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Wedding worries

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    Do you know what. Im a strong person (so every one keeps telling me) but im starting to feel beaten by all this. Im feeling housebound because of worrying about needing the loo. Getting very down x


      You've been through so much, Pink;

      Not surprised you are so low especially as the sun is shining outside. Hopefully your infection will clear in a couple of days so you feel normalish.

      Love 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. I hope so too. But I'm still waiting for my antibiotics. Was prescribed capsules but i have liquid so it goes through my rig. So had to ring 111to get itchanged. Going to ring us back within the next few hours!!


          Oh my goodness Pink,

          You could do with some good luck on the health front as you have not had much lately. I wish you a speedy recovery so you can get out for some retail therapy.

          Love Barry x
          I’m going to do this even if it kills me!


            Sorry to hear you are having a down day. I hope you feel better soon. I was recently diagnosed with mnd, and it is all ready getting me really depressed. My husband says take one day at a time. That's all we can do.

            Take care
            Sheila x


              So sorry Pink.. That's so rubbish. You are very entitled to feel depressed because you've had such alot going wrong recently.

              Being inside all the time gives us too much time to think and it seems worse when the sun is shining and it's warm.

              There are no magic words.. just thinking about you and hoping things get better soon.

              Love Debbie x


                Hi Pink,

                I can understand about how frustrating it is having to stay at home more. It's been 50 years since man first stepped on the moon, and yet accessible toilet facilities are sadly still lacking and usually very unsatisfactory for our needs.

                I'm looking forward to the Summer when I can sit out in the garden.

                Thumbs down to whoever prescribed you capsules instead of liquid - what a doughnut!..grrr! Hopefully you will get the liquid soon.

                I hope you are getting lots of hugs from your family. Its the time I spend with my family that keeps me sane (or, sane-ish LOL) - and 'chatting' to my 'forum family' gives me a boost as well!

                Thinking of you,
                ayleigh x
                Last edited by Kayleigh; 23 February 2019, 23:01.


                  Husband went to get more tablets yesterday as they dont do it in a liquid. But doctor on 111 said we can crush them. So he gets them home and surprise surprise they are capsules. Should have checked really. So another trip out. Rang the pharmacy and they have got tablets but not enough. They said we can have 9 tablets and they will owe us. Why the hell couldnt they have told us that last night!


                    Hi Pink,

                    A shame about antibiotics not being available in liquid form. Hopefully it's not too much of a faff to crush the tablets. I hope that the medication kicks in quickly and that you have a restful day.

                    Love to you and your family,
                    Kayleigh x
                    Last edited by Kayleigh; 24 February 2019, 14:18.


                      My physio has been able to find company that will hire hoists but the toilet at venue is too small! Nowlooking to see if theres a room we can use and hore a commode as well. This is proving to be quite a challenge.


                        Hi Pink,

                        I agree that the best solution is to buy or hire a chemical toilet and use a room at the venue which will take the hoist. Most important is that you find a solution which is safe for you.

                        Barry x
                        I’m going to do this even if it kills me!


                          Hi Pink,

                          I had a thought that perhaps hiring a portable disabled toilet unit might work for you. These are a few websites I found when I searched on Google (you might need to hire a hoist separately):-






                          There's probably other websites, but just thought I'd post links to some, in case you are interested.

                          Yes, I agree - sourcing suitable toilet facilities can be a right pain in the butt sometimes! I hope something can get sorted out for you soon, so that it's something you no longer need to worry about.

                          Love Kayleigh x
                          Last edited by Kayleigh; 1 March 2019, 14:18.


                            Thank you for researching kayleigh. The toilet will jave to be big enough for a hoist to go over. Ots getting to the point where I really don't want to go. Its not how i imagined my eldest son's wedding would be.


                              I'm sorry to hear that it is so difficult to get suitable facilities - I do hope that there will be a room at the venue you can use. I was hoping that a hoist would fit into one of the portable units - sorry about that!
                              Kayleigh x


                                Please don't not go Pink, although I completely understand how stressed you are about it

                                If you were to get a private room, you could bring one of those portable camping loos if it fitted under the commode - a glorified bag on a stand really!

                                An elderly relative of mine who had to use a commode after an operation, used to put a baby's nappy in the commode basin so people wouldn't hear her pee etc. and nappy and contents were easily disposed of!

                                I really hope you find a workable solution Pink.

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