Fear of the shower...

[Thinkimjob]

And that explains the wave of relief when it's all over for another day.

I am so glad when it's done, but then the tension and anxiety builds up as the time approaches to do the dreaded but necessary task again.

Be it shopping or showering or having to go somewhere or whatever...

It feels insanely good to have the groceries in the cupboard, the month's medication collected, a full tank of fuel in the car and enough clothes washed and dry for the week.

The fear of the fatigue is worse than the actual fatigue.

Surely all this stress cannot be good for us. I shudder to think what all that adrenalin must be doing.

[sassycatsms1]

showers

oh yes i am so glad to all said all thes things i feel a long time to but cant explain to anybody elses. havivg to plan my shower days ahead the [event ] as i call it and . got safty stuff up and someones here .but it is drains me befor and after also . spong bath do well to . so good to hear from other s i so am relieved

[hunterd]

have you ever looked into an electric razor, or a rechargeable razor. I know that they market them to men and women so I would think they can shave what ever needs shaved adequately. With that being said, I am a guy and do not need to worry about all the shaving that women do, after many losing battles with my disposable razor ( many of which ended in bloodshed) I switched to an electric razor.

I also have an aide that assist me undressing and showering then redressing. I do not know what the health system will provide you with. It is definitely at least worth checking into.

[MSW1963]

Thinkimjob, I've often thought about adrenalin triggered by the 'flight or flight' level of stress many MSers experience, 24/7-365, for the most part.

The consequences of flight/fright adrenalin on an otherwise healthy brain can be life altering in the worst possible way, much less for a brain full of 'scars', and for anyone in a fragile emotional state from MS.

Other times I think the lack of 'normal' adrenalin may explain and/or contribute to why or how I experience fatigue that seems to dominate my life.

[rdmc]

Thinkimjob, I've often thought about adrenalin triggered by the 'flight or flight' level of stress many MSers experience, 24/7-365, for the most part.

The consequences of flight/fright adrenalin on an otherwise healthy brain can be life altering in the worst possible way, much less for a brain full of 'scars', and for anyone in a fragile emotional state from MS.

Other times I think the lack of 'normal' adrenalin may explain and/or contribute to why or how I experience fatigue that seems to dominate my life.

I found your previous post about fight or flight very interesting.

I imagine most people haven't had their "adrenaline levels" tested, but when I was having BP spikes, the first thing they did was test my catecholamines (there blood work and a 24 hour urine test) to determine levels of epinephrine (adrenaline) and a couple other catecholamines.

Mine were very high, and they often see this as a result of a tumor on your adrenal glands (pheochromocytoma), so I had adrenal gland MRIs...no tumor.

After lots of tests, it was determined that my excess in adrenaline was caused by an MS lesion. I take a beta blocker to correct it, which is an easy fix, and after starting on the beta blocker, I noticed a huge reducion in my physical feelings from stress.

But it makes me wonder if they've ever done studies on the level of adrenaline in the average MS patient. Correlated with your theory about normal everyday events being recognized by the body/mind as "danger" and evoking the fight or flight symptom would be very interesting.

[zoysia]

Me, too! But not for the same reasons--my fears target glass shower doors and humidity! (Any temperature of the water creates humidity in the bathroom.)

I shower every third day due to wearing an insulin pump. The reservoir/set needs changing every 3 days, so I avoid the little pluggie-thingies they give you to help you take a shower every day and just wait until I disconnect the thing entirely.

Major bonus in doing so, it has helped my skin be less dried out (natural oils allowed to work, even) but my hair needs washing at least every 3 days. Just too matted if not.

It's more an acceptance on my part of "Hey! You might smell! So what?!" and have gotten over the grossness of it all. I just don't do a whole lot, go out in public much on that last 2.5-3 days' time.

But! It's more the humidity IN the shower the wears me completely out (weakness sets in)! Always has, always will. I can remember being a young girl and taking nice, hot showers and having to get out very shortly after starting because I couldn't breathe. Was very scary then and was wayyyyyy before MS dx.

Then, the fear of the glass doors we had installed during our recent renovation--if I slip, oh my! Yes, pretty to look at, er, very nice to look at (good for sale-of-house-value) but for me living here? Completely impractical. I've suggested getting the other two bathrooms finished and start looking for new place.

Oh! And shaving legs? ... I'm a woman, and haven't shaved in years because of fear of the razor. Electrics just don't work for me--my hairs are too tough for those to handle (so sad). So, some things that are "pieces of cake" to "normal" people are valid fears for us. I figure, though, that if the "normal" people have a problem with me, it's their problem, not mine.

Like I said, for me it was more accepting myself for the way I am now, not what I used to be. Stinky, hairy, sweaty, me!

[MSW1963]

rdmc, I find your experience with excess adrenaline fascinating, and glad to hear that you are experiencing relief with the bata blockers. Also that part about not having a tumor on your adrenal gland, yikes!

I tried a search for MS brain lesions and excess adrenaline, but came up empty as far as any relevent research that's available on line.

In the past I experienced long periods with extremely low BP that coinced with the onset of my ever present fatigue, before I was officely dx'ed. But no spikes in BP that I'm aware of. These days, I'm either low, or spot on 'perfect' BP.

If you have any suggestions about MS lesions and excess adrenaline, I'd appreciate getting a link or whatever info you care to pass along. I will be discussing it with my MS doc during my next appointment.

I somethimes think for me it's the 'lesions burden'=too many to count brain lesions that affect my response to stressful situations followed by the rush of adrenaline.

Thank you for sharing the info with me/us.

[LostInSeattle]

LostInSeattle

I loathe showers. It has become an utter ordeal, just to get clean. Yes, I have a bath chair, yes, I have non slip mats, yes I have hand rails.

The daily ritual just fills me with dread. It's not just the chance of slipping over, although that worries me.

My legs start rattling as soon as I sit down and turn the water on.

It's the hour it takes to recover from all the undressing, washing, drying, getting dressed again. And then you have to hang up the towel.

Shaving legs and armpits, washing hair in general, slippery soap -aarrgghhh.

I'm avoiding a shower right now in fact. The old sponge bath is looking very good these days.

What do you do?

To help with the shaving I use baby magic or baby oil it helps so much that I only shave legs every month. Under arms a bit more but it helps that area too. I wish you the best.

[rdmc]

rdmc, I find your experience with excess adrenaline fascinating, and glad to hear that you are experiencing relief with the bata blockers. Also that part about not having a tumor on your adrenal gland, yikes!

I tried a search for MS brain lesions and excess adrenaline, but came up empty as far as any relevent research that's available on line.

In the past I experienced long periods with extremely low BP that coinced with the onset of my ever present fatigue, before I was officely dx'ed. But no spikes in BP that I'm aware of. These days, I'm either low, or spot on 'perfect' BP.

If you have any suggestions about MS lesions and excess adrenaline, I'd appreciate getting a link or whatever info you care to pass along. I will be discussing it with my MS doc during my next appointment.

I somethimes think for me it's the 'lesions burden'=too many to count brain lesions that affect my response to stressful situations followed by the rush of adrenaline.

Thank you for sharing the info with me/us.

Here's a link about catecholamines. Down in the section called "modality"...it explains about high catecholamines being caused by the pheo's (the adrenal tumor I mentioned) or from the brainstem. Interesting enough, it says stress can also elevate catecholamines evidently not to high levels, but elevate them nonetheless.

http://en.wikipedia.org/wiki/Catecholamine


I'm not super informed about medical technicalities. All I know was that I was having BP spikes and irregular heart rate (SVT) and after all the testing that included heart tests, MRI of my adrenal glands, 24 hour monitor for BP, 24 hour urine test for catecholamines, the electrocardiologist, the bp specialist, and my own doctor told me those problems led back to MS. I do have brainstem involvement from my MS...so I'm assuming that's why they came to their conclusion.

I will say that I am very pleased that once identified, I have been provided meds that address the problems and keep me out of the ER (which was where I ended up more than a few times because of BP or heart rate issues.)

[palmtree]

Yes. Showers are very draining for me, too. I do it before bed so I can sleep afterward. The hardest thing is combing out my long thick mop of hair. Since my MS diagnosis, my hair has gotten twice as thick.

Maybe the answer is to take luckwarm baths and not get your hair wet every day.

[Mamabug]

Actually, when not regularly washed daily, hair can easily get adjusted to washes every two - three days.

And, you can "freshen" the rest of you up at the bathroom sink as needed.

~ Faith

[MSW1963]

rdmc

Thank you for the link. I will give it a second read when I'm feeling more focused, most of it was 'over my head' even on a good day. There were a few interesting, relevant portions that did peak my interest.

I've experienced episodes of such intense weakness, I thought there must be some chemical imbalance happening in my body to explain how I was feeling. I considered it was possibly hypoglycemia. MS doc ordered routine testing ruled it out.

I'll post an update after the next OV if anything comes of it.

Thanks again for the link