Due to the wrath of Multiple Sclerosis, I left my husband in Silver Spring, Maryland, and temporarily moved in with my parents in Gonzales, Louisiana. I give you the entire scoop in My Story. It was during that stay when I first turned to writing to keep me from completely losing my mind!
I stumbled upon an old journal entry from early 2010. I was fairly surprised to see what I found.
Friday nights are the hardest. I miss Tom. My dad is sleep. Mama is on her PC and/or the phone. She’s probably doing homework with classmates. She’s getting a Master’s degree.
It’s 9:58 Friday night. I’m pretty restless. The odd thing is, if Tom and I were together in any state we would most likely be doing something similar. Him watching TV and me working on this damn laptop. We stopped going out on Friday nights a few years ago. We use to call them “Fun Fridays” Pretty lame. I know.
If I could just drive everything would be better. I know it would. I want to leave this damn house. That is, on my own terms. I want to make it clear that though I complain, I am grateful. “The struggle between Damn and Thanks” is my daily reality. If I could just drive!
The interesting thing is at that very point in my life I was so much more physically disabled than I am now! Can you imagine? I thought the answer to all my problems was driving.
I wish!
I mentioned leaving the house on my own terms, because I never really wanted to be relegated to my parents home without my husband. I had Multiple Sclerosis to thank for that! When I was in Maryland, Tom and I lived in a third floor walkup apartment building. If I stayed there any longer it would have been a fire hazard at the least and just getting from the apartment to the car had become a 10 minute ordeal. LOL! At the time it just felt like I was being kicked out.
I was in a wheelchair and lived on the third floor.
Now, almost two years later I think I have finally gotten over not driving, but I do still feel a bit isolated. But I’m really not!
I think I just like complaining. Smile!
Dearest Friend…I have been so amiss in keeping up. All tangled up in my own life and challenges….having my 3rd child at 42 after having this disease for 22 years. The fears, hopes, “Oh my God” moments ( God is my light through this life) and just knowing that Yes…I feel fantastic during pregnancy and have not had one symptom (5 months pregnant with my first daughter) but I know what happens after the c-section. I feel guilty often for having had such a mild case of MS at least for the past 10 years. Not Joy but Guilt. I have gotten over waiting for the other shoe to drop or waiting for “the big flair up that will end life as I know it”. People who know I have MS often have unrealistic expectations of me or maybe I have unrealistic unexpectations of myself. I don’t dare “Complain” about fatigue or constant UTI’s or the host of other sysmptoms I typically experience when I am stressed or tired or hot. I am quickly hushed or criticized or told…”but you seem so normal. You SHOULD be so grateful that you can still…….”. I am grateful. There is that NORMAL word again. What is NORMAL anyway, right? Nicole, I can drive and walk and I still feel lonely and isolated. I woke up at 5am to have time to myself before waking up the boys for school. I am beyond grateful to have opened your post first because my whole state of mind is different…in a great way…then when I first woke up. So, thank you dear friend.
You see one of my very best friends is pregnant with her first child and in her young twenties. She reminds me of myself “BMS…before MS”. She is a planner and feels best when she knows exactly what to expect and can plan accordingly. She gets most upset at me when I have to cancel a lunch or get together with her because my fatigue is too great. I have tried so many times to explain that MS often prevents planning and when I am not pregnant, each day can be different. Each day we all adjust to our new normal with this disease and although I really want to meet for lunch, my body has different plans. Last Thurs. night while on the job for Entergy her 26 year old husband was electrocuted and his brain went without oxygen for many minutes. There has not been a day I have not grieved for all my friend is going through and the uncertainty he faces. Today, he is at an acute care facility while she and his family wait for him to come back. He is in a vegetative state but opens and closes his eyes and shrugs his shoulder. Noone knows if, when or what his new life normal will be but without a miracle his prognosis seems poor. Life is not Fair. MS is not fair. Bad things happen to great people and at some point we all are touched by the randomness of tragedy. I know I have been all over the place and I apologize. Needed to vent and try and wrap my arms around what is her new normal. I guess it is what we do with life’s random tragedies that matters. Life is for the living. I love you Nicole and will call when it is not 6:30 to make a date for a mani/pedi!!!! Love, light and countless blessings to you.
Nicole,
I read your blog out of curiosity, because of its name –The Joy of Complaining. I have never felt joy in complaining, nor felt joy in hearing others complain. I have had MS, My Strength, as I call it, for 39 years. I have many days that are not as wonderful as I would
like. On those days, instead of complaining and being miserable, I reflect on the good things that I have accomplished in my life and of the ones that I have yet to do.
I am the chairperson of an MS selfhelp group. As a group it has been decided that we don’t want to hear each other COMplain. We can EXplain. The two are completly differant and as a result you receive POSITIVE feedback on how to IMPROVE
your situation.
Fact: I have had MS for 39 years; I am bowel and bladder incontinent, so I time my outings and wear my “big gurl pull ups” as my 4 year old grand daughter calls them.
I have 2 electric wheelchairs; one that is for 10 yrs old and for getting me around our 9 acres of property (where I find solice sitting on the ground weeding, or just “propped up” on a less than wonderful day, observing all that God has created for us.), one that I use in the house. I also have a pair of fore arm crutches and two lovely canes that coordinate with my clothing. I use either the crutches or the canes when I am having a fantabulous day–meaning I can walk to the bathroom, get out of bed on my own,
Kudo’s to Goeff, who stated “Just remember to try and take down what ever walls you can.”
Thank you,
Susan
Susan,
I love your comment and Will truly give it a try. If you nose around my blog you’ll see It’s not full of complaints! Check me out and see what you think. I know you explaing explaination Will HELP with
my husband.
Nicole
hi, nicole…just stopped by on my way to bed, have a good weekend!
Libby Bill,
Always good to see your name!
Nicole
Nicole
Your post inspire me – when i grow up I want to be a writer 🙂
I journal but inconsistently – I try not to complain but here lately I am frustrated and find myself complaining more and more – the spactisity is the worst – for 5 years MS was just something that forced me to take a needle now she is misbehaving big time – so disability is looming in my mind – not one to be a quitter though – I still out my big girl panties on and forge ahead – but in the car on the way to work when no one is watching and the radio is up loud I am lonely and feel like no one gets it- then i just irritate myself for the pity party and start all over again – really its quite comical – I am a mess lol – I do agree with other posters though lonely is a frame of mind – it is odd to be in a room full of people and still feel alone – happens to me all the time – I guess it is true – from the outside looking at me one could not understand and from the inside I cannot explain it –
PS – I am having be nice to my husband week next week – because just like you say my husband gets the brunt of my annoyance – so next week no matter what I am being super nice and buying him cards and small presents making him his fave dinners and not talking about MS at all – heck I may even let him watch a whole football game without talking during it – well maybe that is too much – he may think I have really lost it LOL
I feel I am becoming a burden to my husband. It’s not a good feeling at all I don’t know how to combat the feeling we have been through a lot in our 20years but MS seems to make me feel we are living to seperate lives now and I don’t like what I’m feeling or where that might need. Blah
Antoinette,
I know exactly what you mean. I try to remember…”for better or worse…”
Nicole
Unfortunately, the person I complain to is the person closest to me, my boyfriend. We live together and as such he sees me when I am at my worst and he is the one who hears all of my sorrows and struggles, so it becomes his burden as well. I was diagnosed in 2006 and I met him in 2007, so it has always been out in the open and always an issue. He went through the copaxone year, the tysabri (3 years), the two angioplasties, and now LDN. He has heard it all and been there through it all. I complain to him more than anyone. “See how I walk after a hot bath?” “You know I can’t schep throug Home Depot for an hour. I have to sit down.” He offers his hand, but sometimes I get mad when he helps me and then I get mad if he doesn’t. And sometimes when it gets really bad, I tell him just to go find a normal woman who can do things with him and live a normal life. But he doesn’t. Those are my feelings on complaining. I do it. I am sure it gets old for both of us. This is my new normal as Nicole says. Does this sound familiar?
Leslie,
Of course it sounds familiar! Wow. You did the angioplasties and are still symptomatic? Sounds like you’ve got a keeper. I mean your boyfriend, that is!
Nicole
Hi Nicole
How do you feel about driving now? I want to drive too but I no sure it would be safe for me or others. So I find other ways of going. Of course, each mode has advantages and disadvantages,
I have a scooter. You need to be able to get on and off. You also must be able to sit upright safely. Sidewalks need to be in decent shape with curb let-downs. Being able to control it is also necessary. My first few years with a scooter were good. I had a small collapseable one that fits into a trunk. That made it easier..even fun. At least I could go into the mall and shop somewhat independently..It was light-weight enough that my sister could lift it in and out of the car. Tiring but doable.
I gained weight so I need a larger scooter. Since you are from SS Md, you know about the local paratransit service, MetroAccess. It is a blessing and allows me to go to apointments and other places by myselff Since I now have a larger scooter (weight gain) I must use the van with a lift. Otherwise it’s my walker, useful only for very short distances, or my manual wheelchair. If I use the wheelchair, someone has to push me. Either way my independence has been cut way back. I’m grateful to have some mobility but this is making me crazy. How about you?
Don’t you hate having to wait until someone is kind enough to help? Does it bother you to have to ask, especially if you know your helper is tired or doesn’ want to be responsible for you? These are the issues that make me do any and everything I can to keep and, maybe even increase, my mobility. I’ve decided to get an aid (companion) to help ensure my safety and independence.
Thanks for raising this hot topic
Helen,
I miss driving. I do agree that’s probably best for everyone for me to remain a passenger. Yes, I hate having to wait for everything. I miss the control and independence of just being healthy.
I hate MS, but know that things could always be worse. Thanks so much for reading my little rant and come back next Tuesday!!!!
Nicole
I enjoyed this post Nicole-I don’t seem to “complain” as much as always “apologizing” to the people around me because I feel that I can no longer jump in and be a real part of many things. Cooking has pretty much become a thing of the past for me-I love to cook and entertain-oh well, that’s just 1 of the things I “apologize” for. I feel guilty because don’t feel as usefulas I’d like to be. There are times that I feel isolated…so I get on the computer, or read.
Sandra,
Isn’t that isolating as well? Thanks for reading the post. I don’t think I complain a lot either or at least not aloud!
Nicole
I usually feel stressed because of MS. I used to be independent and constantly asking for help I feel worthless. Others tell me I should feel the opposite but I rather be pissed off than pissed on. In response I usually say,” Why help those that cant even help themselves?” Maybe that is the reason I feel alone, I only talk to my wife and kids or Doctors.
Brian,
Then talk to me. Either here or you can email me. Your choice.
Nicole
Funny thing about isolation, I think it’s a normal condition amongst MS patients. Each of us has a disease with impacts each of us differently. So we start off different from the rest of society, and even amongst those of us with the “same” disease we still struggle to find someone who know exactly what we go through. The sense of shared suffering is hard to find.
Honest question, if you could drive, would you still feel alone?
I can drive. I work. I run. I take care of my kids as best I can, and I’m married to a wonderful woman…and I’m still alone. “Nobody knows the trouble I’ve seen. Nobody knows my sorrow” How could they?
A quote I first saw attributed to Nietzsche used to scare me. “Ultimately we all live and die just as we dream, alone within our thoughts.” Seemed scary till I realized there is no reason the dream must be a nightmare, and what’s more there is nothing saying we can’t share a dream. How many of us have shared Martin Luther King’s dream? I’ve just decided to take solace where ever I can find it.
Geof,
Thanks for the insight. Do you think my isolation is more a state of mind?
Nicole
I suspect only you know the answer to that question. I know for me, when I feel lonely (most of the time), I find myself asking what I really want. Growing up in a house where my step dad taught Physics and my mom was a biologist, I’ve had scientific method and the quest for measurables drilled into my head. So I ask myself what would make me feel accepted. What would make me feel loved?
Here’s the thing. I’ve yet to come up with many things which don’t come from the inside. In thinking back, yes betrayal hurts like hell, but why? The answer I’ve come up with is because I can’t feel close to them anymore.
Why isn’t my wife saying, “I love you” or my kids signing it and saying at the same time enough to last me a life time? Why does the sensation of a warm loving sensual embrace of my wife fade with the first angry or disappointed words? Shouldn’t these things last within my emotional state? If they don’t and still I feel lonely, I think the issue is me.
It’s in the walls I put up saying nobody could understand. It’s in my inability or unwillingness to move on past hurts from others and my inner questioning disbelief others would chose to be near me long term if they had a choice and didn’t need something from me. Now put that together with a disease wasting away abilities and…this paragraph exagerates my feelings, but it doesn’t horribly mistate them.
So I come back to only you can really answer your question. Just remember to try and take down what ever walls you can. I usually flick my fingers like an elementary school kid flicking the ear of the person in front of them on the bus. It’s just a sign of my emotional disdain for the emotional walls I perceive.
Geof, It’s like you threw the ball right back at me! That sounds just like an answer my psyche lady would give me! I think you may have just given me a topic for my next post.
Nicole
Thanks for the compliment.
I was 3 classes away from a double major in college (psych and Econ), but as an R.A. I was on suicide watch for a resident then used as a cosultant with another suicide threatening resident because “I handled the first one so well.” I wasn’t prepared for that emotional involvement, and it drained me. I was too tired to go to senior pictures after being up all night with a resident, and I dropped psych as I never want to go through that for people with whom I don’t feel any emotional involvement going in. Still, I’ve had enough training from college and after to know the lingo and sometimes think in the jargon.
Geof
I am at work and should actually be working but am reading the blog – wha tyou wrote is so true – all things emotions thoughts start from within- I work drive take my kids to sports cook clean although do it all a little tired and slower but i can still do it yet – I feel alone – sometimes I feel like by myself I wont get diasppointed – it is unfair and untrue – my husband and children are close but the first sign of disappointment from them and i back up – there go those walls – I know better I have a masters in psychology but I still dont do better – It is a frustrating thing – something I cannot blame the MS on
TM
Tanya-Marie,
This is growing into an epic saga of the mine!
Nicole
I call it venting! Some days if I don’t let off a little steam, I know I will blow up! Vent away, it’s good for ya!
Karen,
Thanks.
Nicole
It’s tough to find that ballance between being pissed and ones old self. Am finding more that writting about it helps. My skills lack but I like to hope I’ll improve and have a bit more eloquance someday LOL.
Hope to have a good day…and wish the same for you and all others in our “club” 🙂
Scott,
You are right about writing!…who knew?
Nicole
Last night I withdrew my scheduled poem and did not choose any of my nearly 50 draft poems instead because they all, sigh, seemed to talk about the hard road of MS. People are going to think, I thought, I’m always thinking about and/or saddened by MS. I am actually tired of talking about MS, but in fact my poetry blog is almost the only place where I do talk about it. And it is an important outlet for me to share those thoughts and also to see how others cope with this miserable disease. Our respective blogs and commenting is like a huge support group and thank goodness we have it. We might all go a little crazy (a lot crazy?) if we couldn’t share these thoughts with each other. So I am thankful for your thoughts, Nicole. I always look forward to reading your posts. So complain away. It gives me permission to do the same.
Judy,
You are so right. Ditto to everything you said! But if per chance I do go crazy at least you’ll understand!
Nicole
I was thinking about this today when I was thinking back on my blog with a year full of posts. Sometimes I like to think my posts are useful to other people, and I’m sure to some extent they are, but just getting it out is what’s necessary.
I would go completely crazy if I didn’t blog. MS is too unfair, too hard to deal with. Heck I feel I go crazy sometimes even when I do blog. Because MS can make us sound like raving lunatics. But what’s a rational response to MS? There is none. By getting our feelings out at least we feel like saying what we’re feeling again for a few hours after wouldn’t be interesting, so we can have relative peace.
Matt, Nice to know you share the feeling. At least I’m not alone on this one! I’ll have to tell hubby to take a look at your comment!
Nicole