I wanted to write a bit more regarding living with chronic illness and the challenges involved with that. I’m one of those people who “don’t look sick” and since starting a new job this summer, and dealing with a couple health issues at once, it’s been a tough balancing act to sort out. I hope that by sharing my thoughts and my experiences that maybe someone else out there will feel less alone, and you’ll find what I have to say useful in some way.
If you’ve followed my blog for awhile you’ll know that I was officially diagnosed with relapsing remitting multiple sclerosis this past spring after a couple years of suspicion that I had this disease. I also have recurrent orbital myositis, and ehlers-danlos syndrome. I like to refer to my health as a hat-trick of crap! It’s a real struggle to deal with 3 chronic conditions. Now that my eye condition (orbital myositis) is more-or-less under control from a flare-up this past spring, my attention is back on my joint issues and the MS which for some reason has kicked it up a notch. For the last few months I’ve been experiencing numbness, tingling and heaviness of my feet and legs along with dizziness/lightheadedness, fatigue and cognitive problems. I’d like to spend a few minutes talking about it.
It is starting to dawn on me that this is my new normal and that my new normal sucks! MS is a pain in the ass. I hate feeling disorientated by both the dizziness and the cognitive problems. I’ve started a new job and I’m finding it challenging because of the cognitive stuff. This is something I wasn’t really expecting because the job is very similar to what I’ve done in the past and I thought it would be a smooth transition. It has been in some ways, but it’s frustrating me in some others. I have a hard time with word-finding. For those who don’t have MS what I mean by cog-fog is that my thoughts aren’t clear; I have a difficult time finding the words I need to communicate with people, I forget conversations which leads me to repeating myself over and over, I don’t remember where I put things, I can’t remember what I did a few weeks ago, etc etc if it is memory related it’s a problem! and the word-finding issue makes me sound like an idiot and then I get embarrassed. It’s extremely frustrating. Probably the most frustrating thing I’ve dealt with so far. I used to have an excellent memory, and I’m rather wordy… hence why I like blogging. I like to write and read and think! It’s making me nuts that my lesion-riddled brain is having a hard time connecting the dots between what I want to say and what actually comes out of my mouth… and then that I immediately forget what I’ve already said and start repeating it. Not cool.
The physical symptoms of my legs feeling like they weight 30lbs more each than they actually do, stumbling around a bit, and being dizzy is odd enough, but the cognitive stuff is way more annoying.
With work it’s hard to know whether to tell my manager what’s going on or to keep it to myself. I don’t want to disclose that I have health issues because in my experience that is a slippery slope. I don’t look sick so people think I’m making it up, or being lazy. I look healthy and people expect me to be able to work full-time like other healthy young-ish people can. I’ve already been put in a situation where my employer expects me to work full-time hours (technically my position is as a casual employee but they have lots of shifts to fill. I’m not obligated to work anything I don’t want to which is part of why I took the job as a casual, but they’re also not obligated to give me any shifts so it might be a feast-famine situation) and I’ve had to say several times that I only can work 3-4 days a week but they still keep pushing me for more. I haven’t elaborated as to why I won’t work full-time other than vaguely insinuating that I have farm work to do (partially true!) But my coworkers seem to have the opinion that I’m either a) well-to-do financially and don’t have to work which makes a couple of them jealous or b) lazy or c) they don’t know what to think of a seemingly healthy 30-something who doesn’t want to work full-time and give me puzzled looks whenever it comes up. I’m not sure whether I should speak privately to my manager and tell her what the deal is, or if that’s a bad idea, but the fact is that working full-time isn’t working for me. I have to look after my health first or I won’t be working at all. How to accomplish a 3-day work week is something I’m still sorting out.
The other issue I have asides from my symptoms is that I need time for doctors appointments. I see a lot of doctors as I’m sure you can imagine. I have a GP, rheumatologist, neurologist, ophthalmologist etc. and I need to see them on a pretty regular basis not to mention all the other tests that I get sent for here-and-there. Getting time off work is a problem so working 3-4 days a week leaves me with some weekdays that I can schedule appointments. I recently met an older lady who hadn’t seen a doctor in 30 years and it hit me that my life is very medically-involved. I can’t imagine waking up every day feeling alright, going to work full-time, having energy for family/friends/hobbies, and just living without disease. That’s so totally foreign to me. I will admit that I get a ping of jealousy when I think about how most people are just going about their lives feeling good. If you’re one of those people, enjoy that!!! Appreciate it! I wake up every day and take an inventory of what hurts, what’s numb, how dizzy I feel, how tired I am, what I have to do that day and how to pace myself to get it all done, and that’s all before I get out of bed. Then the rest of the day is spent trying to live as normally as possible battling weird symptoms, pain, and juggling doctors appointments.
I try to keep a positive attitude and stay friendly to everyone I meet. I like to make jokes and try to get people to crack a smile while I’m at work. I work in healthcare and I know how frustrating and stressful it is for patients, so I make it a point to chat with them as I work and put people at ease and I think it helps. Sometimes I share a bit about my own experiences and people seem to respond to that. Some folks seem to feel better knowing that the person behind the desk can relate to them personally and their situation, and some don’t but that’s alright too. I’ve learned over time and practice to judge the type of person I’m interacting with and behave appropriately. I find dealing with the patients rewarding and probably the best part of my job.
Right now I’m facing a difficult decision to which there really isn’t any right answer. I don’t hate my job… I don’t love it, but I don’t hate it. If I can get the hours sorted out a bit better then it works for what I need right now. However, I’m supposed to be starting university again and I’m struggling over whether I should continue to pursue more education or not. This has been weighing on me for months. I’ve been going around in circles trying to decide. The cost of getting my degree versus not getting a degree and continuing to work while I can is what’s got me confused. I finally found a program that I’m interested in (Therapeutic Recreation) and that would be a good fit for me as a career. I like university, and I’d get to meet other students and make friends (this is a big thing since I’m pretty isolated after moving across the country and not knowing anyone here besides K.) I’m pretty confident I would find work after completing my degree, and that I’d enjoy the work. The problem is that my MS has been kicking my butt this summer and making me really question whether the stress of classes/exams etc would be too much, whether the cost of getting the degree is worth it (this is huge!), or maybe I should give it up and just keep working while I can. No one knows what course my MS might take. I may be functional, working, and feeling good for years and years, or I might wake up tomorrow and be disabled by it. Oh to have a crystal ball! (I wonder if they sell those on Amazon…) and trying to make major life decisions with so many unknowns has me all tied up, completely unable to decide. On paper (many pros-and-cons sheets later…) I would expect to break even on my degree about 10-12 years down the road (after paying off student loans, and making up for the lost wages/savings etc that it will take for me to get my education) versus if I keep working my so-so job and don’t go to school. It would all work out to be about the same financially until that 10 year point. Then if I have a degree and am still working I would start seeing a profit. But that’s a big “IF” because statistically, relapsing-remitting MS will change into secondary progressive MS (a more seriously disabling form) in about 50% of cases within 10 years. So I have a 50% shot of either being more-or-less the way I am now, or facing disability within 10 years that would likely prevent me from working. I’m sure by now you can see the problem of whether or not I continue my education. I’m going to be on disease-modifying medication to hopefully slow the progression, but there’s no guarantee that it’ll work, or for how long I’ll be employable.
Then there’s the issue of stress. Stress makes MS worse. It causes more relapses and flareups of symptoms. University is stressful. I won’t have time or energy to do anything except focus on my studies which is challenging. If I don’t go back to school I can work my 3 day week (I hope!), then spend down time doing my farm stuff, riding a bit, pursuing other interests and my bucket list! But I won’t get to have that rewarding career or the experience of going to university which I’ve wanted for awhile.
So around-and-around I go… I’d like to get off this ride now! There is no “right” answer and it may just come down to tossing a coin.