Bladder Issues Archive

Twists and Turns

– 1 April, 2013Posted in: Bladder Issues, health, Independence, MS, Multiple Sclerosis, Sadness, Walker, Walking, Wheelchair

My dad, who had a stroke a couple of months ago, shared a card with me that at the time we both could relate to. It said, “Do not worry that you’re not strong enough to make it before you begin. It’s in the journey that God makes you strong”.

The card also reminded me of a fellow MSer I met in passing. The encounter was a long time ago when I was still walking on my own. She was admiring how much physical ability I possessed. Then she lowered her head and confided in me, “Nicole, I can’t even lift myself off the toilet.” I subsequently squeezed her hand, offered a genuine show of support then we exchanged contact info and departed.

Now, years later, as I sit in my scooter I’m probably closer to her than she will ever know. I no longer have her info so I can’t reach out. Besides, what am I going to say? “Hey I can’t lift myself off the toilet anymore either!”

I would’ve never thought I’d be here today. It’s been a long journey, but Tom (my husband) and I have made it through. He hears me racing to the restroom and just meets me there. He saves me from actually having to ask for help. It’s a very humbling experience. Actually, it’s mostly in the mornings that I’m the weakest.

How does one prepare themselves for this?

This journey has made me into a different woman. I’m weaker yet stronger in more ways than one. Somehow my dad, Tom, and I are making it through despite all the wired twists and turns…but certainly not on our own.

Tags: chronic disease, god, health, MS, multiple sclerosis, restroom, stroke, support, toilet, walker, walking, weak, weakness, wheelchair

Horse-N-Around

Nicole Lemelle

– 12 February, 2013Posted in: Acceptance, Authentic Happiness, Bladder Issues, chronic illness, health, Independence, MS, Multiple Sclerosis, Physical therapy, Walker, Walking

The reason for my outbursts of relatively gloomy posts is because I just can’t seem to get a handle on what’s happening to this MS body. I just want some sort of reprieve. Now, I say this fully aware that things could always be worse. I am learning from your comments and my readings that the essence of who I am is still here. It’s perhaps why I continue to blog through this onslaught of “new normals”.

I just don’t know of any of my MS friends who are continuing to encounter decline. Or do I? Please let me know because I’m feeling alone on this one.

One good thing is that I recently started horseback riding. I began the process of registering a while back. There was quite a bit of paper work involved. I refer to it as legal mumbo jumbo. But once I got past that I was on my way to the horse farm.

Basically, the type of hippo-therapy I am doing mimics the action of actual walking. It works my core tremendously and also the muscles used for walking. I’ve been riding for three weeks. I go once a week for 45 minutes. I had to work up to 45 minutes of course, at first lasting for only 20 minutes. Since starting I find getting up out of the bed easier, so I think I may be experiencing the benefits already.

Though, I may be on this slippery slope, it’s so important who I surround myself with. I try to associate with supportive folks that love and help me in all my endeavors. I mean riding horses with spastic legs, minimal core strength and slight cognitive impairment is pretty risky business.

But listen, if you tell me this may move me closer to walking with even a walker then…SADDLE ME UP!

By the way they call it therapeutic horseback riding and it may be covered by your insurance if you get a prescription from your doctor. So far I recommend it. I guess Ann Romney was on to something.

Tags: Ann Romney, horse, horseback riding, insurance, MS, multiple sclerosis, therapeutic horseback riding, walker

Sex, Intimacy, and MS

Nicole Lemelle

– 8 October, 2012Posted in: Acceptance, Bladder Issues, chronic illness, health, MS, Multiple Sclerosis, Walker, Walking, Wheelchair

Sex has been on my mind for a while now. So I figured I’ve blogged about urine and bowel issues, why not follow up with sex????? Natural transition, right? No not at all. Don’t worry; I’m not actually going to talk about the act of sex. I’m going to focus on how MS has affected my capacity for sexual feelings or my sexiness to be clear.

At first, I was just so spastic. My legs wouldn’t cooperate. Now that I have muscle relaxants, I’m a tad bit more limber but I don’t feel desirable. After all, my husband helps me with things one normally wouldn’t want any man to be present for, much less help out. I know I’m blessed to have him around but honestly how much of this can we take? I always harp on the activities Multiple Sclerosis has stolen from me but I forgot to mention my sex life. That part of me is somewhere between my walker, wheelchair, scooter and shower bench!

I just don’t have the energy to get “cute”. You know to go the extra mile from presentable to attractive. I think people don’t really look at me that way in a wheelchair. It stinks not being at eye level. I try to shake things up and actually dress like a 37-year woman. We also try to live that way too. Well, as much as we can. I know there are things my husband loves to do together that I just can’t do anymore.

Most mornings all I can do is simply get dressed. Makeup has been a casualty of this war and high heels are impossible for me to wear. I do pride myself on weekly visits to the beauty salon. I get my hair styled and a pedicure with hubby waiting patiently by my side. It’s funny, because I want to at least try to be seductive. But sometimes even with the hair and nails complete, I don’t feel like the diva I think I used to be. I do my best not to take him for granted. I wear dresses and cute sandals as often as I can but my shape is not where it was before this despicable disease. I remember him telling me my legs were his favorite body part of mine. I wonder what it is now? It’s surely not these wobbly stumps I have today.

But despite all of my MS faults, my husband still tells me how nice I look. Now, I just need to convince myself.

That’s the hard part.

Tags: disability, disabled, incontinence, intimacy, MS, multiple sclerosis, sex, sex life, sexual, shower bench, spastic, wheelchair

Worst Job Ever

Nicole Lemelle

– 6 September, 2012Posted in: Acceptance, Bladder Issues, chronic illness, Depression, health, Multiple Sclerosis, Sadness

Silly MS has me feeling tired and looking drunk today. I appear as if I may fall on my face at any moment. The room is spinning and I haven’t had a drink. Look out! I may throw up at any minute. What a great day!

This is a continuation of exhaustion and bizarre symptoms I have experienced over the past week. Some of my habitual problems include vertigo, balance issues and weariness. Lately my symptoms are like a plane without a pilot. I have no control. My circumstance is out of my hands. Constrained by the sadistic beast who is Multiple Sclerosis. Fatigue, muscle spasms, cognitive impairment, bladder and bowel difficulties have all become part of my daily life not just occasional annoyances. It feels like I am slowly deteriorating.

My latest symptom is the feeling of choking. I always choke when I eat and drink but lately it seems to have intensified. Yesterday morning while I was eating an orange it got stuck in my throat and I began struggling for air. I started to feel like I was suffocating. This is the worst I have ever choked and it scared me half to death. The most awful part is I now get the feeling even when I am not eating. Just a normal swallow will set it off.

While the choking scares me, the fatigue irritates me. I’m always extremely weary and I know that getting up and doing something would probably make me feel better, but I can’t. I wake up feeling exhausted and by the afternoon it takes serious effort just to sit up and watch TV. I could sleep for days on end if my life would allow.

Sometimes I feel like having MS is a full time 24 hours a day job with crummy benefits and no pay.

I just need to find out where do I turn in my resignation and live without it.

Tags: bladder issues, choking, fatigue, MS, multiple sclerosis, multiple sclerosis symptoms

Just Asking

Nicole Lemelle

– 21 August, 2012Posted in: Acceptance, Bladder Issues, chronic illness, health, Marijuana, MS, Multiple Sclerosis

My only relief from MS is when I sleep. In my dreams I almost never have MS. Everything is “normal” again. During my latest dream something different happened. Not only myself but also everyone I came in contact with had MS. It seemed so real. That dream got me thinking if everyone in the world had MS, would we treat the disease differently?

Would normal workdays be 4 hours instead of 8?
Would there be vending machines selling Avonex and Betaseron?
Would it be acceptable to be tired after only being awake for two hours?

Would everyone sprinkle Gilenya on their food like salt?
Would insurance companies consider MS medication as preventive treatment?
Would Tysabri have a mascot like Mickey Mouse in order to appeal to kids?

Would there be cheap over the counter MS drugs?
Would neurologist and optometrist be seen as more important than cardiologist?
Would the National MS Society receive funding from every country’s national budget?

Would medical marijuana be legal?
Would 20/20 vision be atypical and not the norm?
Would there be IV steroid treatment centers in every neighborhood?

Would every building be handicap accessible?
Would Novantrone be available in convenience stores?
Would we have liquid forms of Copaxone and Rebif instead of injections?

If every billionaire, prince, king and president had MS would we have found a cure by now?

Just asking.

Tags: Avonex, Betaseron, cardiologist, Copaxone, gilenya, handicap accessible, IV steroid, marijuana, medical marijuana, Mickey Mouse, MS, multiple sclerosis, National MS Society, neurologist, Novantrone, optometrist, Rebif, Tysabri

So Grateful

Nicole Lemelle

– 13 August, 2012Posted in: Acceptance, Authentic Happiness, Bladder Issues, chronic illness, Cooking, Depression, health, Sadness

We all know my problems walking, but over the past few weeks I’ve been having trouble with my left hand too! How much will this blasted disease steal from me??? If I do a lot in one particular day, maybe by 7pm my left hand will start giving me trouble. Trouble that renders me unable to do anything that requires precision in both hands. At night, it becomes dangerous for me to use the stove and aggravating to dress and undress myself.

I remember this happening to me in the past. You would think it wouldn’t catch me off guard like this. I notice that it only happens when I push my body a bit too hard. By now I should be able to gauge when it’s time to stop something. But obviously, I’m still figuring this out. Because when it does happen it scares the dickens right out of me. All I can think of is a bunch of “what ifs?” What if my hand doesn’t come back? What if this is my new normal? How in the world am I going to fasten my bra? Then the mental commentary begins to spiral downhill from there. My leaky bladder, my almost nonexistent balance, the fatigue that shows up and causes me to shut down. My thoughts only temporarily slowed to consider that my right hand was doing fine and my walking though wobbly hadn’t changed.

I should have given more time and effort to that brief thought. Or even remembered that I could be so much worse off. I often dwell on the things I cannot do. Or on the things I miss doing. But I’m happy to report that over the last couple of days, I am nearly back to normal. Furthermore, I am typing normally. Yes!

We went to church this Saturday, like we try to do consistently. The priest so befittingly reminded me that gratitude is the bridge that leads between problems and possibilities. Notice he said possibilities not solutions or in my case cures. He made a point to emphasize… possibilities. So I need to have hope for greater possibilities while being grateful for what I already have.

I regret only briefly considering the things I can do, like my functioning right hand, mental fortitude and my power to choose my attitude toward my circumstance.

I’m so grateful I can type this post today.

So grateful.

Tags: gratitude, MS, multiple sclerosis, prayer

Losing Control

Nicole Lemelle

– 30 July, 2012Posted in: Acceptance, Bladder Issues, chronic illness, health, Independence, Moving forward, Sadness

I often say that losing control is one of the worse things about MS. I’m not just talking about bladder control, although that is a demoralizing demon all by itself. I am talking about control of my daily routines and affairs. I’m very fortunate to have a helpful husband to be going through this with and I have an excellent collaborative medical team.

But the raw control I have over my life is diminuative at best. My husband gets the brunt of my temper tantrums. He sees me at my most vulnerable times. He usually talks me into doing what’s best for all involved. When sometimes I just want to do what I want to do! Since I am a permanent passenger sometimes it’s as mundane as wanting to take a different route. Or maybe go and visit my parents or a girlfriend.

But I’ve got to give it to him, he never asks me to wait in the car while he “runs” in a store real quick. Often friends and family do that. But I understand it and I don’t fault them. After all, nothing involving me is “real quick”. Hubby simply said he doesn’t ask me to wait in the car, because he enjoys my company. That was sweet. Plus, I guess since he is a young man, hauling around my scooter or wheelchair isn’t really a deal breaker. I don’t mention to folks that I do mind waiting in the car. I’m usually just so grateful for the outing. But boy do I wish I had a bit more control of the situation. Wow, I hope now I haven’t already offended someone.