Stupid embarrassment

Over the last few weeks I have been having more and more problems with my bladder again. It is something that I have the solution here in the house but I avoid using simply because it is a fiddle and strangely one thing that I have never been able to get my mind to accept as a solution, rather than a problem in it self. I suppose we all have the one thing, that monster that hangs around and we do everything we can to avoid, mine is catheters. Bladder problems are actually one of the most common problems that MS causes and for some it is actually one of the first symptoms. For some reason you are both incontinent and unable to empty you bladder. I know that is a combination that doesn’t instantly go together, as if you are incontinent you would think it would empty with ease but what happens is you will leak, often just a few drops sometimes a slow stream, then when you get to the loo, it keeps stopping and starting, often just slowing right down and you can sit there for 10 minutes with that process repeating itself until you are sure it has to be empty, until you stand up of course. The bad news is that even then there is probably a lot still there hiding. For a long time I just got on with it and did my best but then I started to get frequent infections, that was the point the NHS took over.

I actually had to spend a week in hospital learning how to insert a catheter, one week, it was nuts. After my third attempt I was ready to go home but no, I had to stay a week. My input of fluid had to measured against the output or urine and they wanted to watch me for several days using the catheter so they were happy. Now I doubt you have ever had to have a nurse with you when you want to go to the loo, their faces within a meter of an area that not many have ever seen, coaching you. I can tell you now I would still have a full bladder if it hadn’t been for the catheter, as it was simply embracing. To this day it is still embarrassing although I don’t have the nurse with me the whole process causes embarrassment even when there is no one here.

If you haven’t see a self catheter kit you probably won’t understand how they could possibly be but it is. The new packs aren’t as bad but at firs they were a horror, I had to take with me not just the catheter but wipes as well, there was a constant worry that someone would see them. To use them you had to open the seal, add sterile water from a bottle you also had to take with you, then wait for 5 mins for it to activate the gel, which lubricated them. Then wash you hands before inserting the catheter, empty your bladder, then try to dispose of all of it so no one saw all the pieces. This all meant that from start to finish I was in the loo for nearly 15 minutes, that is a long time, that alone to me was embarrassing especially at work. The new packs are smaller and contain the water already so the prep is cut in time and there are less things to juggle and hide, but even at home I feel this need to ensure that they are always hidden.

I know I have to get over this as some point as well the future will means I will have no option not to use them, but even Adam collecting two months worth from the chemist is, you got it embarrassing. Although he knows all about them I still want to hide the whole process and find myself, lifting rubbish in the bin so I can hide the used packs and the huge boxes under it, as I don’t want him to see them even in there. I don’t understand how I can sit here and write all this but the thought of going right now and using one fills me with dread, because I then have all that palaver to go through. Stupid, stupid, stupid I know but I can’t get past it. It’s 8 or 9 years since I first started using them and stopped just as quickly. There use is now when I have no other option, stupid because it puts me at risk of infection. Infections that put me in real risk of illnesses sever enough to put me in hospital, as my body wouldn’t cope with it. I should use them 3 times a day, but knowing what could happen and the risk I take by ignoring it, just isn’t enough to make me grow up and admit to myself, properly, inside where it matters, that no body cares other than me just how embracing it is. So what if another part of me needs intervention, I guess just me.


Last night I actually managed to stay up until 10 pm, it was the first time for weeks, I’m not sure what made the difference but I was really glad for once to not be running away and leaving Adam just sitting there by himself. The simplest things make you feel guilty when it is out of your control. No matter how I try those are the feelings that I have never managed to get under control, the guilt of not being able to have the life that you and your partner thought was ahead of us and now because of something you can’t do anything about, it has all gone. Once I had been through all the other emotions that having an illness like MS has attached to it, guilt is the one that even 11 years on from diagnosis still manages to pop up all the time. Not being able to work is the thing I feel most guilty about as we have lost a good standard of living to a limited one. If I was fit and healthy I would still be earning a good income and we wouldn’t worry constantly about the bills and the mortgage. I’m not saying it is a feeling that is there every second of the day but it is there and it is an unwanted pain in the neck.

Strangely my lungs were filled again this morning but the worst they have been yet, but when I stopped coughing I actually fell better than yesterday, and my MS knows it too. Spasms in my left shin and tingles in both hands. I hate tingles they are like mild pins and needles but they make you want to scratch but there is nothing that needs scratched, and it does nothing to help either. I remember for years telling my doctor that my whole body was itchy, he of course looked at my skin and there was nothing to see. I am sure it is little things like that that slow down diagnosis, once again it is the use of the English language and explaining to a medic using none medical terms what is wrong. It has been one of those annoying things that of course as it is caused by my nerves, no matter how much I wash or add cream, there is that nasty tingly itchy feeling, some days it is everywhere but it’s favorite location is my hands and my chest and the top of my back, sometimes it has been so bad that I have woken in the morning and I have dots of blood on the sheets where I have scratched through my skin. Although it is one of the minor symptoms on the scale of symptoms. it is probably the one that is just the most simply annoying!

I know that unless there is a sudden change that I am also going to have to start self catheterizing again, I just simply haven’t emptied my bladder for several days and that is a invitation to bladder infections. Some of the MS medics have told me several times that I should do it all the time at least 3 time a day, but I really don’t need to, like many things you learn what you need and how to manage it. I know that one day that will be the final result and possibly more than 3 times a day, but I don’t see the point of putting my body through something it doesn’t need. If it has the ability to do what it is meant to do, even for a short time longer I really believe that I should at the very least allow it to. I have said many times that getting to know your illness is really important and this is very much one of those occasions. The Medical professions do there best to set out schedules that are for everyone, but many illnesses don’t hold to the perfect written descriptions. It takes a few years to learn what your body does and doesn’t do, what will make it easier to live with and what aggravates it but ultimately it is you who knows it best, convincing doctors of that is often a different story. When it comes to medications then you have to be more careful about adjusting things yourself but there are many things that you can play around with and find out what works best for you.