stop for a while, then stop and rest for a couple of minutes or even for a couple of hours. You might also feel the need to rest for a couple of days or a couple of weeks. Do not hesitate to do so. Rest could ease the pain or give you some of your strength back.

Get some rest, you deserve it!

• See a psychologist

This is one of the most difficult part, I know. But a lot of SM patients fall into depression. If you feel depressed then go see a psychologist. You can even go before you get depressed so you can prevent the depression. I believe there are some psychologists who specialize in health issues. These are probably the best choice for you. Do not feel ashamed. A psychologist is just someone just like you who has been trained to help people deal with some issues in life. It is not a big deal.

Seeing a psychologist is just another way to deal with SM, then go for it if you feel the need to.

• Find a hobby

A hobby can help you relax and also release some stress. So find one! Do something you like. It will also make you feel that you still can do some stuff. Of course it will have to be something appropriate with your condition.

Personally, I’ve recently decided to try to make some collages. I cannot push myself too much because of my weak arms but as long as I monitor my efforts and don’t exaggerate I can finish up a piece.

• Have faith and hope

Hope and faith is all we have. There’s always hope. Hope that one day a cure will be found, hope that your condition will not worsen with time, hope that one day all the pain will just go away. If you are religious, then pray every single day. You’ll probably find the answers to your prayers one day.

Believe!

When the world pushes you to your knees, you’re in the perfect position to pray.- Rumi

• Laugh it off

Another way to deal with SM is to laugh as much as possible. Laugh everyday. Be happy! You can even laugh about yourself. Make some jokes about SM. Yeah, it probably sounds cynical but it works. It allows you to feel like you are more than an SM patient, that you can get through this. Laughing is also good for your health: physical and mental. Besides, who doesn’t like a good laugh?