Sometimes, especially on my bad days, I find myself wondering who I really am anymore. Who I was before CRPS is not who I am now AND that causes me more pain than any flare up ever could. The old Jamie was dealt the first fatal blow on January 26, 2015. That was the day that everything began.
I’ve had more than one person tell me not to dwell on who you were, but it’s advice that is far easier given then followed. I’ve also been told about how you can grieve for who you were. This is where I become conflicted. How can I properly grieve for who I was without dwelling on that person some? I know there is still a lot of grief in my heart for the things I have lost and the things that will never be.
I was truly proud of the person I was and I don’t want to forget or lose that pride. I try to stay positive, but it is far harder to focus on the good things when you are battling disappointment in how things have turned out. I had my future laid out for myself in my head, but the foundation has crumbled beneath my feet. These days I don’t know how to move on and pick up the pieces. Everything seems so overwhelming and complicated.
Don’t get me wrong, I have great moments of happiness and joy in my life, but those moments are fleeting and hard to hold onto. My happiest moments are when I am able to help someone else. At those moments I can feel a hint of the pride I once felt and a small part of the old me coming to the surface. If I can share a part of my story and give someone else the feeling they are not alone or abnormal, I start feeling better about myself. I get the same joy when I am able to make my nieces smile even though they are learning something challenging. Between these moments and my cats’ antics I can smile more.
I want to share more about the person I was so that you (my readers) can maybe understand some of my grief. I also want to begin documenting the things that have changed. Maybe the chasm between the person I was and the person I am won’t feel so vast if I begin to write it all down.
Before & After CRPS (In No Particular Order):
MORNINGS – I used to love them!
- BEFORE: I truly was a morning person. I tended to get up early in the morning most days, even on weekends. I had the freedom to pick my start time at work and chose to start my workday at 06:00. I enjoyed the peace and quiet of the office in the early morning hours and got more work done in the two hours before 08:00 than I did the rest of the day. On Saturdays I would sometimes “sleep in” until 06:00 or 07:00, but rarely later than that. I routinely start laundry shortly after I got up, so I usually had laundry done, folded, and put away by 12:00 pn Saturdays.
- AFTER: Most days it’s a challenge to even get out of bed. Shortly after the injury that caused my CRPS, I could no longer manage to get to work early (this was prior to my extended medical leave of absence). If my pain didn’t keep me awake all night and I was able to get up, I could sometimes manage getting up by 08:00. BUT then I would have to rest my bodu for a bit, then do my makeup, then rest, then put some clothes on, then rest, the put the remainder of my clothes on, then rest, eat breakfast, rest, gather work stuff, rest etc. Each and every little task I do in the mornings (anytime really) wears me out to the point that I will need to recover before moving on to the next task. All this resting and restarting makes my mornings tedious. When I was still working, I found that on most days I had trouble making it to work in the mornings. I would be slowly making my way to my desk while everyone else was leaving for lunch. NOW I just simply dislike mornings and most days I won’t get out of bed before 10:00 (if I even get out of bed). I am definitely not a morning person anymore!
CLEANLINESS – I used to always do my chores as part of a set schedule and routine!
- BEFORE: I’ve already described how I would get up early on Saturdays and do laundry, well if I somehow missed doing laundry on a Saturday morning it would drive me crazy. I also tried to gwt housework accomplished prior to leaving for work. Every single morning I would scoop out all of the litter boxes (I have 4 cats and they were spoiled by thos daily routine). Again it would really bother me if I forgot to do that each day. I also generally did the dishes in the early nornong hours before work.
- AFTER: It’s not that I don’t care about the state my house in, it’s just that I don’t have enough energy remaining to be as worried about it — That and I can’t do most of the chores. My husband has to pick up my slack, which is really unfair to him. I can’t do the litter boxes at all because I have trouble bending down tgat far. I can do laundry, but usually need help carrying the laundry baskets to and from the washer and dryer. I can only find the energy and motivation to do the dishes when I am pissed off. I remember vaccuming all the carpets one fall day as I was coming down with the flu, it may have brought all the symptoms on really quickly but I was still able to do it. Now I can’t even manage to vaccum one room. My husband tries to do the chores, but he is just one person and is not driven by rotine like I was. So these days the litter boxes get ignored until they are full, dishes begin to pile up and oftentimes don’t get done again until I am in the midst of anger. The carpets are not vaccumed as often eithet. My house feels like it is in shambles and the neat freak in me is silently seething, but my energy levels keep me from being able to dwell on it as much. So if you come over, I am apologizing in advance for the state my house is in.
ALWAYS ON THE GO – Once upon a time I enjoyed running around and staying busy!
- BEFORE: I’m a skeptic with a science background, so I don’t generally quote the Bible, but the phrase “Idle hands are the devil’s workshop” actually had a meaning for me. I used to tell people that “you won’t like me when I’m bored because that’s when I get in trouble.” I adored my last job because I was rarely bored, if I finished one task I always could find more to do (I had a lot of side projects). My first position at the aerospace company I worked for in Oklahoma was akin to being an executive assistant. I worked for a program manager for one specific platform and because I ran his meetings and prepped all of his briefings for him, I had to know a lot about our program. It also meant that I spent a lot of time chasing after managers and leads to ensure that the information I provided was both accurate and up to date. Some days it seemed like I never stopped moving, as I would be running from meeting to meeting and person to person.I also kept picking up responsibilities, especially when I noticed tasks that were neglected. I updated and redesigned not only the website for my program, but for at least 7 more programs and the overarching group simply because I decided to fix my program’s website which the director overseeing all of thosr programs saw and liked. I also picked up risk management, lean management, and records management tasks as well. In 2014 I accepted a role as a project manager for my program, howevee my other position remained unfilled so I continued doing that jpb as well. To re-emphasize, I LOVED MY JOB and was hppier than ever because I was always busy! To replace me in my old job, which only happened after I got ill, they had to assign my duties to three different managers and hire another person to do some of my more basic tasks.
- AFTER: My energy levels took a huge dive after my injury. I could barely do my new job, let alone my old one. All of a sudden I couldn’t keep up with my tasks and would get so tired that I would have to go in late and leave early most days. I tried to keep up with work for most of 2015, but things progressively got worse. By the time I took medical leave in November 2015, I would spend two days recovering for every day I worked. Running around after people was no longer an option either. I would generally have to ask people to come to me.There was also no possible way I could handle my side projects. Everything I do now requires lots of rest and I am generally too tired to feel bored.
This is by far an incomplete list, but I could go on forever about the many changes in my life. The goal with my blog is not to gain sympathy, but to gain understanding of the impacts of this illness in my self for both my own knowledge and so others can learn a little bit about it. Complex Regional Pain Syndrome is a rare disease and one that unless you have received a diagnosis you may not have heard about it. My true intent with writing this is to get more people aware of CRPS. The odds of going into remission increase significantly if you are diagnosed and begin an aggressive treatment plan within six months of diagnosis, but this doesn’t happen with most because of the lack of knowledge about CRPS.