Fitting Back in To Life; The Difficulty

If you have been reading my blog you know I recently started working a job; retail, pretty much full time. It’s almost been 3 weeks since I started working and I very quickly learned a few things; I missed the responsibly of working and earning my own money, being busy helps keep my fatigue at bay, I don’t miss retail work, and lastly, people in everyday life don’t understand a chronic disease at all. I am both happy/grateful to be working and horribly depressed at the same time.

Yes. It feels great to be earning money on my own again. To not rely on a government check and be able to work for every penny; to earn an amount of money that reflects how much I work, it feels great. I missed that so much! Having it back feels great for that reason and because I was pretty much told I could not do something like this by a doctor. I love proving people (who think they know it all) wrong. I’m not in a wheelchair and I am working a rather physical job.

But here is the “but”. It’s wrecking me. There is no such thing as a consistent schedule in retail. They use you when they need you. Maybe one night you close and get out of work at 11:45pm and the next day you have to be at work by 8:00am. This used to be no problem for me before my MS days but now? I can’t handle it. I tried to do it, I hate the word can't but I have to be realistic and know/respect my limits or else I will only be walking backwards when it comes to my health.

Yesterday I felt horrible upon waking up. I had a rough night the previous night and I was feeling it. Still I went to work. I was fatigued, clumsy, I was in one of those moods where I wanted to just drop to my knees and start crying but I bottled it up and pushed through it. I ended up talking to someone who works in HR and let them know I might have bitten off more than I can chew. It was effecting my MS. I tried explaining how it was affecting me which is where it became depressing for me.

He was willing to work with me and adjust my schedule and hours but it was obvious he didn’t get what I meant by “I’m not feeling well”. I don’t blame him but I got the impression that he was thinking “you look fine and your not coughing or throwing up”. To which I try to say “I am not sick in a way that you can catch it but I don’t feel well”. That is not an easy concept for the everyday person to grasp but I felt like I was speaking a different language than him. I was not being understood. I told him that mentally I want to work al I can but physically my body can’t handle it and after more than 2 years without a relapse I was not going to risk pushing myself over the edge. I know he wanted to understand but I also know he didn’t. If it’s not a common cold than it can’t be that bad right? I wish I could have an hour to give all the employees a presentation on MS so that they understand that when I say “I can’t lift that down” they would understand why and know that I am not just being lazy. So that they would understand despite me not looking sick I am and I do have limits. I wish they all knew how far I have come in life to get to where I am so that they wouldn’t all give me a hard time for not being able to get as much done as they want me to. The store is crazy short handed and I am expected to do the work of 3 people (or more) and it’s so rough on me. I don’t complain though, I never do and never will. That’s just me.

Anyways it has made me realize I need to work on a game plan for a career. I can’t handle the running around from one side of the store to the other, dealing with 4 customers each grabbing my arm and pulling in different directions, a phone constantly ringing at my hip, a walkie on the other hip that never stops talking, angry customers, crying babies, where is this, where is that, did you get this done, stop working on this and work on that, that’s looking good but why is this not done? It’s wrecking me, I feel it everyday, I don’t feel healthy anymore. I am not living I am surviving.

I now know I would love a standard 8-4 job. CONSISTENCY. A desk job? I always thought I would hate that but now I am thinking it would be perfect for me. The MS Society’s headquarters is up in Denver (a bit over an hour away) and part of me thinks that’s a no brainer but I don’t want to work in Denver, the city, the traffic, that’s not what I want but maybe the stress of traffic would be less than the stress of retail? And I could feel like I am doing something in the world and not just cleaning the same isles over and over every night. I look at the other employees and think “they are kids getting ready to leave for college or a bigger better career or adults who have nowhere else to go.” I don’t want to end up stuck there, I want a career that has meaning. Whether that is speaking or working for an MS organization I don’t know, but MS is what I know, it’s what I am good at, so it’s what I should be doing. Not stocking shelves or checking for iPads that are on sale. I just need to figure out that transition because I have no clue.

I want to be around people who understand me instead of people who I feel may be judging me. I feel I am meant to make a difference in the world of MS and I am starting to feel like I am wasting that ability and not even touching it because I am too busy at work.

I feel out of place here. I wanted back into everyday society and I am now realizing it’s hardly for me. The knowledge and experience I have should have me working with and helping people. It can’t be applied to stocking shelves and ringing people up. It’s a waste of what I have to offer and that too is depressing me. I’m not building a legacy I’m burying it.