Thanks to multiple sclerosis, I use a wheelchair because I can’t really walk. I can’t work outside of the home. I can’t drive and I have the stamina of someone much, much older.
Over the years I have dealt with all of this. All of the things I used to define myself by are now unavailable to me. This has been the case for a while now and I’m learning to accept it.
But I have to confess, it really pisses me off when I see others doing all the things that I can no longer do!
I have to warn you that this is a dangerous and unhealthy place to stay. It’s like being rolled up in a ball of envy. I know that’s no place to go. So in my attempt to acknowledge the feelings thereby somehow letting them go I focus on the things that I can do and the wonderful helpful people I have surrounded myself with.
But it’s so hard. The dark side of me is ever so close.
I try to remember that I’m worth the effort it takes to ward off negativity. That underneath this pile of mess there lies a human being that is Nicole. The soul of who I am is alive and intact. Okay maybe a little bruised up, but I’m still moving on.
I don’t recommend this but I’ll just carry my little ball of envy and anger around with me until it gets too heavy.
It seems for now living in this world of the able-bodied, it’s all I can do.
Perspective of my loved ones when I am wallowing:
My daughter: There are children with flies on their face in India mom
My girlfriend (with kidney cancer) – I will give you 15 minutes for a complete pity party and then get on with it. I do take that 15 minutes and sometimes much more but her words always ring in my ear. Incidentally, sometimes she watches me for the full 15 minutes which is very irritating when I am wallowing.
These don’t always work, but I growl, or lay down.
I am that older person, with the energy of an older person, plus the energy of ms.
Envy is a tougher one especially when you are young but based on what you have written and how much you have shared, others should be envying you –
Patricia, That’s funny. you’re right it’s all perspective!
Eh, if you didn’t have any anger/envy–that’s when I would worry. The anger/envy is what we use to drive us. I refer to it in scientific terms as “piss & vinegar.”
Spit nails and keep plugging away, girl!
Sock, Thanks for the support!
Hi Nicole,
Your honest open sharing of the good, the bad, and the ugly is why I make sure that I read your work every week, thank you. Wouldn’t it be refreshing if we all could recognize and avoid our “dark sides”? The world would be a much nicer place if that were reality yet unfortunately we are still left to deal with the limitations MS places in our daily living and sometimes that really sucks. So as you know we always have the choice to carry our own burdens as long as we want or we can find a way to let them go and these days I’m just glad I recocognize this a let things go much more quickly….most of the time! Thank you for helping me get to this point and for your openness, you’ve been more help than I’ll ever be adequately able to express or thank for.
Tim
Tim, I can never thank you enough.
As usual, Nicole, your posts are awe-inspiring. It holds so true for me as well, being in a wheelchair and paralyzed on my left side am bombarded by this godforsaken brain fog. I like to think that if much as I have learned from MS, showed of those around me and the world in general have much to learn from those of us with disabilities. Patients, kindness, compassion, being kind and considerate, and understanding. And ever so much more. so not only do I have a duty to treat myself with as much kindness as I can muster, but also to let others just be themselves and learn what their own lessons are in this lifetime. You, Nicole, are definitely an inspiration and a lesson in how to live with difficulty using grace and dignity to show others the way. Thank you so much. Love, Renae
Renae, Thanks so much for reading. What an awesome complement you’ve shared here!
WOW!! I relate to this right now! I was dx’d in 1997, I was 25 years old and I had a fighting attitude right from the start. I was adamant that this wasn’t going to get me down and for the most part, it hasn’t, until recently. I am now 42 and recently discovered that my BetaSeron has apparently stopped working for me due to the large increase in lesions from 2009 to now, after being stable with no new lesions from 2003. I am still mobile, I am still stubborn, I still work out at the Y as much as I can get there. Now, mind you, I can’t run, I am not that mobile but I can still walk without assistance and for that I am thankful. It is my quick wit and multitasking ability that has been taken from me. I was ran a medical practice of 10 and my household of 3, now I can barely run a household of 4.
This recent news has lead me to make the decision to stop my BetaSeron injections, 3 weeks ago now, and to choose Tecfidera (which should arrive today). I am finding myself in a place mentally and emotionally where I am doubting everything, kind of like 17 years ago when I was first diagnosed. However, this denial is a bit different, this isn’t a denial of a diagnosis, this is a denial of my determination. I feel like I’ve been slapped in the face as the Beta injections haven’t been my favorite thing to do for the past 9 years (was on A and C prior) but I have done it and now to find out that for 3 or four years now it’s been for NIL!! It pisses me off and it is tough to pull out of this. The hardest thing to admit is that I haven’t been envious of “normal” people, I have been envious of my peers, my fellow MS’ers that are doing GREAT and having no trouble, this makes me feel very guilty and it’s hard to admit. I am happy for everybody that is successfully managing this MonSter, but jealous. So now I must find a way to swallow this down, start a new medication, even thought it is totally freaking me out and be the best mom and wife I can be!! Thank you so much Nicole for being so open with your feelings and thoughts!
It is understandable you are envious. Knowing you, through your writing, I doubt you dwell in this dark place for long periods of time.
I am envious and I hate it. I am envious of all the people who can think clearly. I have PPMS and physically I am doing very well. Sometimes I use a cane. I just can’t remember or think like I used to.
My cognitive skills are so bad I can’t drive. I don’t got out in public alone. I get lost easily and need a keeper. I was a very independent woman. Now I am dependent. I received disability after going through two days of mental testing. The government made my husband power of attorney and said I couldn’t even answer phones for a living. I have very little short time memory.
Somewhere along the way I lost myself. I can’t trust my instincts anymore. Everything has changed for me.I am not me anymore, if that makes sense.
I am envious that individuals take thinking for granted. It is so easy to do.
Thanks so much Nicole for verbalizing exactly what I am going through right now…I’m having an exacerbation that has currently taken away my fine motor skills in my right hand, and I’m right-handed! My entire right side is numb…I mean completely…I couldn’t even feel it if I broke one of my fingers! Typing is a real chore, as I can’t even feel the keys…
I don’t see my new Neurologist until Sept. 3, and I can’t get in sooner! This has been going on since July 15, and I have 3 weeks to go! I cannot do basic ADLs or get dressed by myself anymore, and I just want to fade into nothingness, and no longer exist, to have never been here…
So I know what you mean by this blog. I am still hanging in there, but it is hard some days…
Meri Jo, Fading into nothingness is not an option! If it was I would have done it a long time ago! I’m sorry you are going through a tough time right now. Chances are after you get some steroids things will change. I am very dependent too. It’s tough at times down right humiliating. I try to focus on being grateful for the help. Typing is difficult. I got some software for my computer thats not working right now, so that’s crappy. but Im just pecking right along.
I am often told that my good humor and good dispsition are a way of avoiding the realities of my MS problems and now the issue of dealing with prostate cancer and what it will cause my MS to do. I do get very envious of what I used to be able to do and the realities of my current limitations. I therefor attempt to do things anyway. I usually end up way overdoing things, especially working outside in the garden or on the house. I used to have a wonderful garden and did some pretty extensive woodworking. Now the large saws stand idle and rusting. The massive amount of items I have from my handyman business are in plastic crates in my woodworking shed. I had to widen a kitchen cabinet door to put in a blind corner shelf. I cut it out, installed the unit, and there it sits. Needs to have a new door made, clean up the rough cut and put it back together. It’s been about 2 years, still needs to be finished. It is something that used to be so easy. Now I cant prioritise and have a lot of problems keeping track of all the jobs that need to be finished, and it doesn’t take a whole lot to redirect my focus. I make lists, doesn’t work. It is mainly a result of the loss of mental functions and this stupid brain fog. I’ll always say that one day I’m going to get things finished, but I am sure that I may not.
Bryan, I think my generally healthy disposition has gotten me far too!
Ditto!!!!!
That green-eyed monster often takes up residence here, as well.. I see others doing the things I long to do, but can’t. It’s not a grudge I hold against that person — it’s just that I want to be able to live as I once could. But, as you said, I can’t allow those feelings to consume me. So, I try to look for the more positive aspects of my current life, and I celebrate them. Thus is life with MS!
Muff, You got it, “positive aspects of my current life.” Well said.
Me too -;)
Another brilliant essay, Nicole. Even though I have endured the deterioration of my physical abilities for years now, I still am occasionally shocked to find myself watching with envy (and sometimes even resentment!) as others do so easily what I now do only with the utmost struggle. I think that reason I never truly reach that place where I can fully accept my situation is because my situation is always changing, always getting worse. If I had been in an accident and lost the use of my legs, I could just deal with it and move on. But each day I have to ask: “is it going to be worse tomorrow? How much worse?” Your post reminds me that instead of fighting or trying to swallow my envy, it is okay to accept it as a normal, healthy response to this insanity. Thank you.
Aleyna, Thanks. that’s EXACTLY the premise of this site. Normal is forever changing for us. but I believe there is a part of us that is forever there. that’s the part that we are in charge of holding onto.
Nicole, sorry. I am new to this, replied to you in Alenya’ comment. -;) I think you a one very brave and one very old soul, who always gives me something to think aboutv-;)
Hugs & smiles
Marie B Aust.
Aleyna,
This is the best answer to Nicole’s post I have seen and can also relate to. Thank you.. And thank you too Nicole, you lift my heart and soul and allow me to have my few tears and tantrums but then have a smile, a laugh and sometimes even a wine and do believe it or not, still look forward thus far to tomorrow ..
Hugs to you both.
Marie B. Australia
Negativity is absolutely a place I want to avoid. BUT only after acknowledging the thing causing it because denial is also another place I try to avoid. I can work with what I know I’m up against. I do much worse if I’m dealing with a mystery. The same thing holds for envy. I think it’s healthy to acknowledge the envy as long as I use it as a tool for recovery. As always, Nicole, you address issues we all probably face and you do it with honesty and in a balanced way. Thank you.
Judy, I too refuse to let negativity pull me in. I like I like the idea of acknowledging envy and using it as a tool. that will be my new homework assignment!
Nicole- As somone who TOTALLY related to your and most everyone else’s venting the other week including the woman whose hubby was an arse about it and is off skiing with the gf….my ex ONLY made a serious pass at my kid sister while I was in ther other room sleeping (dont give up hope-even I remarried and found happiness again!).
Anyways I am Muslim and while many may not respect what my beliefs are I must say that what main stream media shows is totally false. One of the things we are taught outside of charity to others as a whole is that we should do our very best NOT to envy what others no matter faith have but instead if we must compare ourselves to anyone at all then we should look to see how many are LESS fortunate than we are.
I have a friend in Cairo who was training as a Dr a bit back and she knew I had MS. She was discussing with me online how few treatment options were available to patients there. Even drugs that kool our MS down a bit like steriods can be difficult to get for the poorest. My husband relates stories which he says may have improved in the 12 years since he left of farmers needing treatment which is free to see dr in government facilities but the transportation from very rural areas was the problem. There are people who live in the cemetaries there because living further out of Cairo causes hardahip to even try to get a meal….the cemetaries are not allowed as places to live in Islam yet these people do so….many are also involved in drugs as well though. So when I start feeling sad for my old me esp on days when I wish to bead, or do any 1 of a 100 other things, I stop and start doing my very best to count MY blessing. We do not live in a perfect country by any means but look at REAL pics of other places and by seeing how much BETTER off you may be instead of this or that person can do what I did or want to do and you definitely don’t feel as badly. Take care. And truly sorry you’ve had such bad case of blues lately. This disease does bite….but it forced me to see who my friends even among family were and were not and definitely brought so many positive changes to my life that I almost wonder what it would be like without it. Would I be a better person or worse? Think worse shamefully. Yet one never knows!
For now, it’s a 1day @atime deal….good deals do what I can, great days do more plus add some extra fun, and bad days chillax:-)! All but the 2nd was a major adjustment as a serious adjustment for a DEFINITE Type A!
Fatima.I appreciate your comment. I try to remember all the things that I have daily. still, sometimes I fall short.
Please don’t beat yourself up about that Nicole, as I am sure we are all guilty of doing exactly that a bit more often then we should !!!! Important thing to try & remember to “snap out of it ASAP…” it is the truth unfortunatly , but there is always someone worse off than we are.. For eg.. I nursed my younger sister who suffered from Muscular Dystrophy & all it’s associated symptoms , who was also what the Drs classified as ‘morbidly obese’ !!! In the last 6 months of her life. She sadly passed away at the age of 49 five years ago. Talk about the blind leading the blind there -;;). However she used to say to me, “that she was better of then me as she had no pain,, didn’t suffer fatigue & had a mind as sharpe as a tack, !!!! Well, one could argue the cons of that till the cows come home and not get an answer….she was happy, sang beautifully, had hundreds of online friends, some of which sent flowers to her funeral. !! Unfortunatly she passed away with what many of us who suffer Chronic Illness of some kind, …a disgusting infection , in her case an ongoing urine infection and horrible abbsyse on her bottom that would never clear…..li miss her dreadfully, but always think lovingly of her and know she sure did live her life to the fullest whilst she was here, she helped many, made many if not hundreds smile and in almost all the ways that count, you & your amazing skills and your ability to share the good and the bad reminds me so much of her. -;) so my friend keep blogging, whilst I don’t post much I always look forward to Tuesdays.
Cheers and gentle, gentle hugs…
Marie B, Australia. X
It was wonderful meeting you tonight at the MS Support Group. So far I have enjoyed reading your blog. Thank you for all of your efforts to educate and share. See you next month.
Nicole meeting you too! I’m super flatter you not only stopped by the site but ALSO commented! I couldn’t ask for more. Yes I could. Maybe we can meet up outside of group? No pressure of course!
Lol…. Yeah , that sounds excellent , -;) I might invite myself as well…how funny would that be,… I could just “pop over” for a coffee on my ‘very private … & very secret jet” -;;)))) OR …. On the funny … Negative … Almost sicko side….. “pop over on my ‘very private and secret flying broomstick “”””. ( Not really funny eh!!!….. sorry -;) lol )…
Have to go feed my puppy dog, he is getting cross with me…
Hugs,
Marie B..Aust..