This afternoon bought a visit to the Continence Clinic, along with the bladder diary I kept last weekend. Bladder difficulties (and infections) are fairly common-place in MS, so the only surprise is that it has taken me this long to get there!
The two nurses were lovely, and put me right at my ease - let's face it, nobody likes talking about their bladder and bowel movements! We went over my diary and I was complimented (?) on my bladder capacity - whatever the problems are, it isn't a small bladder. Did I need to go now, I was asked. A bit I responded. So they did an ultrasound of my bladder. Empty. Mixed messages getting to my brain it would appear, plus ca change.
I was sent away with an appointment for three months time, a list of drinks that are 'bladder friendly' and those that are not, an instruction to resume my pelvic floor exercises and a recommendation to set the timer on my phone for three hourly intervals to ensure regular toilet trips. We're not in Kansas anymore Toto!
Friday, 13 July 2012
Saturday, 7 July 2012
MS experiences this month
Everyone's experience with MS is unique. That being said, there are a lot of problems that many patients do have in common. Some of these have been right up there in my trials and tribulations list these last few weeks.
1) Fatigue. Read Christine Miserandino's 'Spoon Theory' if you haven't already. I have become increasingly aware of my limitations the last month or so. The lift at work breaks down and so I have to take the stairs; I need a cash-point on a site visit and have to walk to civilisation and back; I go shopping with a friend and my crutches only to find that Shopmobility are fresh out of wheelchairs. These things lay me out. Sometimes I am ready to crawl on my hands and knees as my legs (even with the crutches) can't cope. I never go out on a Friday without the wheelie-walker as I know I'll need to sit down every 20 feet. And when fatigue hits that is it, you're done; benched for the game. Resting provides a temporary respite but ultimately there is nothing you can do but struggle on until you can lie down and give in.
2) Brain Fog. You're in the middle of writing (or even worse talking) and the word is gone. Not 'tip-of-my-tongue' but gone. You can work around it (play verbal charades) or give up and change direction, and if you're writing come back to it later. The phrase 'umm' is looming large in my vocabulary these days. That is the tip of the iceberg. I forget entire conversations. I know they happened, I just can't remember what was said (so, so bad when it happens with your boss). Then there are the times when everything just takes longer - it is like stirring treacle; often I get fed up and give up... although again, not an option at work, just have to plough on.
3) Sensory abnormalities. I've lived with these nearly as long as I've had MS. My feet are so numb I can only tell if I'm wearing socks by looking (great for the cat who likes to bite and scratch feet) this extends most of the way up my legs. At the same time, oddly, the slightest touch (furniture, water in the shower) is agonising pain - even though I CAN'T FEEL! The same is true for my hands - small and intricate tasks (even typing) are a total chore; try going about life with a pair of rubber gloves on and you'll get the picture.
4) The uncomfortable (even taboo) subject of bladders and bowels. Whether hesitancy or urgency there seems to be some sort of problem. Not knowing that you need to go until it is too late, needing to go but the body refusing to co-operate. I've now been referred to a 'continence clinic' which means I'm keeping the strangest diary ever (and I've kept a few) of what goes in and out of my bladder. Yes, I have to pee into a measuring jug.
I share these things because I have found the biggest comfort with the peculiarities of MS is to know that you are not alone... no matter how strange, odd, or embarrassing - odds are someone, somewhere is going through just the same thing or has been there before.
I'll leave you with one of my favourite quotes from TV's "The West Wing" (if you've heard it before, bear with me):
1) Fatigue. Read Christine Miserandino's 'Spoon Theory' if you haven't already. I have become increasingly aware of my limitations the last month or so. The lift at work breaks down and so I have to take the stairs; I need a cash-point on a site visit and have to walk to civilisation and back; I go shopping with a friend and my crutches only to find that Shopmobility are fresh out of wheelchairs. These things lay me out. Sometimes I am ready to crawl on my hands and knees as my legs (even with the crutches) can't cope. I never go out on a Friday without the wheelie-walker as I know I'll need to sit down every 20 feet. And when fatigue hits that is it, you're done; benched for the game. Resting provides a temporary respite but ultimately there is nothing you can do but struggle on until you can lie down and give in.
2) Brain Fog. You're in the middle of writing (or even worse talking) and the word is gone. Not 'tip-of-my-tongue' but gone. You can work around it (play verbal charades) or give up and change direction, and if you're writing come back to it later. The phrase 'umm' is looming large in my vocabulary these days. That is the tip of the iceberg. I forget entire conversations. I know they happened, I just can't remember what was said (so, so bad when it happens with your boss). Then there are the times when everything just takes longer - it is like stirring treacle; often I get fed up and give up... although again, not an option at work, just have to plough on.
3) Sensory abnormalities. I've lived with these nearly as long as I've had MS. My feet are so numb I can only tell if I'm wearing socks by looking (great for the cat who likes to bite and scratch feet) this extends most of the way up my legs. At the same time, oddly, the slightest touch (furniture, water in the shower) is agonising pain - even though I CAN'T FEEL! The same is true for my hands - small and intricate tasks (even typing) are a total chore; try going about life with a pair of rubber gloves on and you'll get the picture.
4) The uncomfortable (even taboo) subject of bladders and bowels. Whether hesitancy or urgency there seems to be some sort of problem. Not knowing that you need to go until it is too late, needing to go but the body refusing to co-operate. I've now been referred to a 'continence clinic' which means I'm keeping the strangest diary ever (and I've kept a few) of what goes in and out of my bladder. Yes, I have to pee into a measuring jug.
I share these things because I have found the biggest comfort with the peculiarities of MS is to know that you are not alone... no matter how strange, odd, or embarrassing - odds are someone, somewhere is going through just the same thing or has been there before.
I'll leave you with one of my favourite quotes from TV's "The West Wing" (if you've heard it before, bear with me):
This guy's walkin' down a street when he falls in a hole. The walls are so steep he can't get out. A doctor passes by and the guy shouts up, "Hey you! Can you help me out?" The doctor writes a prescription, throws it down in the hole, and moves on. Then a priest comes along and the guy shouts up, "Father, I'm down in this hole; can you help me out?" The priest writes out a prayer, throws it down in the hole and moves on. Then a friend walks by. "Hey, Joe, it's me. Can ya help me out?" And the friend jumps in the hole. Our guy says, "Are ya stupid? Now we're both down here." The friend says, "Yeah, but I've been down here before and I know the way out".
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