What was I thinking?
I am going too far down the medical road and I’m just getting sicker.
I’m depressed because I’m always home and have no plans for my future. But I can’t tell what’s caused by my illness itself and what’s actually caused by all the medications I’m on, since all of them list side effects similar to what I’ve called my MS symptoms.
Somehow I let the doctors convince me that my resistance to medication was paranoid and anti-science, and I should just start taking even more medication and let them help me. Be a good girl. *pat, pat*
And they almost had me completely convinced that I couldn’t trust myself or my own gut feelings or the extensive, exhaustive research I’ve done.
But I decided today that it’s definitely still within my power to turn things around, so that’s what I’m going to do–starting now.
Instead of getting on the disease-modifying drugs, which completely terrify me, I’m changing what I’m doing, since there’s no cure either way.
So my first step is to wean myself off my current medications. The two medications I’m taking every day to reduce pain and muscle spasms are most likely causing a lot of my cognitive problems and memory loss. A third medication I’m on is also contributing to my memory loss, dizziness, and poor balance. Unfortunately, with one of my meds, I have to taper off of it very slowly so I don’t have seizures.
When I was taking super high-dose steroids last year to try to reduce the inflammation in my brain, I didn’t know that the steroids themselves were also making me worse in terms of cognitive function and physical pain. Why didn’t I research them? Why did I take the doctors’ word for it? I mean, I did a cursory glance and saw that long-term use could damage my bones and cause insomnia, but you have to search specifically for steroids + pain or steroids + cognitive issues to find that out.
I thought I’ve been much worse in the past year because my illness has rapidly progressed, even though I have no MRI or other test results to back that up. But actually, in the past year, I’ve been more heavily medicated than I ever have before in my life. The medication side effects actually do explain a lot of my symptoms, especially when you account for the multiplicative effect of taking several.
The only other time I was medicated to a similar degree, I was in college. I had one semester when I was so sick that all I could do was sleep. I lost a ton of weight because I couldn’t eat. I was on regular high doses of tramadol (Ultram/Ultracet), which is also a drug that can cause cognitive problems and memory loss. I now remember virtually nothing of that time period and honestly, I seriously don’t know how I graduated magna cum laude, given that semester.
I don’t know how much of my memory loss always existed and how much has started in this past couple of years of being heavily medicated. I’m careful not to blame the meds for everything; I do indeed still have MS and depression.
But the getting weaker and more easily confused and unable to function without at least seven hours of sleep (preferably up to 10-12 hours) is new. I was better just a couple years ago. I started taking some of the meds I’m on now about three years ago and added more meds last year.
I honestly don’t believe diet is a cure for MS. But the fact remains that I’ve gotten a little more lax about my diet since my husband has taken a second job. I also need to do more strenuous exercise than just walking, especially because my back and core have gotten weak. I have gotten the most toxic and stressful relationships out of my life, too, even if the process of doing so was initially painful and difficult. I’m on the right track but I need to be more committed to doing better.
I think I can really turn this around. I really do. Maybe not a cure, but I think I can be healthier and more functional if I take better care of my health on several fronts.
As for my future, I’m planning to get back to where I was before I got sicker and was hospitalized last year. Specifically, I want to go back to grad school.
I really don’t want to be a writer anymore and I already know that. I like making soap and crafty stuff as a hobby, but I really don’t have an entrepreneurial spirit and don’t want to run my own business.
I want to work again, even part-time, and I really desperately don’t want to continue being a freelance writer. I just don’t know how I’ll arrange transportation for my kids otherwise until we can get an extra car or two so my dreams may have to wait two and a half more years until my youngest graduates.
So now I just have to decide what I want to study in grad school. I’ve said all along that if I got disability, I wanted to work part-time in a library. I already tried grad school for library science twice and quit because I was basing its value on the lousy job outlook for librarians in Michigan.
While there are more jobs for librarians here, they don’t pay all very well considering they require a master’s degree. If I looked and waited, I could probably get a full-time library job without the additional degree that paid nearly as well. I’ve seen similar jobs before and even got an interview for one. (Seriously, some librarian positions with the masters degree only pay around $40K. Not sure that’s worth the extra debt for the grad degree, although simply having a graduate degree would be a point of pride for me.)
I could also get a specialization to be a medical librarian, which would be even better. I already know that libraries in general are the work environment that suit me best. But a medical library is the only environment that seems like it might be even better. This specific dual-degree program in library science and health science has courses in epidemiology and ethnic and cultural factors in health delivery! Both of those courses excite me, but the latter ties in especially well with my undergraduate degree in sociology.
I don’t think I can make massive changes in my career direction at my age (e.g. I don’t think I could go back to become a labor and delivery nurse), but libraries and public health outreach are both within the range of what I’ve done before.
I also still want to be a therapist and that’s attainable. I think I’d be really happy with it. I was already planning on going back to work in that field even if it was only part-time. But honestly, I’ve wanted to work full-time all along. I have a good feeling of hope that once I get off the meds, I won’t be showing as many signs of disability.
When I had my full-time job in Downtown Dallas, I wasn’t on any meds until the last month or two. It was admittedly hard for me to learn the new software for which I was providing tech support, so clearly my brain isn’t as sharp as it once was, even without meds. However, the job itself wasn’t as draining until I got on meds. I’m pretty sure the stress of an unstable department and a high-strung boss led to an MS relapse and it went quickly downhill from there.
But the things I always knew are still easy for me and I never lost them: working in libraries, researching medical stuff, and writing.
I don’t know if I’ll try to work in a library or therapy role while going to school for my master’s degree or if I’ll just try to take it slower.
I don’t know how long it will take me to get back to normal once the medications get out of my system. Some things I’ve read have said months, but I am also stubborn and I can push through a lot.
If I somehow get approved for disability on the first round, I may use that as a transitional period to get my health back before I return to work. Especially because disability pays for a certain amount of extra money to help you get back to work, whether it’s additional education or therapy you need.
But honestly, I’m still hoping I can eventually work full-time again soon. It’s what I’ve wanted all along and I was so depressed at the thought that I’d never get to again.
I came so close to giving up on myself forever. Thank God I figured it out before it was too late. I’m going to take control of my health and my future again, and I think everything is going to be alright.