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Finding comfort

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    Good afternoon everyone. Thank you all for all the information!

    I am on Amitriptlyine and also, recently, my doctor has put me on Sertraline so I will see how it goes. It don't half make me feel tired though!
    Think it's going to be a much quieter day today (unless the phone goes Lol!)

    I agree Kayleigh! They were much happier days. My mum also use to always make a Christmas cake.

    Speak soon!

    Love Sheila x


      Good afternoon Sheila,

      Its good to hear that your GP has prescribed some medication which will hopefully ease your anxiety. Often a diagnosis like this is difficult to come to terms with and also the shock of being diagnosed can take some time to get over. It's wonderful that you are accepting help and advice from the hospice, as it often helps to talk things through with someone who has an understanding of our emotions and what we are going through.

      It is understandable why you are feeling tired. It has been a very busy time for you with meeting so many health professionals - and it sounds like they could have liaised with each other a bit better, so that they didn't ask to have appointments with you that were so close together. Often, they are part of the same community healthcare team, and so, in future, you should be able to ask for appointments to be scheduled so that they are more convenient for you.

      As well as tiredness being possible side effects of your medication, it could be that you are becoming tired more easily due to MND. You might benefit from having a nap in the daytime, if you need it. My specialist nurse told me that fatigue is often an issue for MND patients, and so I must be kind to myself by having daytime naps, when I need to. I get up early in the morning so that I can spend time with my family before they go out to work etc. I often have a little nap in the afternoon, so that I can feel refreshed enough to enjoy time with my family in the evening.

      I particularly like your title for this thread - 'Finding Comfort'. I find a lot of comfort from the kind words of support, I regularly receive from this wonderful forum family. Also it's lovely that we both have comforting childhood memories - I remember homemade Christmas cake too .....It smelt delicious when it came out of the oven, and I couldn't wait for it to cool down so that I could help my mum ice and decorate it, with little Christmas trees and a cute figurine of Santa and his sleigh - such happy days!

      I hope you are having a relaxing day.

      Kayleigh x
      Last edited by Kayleigh; 6 March 2019, 15:22.


        Hi Everyone,

        There is such good emotional and practical advice on this thread.

        Sheila, I am not surprised you're exhausted... You have had such a lot to take in and the early days are totally overwhelming. Everyone reacts to the diagnosis differently just like everyone progresses at different rates . When I was first diagnosed I just couldn't think about wet rooms, wheelchairs etc.. in fact everything to make life easier and safer. I am sure the ot , physio and nurse thought I was a little stroppy although they assured me they understood and would return when I was ready !

        We went away for a few days before we told anyone and now I will accept anything to help and make life easier. I love my electric wheelchair because I am more independent.

        Like Karen and Tony I probably left house changes until it became a real necessity so its probably better to get things in place sooner rather than later. ( Hindsight and all that !)
        Above all, be kind to yourself and try to take one step at a time, although its easier said than done.

        Thanks Ellie for your advice about PEGS and RIGS . Noone has mentioned them to me but I can see how its wise to get one before it is needed. I have a clinic appointment this month so I will mention it. (Very tentatively!)

        Kayeigh, now I keep thinking of my mums Christmas cake. I used to move all the figures around to see if she'd notice.

        Take Care Everyone,
        Love Debbie x


          Hi Kayleigh and Debbie, Thank you for your lovely and helpful replies. I have had a quiet day , feeling tired and a bit down. So it was nice to read your letters. You are right Kayleigh I think the mnd does make you more tired, I did have a little nap today. Debbie your story about being diagnosed, like you said everyone is different and react differently. Please do let me know how you get on with your clinic appointment this month. Mine is in may. When the dietitian came on Monday, she talked a lot about pegs. I was a bit scared by it all I suppose. I am not going to rush into anything at the moment, everything is all new to me and I need Time to think.
          Anyway thank you both for your words of comfort, it means such alot.

          take care
          Sheila x


            Hi Sheila,

            Its good to hear that you have had a relaxing day.

            I agree, there's no need for you to rush into a decision about anything. As your appointment isn't until May, you don't need to think about the subject of PEGs for quite a while yet - and I expect the specialist will explain things to you anyway.

            My advice is to rest and relax as much possible, and enjoy spending some quality time with family and friends (that's what I try to do, as it helps towards making my days as enjoyable and stressfree as possible).

            Hopefully the support you get from the hospice will help to ease your anxiety as well.

            I hope you are finding the nutrition drinks are ok. I try to keep my strength by having a nutrition drink every day. I also have small meals/snacks regularly throughout the day, rather than trying to eat a big meal in one sitting.

            I realised when I looked my calendar today that there's Mother's Day to look forward to at the end of this month, as well as Easter in April. Hopefully the weather will soon brighten up, so we can get out and about more in the sunshine!

            Kayleigh x
            Last edited by Kayleigh; 7 March 2019, 00:11.


              Hi Kayleigh! thank you for the reply. It is strange the dietician said I didn't need to take nutrition drinks? she said I didn't need them. It is funny that these professional people say different things.

              I am relaxing today! or trying too. But I think it has hit me hard today and I have awful feeling of doom. I hope it passes. As I have to get used to this and living with mnd. But at the moment I hate it. Thank god for my husband and son they have been brilliant!

              I hope you are having a good day with your family and friends. I haven't told my brother yet or friends! I will have to soon. It will be difficult.

              Yes! mothers day and Easter are around the corner. Something to look forward too.

              Speak soon!
              Sheila x


                Hi Sheila,

                Yes, it is surprising that although you need to gain weight, your dietitian has said you don't need nutrition drinks. As they have already been prescribed by your GP, you might wish to use them anyway, especially if you havn't got much of an appetite.

                I've had a quiet day. I haven't been out today - the weather looks cold and dreary. I think we could do with some sunshine to cheer us up!

                You are bound to have times when you feel low. No-one feels upbeat and happy all the time - even people who aren't dealing with a diagnosis like this can get fed up with life sometimes.

                On days when I feel fed up, I make sure that I get lots of hugs from my family. I also find it helps to keep occupied with things.

                My physio gave me some good advice soon after my diagnosis. She is very cheerful and always trys to cheer me up by focusing on the positive things that I can still do. She advised me to try and focus on what I can still do rather than being sad about what I can't do.

                I can't do as much as I used to around the house, but an electric wheelchair enables me to still do a lot of things, safely.

                I find its good to keep my mind active as well - by doing crosswords, reading the news on my i-pad, listening to the radio, sending emails to my friends, playing along with TV quiz shows etc

                Its great that you get a lot of support from your husband and son, and its also good to hear that the hospice is in touch with you.

                I get a lot of support from family and friends, but you are right when you say that telling them about the diagnosis in the first place isn't easy.

                My close friends and family knew that I wasn't well and that I was having a lot of hospital tests. Some of them were concerned that it might be serious, but none of them guessed that it was this serious.

                I didn't tell everyone about my diagnosis straight away, but putting it off was making me feel anxious, and so in a way it was a relief when they did know.

                I didn't tell everyone myself because I wasn't emotionally strong enough to do that. Between me, my husband, my parents and a couple of close friends, we managed to let everyone else know about my diagnosis. They were shocked and upset when they were told, but they were glad to be told because they were worried about me and they wanted to help me in any way they could.

                Although I don't see all of my friends and family regularly, it's comforting to know that we can contact each other at any time by text or email and they are there to offer me emotional support, if I need it. Please don't think I'm trying to rush you into telling your brother and friends - you must do this in your own time and when you are ready to.

                Its Friday already! Hopefully you have got some nice things planned for the weekend. I always try to get out and about with my husband at the weekend, because this is when he is not working.

                Take care,
                Love Kayleigh x
                Last edited by Kayleigh; 8 March 2019, 00:52.


                  Hi kayleigh

                  yes, I am going to continue with the nutritional drinks, maybe not every day. I hope you are having a nice day. I went out with my husband and son last night to do a bit of shopping. I think it done me good to get out the house for a while. You and your husband sound quite young, my husband is retired and I am 61. Well we got our blue badge today, my husband is pleased, I don't drive myself.
                  Yes I find doing different things help , I like watching TV and looking at my tablet. I try and stay away from looking at mnd sites, and the American als ones. They are pretty grim, some of them and they make me feel depressed.

                  Anyway, talk to you soon. Take care,
                  Sheila x


                    Hi Sheila,

                    I've been out to my local park this morning - it was a bit chilly (but at least not raining ). It was nice to get out of the house for a while, especially as I didn't go out yesterday.

                    Retail therapy is my favourite therapy - it always cheers me up! I like browsing in the shops as well, as well as online. My husband isn't really a fan of shopping - he's one of those people who dashes into a shop, quickly buys what he needs, and dashes out again. Luckily I can go shopping with friends who enjoy shopping as much as I do! .The only exception is DIY shops, definitely my husband's domain - but I find them very boring! I'm glad you enjoyed your shopping trip with your husband yesterday. Hopefully he enjoys shopping a bit more than my husband does!

                    I expect you will find having a Blue Badge makes finding a convenient parking space much easier. It's especially handy for hospital appointments because sometimes the availability of parking is very limited. I find that disabled parking spaces are sometimes larger than standard ones, which allows me more space to get in and out of the car from my wheelchair.

                    I agree, you might as well drink the nutritional drinks now you have got them, and hopefully they taste nice as well as being healthy. I like drinking Complan - although I know it's good for me, it actually tastes like a regular yummy milkshake

                    Talking of shopping, I'd better finish the online order for my grocery delivery tomorrow. The local supermarket is definitely not my husband's favourite place to go to at the weekend!

                    I hope you are having a lovely afternoon.

                    Kayleigh x


                      Hi Kayleigh,
                      I hope you have had a good day. I like looking around the shops, but I don't like food shopping, but my husband loves the super markets
                      I like shops like The Range. Yes, I think the blue badge will come in handy, hospital parking is bad, and very expensive. I will have to get some complan and try it. I had some custard today whiich was nice.. i see some people on the forum are talking about holidays. We usually book a caravan or a lodge. Always self catering. I dont know about this year though. Havent thought about it yet.
                      We have a pond in the garden, and this morning I see frog spawn in there. Every year we have tadpoles.
                      Spring has sprung definitely.

                      Chat Soon kayleigh
                      Sheila x


                        Hi Sheila,

                        How wonderful to have a pond, and with frogspawn as well. We don't have a pond in our garden, but we get plenty of birds visiting and we have got a few bird feeders (we had to buy squirrel proof feeders - otherwise the cheeky squirrels who visit our garden would pinch all the food!). There are usually some robins, jays, bullfinches - and of course sparrows.

                        I like gardening but my husband does most of it - his fingers are much greener than mine! My hands are not as strong as they used to be, but I'm still good at planting bulbs etc in pots.

                        I think that shops like the Range and Dunelm Mill are great for browsing in - I usually go in for 1 thing, but usually end up buying 10! I used to love shopping in Woolworths - it's such a shame that they don't exist anymore. I remember going in Woolworths for 'pick and mix' sweets when I was a child. Oh well, times move on, and I find that online shopping is very convenient, especially these days.

                        Hopefully you will like the taste of Complan, if you do get some. My favourite flavour is Strawberry. I have also tried chocolate flavour, but it tastes a bit too rich for me.

                        Custard is one of my favourite snacks. I've usually got a few individual pots in the fridge. I don't mind eating custard cold, but I think the pots can be popped into the microwave as well. Sometimes we have chopped banana or stewed apple with warm custard - lovely comfort food!

                        I've got some friends visiting for lunch soon. Then later this afternoon I'm going to watch the England v Italy rugby match on TV.

                        I hope you are having a lovely day.

                        Kayleigh x
                        Last edited by Kayleigh; 9 March 2019, 11:27.


                          Hi Kayleigh!

                          I am not a very good at gardening, my hands are weak and no grip. My husband does it but in may we are getting the hedges took out and fences put up. Cutting the hedges is getting a bit for him now. I watched the rugby today, quite a easy win for England. I think i like the Football more. You are lucky your hands are still quite good, but I think you said you suffer more with your legs. Do you get alot of twitching ? I do especially the last few weeks. I did read on here somewhere that stress makes it worse. Not sure? I hope you had a good afternoon with your friends. Yes! I use to love Woolworths!! I think they are still going but online only.
                          I love seeing the birds in our garden, I feed them as well. I used to have a budgie as a pet, lovely little bird use to sing away. No pets now, have you got any.

                          Well, that's enough of me rambling on.
                          Chat Soon
                          Sheila x


                            Sadly welcome Dawn, my daughter was also diagnosed Sept 17 at 33 just after having her 2nd baby, people here are very helpful and usually have an answer to any question.


                              Hi jaxx
                              How is your daughter. ? I hope she is doing well
                              like you say the forum is very helpful and people are very kind.

                              Best wishes


                                Yes Andy - thanks - it was a shot in the dark, I think Tony is too paralysed, but glad it helps you