It has been awhile since I have written on here. I have been having a heck of a time recuperating from this last exacerbation. I have learned a lot during this last episode and found it to be important to share to all fellow MS'ers.
Let me start by explaining what an exacerbation is for those that are new to MS and also loved ones that are wanting to learn more about MS. An exacerbation in simple terms is when symptoms, usually new ones, appear and last a few days. Some symptoms could be so severe that on onset you will know it is an exacerbation. Some take time to know for sure. Symptoms will come on and continue to progress. Of course, in the "MS For Dummies" Book it will explain that an exacerbation is only when new symptoms appear. In reality sometimes it will be normal symptoms that you deal with daily but all appear at the same time and continue without improvement. There are also what is called Pseudo exacerbation, which can be brought on by heat or a rise in your body temperature, along with other reasons. But for instance if the symptoms are being brought on by a raise in body temperature, then when your temperature comes down the symptoms will also subside.
Now on with what I have learned.....
When I am going through an exacerbation, I feel very alone. It doesn't matter if I have 5 people standing next to me. I feel alone because no matter how many times you explain what your symptoms are or what they feel like, it is too hard for non MS'ers to understand. I have a great support system within my family but as much as they try to understand and visually see what I am going through it is hard for them to grasp. I just had a 5 day treatment of the I.V. Solumedrol Steroids to help put the exacerbation into remission. The nurses came to my house and hooked me up and then I would go through my "normal" reactions (side effects) from them. Most nights I would be up all night not able to sleep. I would get on the computer and talk to other MS'ers along with friends and family. As much as the side effects are unbearable at times. I had so much support. No matter the time of day or night, there was always someone available to help me through it. Those people will never understand how much that meant to me.
My point to this blog is that when you are diagnosed with something like Multiple Sclerosis. You become a part of a very large family of fellow MS'ers. No matter how alone you might feel at times, it is important to know that there are so many of us that truly understand and are there for you but at the same time so are so many other people. I was not comfortable going to Support Groups. It just was not for me. However, I have started support groups online. I have met so many wonderful people with MS but also talked to the loved ones. I can't express how important it is to find and meet other fellow MS'ers to help you through the rough times and to help encourage you but most of all challenge and push you.
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