How to cope

[Poppy7402]

How are people supposed cope with the cognitive deficits that come with a neurological illness?  I have what looks like a disease that affects me in the same way as MS, except for lesion placement but I look normal.  Who would know, with the hopeless medical system in this country I may yet get an MS diagnosis one day.  Diagnosing someone seems to be irrelevant, just treat the symptoms is how the system works.  

When I went through Uni, I was upset if I didn’t get an A grade in every paper, now I can’t think of the answer to the most basic questions, or come up with the right words in a sentence.  I invariably end up pointing to the object I’m thinking of.  

If I overdo it one day, I spend the next two days on the couch recovering.  The guilt I feel at this is terrible.  I used to be a workaholic but enjoyed it and loved getting things done.  Now I just look at them and think, one day – maybe.  

I still work part-time but my days of even that are numbered as my abilities seem to decline by the day.  Because my husband works, we qualify for no financial assistance, so I really need to do something even though I'm fast heading towards being fit for absolutely nothing.  

I just don't know how to remain optimistic and positive when life really ***** at the moment.

Poppy

[Joiedecour]

Hi Poppy, it must be so much harder when you don't have a convincing diagnosis, which would probably help too with the guilt you say you feel. But you do know what you have to do to stay well, so I just hope you can and do so without feeling bad about it. You will never be food for nothing. You are unique and valuable. Take your time to rest please when you know you need to. We can be so hard on ourselves. Take care. Hugs.

[Joiedecour]

Good not food! Silly phone!

[karryon55]

Hi Poppy,

It sounds like your having a really rough time of it. I only hope that some day soon you will be dx'd & this will make it easier to explain to other people what is happening to you. Just don't beat yourself up about having to rest & such.

Try not to worry what other people think either because it really doesn't alter how you manage from day to day in your life. Some people will get it & those people are usually ones who are either sick in life or have a family member with illness. Those who just don't get it probably never will so don't waste your energy worrying about them. You need your energy for your own needs.

I know I have cognition problems & as I'm typing this to you I am questioning what I type & if it's making any sense. I can "see it" but I am trying my best to not let it worry me too much. I can't change what's happened but I can try & make the best of my future. I hope you can do the same & give yourself some of the good advice you give others.

I know what it's like to feel guilty for not being unable to do things that others seem to do so easily. I am not sure how to stop this feeling but it can be dampened down a bit. By looking at yourself as the valuable, loving & intelligent person you are is probably a good place to start.

If I could physically give you a hug I would right now. Instead I have sent you lots of cyber hugs. Please take as required on an as needed basis.

Karry.

[Poppy7402]

Hi Joiedecour & Karry

Thank you so much for your kind words.  Just knowing that others can relate means a lot.

One thing I haven't lost any ability to do is 'beat myself up'.

I need to work on letting go of the old me and accepting the new me, limitations and all.  I've been thinking about getting some counselling for awhile so it's probably time I did it.

Poppy

[HVAC]

I have had MS since 1965. I was put in the slow class because of my cognitive issues. I could not read because of cognitive issues and permanent double vision through college.I could not follow directions in school. I graduated college *** laude but failed out of grad school because of the MS.So I went into Heating Venilation and A/C because it was easier. I could not do it anymore because it was physically demanding so I worked at Veterinarians. Then I could not do that anymore. I had to quit that so I started painting. Now I can't paint. I was not diagnosed with MS until 2009. I thought everyone was like me. I had nothing to compare it to.

When I can no longer do something I do something else. I used to be totally independent. Now I need help for a lot. I take the help. I realize I have problems but I meet people with problems everyday.


I am a happy person. I have MS and Ovarain Cancer which has spread to my bowels, diaphragm, liver, spleen, and lymph system. I have the BRCA 1 mutation so I have a 87% of Breast Cancer on top of the other.

I have a husband who loves me and great friends. We are paying for MS and Cancer on his small wage. I owe so much in medical I thought my husband would be better off with out me. He does not feel that way. Hee is thankful I am here.

I use to have a mind that raced. MS has stilled my mind. It is a much nicer place to be.It is Zen.

I can't say the right words. I have trouble typing. I can't remember things I need to do. I make lists. I go slower. I think of another word. I laugh at myself.

I hated Doctors I spend every Thursday at the Cancer Hospital. Many times it is over 8 hours and lots of it waiting. I am learning to knit. I am writing a book about coping. Then there are all the other Specialists I see.

I used to get mad at the bureaucracy. Last week I thought there are hundreds of people at this hospital who are keeping me alive. That is pretty cool. They did not change the way I see them has changed. They treat well over 300 Cancer patients with chemo a day. That is incredible.

I heard an incredible band this week end. I thought how happy I was. How alive I felt. How happy I was to see these musicians again. I bought several of their CDs. I will listen to the music and relive my night over and over.

It is true that I am the happiest I have ever been in my life. Its adaptability, its acceptance, its life on life's terms and most of all its love. My friends and family love me the way I am wart and all and I have to do the same. The world will not come to an end because of something I say or do. If I was a brain surgeon or was in charge of the nuclear codes I could mess up bad. There just is not anything I can really mess up. If I was to put people at risk I would step aside.

Alex