This will be embarrassing

**Warning** this post will contain some possibly disturbing information about bodily functions.

I’ve got MS related issues on the brain this week, lots of doctors appointments and time to actually pay attention to what my body is telling me. Now this will be embarrassing for me to talk about but part of me wants to rebel against that idea because what I’m speaking about is only natural.

Today I had my regular appointment with my urology nurse, I go to her to speak about my catheterisations and how they’re going every so often. You see the MS has made my bladder misbehave, become over active some days and underactive others leading to some very annoying incidents and quite a few UTI’s. I went through Urodynamics testing and with the results my consultant came up with a drug that has worked to calm everything down but meant I needed to self catheterise to make sure I was emptying my bladder as well as to keep my urethra open (it has a tendency to become so tight I can barely pee).

I’m so used to talking about this side of things now that it’s not really as bone gnawingly mortifying as it used to be and I’ll even admit on here that I have to have a protective cover on my bed (I just got some special ones called Kylies…very handy things) but the next bit will be a bit of a difficult one so bear with me.

While I was chatting with the nurse I decided to bring up another problem with her that is not exactly under her jurisdiction but so close I thought it couldn’t hurt.uchr_02_img0146 (1)Anyone who doesn’t want to read too much information…look away now.

**I have been having problems with my bowels, not constipation exactly but just not being able to pass anything easily unless my IBS kicks off. I’ve figured out that it’s because my anal sphincter isn’t opening properly as well as the possibility that the muscles between my anus and vagina just aren’t strong enough any more to keep things in place while I try. Are you ready for the truly embarrassing bit? Well because I can’t evacuate them properly I’ve been having to ‘Manually evacuate’ them…now this is not as disgusting as it sounds, it’s not like I’m having to touch anything disgusting..I just have to press down on my Perineum, the muscle are between the anus and vagina in order to make sure that as I try the right thing happens.**

OK it’s safe to read again if you wanted to avoid the information overload.

I told the nurse about this today and after she thought about it for a second, out came a pen and she started making notes, chatting to me about options as she did. The mention of a Barium meal did not fill me with joy, but luckily she didn’t want to make me go through that either so she’ll be referring me on to a nurse who specialises in this area of things and can help me figure out if I can make any changes at home that might help with it. Things like increasing fibre and water intake can do wonders when it comes to your bowels…but since even when I know I’m not constipated for certain (take a guess why) I still struggle to open that damn sphincter so I have a funny feeling it won’t make much difference and I’ll end up having more investigations.

You know what? I’ve never had a healthy digestive system for one reason or another but I never spoke about it…not really, until the past couple of years. MS has changed so many things about my life and having to be willing to deal with some of the most embarrassing subjects most of us will ever need to speak about is possibly the part I hate the most.

As I stood up to leave, she looked worriedly at me asking if I was always in such obvious pain, I explained to her about the issues I’m having with my tendons in the lower back at the moment and joked about how broken I am.

When I was leaving the department one of the receptionists called over to me asking if I wanted to sit down for a while before I left because I wobbled over a little on my way to the door…again I explained this wouldn’t help, that it’s just something I’m having to put up with.

It took me about ten minutes to do the walk to the car park that would usually take me two being over taken by an elderly lady with one of those wheeled frames and her two middle aged children (I assume) when I had to stop and lean against a lamp post for a while. When I looked up and began walking again the man of the three looked back at me and mouthed ‘Are you OK?’ with a very worried look on his face, I smiled, nodded and he carried on his way.

That last minute of walking to my car found me with tears in my eyes, telling myself that I could not cry while his face kept flashing into my mind. As soon as I sat down in the drivers seat those tears came whether I wanted them to or not and spent the next 10 minutes sobbing in my car hiding my face behind my hand and wishing I had parked away from the entrance because every car coming in could look straight in my window and see me. I haven’t cried like that in a long time, with no way of snapping myself out of it and with screams trying to escape that I blocked into my throat so that only I could really hear them. All because I was shown compassion by a stranger. I’ve never dealt well with people asking me if I’m OK when I’m not.

I’ve still been in pain today, so many areas of pain that I’m not surprised that the pain killers just aren’t enough to deal with it…but I’ve spoken to my MS nurse this morning after I got home and she’s getting the MS physio to try and fit me into her schedule and see if she can figure out what’s happening to me, I just hope she knows something about fibromyalgia as well so I can get her to do a basic test for it and see if I can get some answers.

I know I’m going to have to ring in sick if I’m still like this by the time my annual leave is over, why can I never catch a break with my health.

I’ll wait till Monday and see what I’m like, if it’s no better then to the GP’s I’ll go, armed with a whole load of information about Fibromyalgia to see if they will test me/refer me and a begging expression to get a sick note so that work can’t complain about me being off!



15 thoughts on “This will be embarrassing

  1. I wish I had a magic pill to help you to feel ever so much better..sending lots of love and comfort your way. ((((hugs))) xxx

  2. I am sorry that you are having so many health problems, you are in my prayers. I also would like to leave you a personal message on Facebook concerning this as well. xx

  3. I deal with some physical illnesses also and they seem to exasperate the mental illnesses or vice versa. Sorry you’re in so much pain, hope some rest or maybe referrals can help.

    1. Sorry to hear you have to deal with crappy stuff like this too, I know a lot of my mental health and physical health is linked and usually I only have to deal with one at a time! It’s times like this when I have to deal with both that really make me struggle 😦 I hope you’re ok and thank you xox

    1. Thank you Juliet, we all just have to keep plodding onwards don’t we! No matter what comes up at least I know I can speak about it on here 🙂 xox

  4. Hey you!! I’m with ya hun fk the body right you are not your functioning or not functioning anything right!! Your beautiful, very smart, funny and fantastic. So much of me doesn’t work, but what ever!! And “old” people pass me in the cross walk all the time. So cry those tears sweety because you rock!!! I’m sorry for your trouble just know in my own PD- connective tissue issue (lol) I’m right here with you.

    1. Thanks Benjamin 🙂 You’re right we’re more than what our bodies can or can’t do! It’s just so frustrating :S I’m not even 30 yet and little OAP’s are more able bodied than me.
      Ah well our tissue issues 😆 won’t stop us living our lives! It’s good to know there are so many people around that understand about both the physical and mental problems I have xoxox

  5. Thank you for posting this! I have the same bowel problem and couldn’t figure out exactly how to explain what was happening. You did a terrific job. Unfortunately I wish I knew pressing the perineum would help (have used other, less attractive options lol). I also have a issue with the sphincter being too loose and I almost don’t make it to the bathroom. I haven’t come up with any fixes and just deal with it when it happens, which thankfully hasn’t been too often (yet).

    I do hope your back is better.

    1. I was hoping that by posting this it would help others to at least speak up about it and so far that seems to have been the case 🙂
      Sorry to hear you struggle with this too it’s so annoying! I did once try the less attractive option 😆 but I figured out that I could manipulate it out by pressing on the vaginal wall and then I realised I could press on the perineum. Trial and error as with most things!
      Have you seen anyone about it? It’s worth a try and it’s amazing what they can come up with…things like the diet changes etc are obvious but there’s the peristeen system and even things like having a spinal implant that can control your bowels!(they suggested it for my bladder but we found an easier solution)
      My back’s still bad 😦 and probably will be for some time but I’m coping…not working so plenty of time to rest at the moment xox

      1. I’ve never even indicated a bowel problem. I didn’t know if it was just me. Thanks for the encouragement. While I don’t suffer badly, if it gets worse I will talk to my neuro or gastro doc.

        Enjoy your time off!

      2. I know it can be hard to bring it up but don’t suffer in silence. From what you’ve said it definitely needs looking into to come up with some ideas to make things more bearable.
        Thanks for speaking up about it I’m glad me writing this has helped a little, that’s what I had hoped 🙂 xx

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