MS Frustration

082299 Oh, The Frustration

Every MSer faces frustration. It is not like a childhood disease, ie Polio. Most of us were diagnoses in later years. Thus, as we lose capabilities and find we can not do things that were simple at one time, our level of frustration increases, often far beyond what our support circle can understand. It is not the same as being mad or angry feeling sorry for yourself. It is the emotion we have resulting from the constant new reminders we get almost everyday that we are continuously loosing the ability to do more and more activities that we use to never even think about.

Frustration was recently a discussion topic for subscribers to MS News. The following are a few of the responses sent in by MSer's. I record them here for those who do not subscribe to MS News and for those non-MSer's who want to know more about our quality of life.

This is a great support group. Please visit their site.
http://www.msnews.org/

Ever feel like you have one nerve left and someone is getting on it??

About to pull your hair out and you are almost bald?

The frustrations that come along with MS ar many -------- trying for the umpteenth time to button that button or fasten a necklace. Trying to walk across the room to answer the phone. Feeling that somehow everywhere you try to walk has been booby trapped?

Fatigue, forgetfulness, unkind or unthoughful family? Having a whole list of things to do ( in your mind) and not getting more that one of them done?

Doctors that don't seem to listen, ins. companies that don't seem to care.

There are all these frustrations and more with MS ---------- We would like to hear about yours and what you do to deal with the frustration .

1. How often do things frustrate you?

Daily, although my level of frustration plainly fluctuates with fatigue and situation. Things that are merely annoying at 10 a.m. may result in a total meltdown at 4 p.m. Also, things that would have frustrated me before M.S. still frustrate me, but for different reasons.

Every day of my life, there is one or more things that frustrate me. = Waking up in the morning with my body aching... not being able to even = speak until I have had my medication. Shuffling all day from one room to = the other. Limp arms, achy legs, the pain at the back of my neck, achy = head.. Trying to shop and dropping the cans on the floor because my = fingers are fumbling.... the list is endless.

DAILY ... HOURLY, WHEN I'M NOT ASLEEP

Almost daily, although many are just little ones, like if I should lose my balance while bending over taking clothes out of the dryer, or when I just can't remember the right word. For instance, my DH and I still laugh when we were driving by a farm and I asked him to look at all those white cattle in that...that...'cow field'. Of course I meant 'pasture', but the word just wouldn't come at that moment, and we both cracked up. Now every pasture is a 'cow field'.

Every day - If I forget a name then I do. I no longer work except from home - I am 36 yrs old, have no children and live at home. I live on the tip of Africa, find the drugs prohibitively expensive and live in a society that is only beginning to discover its own humanity. None of that can I change. So cope with the facets of frustration I must or else sink.

I am frustrated on a daily basis by one thing or another. One big frustration for me is whenI go somewhere with family or friends and they forget that I cant keep up with them walking. They are usually 50 feet ahead of me before they realize that I'm not next to them.

2. Are there fixes for them ?

Sometimes. Depends on the frustration. Many people have written about cognitive changes associated with language and word-finding skills. This was one of my greatest frustrations (and I invented some pretty crazy words along the way) but was one that I couldn't get my neurologist to do anything about. Then another one of my physicians prescribed Aricept--it's great. My cognitive function returned and I can remember words (and how I intend to end a sentence) even at the end of the day.

NOT REALLY - AS SOON AS I MAKE ADJUSTMENTS OR ADAPTATIONS SOMETHING GETS WORSE

Sometimes yes - allowing myself time to do the simple things. And planning. Before I have a shower I work through the routine that is most labour saving. I make sure that I follow the same regimen and schedule in a rest straight after. That helps to minimise the frustration. I go for the easiest route - clothes that are easiest to put on, a hairstyle that looks good but with minimal fuss, I eat from a bowl, I use an electric tooth brush, I dictate into my computer, I made adjustments to the shower so can get in and out with greater ease. I walk with a walker when I can and use a scooter when I can't. That eases physical frustration. But psychological? Another story.

Usually they realize rather quickly that they have to slow down to my pace. Some things, like forgetfulness can be fixed by learning to make lists and write notes to yourself......but of course then you have to remember to bring the list with you :) I have a counter right by my back door where I leave things that I need to take with me when I go.

3. What is your best way of dealing with frustration ?

Making it all someone else's fault. . . and I'm only sort of kidding. I have made a point of sharing some of my MS-related limitations with my partners and employees--and making them responsible for managing the parts of my job that I can no longer perform effectively. This way when something doesn't happen as it should, it really is someone else's fault. It took a long time, however, to get to the point of being willing to expose my 'weaknesses' this way.

SINCE I CANNOT DEAL WITH THE FRUSTRATIONS, I TRY AVOIDANCE ... IT'S CALLED SLEEP ... WISH I COULD SLEEP UNTIL MY LIFE ENDS

Allowing myself time. Learning to accept what I can't change. It sometimes works. Trying not to hate the useless parts of me.

4. Do the frustrations make you cry, or yell, or really get upset?

And, when I yell, my frustration makes the people around me cry or get really upset. Mostly, though, the frustrations just add to my overall stress and fatigue levels.

Yes. Despite the medication, the burden gets too much sometimes. Without = the medication...watch out! Here comes Hurricane Amalia! LOL

I don't cry or yell. I do get upset. If I am having a real bad day, I do a ton more work, thinking that this is it, tomorrow I won't be able to walk at all, so have to get it all done now. Which in return just makes me really tired the next few days and have to rest, which I know I should have done in the first place! I get upset because I try to do something I swear I just did a few days ago and now can't do. Somedays I can pull the couch away from the wall but can't push it back. Other days I can't pull it away but can push it back? Weird

OH YES, I CRY, I GET NASTY, I UPSET MYSELF MORE AND THEN EVERYTHING DETERIORATES ... A VICIOUS CYCLE THAT I DON'T SEEM ABLE TO STOP

Yes, I have been known to cry or become angry-but at the situation, not at myself and not at others. I make it a point of NOT taking it out on my DH. Usually the frustrations happen more often when he is not around to see it anyway.

I cry more often now than I used to, sometimes even hysterically. After a real bout of super-frustration, sometimes we just go away for a weekend to distance me from whatever got me going.

5. How do you best handle these frustrations??

Better living through chemistry. More sleep. Learning to live with M.S. Crying on someone else's shoulder. Taking more vacation time. Working less. Everything is easier if I don't push myself to the limit.

You can't 'handle' them, just 'bear' them... unless someone has found a = cure for ms???

AS YOU CAN SEE, I DON'T ! I HAD A LIFETIME OF FEELING LIKE I COULD DO NEARLY ANYTHING ... NOW I CAN'T DO ANYTHING AND I HATE IT

I am only beginning to understand that the more I give in to the urge to yell or get angry the worse I feel. It is tiring beyond measure. When I get frustrated I force myself to stop. And give myself a choice. I can react with anger but then again I don't have to. I can go down the road of self-criticism but then again I don't have to. And I can laugh.

6. What works for you?

Sleep, exercise, and laughter. Also, drugs.

I know I'll never stop trying to do more than I should, so I will always have frustrations, but I also know that I can usually find another, sometimes better way of doing something that frustrates me, and I put my energy into that. A positive attitude will help me get through most of the rough spots. My DH and a good night's sleep can get me over the rest of them.

Laughter, understanding. Giving myself permission to feel frustrated. Talking it through with my mom and dad. And with my boyfriend. Giving my frustration to a Higher wisdom and learning to accept what I cannot change. It is so damned hard, but trying to replace negative thoughts with positive. As I said - it does work for me - but not always.

It almost drives me crazy when I want to say something and can't remember the words . For instance I might want to say look at the bird but can't remember what it's called . This happens a lot and what do I do about it ? Nothing because I'm a complete blank as I try to remember what I want to say ... and then I could just go crazy .

I've lost the ability to spell and because of this my vocabulary is limited when I write. I find this terribly frustrating and I'm very frustrated right now . I don't think I'll ever get used to these two problems as I've tried everything to over come them and NOTHING has helped . The last thing I need to do is take the well meaning advice of the helpful hints . If I can't remember words and I can't spell how can I remember the helpful hints . I must say there are a few that have helped a lot when I remember them . 'I'm frustrated'

Another thing that frustrates me is I can't really plan anything because I don't know anymore how I'll feel . This disease should be called ' Frustrating '.

I guess the only way I can deal with this is to set in my garden or visit with my grandkids they never seem to put any expectations on me . They seem to get a kick out of some of the things I say and do and a lot of the time I get a kick out of me too ..... Just thinking about them has put a real damper on my frustrations .

This is the best topic since Cream Cheese Cake . I really have enjoyed this topic because it's all about * Me * and you .

Like many others, some of my most frustrating moments have come in dealing with the diagnostic process and doctors generally. The result is that I tend to not share symptoms with my neurologist because I expect her to blow them off. This is probably not helping my overall treatment, but I have a hard enough time dealing with the reactions of people who don't know a lot about M.S., and I'm just too overwhelmed sometimes to deal with the reactions of people who should understand that what I am going through is a symptom of a disease (and not just a sign that I'm crazy or depressed). Also, a great frustration is that everytime I have a bout of optic neuritis, the neurologist says 'have you called the opthamologist?' and the opthamologist says 'you really need to see your neurologist about this.'

I also am very frustrated by the onset of any new symptoms--and having to go through the whole grieving, anger, denial, etc. cycle as parts of my life that I once took for granted become distant memories. My most recent frustration has been trying to learn to deal with cluster headaches--pain is one issue, but the more frustrating aspect is unpredictability. I feel as though I can't make plans to do anything at all with friends or family because I must frequently back out at the last minute which makes me feel guilty. How do others deal with this?

I would like to add that frustration is a natural result of ms = disabilities. Especially for people with rrms (of which I was one until = a couple of years ago when I changed to spms) there are periods when you = feel well, you can function normally, nothing is really bothering you. = When the time of an exacerbation comes (or in my case when the ms = becomes chronic progressive), it's hard to adjust to the new situation, = the inability to do the things you KNOW you can do, you did them only = just a little while ago! Internalising a new image of yourself as a = temporarily or permanently disabled person goes against the grain. You = want to be well again! Unfortunately, in my case, I will never be well = again. The frustration of not being able to do what I could do a few = years back, shocks me, surprises me (still) and frustrates the h*** out = of me! So, I reach for my pills and put my faith in science for that = long-awaited cure.

Great topic. . . My chief frustration recently is my not being able to do the right things for myself. I buy exercise and mediatation tapes and books for MS, diet books for MS, vitamins for MS(including orange flavored cod liver oil), but all of this sits and waits for me to 'do the right thing.' I am frustrated with my lack of self-help. My old habits are my friends.

But others attitudes are tied for first place. I started graduate school, and need a 'special' key to get handicap access to the library on compass, and a few other minor accomenations. I am ready for thesis, and it has al been a waste of time. Including my Doc's who wrote to the College about my need for no-stair access. What a waste, I find the hanicap signs are everywhere, but are meaningless. I registered for a course on the second floor after making sure the elavator worked, it doesn't, never did. The handicap bedroom in the dorm is realy the storage room for the staff, so when I come on campus to stay, I am a pain in the neck.

I guess to sum up it's the fakeness of inclusiveness that frustrates me. All well intended, but I still cann't get into the library. I cope by using Amazon,com to often to get books, drink too much, eat red meat, and consider exercise, combing my cats.

I know I had written earlier. Unfortunately it was on a day of very high frustration. You can disregard that one if you want. My biggest frustration is no family support. I just don't understand that one at all. It is not a physical problem of MS, which I can deal with eventually, but this one just mystifies me.

Trying for the umpteenth time to button that button or fasten a necklace.

Trying to walk across the room to answer the phone.

Feeling that somehow everywhere you try to walk has been booby trapped?

Fatigue, forgetfulness, unkind or unthoughful family?

Having a whole list of things to do (in your mind) and not getting more that one of them done?

Doctors that don't seem to listen.

Insurance companies that don't seem to care.

I know this is not the proper method for dealing with these problems but most of the people I deal with daily, do not understand the needs of an individual with progressive MS that has me incapacitated enough that I need help throughout the entire day and I can't seem to get this in their head to stay more than a couple of days. It's been this way over the last 2 years since I had to 'retire' on medical disability!

Yes, you are right -- all of us, regardless of what stage we are in with MS, are faced with numerous frustrations each and every day. I personally find that I get the most frustrated and have the hardest time trying to do something when I am tired (which is 99.9% of the time). Because of that, if I have a major activity to do, I try to make sure I am rested before starting it. However, even then it can still be difficult if not impossible.

I guess my next tactic is to try to laugh about it and see the funny side of the situation. To be able to laugh about it, makes it easier -- it may not allow the task to get completed, but it makes it less frustrating when I can't finish the task. Since 'frustration = stress', I try to not take on tasks that I am unable to do, i.e., pulling weeds in 100 degree heat! :))

I find that oftentimes my brain seems to forget that I have MS, and it wants me to attempt to do things that I used to be able physically to do -- I guess we all face that dilemma ... our brain forgets our physical limitations ... so I am constantly trying to do things I can't which creates even more frustration.

I also find myself feeling guilty about what I can no longer accomplish that I 'should' be able to do -- i.e., cooking meals, cleaning the house, etc. That can also be a major source of frustration so I have to have frequent 'talks with myself' -- I tell myself to 'be glad you can do what you can do, but to not feel guilty about what you can't' and to 'just do the best you can'... (sometimes my brain doesn't listen tho! lol).

In summary, laugh and talk to yourself often to try to deal with frustrations -- if nothing else it will make people wonder about you!

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