MS inside me.

There are some part of my MS that are hard to talk about, even with my husband. Last night I had to brace myself and have one of those conversations. When you are close to someone it can be harder to speak than it would be with anyone else. You don’t want them to see you as anything other than the person they married, especially when you have already had to chip off small piece, by small piece of their image of you, it becomes harder to chip any more pieces away.

Adam and I have been married for nearly 13 years, we married on his 21st birthday and we were weeks past our second anniversary when our world crashed around us both. I do mean both, MS has changed both our lives. He has shared each and every step downwards and tried to support me. I have felt so guilty at times as it just didn’t seem fare that he should go through any of it. I had married him as I love him, not to condemn him to being my carer and no matter how many times he tells me that that isn’t how he see it, I feel guilty. So having to tell him that yet another part of me is now failing and I may need his help with it, isn’t easy.

For several years I have had problems with my bladder, it like the rest of me is erratic and uncontrollable. I was taught how to use catheters, to ensure that it is empty, which helps in two ways. First it dramatically reduced the number of times I had infections from a couple a month to a couple a year. Second along with going regularly, as I don’t get the normal messages, reduced the accidents. Despite this there have been times when I have been beyond embarrassed, as once it starts flowing there is no stopping it. To my total embarrassment Adam has had to clean up after me on occasions. So last night was difficult, I had to give him the news that the same is now happening to my bowels.

Over the past few weeks I had worked out what was happening and that was one of the reasons I had called the rehab team. With all the details the team have decided that me fears are right. The nurse came to see me again on Tuesday and we went over the initial diagnoses and options. When I eat the process just pushes it through at the other end, clearly the reason for my weight gain in the past couple of months, the reason that I look 6 months pregnant and the pain through out my torso. Yet again at the minute there is little they can do but try to control it with laxatives, sounds back to front but we will see.

Although I know my MS is progressive and there are no really remissions, sometimes it feels as though I everything is stable and I am in a period of calm, when in the fact it is nibbling away at something inside. I then become like everyone else, unable to see what is wrong and not understanding that anything is. I can and am, frequently as naive as anyone else, when I see my hands not working properly, I know what is happening, when I choke on my food or drink, I know what is happening, but when it’s inside, unseen, it sneaks up on me, tricking me into thinking I’m OK.

12 thoughts on “MS inside me.

  1. I knew someone with MS and watched the processes with horror – it’s a terrible condition and I admire anyone who copes with it, in themselves or a partner.

    I hope some help will be found for you.

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  2. I am glad that you can share this with us as it can sometimes be difficult to share with those closest, as you have said. Chronic illness is very difficult and frustrating to cope with and not knowing what to do about it is hard to take. (I am sure you don’t need me to tell you that).
    Do keep posting, as it is a kind of therapy enabling you to express all of those thoughts and emotions and not keep them to yourself.
    Do know that we are all here for you to listen whenever you want to just say what is on your mind.
    Sorry if I haven’t expressed myself very well, but I hope that you get the drift.
    All the very best to you and your family.

    Caroline x

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  3. Well done for posting this and for telling him the truth.

    If he cares for you as much as I suspect he does he will respect you more for it.

    There are quite a few on this site in Glasgow and we have the odd informal meet-up for a chat and general gossip. Would you be interested next time?

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  4. I know nothing about these things so forgive me if I am way off here,but I have a friend who has a colostomy bag,which freed her from this sort of problem,is this something available to you,or would you not like that?

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  5. I so respect your open honesty. I’m sure that if it were the other way round you’d do all you could to care for your husband.
    Try not to feel guilty. It sounds like he devotedly loves you very much. Try to cherish that.
    And I’m glad you feel comfortable to share your thoughts feelings and experiences here.
    -x-.

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