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Social activities, walking difficulties, facial pain and worse

A couple of weeks ago, I had a big party. I had lots of people I am close to there, a mixture of people I see very frequently and really good friends I’ve made in the past but who don’t live near me any more, also my siblings, their children and my mother-in-law.

It was lovely to see my great friends, all together. Unfortunately, I was struggling. I had terrible shooting pains in my face some of the time when I spoke and every time I tried to eat. My walking was terrible, needing two sticks, very slow. But by far the worst thing that happened was near the end of the party. I felt like I needed a poo and got up to go to the toilet. It was so hard for me to walk and took so long that by the time I got there, I had pooed myself. I was wearing a really big pad (because I’d being having problems reaching the loo for weeing as well) so only a very small bit went on my pants and I put it all in the toilet and threw away the soiled pad and I don’t think anyone realised what had happened. But it was horrible.

Yesterday, I had another social event, someone else’s party. There were a couple of good friends of mine there, but it was mostly people I hadn’t seen for ten years. They knew I had been diagnosed with MS when they last saw me, but you probably wouldn’t have been able to tell from looking at me that there was anything wrong with me at that time. My walking was a little skewiff but I didn’t need a stick.

This time, I was using two sticks to walk, couldn’t stand for more than a minute or two, really obviously disabled. People were lovely about getting me food and drink but it was stressful. My facial pain, under control from taking gabapentin, came back. It wasn’t half as bad as it had been and I don’t know whether it came back because it’s getting worse or just because I was stressed.

I wanted to describe this on here because I feel bad moaning about these things to my friends and family. I am also too ashamed to tell them what happened at the end of the first party.

Aw, bless your heart. My first reaction on reading this was the stress of the parties exacerbated things. You’re going to have felt under a LOT of pressure for those. Particularly, maybe, because your condition had worsened so much since seeing some of the people, so I think it stands to reason that problems flared up.

As the second party was yesterday, how are the facial pains today?

I’m not going to say don’t be ashamed of your accident at the first party, because I don’t suppose that’s possible, you can’t drop a lifetime of training/indoctrination about toilet stuff. But no-one here’s going to judge you, that’s for sure.

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HELLO X

i know what you mean and hope your resting after you day out.

i too cant stand for long or use my legs much. but its good you were able to get out and hope you had fun.

well take care x moo

Facial pain still noticeable today - nervous that it’s actually getting worse and I might have to up the gabapentin, which I think is making my walking worse. Caught between the devil and the deep blue sea.

Oh man :frowning: Much as I struggle with my MS issues, I think the fact that they’re mainly mental stuff makes it hard for me to comprehend the awful physical problems a lot of you guys have : / I’ve had hemi-facial spasms twice, and while unsightly they didn’t hurt. I’ve escaped pain issues so far - touches wood - but it’s scary knowing how bad they can be.

It’s awful for people when their medications conflict :frowning: How long are you going to give the face pain before you try a higher dosage?

Been there - done it, Please don’t feel bad, these things happen, I am sure your friends would understand. My advice is perhaps not to plan two do’s in two days, have a rest and quiet self time for a day or so. Perhaps you do not understand the stress that your MS body goes through, so just take it easy and enjoy each outing when you are calm and rested. Take care - Mary x

Hi

I was going to go anon but decided that that would seem as though it was right to feel ashamed!

I have also pooed myself a couple of times, but luckily I was at home both times, and this has made a bit nervous of going out if I feel there’s a possibility of it happening. But, even though my husband & family are very supportive and understanding, this is the first time I have told any one! It’s a strange fact that we are far more forgiving to others than we are to ourselves. You would not dream of judging me harshly for me accidents but you think others will judge you. When I had had a few months to think about it I thought “at least it wasn’t because I was drunk!”.

All the women in my family know that I wet myself quite often and that Tenna Lady pants, as good as they are, don’t always cope. My husband is very supportive and has suggested that I have a bag, permanently, in the car with a spare set of clothes so any accidents don’t mean we have to rush home (obvious really, but I always forget!).

A few years ago we had a big Easter party, a weekend away, my son got married and we went to my sister-in-law’s wedding all In One month. I spent the next month in bed, too weak to get up. I though it was, my one and only BIG relapse, but when I saw my neuro recently he said it wasn’t a relapse, it was exhaustion. So the pain in your face may be feeling worse due to the stress and exhaustion so try not to assume anything just yet, it may settle down a bit when you have had time to rest.

Be kind to yourself, hope you’re feeling a little better soon

Teddie xx

It’s not that I think people will judge me - it’s that I feel it makes me into a powerless child. Crying as I type this.

My two social events were two weeks apart.

Ah! Teddie makes me think of something I read somewhere…about how having MS tends to make doing any/everything harder effort-wise. Everything uses more energy than it did before, so the exhaustion thing makes total sense.

Oh, Sewingchick!

I so sorry that you’re feeling so sad! Thing can be so hard to cope with. It feels like an endless battle, living with this horrible condition. As soon as you learn to live with one set of problems another comes along, the goal posts are being moved continually.

Do you have a urology nurse? They deal with bowl problems as well as the bladder. She/he might be able to suggest something to help.

I really feel for you and send big hugs. xx

I guess this comes down to learning to not let the MS define you, doesn’t it. That’s easier said than done, that’s for sure! Especially as it tends to be a real elephant in the room thing for a significant percentage of the people you know, doesn’t it : /

You can let it all out to us though! We’ll like you’re friendly neighbourhood release valve, I hope! I second the big hugs <3

SC I feel for you I really do. Excuse the inappropriate use but it’s a sh***y thing to happen. It has happened to me on a few occasions fortunately always at home and always when I’ve been alone, i’m the kind of person who if I tell someone something I have to give all the details yet this is the very first time I’ve ever told anyone about my ‘accidents’ I didn’t even tell my MS Nurse. I have decided if it happens again I will tell her and I encourage you to do the same only don’t wait, do it now. It is one of the things that can happen, you, I and everyone here knows that yet still its taboo. I made a decision a long time ago if I go on to develop chronic bowel problems I will ask for a colostomy no idea if they will do it but I’ll fight tooth and nail to get it.

Hope you feel brighter soon.

Jan x

Hi Sewingchick,

Bowel issues are c**p.

I had problems in 2011 my MS Consultant thinks were a relapse.

I had to collect my car from the garage it was a sunny day, the garage is 4 miles away but I decided to walk the dog there. I got half way and began cramping feeling I needed to go. I clenched my bum as I wasn’t near a toilet, I kept walking I was worried, there was a cinema/ eating out complex near but I never tie my dog up outside anywhere for fear he will get pinched. As I got closer I realised I had no choice. As I tied the dog up my body took over and I poo’d myself. I went straight into the Burger King and sorted myself out. Thankfully the nappy sacks I carry to clean up after my four legged friend were in my bag so removed my Knickers and bagged them. Felt so vulnerable Knickerless thankfully had jeans on, hoody tied around my waist. Thankfully the dog was fine. Never been in such a rush to pay for car and get the keys was mortified I might smell. Endured a sigmoidoscopy shortly after which found nothing and the symptoms just disappeared one day.

With my current symptoms I have hesitancy and Constipation. I use a foot stool at home or I can’t go. I can’t go properly at work as no stool. At the weekend I tried and failed to go properly at work. I got the urges in the Car driving home and as I walked into the house my body took over and I went on the way to the bathroom. My thoughts thank god that didn’t happen at work. I see the bladder and bowel clinic next week.

Today to add to the humiliation I discovered my Dog Walker had used my toilet today (he left the seat up). I have no problem with that however. Things were a little explosive this morning so had pebble dashed the pan. I had decided I would clean it properly tonight when I got in, I live alone. MORTIFIED!

Sorry if TMI but obviously not something I can normally talk about. Sounds like a comedy sketch, anyway off to clean the rest of the house I want the whole place to be spotless tomorrow.

Snowqueen x

I use a footstool, too, SO pleased I found that tip online! My Ikea stepstool actually, once again proving what a useful piece of furniture it is to have!

I haven’t had trouble with constipation since I realised what was going on and got proactive with my diet, (that was REALLY nasty for a while there though) but it meant not eating so many things! For a while I cut out all grains apart from oats, eggs, cheese, a lot of milk (I made porridge with water) and really upped my fruit and veg intake, and wrote down how much I drank every day (when I remembered to!).

Now I’ve reintroduced bread and pasta, but not in huge quantities, and only wholemeal, eggs and cheese are ok if I don’t have too much, milk on my breakfast again. I’ve yet to be brave enough to try omelette again, things let me know in no uncertain terms last time that eating that hadn’t been a good idea…

I can’t tell at the moment if I’m just successfully maintaining things, or if a little bit of ability has returned. I did try without the footstool today, but with no success, but with the stool things tend to work pretty well, and with less of the sitting there for 20 minutes before giving up thing now, so fingers crossed!

Reading the problems you guys have, I’m not going to complain about mine because so far they’re nothing compared to what you end up having to deal with.

I dream of being able to lift one of my feet high enough to get it on a footstool when I’m sitting on the loo. Not joking, I have a footstool in the bathroom and I imagine putting a foot on it but I have never been able to.

My face pain is really bad again as well. I am in a sorry state.

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The shooting pains in my face reached a peak of horror on Monday, which ended with me ringing the MS Society helpline and weeping down the phone to the lovely guy who answered. I increased my Gabapentin, reaching a dose of 600mg on Wednesday. But then the pain started to get better and I’m dropping the dose again.

If the pain goes completely, I shall take it as absolute proof that I am still relapsing and remitting. Always a silver lining to the darkest cloud.

Are you getting a chance to talk to your MS nurse about this?

I’m not constipated - quite the opposite.

as far as the MS nurse is concerned, for the last three months my MS nurse’s answerphone has said that the service is ‘temporarily unavailable’. I can get in touch with her by ringing the neuro’s secretary and getting her to leave a message asking the MS nurse to ring me. But when I had neurological pain in a different part of my face, last year, the MS nurse said it was nothing to do with my MS. She knows less about the disease than I do …

Hi How high is your step stool approximately?

I found this one online and the lower step is 12 cm height.

I don’t know, Lenney, I shall go and measure it! It’s considerably higher than that one, for sure! Are you looking for one that’s lower or higher? Here’s a pic:

BEKVÄM Step stool IKEA Solid wood is a durable natural material.  Hand-hole in the top step makes the step stool easy to move.

Also link to product page, that has the dimensions:

http://www.ikea.com/us/en/catalog/products/60178887/#

The step height’s a smidge below 11", alternatively the crossbar at the back is 9.5"