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Rubbish day today

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    Rubbish day today

    Well, it’s been a rubbish day. Yesterday my husband felt really poorly. Our lovely GP came out and diagnosed a UTI. The medication upset his tum, and this, plus the infection, plus his ongoing pain, made him really miserable. He’s feeling awful, is very upset about things, and for the first time has actually talked about his own mortality. As you can imagine, I’m feeling dreadful. I know there’s nothing anyone can say, or do, but I just needed to get it off my chest. How hard is this.

    Hi Polly;

    Sorry to read of your rubbish day. Hopefully the medication will kick in tomorrow and he'll improve. With that his spirits should rise.

    Hugs, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


      Thanks Terry. As many of you have said, a problem appears, and as fast as you work out how to deal with it, another one appears. All we can do is take one day at a time. Tired, despondent, but tomorrow is another day, I guess!


        Polly, you’re allowed to feel tired and down. We who have MND understand how cr*p some days can be, but its not just we who are affected, carers and families are, too. But, as one of my loved ones reminded me yesterday, take just one day at a time.

        Yes, your husband will have bad days ( and bl**dy awful days) but there will be good days, as well.

        Sending you some friendly forum hugs to help you face today. ((((()))))

        Trying to keep positive, but not always managing.


          Dear Polly,

          Sorry that things are particularly
          tough for you and your husband.

          It's good that you are happy with your husband's GP and hopefully the GP can prescribe some painkillers to alleviate the pain he is feeling.

          Understandably, it must be very upsetting and heartbreaking for you to see your husband so unwell. There are going to be days that are worse than others but hopefully things will get better once your husband's UTI clears up and your husband is in less or, hopefully, no pain.

          Somehow, me and my husband manage to cope - and I try to stay as positive as possible because it must be very difficult for him to witness the ongoing decline in my health. He tries to do what he can to make sure I am as comfortable as possible and together we try to make the most of our time together.

          I wish you and your husband the strength to make the most of every day together, although understandably that's not always easy to do.

          I hope you have enough time to rest and relax Polly - and hopefully you have some support and help from family and/or friends.

          Love to you both,
          Kayleigh x
          Last edited by Kayleigh; 6 November 2019, 06:07.


            So sorry you had a rubbish day Polly. Noone can be strong all the time and you are totally allowed to feel dreadful.

            Being a carer for someone with MND must be so hard because sometimes there are no positives. My wonderful husband gets frustrated sometimes because he just cant " fix things " He is very good at taking one day at a time and nothing is ever too much trouble but he is very reluctant to talk about how he feels.

            I hope today is a better day for you and the meds start to make him feel better soon. Hope you both manage some rest.

            Love Debbie x


              Hi Polly,

              I can only imagine how hard it is - emotionally, physically & mentally - to care for someone you deeply love and watching them lose physical function before your eyes. I know it's hard for us with the MND, but it's a double whammy for our nearest and dearest.

              Hopefully he'll feel a better day-by-day and he won't be as despondent. It doesn't much to knock us for six, unfortunately...

              On a practical level:

              He can ask for a different antibiotic if he continues to have an upset tummy on the current one or maybe take a "tummy liner" med to lessen the side effect.

              Generally, is he drinking enough water? Often not drinking enough increases the risk of getting a UTI.

              And you say he has pain normally (apart from the UTI pain)? I wonder if this can be addressed - it must drain the man and, by default, drain you too!! If the pain is from his position in a chair, bed etc., that can be lessened or eliminated with better cushions, mattresses etc.

              Sending more hugs your way.

              Love Ellie.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.