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Life......feeling trapped

I have been doing a lot of thinking about my life lately and I have been questioning what I am doing with my life, how this illness is impacting my life, where have I gone? I seem to have this constant struggle within myself....this need to do something. I am not sure if it is because I am having a hard time accepting aspects of this illness or if it is the type A personality in me that needs to have control over something or if it is the work-a-holic in me that just needs something productive to do each and every day (I rather enjoyed my job when I was working and was damn good at it). Justin says that I don't truly know how to relax (maybe he is right). I have worked since I was very young and many times I have held more than one job or worked while going to school. I have always been a busy, busy bee.

I have been without a job for a full year now and it has been the most difficult year of my entire life. Not because I have had financial problems but because I feel as if my life now has no real purpose, no real meaning to it. There have been many things happen over the last year within my family and so I have been grateful to have had the time off to help out, but maybe I am just not as good of a person as I once thought I was because that is just not enough for me. Don't get me wrong, I love my family and they come first. I would do anything for them, but I am sick of our lives being nothing but one health crisis after another (whether it is my MS, my sister's health, or my dad). Let's hope this next year here goes better! I know that the move here was the right thing to do as I could not have gotten through the past year without my family, and I don't think they could have done it without help from me either, but so many times I miss my life. I can't help but want my old life back....I just don't know how to be happy in this new life. This new life sucks!

Sure, some of this is from the MS and my not wanting to accept that life HAS to change or be different. I have a difficult time with that. Why should it be different? Why does it HAVE to change? That is a load of BS if you ask me. I know we have no control over our symptoms...but guess what? I have been dealing with illness for many years now (I had cancer before, asthma my whole life, etc.) This is not what bothers me. Why can't we still have a normal life anyway? My mind still works and my guess is that as long as I am following orders from my neurologist and doing the best I can to stay healthy, my mind will be good for a long time! Most days my body still works too (just parts of it might not work as well....or I am weak and it takes me longer.....or I am tired). So, why can't I work just like people who don't have MS and make a decent living and have medical benefits provided to me. The reality is I could still do that kind of job if a company was flexible with me...willing to let me work from home. Problem is there are not a lot of companies out there who are willing to hire someone to work from home. Everyone wants to micromanage! Not to mention....you hire someone like me and provide healthcare, well there went the premiums....they are based on the company as a whole. I did my internship at an insurance/investment firm. I know that they look at the company as a whole and if someone has an illness (i.e. Diabetes) the premiums will go way up....for something like MS or Cancer they may even be denied. This is part of the problem!

I know it is important to think outside of the box and consider things that I would not have done before.....things that would maybe allow me to work from home. Have you ever checked into working from home? It is a scary thing knowing what is real and what is a scam! And, of course I don't NEED a job....actually my doctors are the ones who told me to take time off because of what it was doing to my health to be so busy all the time. I just can't help it. I can't spend the rest of my life sitting in front of the TV (daytime TV sucks!), after doing my small amount of house cleaning that is, seeing how I do that practically every day. There must be more to life!

I don't really have any hobbies nor can I afford to have any (SSDI does not afford anyone to do anything) not to mention I just don't have any interests like that. Sorry I know some of you are big into knitting or sewing and I think it is great, but SO not my thing. If I was desperate I could sew on a button but I would prefer to have someone else do it. This is probably one of the things I miss the most about working (income, meeting people, being social). I miss being able to put some money aside and travel. That is what I LOVE! I used to just jump in the car at a moments notice and take off anywhere....Vegas, Colorado, Idaho, back home (Washington), or sometimes I would plan the trips. Sometimes I would even plan enough in advance (couple-three months) to surprise someone with a trip (my mom to NYC for her birthday, Nate to Yellowstone for a week). These are the things I miss. Being full of life, having good times with family and friends, and just being care free to live life as I want.

I apologize for this being depressing....as I am sure it sounds that way. It was not meant to actually. I just need to find a way to get some of my life back. I have lived my life in a way that I was always too social, outgoing, and free spirited to be stuck inside (if you will) for the rest of my life. That just doesn't work for me. Some how I need to find myself again.....some where along the way I have gotten lost!

5 comments:

Vivian said...

Oh Boy do I know that feeling of being lost. I know I don't have the illness thing myself but having three kids and two chronic diseases in my care, I so feel that way sometimes too. I really hate that you are feeling this way.
As for the work from home thing, it is hard to know what is a scam and what is real. I worked from home doing data entry and updating statements in the financial industry for a long time and then I had thought about doing transcription or medical billing as well but never got around to getting that going. Of course doing these things often means being a contractor which does not help the benefits part but would let you use your mind. Just a suggestion. I am sending you big hugs in hope that you find your way back to yourself.
Viv

Suzy said...

Jaime,
You are not depressing, you are being honest. I can totally relate to what you've written about. Sometimes I feel so, what is the word...insignificant?

My counselor has challenged me. She says to find something...anything...to fill my cup....to make me fill the needs inside of ME. It's not an easy task to be sure. What do I like to do? What am I capable of doing?

It's hard, I know. You have a great support system out there with your family. You're right though....maybe it's time to step outta the box? Challenge yourself to do something you enjoy, just for YOU.

Okay, now it's time to take my own advice! lol Wishing you the best girl....remember...God allowed these things to happen to you for a reason, and that reason is a blessing in disguise. Hard to grasp....harder yet to figure it all out. Isn't it?

~~hugs~~

Linda D. said...

I'd say "midlife crisis", but that would only mean you're living to 60!...Writing/sharing your discomfort is a great beginning in the process of sorting it all out. Keep writing...keep sorting, and it will come to you.

Linda D. over the mountains west

Zee said...

Good post, Jaime. I definitely relate - and I admire your honesty. Being so newly diagnosed, I'm still in the fear stage: fear that I won't be able to work, support myself, travel or do the things I want. There are just so many unknowns about MS and it affects everyone so differently, it can be frustrating to just not know!!!

As for the work-from-home thing, I actually work from home for a public relations company. The caveat is that I had worked for them for 5.5 years, then left for a year and a half and when I started back I worked from home doing contract stuff... when they hired me back full time I negotiated being able to work from home full time.

Even if you had to mention the MS in job interviews or whatever, there is the ADA that - I'd guess - would protect you from some degree of discrimination. I think they have to make reasonable accommodations. I'm no expert on this - just putting it out there. :) Might be worth looking into at any rate.z

personallog! said...

Trapped in a box track rocks! I know its No Dout and they are gay!Lol) but welcome to the next step! Your still human, a beutiful woman to boot, but this fight I can't really help with. You have to make the decisions here. Everone agree's with me! Think outside the box and it will come to you. I will be here for you babe no matter what happens!
Love you chicken!
Dave


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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