I miss my life

I remember dancing, parties, staying up late.  I remember having a life. 
I remember a career where there were no barriers to what I could accomplish.
I remember being outside for hours and hours enjoying the day.
I remember concerts and loud bars.

But, my illnesses have always gotten in the way -
I remember migraines on my honeymoon.
I remember sleeping all the time and not being able to stay awake to play enough with my kids when they were little.
I remember fainting at concerts, plays, out with friends.

I miss being able to spend quality time with my husband.  We still do but my illnesses get in the way and he worries about how I am or if he is pushing me to far.
I miss traveling - mostly reduced now because of medical bills putting me in debt rather than the illnesses themselves.
I miss having conversations with my friends about love, life, and the world where it doesn't come around to them wanting me to update them on my latest progress or unprogress with my migraines.
I miss having something to say that didn't end up being related to one of my illnesses.

But, I am grateful -
I am grateful for my body forcing me to slow down and start putting myself first.
I am grateful for my doctors who won't give up on me no matter what.
I am grateful, immensely, for my husband who takes such excellent care of me and loves me so much.
I am grateful for my acupuncturist and migraine massage therapist that give me a few hours of relief.
I am grateful that my family is so caring and understanding.
I am grateful that my children, now almost grown, are such incredible and caring people.
I am grateful that my work allows me to work from home and continue my career.
I am grateful for all the friends I have made that have conditions of their own that help me not feel alone.
I am grateful that my friends care enough to ask how I am doing and that they never judge me.

My life has changed, but wouldn't it have anyway as I grew older.  Less parties, concerts, etc are bound to happen.  Changing relationships with your children are bound to happen.  Everyone makes mistakes and wishes something was different about their past or about their lives. 

I have been able to do more of the work that I have wanted to do because of my illness changing my career path and gave me the gumption to ask for the job description I have now - with less stress and more research and consulting - more international tax consulting and less day to day the same returns.  I love constant learning and becoming better and now a lot of the other monotonous work is out of the way - thanks to my illness and thanks to my doctors who insisted this was the only way I could work - that or disability.

I cherish times when I feel better and am able to do more, go shopping, hang out with friends, etc.

I go through ups and downs where I feel my life is over to where I am grateful for what I have and see benefits to my problems.  But, doesn't everyone have their ups and downs?

Three things I want to focus on changing to make my life better -
1) Getting my friends to think of me as more than my migraine and talk to me openly about their problems and talk like we used to.  Solution?  I've tried to tell them, but they care and want to know and it takes so long to update them, it turns into our entire time.  I've tried to not update them and they are hurt by that.  Maybe a good solution is a weekly email to all saying this is where I stand right now with my condition, now, you have the info, so when we talk, let's talk about other things.  Sounds like a good idea, I'll put it in motion.  I still will complain on twitter to my #spoonies to get support there but will also try to be positive and upbeat until I hit a major downspell and even then my friends will get to listen to me complain.
2) Spending more quality time with my husband.  Make more of an effort.  I have let things slip in our marriage that it's more about taking care of me then a two way street.  Now, I am the breadwinner, so I do my share bringing in the $ and that is taking care of him in a way.  He's an artist and I'm a CPA so he brings in wonderful things and interesting things and I bring in $.  I need to be there for him in other ways.  Don't get me wrong I try very hard right now but I can't get him to open up a lot of the time because he worries that we should be focusing on my pain and not his needs - that he'll be fine and doesn't need to talk, etc.  Enough of that - I have to be more forceful and despite my pain make efforts to do things with him even if it increases my pain for a time.  He has opened up that he sees I can pretend, very well, to clients, work colleagues and friends that my pain is not as bad as it is, but with him I open up.  Part of that is that he is my comfort.  But, and I don't want to lie, I need to give some of that to him.  I'm in pain but we are spending time doing some of the things you want to do and ignoring the pain for a little while.  I need to do this daily.  I love him and he deserves a wife.
3) Learn to say  no and get in control over the stress factors in my life.  I seem to like the part of work where things have to get done and done now and it's really important and all that stress.  But, I don't like the increase in symptoms or the let down from stress migraines - I have to have control first.  I can work on challenging projects and have reduced stress if I take control rather than letting the work take control.  I can't take on the stress of my colleagues and let my guilt and wanting to help them and ease them get in the way of my health.  I have to put me first.  I need to set boundaries and protect them better than I have.  I have to feel accomplishment for what I do and be proud of that rather than searching to please everyone more.  I do a great job and that's good, great enough.  I don't have to be perfect or solve everyone's problems.  Every morning I will say to myself "I am in charge of my schedule and I won't take on the stress of my colleagues.  I will accept the projects that fit in my schedule reduced as it is by my illness and will not feel like a failure or like I am letting people down.  That will only in the end let myself down.  I will put myself first - and remember the job I do is not life or death." 

I will continually have to come back to my thoughts and re-commit to my plan over and over.  I have to accept I will backslide and cannot blame myself for that.  I am ill.  I will cherish and pat myself on the back for the accomplishments I do make.

I will continue to grieve my old life in some ways and sometimes but I will not let that grieving continue to take a front seat.  I will focus on what my life is and will be and the joys and wonders that are to come.

Here's to all of you out there dealing with your own illnesses and problems.  We are stronger than we think we are.

Much love,

Elizabeth