Multiple Sclerosis Struggles- Part One
Multiple Sclerosis, or MS for short since who want to spell out multiple sclerosis each time you use the term. I certainly don’t, and after nearly four years of being diagnosed, I still shorten it.
Welcome to the disease that is never really the same for any person. Some people go through this without any problems, issues, and other stop walking suddenly, lose the ability to speak. All of these are possible with a disease as unpredictable.
It is a disease that there is no cure from, so no to answer the question I have been asked too many times to count; I am not going to get better suddenly. Right now, the best the medical community can do is manage and attempt to slow the progression down. Some of the symptoms come and go, at random. I wish that were something I could get across clearer. Because somedays I do feel better, function better and less foggy as heck. Other days I use all my energy getting out of bed to the absolute bare minimum I have to each day like take my pills, feed the cats so they will be quiet and get water in my system.
The disease is still studied, learned, and progress moves all the time. Everything from new drugs, diets, routines, and more. Do they each work for every case? Hell no. Some cases, maybe. I am pretty sure every piece of literature I have been sent doesn’t always impact me, but I do read through it to learn more about what might happen, could happen or is currently happening.
I am lucky in some respects. It was found in an early stage without a ton of lesions dotting through my brain. Enough to figure out, hey you have MS after several months of grueling tests, doctor visits and a lot of panics, on my part. My husband, of course, rocked through it and studied like mad learning everything that could be wrong and had already thought it might be MS. I was also lucky that when I did find out, we were able to get a routine of drugs within three years. That sounds like a long time, but with something as delicate as the brain, three years has found a pretty steady system for me. Does it work all the time, nope, but it does most of the time, which counts for a lot. Stress, over-tired, not enough correct food, weather, lack of sleep, and of course stress seems to set the system into a blaze of flares to knock me on my ass.
The hard part is not just the physical, what will happen next, which is rough, but the emotional and mental difficulties. My neurologist had to sit me down for a serious conversation about how MS was going to change my life, not just the disease but everything. As one knows, diet changes, exercise routines, day to day life, but he did stress the points of friendship and family would change, people would leave because they couldn’t understand and others would. I thought he was overdramatic, why would my long term friend go or distance themselves from me just because I have MS.
I was wrong. So amazingly wrong, I had no idea. People got weird; people became either super supportive, unavailable, or just distant. I had a lot asking when I would get better. (Once again, I won’t be.) When will it get treated? (It is being treated, there is no cure.) Why are you tired today, you were tired yesterday? (I am tired all the time, sometimes I can fight better than other days.) You seem so unemotional, why? (I am on a shit ton of drugs doing a lot of weird shit in my brain and the balance is not here yet. That took over two years to get calmed down.) You look fine, are you sure you are sick? (Yup.) I could go on and on with all the questions I have had to answer over and over. I ended up having to lose people in my life that just couldn’t’ get over the idea that I was still sick, I couldn’t handle stress as well, and well I changed. Not because I really sat there an said, golly time for a change but out of I had to change. My schedule, my habits, everything; this was a crime, apparently by some people I used to know. They didn’t like that I couldn’t just sit there for hours listening to their what I now call same shit different day. I needed help, positive energy or vibes, anything to feel a little better but sadly my damn doctor was right, and it was not meant to be.
I wasn’t sure I was ever going to write about this, but enough time has passed for me to think and distance myself. I feel I should share my experiences and difficulties with MS and how it has changed my life. It has not been all bad, I promise. My husband has been my rock and never budged on being by my side. My parents and siblings understand and help where they can. Some of my friends stood up to help, and be there no matter what stupid shit fell out of my mouth. I have co-workers who keep learning and sending me information on the newest and lastest information on MS. But there have bee hardships and changes that have been uncomfortable at best.
I hope this helps even one person, and I will be writing more about living with MS, the changes and experiences going forward. Thank you for reading, and if you are in the MS community, know someone with MS or have questions, I am not a professional doctor just a writer with life experience.
Read part 2 here: https://medium.com/@wendycheairs/multiple-sclerosis-struggles-part-two-acd783e7b90a
