Hovering around

Hello Lily, I've just seen your post and also want to echo what others have said here. I'm lucky to be 'Stable Mabel' at the moment and it helps push things away, but those of us in that club are only too aware that it could be so very different - and on the road ahead we will be facing worse challenges. No matter where we are along that road we all feel scared and lonely and afraid of what's ahead. We all deal with it in different ways and only on here can we really be ourselves for a bit and know there are others who understand exactly where we are and what's happening in our head. Let it all out on here Lily. Sending you big hugs. Rainie x

Hi Stuart, I feel the same way about Christmas - my last two have been horrible so the run-up to it fills me with dread. I'm the same about the winter too, though I've always felt like that and have one of those daylight boxes I switch on to alleviate the gloom, as well as taking extra Vitamin D. But I can't say it makes that much difference - winter is still horrible as far as I'm concerned. Big hugs, Rainie x

Thank you so much everyone.  You have all given me a massive boost in the right direction.  I've been gardening all day today and taking hubby fishing tomorrow  ( he has MS) so I will talk to him then. Love to all of you. Xxx

My wife has MS and once during a little bicker about medical suffering, I said "but I'm worse ive got cancer and I'm going to die." My wife then said " I've got MS 'but I will be left behind." I couldn't believe she didn't take my view.

I was really put out about this and coincidently saw my Macmillan nurse the next day. I put this argument to her and said I thought I should have won. She considered it a bit then said" well neither of those things are a good bet"

Never had the argument again. Bloody cancer, bloody MS. Xxxx

Yes I totally understand this. Sometimes we have to decide whos worse off . The one whose better off has to take the dog out. Lol. But yes we often have to weigh up who hurts more or who's the most fatigued. I do 90% of the house work and he does most of the dog walking.  It's definitely  not easy for either of us but we have to continue.  It's a bonus that we are both stubborn otherwise we probably would have crumbled at the start. 

Bloody cancer and bloody MS indeed. X

Hi Ruth, I just wanted to point out that these are not friends but people I knew in my past life when I was in the tennis, badminton or walking group whom I haven't seen in years! Please do not waste your sympathy, I have several supportive friends, some of which I met here!

Tess just wanted to wish you luck  and hope one of these days he will realise the hurt he is causing to his family!

Hi Lilly,

I'm new and haven't "met" you, but wanted to say thank you for bringing me (us all?) back to reality. Or something. I get going sometimes just "living my best life", posting about my puppy dog and vacation and good things - all of which are true - and I don't post about the other also true part of my life, which is mourning I think. Of my lost life, lost time with family, lost dreams, soon to be lost independence. It's not easy to talk about with friends, though I do confide in my wife. But then you posted and brought it back to earth, which I think is very important. Right now we are staying with my parents, and it is so hard to see them struggling with my situation, with the idea that they are going to lose a child. How can I be doing this to them?!?! Yes, I am a burden, this situation is a burden. But it has to be, of course, no way around sadness if you love people and they love you.

I've been thinking it might be time for me to make a (virtual) appointment with my cancer counselor again.

I'm sorry you're having a hard time, and I hope you also get some less hard times.

PatriciaV 

Thank you Patricia.  I'm much better than I was. I just get those occasional "all time lows" and then I go to write about it and can't find the words. I was talking to my brother yesterday about my funeral,  he said he didn't want to talk about that yet so I said "it needs to be talked about" There will never be a right time. So he sat and listened.  I was quite proud of myself for actually getting it through to him what I need to organise before I go. (Not that I'm going anywhere soon) im so pleased your wife is there for you. It's always good to have a sounding board . I hope your treatment is going well. X

Hi Lily, 

Well done for getting your brother to listen, it can be haerd to be assertive, but it is good to be able to tell someone your wishes, whther they will need to be fulfilled sooner or later. 

Here's to later x

Thanks salis. It did feel good to get it all out. Spoke to my husband today too, he was very understanding and said I need to tell him when I feel low. But I am so glad I finally found the right words to talk on here too. You have all helped me massively and I will be on here more often to rant or to help others. Have a good week everyone.  X