Monday, September 9, 2013

Big Topic: Facing Reality

These past months, since about last November, are the toughest on record in my battle with multiple sclerosis. relentless, close quarter, bare knuckle fights that are ongoing. I am currently having an exacerbation, am on home administered steroids and have lost another chunk of function. Now it is time for me to say a few things and ask the people in my life to consider them and think about how they want to move forward.
A wise person had the insight that my reality may be entering a phase that is too real for folks to handle. I would like to remind folks of a few things, share a few strategies, and if I dare, say what works for me going forward in what are probably the last few years of my life.
Reminders: about my MS

  • I am in pain, serious nerve pain, all the time. 
  • I have accelerating chronic cognitive issues 
  • I am in bed at least 15 hours a day.
  • All 4 of my limbs are now fully involved to some degree.
  • I have chronic pervasive clinical depression.
  • I can eat only a handful of foods and have grinding nerve pain in my stomach.
  • I have countless other symptoms.
  • My health is only going to worsen in the coming months, and years. Whatever time I am blessed with.
Reminders: about my MS and others
  • You look so good-how sick can you be. I no longer have it in me to explain this illness over and over or my experience of it. If you don't understand MS cognition or another aspect do some research, or send John or I an email. He does great research and has a deep clinical understanding of my health. If I don't come across as sick as you expected, either read through my blog, or do some research focused on the invisibility of MS, or just be a part of my life. When I have the joy of company, I rest for as much as I can then pour myself into the visit. My type of cognition issues doesn't affect personality or intelligence. It does make me forget who you are while we are talking on the phone so I jot your name down at first or by the end struggle to place who you are. After your visit I may sleep for hours or be wiped out for days. Refer to the above list or ask me specifically about the state of the MS or my pain. I rarely bring it up in social settings. I would rather be as normal as possible when I see you. Don't confuse me being social with a statement of the status of my MS. And please don't pass your guesses and feelings around as facts or share confidential details with others. If you were here and I spent the afternoon vomiting, I don't to want to spend the next week hearing back from others all about it. 
  • It is more than OK, even encouraged, to make your own way in relating to my MeSs. Look, I am the only person who has no choice on the 'all in' starring role in this all to real reality series. No one else has to do anything else. I am so fortunate in many ways. I have a long-term abiding faith that sustains me. I am deeply grateful to all who do so much for me. Many folks fill myriad niches.
  • At the same time, as the one year mark nears, it is a good time for everyone to evaluate if and how much they are up for the 'real' journey. It is ok to decide you can't be involved or that you want more. If you want off the blog reader updates, send me an email or just delete it. If you ever have any questions, email is best. Phones are tough, but not impossible. If I call and ask you for a favor, No is a perfectly Ok response. I have a big list of helpers. And, if you need respite from my reality, please take it. I don't have the need to know the whys or have a dramatic conversation. I will miss you, but I will be OK.
Reminders: about my life with MS going forward
  • I am in this fight. I want to experience the best life I can with as much sass and verve as I can. But most of that pep is slipping away. Now I am finding that quiet and peace and rest are the reality that suits me best.
  • I have dreams. I have things and people and my God who make life livable. Life isn't just doom and gloom at our home. But it certainly takes the lions share of our resources, energy, spirit, and everything else to survive.
  • I need people to have any hope of surviving what is ahead. I also want to give folks permission to design what that is for them. In my life or not, a little or alot. Figure out what works for you. Keep in mind that I have lost the ability to remember appointments and return phone calls reliably. This is an area that I need help and grace with. Throw out the etiquette book and keep calling, then follow up with an email.
So to put it plainly, I am writing this today 1) to be as clear as I can about what is going on with my health currently and in the future 2) to ask all the people who are in my life to evaluate if they want to involved in this journey 3) to state what I need from this point forward.

It would be easy to respond to me with a 'love you always going to be there.' But it isn't easy to do. Everyone has there own struggles and lives to manage. And my MS is in the messy stage. Really take a deep think before you commit to more than you can honestly do. Only respond if you are moved to. I am not writing this seeking volunteers or money or a mansion. Simply to bring up the hard truth that my body is failing and everyone should be preparing for that in their own way and if they want to be involved or not.

I am too tired to write anymore. Feel free to email or comment. Big topic, hard to explain and harder to talk about.


Anonymous said...

Dear Janine,

Thank you. Thank you for being so other-centered when you are so deeply in the mire of pain. Thank you for giving us a road map to be as much on this journey as possible.

I do love you!!


Kim @ Stuff could... said...

You write so well of the hard parts of this life...what to do now. So sorry you have to stay in bed so long, I get so tired of 'resting' but I have to.