Page 6 of 6 FirstFirst ... 456
Results 51 to 60 of 60

Thread: Finding comfort

  1. #51
    Forum Member
    Join Date
    Feb 2019
    Posts
    197
    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!
    love
    Sheila x

  2. #52
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Posts
    974
    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; 8th March 2019 at 01:52.

  3. #53
    Forum Member
    Join Date
    Feb 2019
    Posts
    197
    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

  4. #54
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Posts
    974
    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

  5. #55
    Forum Member
    Join Date
    Feb 2019
    Posts
    197
    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
    love
    Sheila x

  6. #56
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Posts
    974
    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; 9th March 2019 at 12:27.

  7. #57
    Forum Member
    Join Date
    Feb 2019
    Posts
    197
    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

  8. #58
    Forum Member
    Join Date
    Nov 2017
    Posts
    155
    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.

  9. #59
    Forum Member
    Join Date
    Feb 2019
    Posts
    197
    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
    Sheila.

  10. #60
    Forum Member
    Join Date
    Feb 2018
    Posts
    56
    Yes Andy - thanks - it was a shot in the dark, I think Tony is too paralysed, but glad it helps you

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •