Isolation

Since I've been at this MS thing for a while now, I've gained a tremendous amount of friends and acquaintances that also suffer from the disease. While Multiple Sclerosis may affect all of us a little differently, many of us have behavior in common because of our illness.

We all, myself very much included, have periods of time where we try to isolate ourselves. Withdrawing from life can be a frequent reaction for those with chronic illness that makes all the sense in the world, but can be very detrimental to our health.

WHY DO WE DO THIS?

Doesn't make sense right? How often do we complain about loneliness? I know I do a lot.

Having a chronic illness can be a very lonely affair. That's actually part of the reason I'll isolate myself though. I'll stop talking to friends, stop trying to leave the house, even stop looking at social media. I'll pull away, even though I'm pretty far from being an introvert. I like people and talking to people and seeing people.

There are times though, when my illness makes me feel like I can't relate to anyone at all. That's one of the reasons I get that lonely feeling in the first place, I start to realize, or at least feel, that I'm different than most people. That there is no way they can relate to what my life is like.

AT LEAST IT'S NOT.....

I've had many conversations with people that I'm 'acquainted' with or that I just met, and even some close friends. One saying that seems to frequently be said is, 'At least it's not cancer.'

Yeah, you're very right. At least it isn't cancer. Thank you for pointing that out. However, when you say that, to me it feels like you are trying to discredit what I'm going through. I'm not saying that what they stated is false. But Cancer & MS are two different things.

First of all, I'm in NO WAY discrediting what people go through that have cancer, or any other chronic illness. But I don't think people understand how difficult it is to compare illnesses that are on two different levels.

How are they different you ask?

Well for one, MS is a life long illness. Yes, cancer kills people. The main thing they have in common is there is no cure.

People with MS are living day in and day out with this disease. Not knowing when there will be a cure, not knowing if we will go in to a flare soon. Not knowing if we will be able to function the next day.

This continues on and on and on, for years.

With this daily struggle, it can and has brought on depression. I feel like there is more awareness about Cancer, obviously, so it's easy to compare Cancer to other illnesses. Cancer is just horrible and we need a cure, period.

Mysteries of the Cerebellum Webinar

Enjoy this webinar on the relationship between Multiple Sclerosis (MS) & the Cerebellum. More importantly…find out what you can do about it!

 (Scroll down if you just want to watch the Q & A section)

 For more information, contact Sue Ellen Dickinson at sueellendickinson@gmail.com 

Stand Up to MS Bullies

This is one of those pieces that I shouldn't have to write. I shouldn't have to talk  about people shaming and talking down to people who suffer the same illness as they do.

I shouldn't have to talk about bullies on a website related to Multiple Sclerosis. But  sadly, I feel this is a reminder that must be made.

Bullying has become a massive problem in MS groups throughout social media, and it needs to stop. We need to stand up to this madness; we need to come together as a community and stand up for those that can't.

A RECENT INCIDENT

I'm very much a veteran of this disease, with nearly 20 years of diagnosis and a lifetime of living with someone who suffered from MS.

In all of my years, I have never seen the type of behavior and agenda pushing that I've seen in recent years.

The final straw for me happened just the other day, when the admin of an MS group began shaming someone talking about their depression, essentially calling this person an attention seeker.

Depression is something I've talked about a lot here, and it's an extremely common issue among those with MS. Depression is very much a disease on it's  own: a comorbidity with MS that can spring from MS and the damage in the brain.

It is not made up. Going for a walk in the woods will not solve it, neither will a diet. It's serious and life-threatening and should never be dismissed. This is just one recent incident.

WEATHER CHANGES: How Cold Air Affects Me

 By Jackie Zimmerman—November 21, 2013

I've had my fair share of brain meltdowns in the scorching summer sun. You  know, those moments where you can't form a sentence or you're so tired you  could just nap for a whole day.

The heat does a lot of interesting things to us and I'm no different. For me generally the heat just makes me weak all over, mentally weak and physically  weak and I think that is common among most people with MS.

 What I have not seen as common is cold weather symptoms, or maybe people just aren't talking about them as frequently.

CAN'T SEEM TO ALLEVIATE COLD WEATHER SYMPTOMS

In the summer time, generally I just need rest to recover from the effects of the sun, however in the winter my symptoms come and go with no way to alleviate  them.

For me, its mostly in my legs. I find that the nerve ending in my legs freak out in  the cold air almost as if all of the nerves are turned on high all at the same time. Most of the time it is not painful, but sometimes it can be. I find that it is  mostly just thigh uncomfortable and that it makes my knees very sore.