Gathering Wool

[goatgal]

Jes Mc D asked what I have been doing. I don't do as much as I want. Or as I should. There is never enough time to finish what I start because everything takes so much longer to accomplish than it once did. I don't post often because if MS cases were aligned along a bell curve, mine would be located on one of the tails. The one representing less severe cases. This induces guilt: how can I piss and moan when others have it so much worse? So, I stay mostly silent, but I think. I read, I try to understand the anger that occasionally rises in me about the many years to diagnosis and the suffering of others like Allen who breaks my heart in two. I also keep a notebook to collect the thoughts of those who express ideas I wish to think about or remember. Here are some (in no particular order and occasionally without the source).

Multiple Sclerosis was once called hysterical paralysis.

Susan Sontag, Illness as Metaphor: The less we understand about a disease, the more we tend to stigmatize it.

Atul Gawande (probably writing in the New Yorker on the medical profession; I believe he is an MD): Nothing is more threatening to who you think you are than a patient with a problem you cannot solve.

Megan O'Rourke in The Atlantic, Aug.15, 2019, writing on her struggle with Lyme disease: Not only did I suffer from a disease, but I suffered at the hands of a medical establishment that discredited my testimony and - simply because of my search for answers, and my own lived experience - wrote me off as a loon. In the throes of illness, cut off from the life you once lived, fearing that your future has been filched, what do you have but the act of witness? This is what it's like. Please listen, so that one day you might be able to help.

And dear Jes, perhaps there is advice for you in that old adage, let sleeping dogs lie, especially when nasty weather keeps old dogs and old gals indoors with their thoughts. I hope you're not sorry that you prodded me.

[rjoneslaw]

It’s good to hear from you.

Sometimes doing nothing is really actually doing something. We here understand that. So try not to be so hard on yourself. Also do what works best for you and not others

[Allen5280]

Oh my dear, yes we are all along different stages, paths but it's no less traumatic. Often times others, when they come around, talk about their difficulties in life. Then they stop, mid story and start apologizing for its "not as nearly as bad as what you (me) deal with". My reply is always the same. "The worst experiences that I could understand are only the ones I've been through. For someone could explain in detail what they were going through. I've come to realize I couldnt comprehend it until I was in that exact same set of circumstances, no matter how hard I tried. So I hope that you use every resource to live the best possible life you can. For better times are so very precious, don't waste a single moment not trying to live the very best life you can. Grab the tools and hold on to each and every one. I often times am quiet for I fear letting others know what can happen when things dont go so well. So.... I'm trying ro get over the opposite end of the spectrum. That's what were here for. 🧡💙🧡💙🧡💙🧡💙😁💙🧡💙🧡💙🧡

[kdali in reply to Allen5280]

I really wish you would reconsider writing that book I think you should write.

[mrsmike9]

I, too, feel almost guilt for not being as badly off as others. (I speak physically because I know I'm off mentally!) But I know we all have our own road to walk. I figure when people who have MS worse/longer, etc. have been where I am now and probably felt the same way I do now with the same struggles. Some may give pointers how they dealt with it. It's so helpful! So go ahead and complain because someone may be able to lift your spirits. Someday you will lift someone else's.

[carolek572 CommunityAmbassador]

So wonderful to hear from you goatgal . We are all on different paths, each with our struggles but you shouldn't compare. There is an old saying that goes "we live two lives, and the second one begins when we realize we only have one life to give."

[goatgal]

Everyone who responds is always so positive and supportive; another reason to treasure this site. Please don't misunderstand: I try not to compare but I do realize that I am not as affected (or affected less visibly) inevitably resulting in a bit of comparison. I was raised to be silent, sometimes mocked for what I tried to express, and trained to accept discomfort, pain, etc. This didn't make me a stoic, but it did keep me from self expression and self knowledge (what we can't talk about becomes difficult to express). As an adult, when I had the first inkling that maybe what I was experiencing was not normal, I struggled to find the words to express what was happening but when doctors discounted it, telling me it must be my imagination because they could see nothing obviously wrong, it was easy for me to blame myself because my family model was so ingrained. In my notebook quotes, I think the most powerful are these from the writer with Lyme:This is what it's like. Please listen, so that one day you might be able to help.

That is the power of this site. People here listen. No one feels threatened by not knowing the answer. People here help in ways that support, encourage and heal. We listen. I just wish every medical practioner did and I also wish those training to work in medicine were trained to listen and encouraged to take the time to do so without feeling rushed or threatened by what they haven't experienced or don't completely understand.

[carolek572 CommunityAmbassador in reply to goatgal]

In my reply, I just wanted to let you know that I like you just the way you are, my friend

[goatgal in reply to carolek572]

I trust that here. Thank you.

[carolek572 CommunityAmbassador in reply to goatgal]

vHugs and vSmiles anytime that you need them, from me to you

[Peruzzot in reply to goatgal]

I went to a conference a few weeks ago and one of the doctors who spoke is also a professor and is doing some training sessions for medical professional wannabes. She has people who are MS patients come in and talk about what their symptoms are and how they deal with it, best doctor visits and the worst ones, frustrations with the disease and medical care and anything else we want to share. The wannabes then get to ask questions for a few minutes. Then they get into small groups to discuss the case study and how they think it should be handled. The cool thing about these training sessions is that the wannabes are future neurologists, pharmacists, physical therapists, occupational therapists, psychologists, nurses, general practitioners, counselors and a host of other things. The idea is that these new professionals will see us as a whole person and get a better idea of what we have to deal with than just what they read or hear in a 10 minute visit. I volunteered to speak to the group she's trying to coordinate now for mid March at MUSC here in the Charleston area. Maybe if more universities do this we can start getting better care.

[kdali]

I see your guilt and raise you some shame!

Sometimes it’s nice to scroll down and see that someone else is also pissed off about their fatigue, and then read what everyone does to help get though it, for example. I don’t believe that your struggle is invalid because someone else here has a more difficult life.

I tell myself everyday that I have to get my shit together, twice per day if I visit this chat.

[TexasLawman]

Those are very touching and true. I had 3 false diagnoses before MS. One being PML which was a very hard year for me. It was then that I rushed to write my book. When I didn’t become disabled or dead after a year, I went back to the doctor for answers on why she thought PML, she just said “oops, sorry. You should be happy!” I wanted to sue for malpractice but had other things to spend my energy on.