Tag Archives: Depression

What MSers Really Need from Others

Posted on by

“The chronically ill, too.”

Even though this post was written for a MS Blog, the following list can apply to supporters of patients who are chronically ill. As an MS patient myself who was trained as a MS peer counselor thirty years ago, I found myself talking with and listening to patients who were chronically ill with something else.

This list is for family, friends, co-workers, health care professionals…i.e. the people we associate with in our lives. While it seems to be simple and just common sense, it is amazing how many folks say the wrong things or don’t even know what to say.*

1. Empathy vs. Sympathy
Most MSers don’t want you to feel sorry for them. They want you to try and understand MS and their symptoms/problems. Visualize putting yourselves in their shoes.

2. Listening vs. Talking
Sometimes MSers like to talk about MS and sometimes they do not. If they wish not to talk or get emotional, do not take it personally or compare them to others. More often than not, they need others to listen to them.

3. Inspiration vs. Reality
Inspiration is vital and wanted. However, there are times when MSers are so sick or fatigued, they don’t want cheerleading, humor, or advice. Give hugs and be sensitive to their feelings.

4. Knowledge and Support
The more accurate knowledge that is obtained from reliable sources, the less fear there will be. The more support that a MSer has from whom they interact with, the easier it will be for them to manage their MS, lives, and adjustments. What kind of support? Just ask the patient, or offer to do something to make their life easier (like make a meal, watch kids, do laundry…).

*Here is a link to view my background/credentials http://debbiems.com/about-debbie_269.html

www.Debbiems.com
Author/MS Counselor/Living with MS

Holidays Got you Stressed?

Posted on by

“Letting Go”

December 20, 2013

After all these years, I still get to the point of total meltdown when in the midst of the holiday season. I know I’m older, I know I have MS, I know people don’t expect me to wait on them or see a perfect house… Yet I still occasionally get that desire way to do things myself–perfectly with ease and energy. It used to be my personality.

Even though I also know those days are long gone, the old personality resurfaces. I still freak out every December as I tearfully stumble through trying to decorate and send cards. When it gets to the point like a balloon getting ready to burst, I have learned what to do for myself.

I had heart-to-heart talks with two friends on Monday, who are sixty-ish and feel like their to-do lists are never completed because of their lack of energy. I talked with my good-humored neighbor, who is legally blind and “gets” what it is like to constantly have to rely on others for help. And then I cried and cried. It all made me feel better. I had to let go and move on.

Between Christmas and over New Years, I will have relatives coming to stay with us for a week. I remembered this article I wrote last summer and re-read it. Good advice; I’m back in the swing of things.

I am re-posting it because I think anyone with MS or a chronic illness would benefit from reading it whether it is for the first time or not. It doesn’t matter what time of the year it is either, though right now is a perfect time to put these things into action.

Managing Overwhelming Circumstances
“Speak Up, Nicely.”
August 13, 2012

It was 117 degrees yesterday, and the weather prediction doesn’t expect the temperature to go down much over the next week. My family from out-of-state is staying with us for the next ten days. Between the heat, fatigue and overwhelming activities under my roof, will I manage? Yes.

How? I learned when to say “yes”, “no”, and “would you please…”

This wasn’t something that came easy to me when I was diagnosed with MS. I was always a very independent person, offering my help to others. It took a long time to use these words in the right manner and circumstance. After all, we are talking about a change in behavior. Changes in behavior do not happen overnight, but it can happen if you want them to.

For me, it wasn’t a conscientious decision on my part to ask for help, accept help, or set limitations. The mounting of excessive fatigue and other interfering symptoms forced me. If I didn’t succumb to changing my behavior in this way, I would not have survived my MS.

Not only is it essential to me, it’s essential for my friends and family, too. In the beginning, they wanted to help, but were cautious about what to do. So I learned to open my mouth in the correct way. I set the tone: if I am comfortable, they are comfortable. If I tell them what I need (or don’t need), or what to do (or not do), they are glad for it. Everyone benefits.

It was difficult in the beginning for me to say “yes”, “no”, or “would you please…” But once I got started, it got easier.

Here are examples of this week so far:

“OK. You know the rules. Mi casa es su casa. Help yourself to anything you want and clean up after yourself.”

“Would you excuse me, please? I am so tired and need to lie down for awhile.”

“Yes, you can help—could you finish cutting up these veggies? And can someone else take out the garbage?”

“It is SO hot. Would you please get me an ice pack from the freezer—there’s a crowd in the kitchen!”

“Would anyone mind going to the store? We need to get…”

“No. As much as I would like to go, I better not. It’s too hot and I’m too tired. When you are gone, it will give me a great opportunity to sneak into bed and take a nap.”

“Yes, you can run the vacuum for me!”

“No, you guys go ahead and watch the movie—I’ll watch it another time. I’m going to hit the sack early.”

It works beautifully. My family is great–willing to pitch in, and understanding my need to take care of myself. They love to help me, and I love their help and appreciate their understanding.

Gone are the days when I felt that I needed to get up first in the morning to make coffee. Gone are the days when they felt uncomfortable as they watched me struggle trying to fix a meal for them. Gone are they days I felt too proud to ask for help. Gone are the days when they felt intimidated to offer help.

So, do yourself and everyone else a favor: Speak up, nicely. It is a win-win situation.

www.DebbieMS.com

Stuck in a Negative Spell & Attitude

Posted on by

“Grieving”

July 16, 2013

Normally I am a very optimistic person.  Throughout my life, I dealt with many major, difficult events that required life adjustments.  Going through a grieving process—denial, anger, depression, bargaining–often accompanies the life adjustments.  Somehow I always managed to plow forward through the process rather quickly, restoring a positive attitude and looking for that silver lining.

People have often remarked what an inspiration I am and how well I do. But lately, not this time.  I have been stuck in one of those negative spells, with a negative attitude.  In April, I developed complications from a UTI, got a virus, and had an allergic reaction to an antibiotic all at the same time.  The perfect storm stirred up my MS to the point that left me completely incapacitated. I was admitted into the hospital.

Fortunately, after weeks of treatment and home care therapy, the infections and sickness went away and the MS calmed down.  Physically, I returned to my previous pre-relapse “normal” state.  But having the weeks of downtime and being incapacitated shook me to the core. My mental and emotional state didn’t rebound so easily. Every day I got out of bed and went through the motions of life, but with no smiles or enthusiasm. I was  existing without any happiness. My emotions were erratic and unpredictable.  Nothing was fun or funny.

I was grieving.

I was sick of being sick of being sick and tired of being tired.  Too many times over too many years of problem solving and adjusting.  My mind shut down; it was hard to think, which is what I always seem to do.  Think.

Everything in my life has to be planned and organized around my bathroom problems, medications, accessibility needs, physical limitations, fatigue, waiting for others to help me with something… And every thing I do takes so long to do.  Sometimes it’s just not worth the effort. Everything is a production.

This coming September, I have a trip planned to Alaska.  While “normal” people are looking forward to the cruise, food and excursions, I am dreading it all.  I worry about embarrassing myself with a bathroom accident.  Or, what will I do if I get a serious UTI, since I am resistant to oral antibiotics?  I have to plan to try and prevent these things from happening.  It is exasperating.

On the other side of the coin, so often I have to cancel my laborious plans because I don’t feel well, am too fatigued, maybe didn’t sleep well, require a laxative…  I have to plan, but other times I can’t plan something because of some physical or accessible limitation. It drives me crazy.  I can’t be spontaneous about anything.

Over the years, one reason I have kept a personal journal was to vent my sadness, stress or frustration.  Here are a couple of entries made during this bad spell:

“I wish I could just have 24 hours of being a normal person with no physical problems. To sleep through the night without waking up because of a cramp, a spasm, a pain, or to have to pee.  To not wake up tired after being in bed for eight hours. To sit down and pee without the hassle of using a catheter. To have a bowel movement without worrying about if I am going to go, or if I am going to get to the commode in time.  To eat whatever I want without bloating, gas… To have a day with no pain, or edema.  To be able to walk.  To have a day when I could everything myself without waiting or depending on someone to help me. To not have to worry about changing or cancelling plans because I am too tired.  To not drop things.  To be able to jump in the car and drive someplace alone. “

“Life is a journey as people often say.  But why is it that some people just seem to cruise through life?  Sometimes I feel like I’ve been travelling on some bumpy, dirt road never knowing when an obstacle will pop up.  It always does.  A flat tire.  A dead end.  A detour.  Overheated.  A breakdown.  Out of gas.  An unmarked fork in the road—which way to go?  Stuck in a rut.”

In the past, I always reached out somewhere, like counseling, to get me through my grieving.  Grieving isn’t a bad thing; it is a coping mechanism.  But grieving too long is not good.  It will crush your mind, body and spirit.  I wasn’t reaching out this time and I was getting crushed.

Two things happened over the past month that broke me out of this spell and helped me heal my spirit. The first thing was that a lost dog appeared in front on our house late one evening, barking incessantly.  This dog was a clone of my beloved companion Bear that died exactly a year earlier, both in looks and personality.  After a month of unsuccessfully locating the owner of this lovable one-year old pup, we adopted “Grizzly”, aka “Little Bear” as we named him.

Second, I came across an article about positivity that I saved from earlier this year.  It was also a catalyst that started me thinking healthy thoughts again.  I’m posting it today on my blog after I post this article so that it may inspire others as it inspired me.

Divine intervention?  I think so.  Faith, hope and love are so powerful.  They pulled me out of the deep, dark hole I fell into and got me over my grieving.  I’m moving forward again with a positive outlook and I’m smiling again on the inside and out. 

www.DebbieMS.com

Attitude is Everything

Posted on by

“Taking Control of Yourself”

January 23, 2013

I was in the process of writing an article about the ramifications of mental and emotional health when living with a chronic illness like MS, when I came across the following post today while perusing an MS connection online site. It is so incredibly good I am taking the liberty of sharing it to others I know with MS.

“Hi everyone, I have been away from this site for a long time. Just recently got back on. When I first found the site I was looking for help with my MS. Received really good advice then didn’t come back regularly as I should have.

I have learned a lot in the last 7 months. I believe in “pay forward” so I wish to share this with you. I hope it helps and doesn’t insult anyone. The bottom line is I am in control of what I choose to do and not to do, remember this throughout this message.

I have had a multitude of symptoms. Number one is DEPRESSION! I believe this is the cornerstone to a lot of my choosing not to do. I have done mental health therapy with a counselor, PT and OT. Through all of this I became educated. Now I am realizing that I chose to stay in my poor me syndrome. I was so sick of doctor appointments, running constantly which cause me to be exhausted and frustrated because no one could fix me.

I hate the cognitive fog, forgetfulness, physical limitations, sexual dysfunction, tremors, pain, confusion; I hated every part of MS and what it has done to me. I missed the old me and desperately wanted to be fixed without having to work so damn hard to try to get back to the old me. My neurologist told me “change your attitude and you will feel better”. I was pissed off to say the least. It has been 2 months since I have seen him, and I now know he is right. I am in control of my attitude.

My depression was preventing me from living, and I chose to stay this way in misery. We increased my depression meds and I slowly began to change my attitude, which is very challenging with the unpredictability of MS.

I am trying to laugh alot more and trying to adapt to my challenges. Helping myself get enough sleep, drinking fluids, getting educated, another words helping myself. There are days I eat the wrong foods, drink too much caffeine, smoke too much (still working on this need to quit) and those days I know I have myself to thank for how crappy I feel. Exercise is very helpful mentally and physically. I wouldn’t exercise because I couldn’t do what I used to do, so I chose not to do it. This only hurts me more.

So I guess what I want to tell you all, is look deep into yourselves and do a personal inventory. I had to realize I can’t be fixed. No cure for MS. Accept this. Then change your attitude from can’t do to I can do. Find the laughter! As hard as it is to do, acknowledge we are not who we were before MS. We are trapped in this auto immune, unpredictable disease. Say this totally sucks. Then move on. Start over building the new you. Challenge yourself to be the best you can be each moment, acknowledge your success and failure. If you fail, look at the reason why, did you bring this on yourself? Sometimes we cause the situation, other times it’s just the MS. If the latter is the cause, move on; adjust then if you can laugh through it. But you have to move past it.

I type these words and know some of you won’t get it and maybe it will help some of you. I chose not to do a lot; I needed to wallow through the misery of MS. I will have bad days, and if I chose to stay there, this is my choice. I can’t imagine anyone not being depressed with a diagnosis of MS. It’s so devastating. I remember when I was diagnosed I thought “oh thank God I’m not crazy”; there was a reason for what was happening to me. But then I allowed the MS to make me crazy by wanting to be fixed and have all this crap go away. Well it doesn’t and everyday is a new day and full of challenges and ups and downs.

Also, how many times have we heard stress will exacerbate our symptoms, “try to avoid stress”? OMG! Are you kidding me? Ladies and Gents life is not stress free nor is it avoidable. The key to success is how you handle the stress, not how do you avoid it. I mean really you have this incurable disease that has robbed you, this is stressful.

I have a new attitude (most of the time) about stress. It is what it is. I look at stress and think how does this really affect me? I can allow myself to get all wrapped up in the drama, or I can meet it head on, fix it or forget it. If you can end the drama, do it. Set the boundaries. Don’t allow others to suck you into things that really don’t affect you. Shelter yourselves from the unnecessary drama. This only zaps your energy and well being. You need to protect yourself. Stress is like infectious bacteria that want to invade you and make you sick.

Set boundaries, make them know and put up your shield. Some people may think you are being mean or uncaring. So be it. I know what I need to do to keep myself upright and moving forward. If they can’t accept this, then I guess they are not ready to accept me for who I have to be. I can help them but only if they don’t suck me into the stress and drama.

You need to see things in black and white at first, don’t allow a gray area. As I learn more about me and what I can tolerate, I may be able to not have such a strong force field around me. But for now this is what I need to do for me. This saves my energy for the moments I have to really deal with big stressors that take me by surprise. Then when I have those stressful times, I can take a realistic approach to how to not allow it to make me sick. I can think clearer and reset the boundaries for each “big” stressful situation. May the force be with you all!

I hope this rambling helps most who read it. Some of you may think I am nuts (sometimes I am but my counselor assures me I am not crazy). The bottom line is take care of yourself first, everyone else comes after you. You need to find your “new” self and set realistic goal and boundaries and make them known. Say them out loud for loved ones to hear and understand. Ask for help, but don’t ask everyone to do everything for you. Rise to the challenge and find the “new you”. I never thought I would say this, but MS has helped me to see how the old me really wasn’t all that healthy mentally or physically. The new me will be a new and improved, just slower but I have a better outlook today than yesterday and for that I am grateful.

Best wishes to you all! Your friend in MS, Michele”

No Michele—you are not rambling and you are not nuts. You are an incredible inspiration. There is a sign in my doctor’s office that reads “Attitude is everything—Pick a good one!” I love yours and the next time I get down in the dumps and have trouble getting out of it, I will read your post. I give it a AAA+ grade, for An Awesome Attitude.

There is no mystery that people with positive attitudes are happier, live longer, and are stronger.

Thank you.

www.DebbieMS.com