Moving forward

Sue, you went thru hell for so long ....... and, with so much strength and dignity, that no one here can really relate to what you feel / what is "normal". You were an amazing care giver of the highest level! You will feel a void and a "lost in the wilderness" kind of feeling for a long time I imagine. Allow yourself time to feel "odd" and lost. I can't imagine how you must feel awash in a life free from ALS, yet struggling to comprehend/embrace your present self. I/we dealt with The Beast for far less time than you did (and from far less involvement/vent free) yet I still find myself caught between relief and dispair. Big hug my CALS sister!

Thank you everyone.

Tillie you describe it so eloquently. Like reading my current life on paper. I do let things slide and then they really get on my nerves and I have to have a go. Even a small one makes things a bit better.

There is a tax form I must finish today. That and I have to get the paychecks to work. Those are my mandatorys today. However I woke with resolve, so we will see how long it lasts.

I know I just have to work through, can’t go over it or under it or around it. Thru S*cks but it is what it is.

Have a great day all

Edit to last post - should read I SPENT huge amounts of time manically gardening. I do garden a lot now, but I would wake up and have to get straight out of bed, and I would know I 'should' do this or that, but I would just need to go out and garden ...

Sue that was how it was for me too - suddenly it would totally irk me severely and I would have a day of catching up all kinds of things and be really productive and organised and feel so good for it! Usually it was unplanned, I would just feel the need and get stuck into things.

IIWII applies now in a very different way. The only way through it, is through it. xx

Sue...my PALS used to always remind me "one day at a time" when navigating ALS. The same is true after their gone. Slow but steady. Relax on a bad day and take advantage of the better days. I used to think I would never stop crying I missed him so but it does lesson (not the missing but the crying anyway). I still cry to this day if I think too deeply about the journey and what he went through. What we went through. It's been 17 months. I am mostly a pretty optimistic person but I personally feel as though I will never be completely free of ALS even though he's gone. I don't dwell on it but it's still never far from my mind. Maybe that's why I'm comforted coming here with all these amazing people like yourself that get. Really get it. Not too many do. You are super amazing Sue. You take all the time you need and take care of yourself. It's your time. Hugs to you!

Thank you again everyone for your loving and kind support.
Those of us on this side know the unique position we are in. It’s hard, others don’t get it, probably why I still come here too.

Yesterday I got my regular taxes to my accountant, that was a bonus. Got to the store and finally got my prescription refill that I had to play reindeer games to get. However, fortunately they gave me a 3 month supply and 3 reorders, so I shouldn’t need to play this game for 9 more months.

Then in the afternoon I rested. Actually fell asleep. DS came by, we didn’t do the planned WO, but he helped me give the dog a much needed bath.

This morning, I got my volunteer work done, and some other computer tasks accomplished. Now having my tea and catching up here.

And, I kind of knew this but was denying it, I think I figured out my knee issue. SUGAR. Yep, I’ve dove headlong into sugar. That stopped this morning. Made myself a good and healthy breakfast. Have to get this fixed and fast.

Have a few financial things to do, and mail one very important form, then I can relax for the rest of the day or not. We will see how I’m feeling.

Hugs

Oh Sue, I'm just a little bit behind you on this new "post-ALS" journey and it stinks. You were on the ALS journey so much longer than so many of us CALS and all of your posts inspired and encouraged me. I come back here now to read your new thread and also be encouraged. Thanks for posting here. It makes me realize that how I am feeling is "normal.' I will have a good day and get a lot done, and then have a weepy down day the next day. Wish I could have you over for tea and give you a hug!!! Thanks for staying on here!

I understand about everybody's conflicting feeling about the house they live in. Thankfully, my PALS wasn't in our old master bedroom for the last 10 months. So all of the medical stuff was never in there. We had my sewing room and guest room combined into one large bedroom. I hated going in there after he passed, but it is a beautiful room. So I took some advice I saw from Tillie (I think) a while back about rearranging so things are different but still the same. I rearranged things. Monday some friends helped me move the big stuff and it is now a sewing/guest room suite. I gave away the adjustable king size bed to another CALS/PALS couple and bought a sleeper sofa (with a good memory foam mattress) for guests. So it looks kind of like my old sewing room, but better. The feel of the room is totally different. I've made other small changes to other rooms too, So the house feels and looks like home, but different. I'm less likely to be ambushed by grief this way.

I need to attack the Thank You cards. I REALLY want to thank my wonderful friends who did so much for us these last few years, and made an awesome memorial service for Dave. I've made a list, with a description of what everyone did, a few weeks ago. Just doing that was wonderful/terrible. It made me relive everything, but showed me all the love that was poured out on us during this time. So I WANT to thank all of these people, but doing so requires me to "go back." And I don't want to do that. I was going to start today. I started a fire in the wood stove, collected the list and addresses, but I'm on here procrastinating. I can't decide if I should split it up in bite size chunks or just power through with a lot of tissues. How long is okay to wait for thank you for this?

Mary

Mary, your friends will appreciate your appreciation whenever you feel up to providing it. Thank you's have infinite lifespans. One at a time, when you get started, and then it will speed up.

Best,
Laurie

Hi Sue, you are amazing. That is all ��

Mary, I am so happy that I can help you find your way after. I decided to continue here, as we all grieve in our own ways, but just like my other journal, I felt if I could help just one person, it would be worth laying it out on the line. And it helps me too, as I find I cannot do a paper journal that no one reads. It seems we are about 4-5 hours apart. If you are ever really struggling, a get together would be possible.

As to thank you’s, I’d sit and do a few at a time. Whatever I felt I could handle at that moment. I now have to help my Mom and I find myself procrastinating on those ones.

Thank you Lenore. You are amazing yourself.

Yesterday I managed to get that document mailed and the things I did before checking in here. It was a snowy, ugly mess yesterday, so I did a few things and relaxed and played on YouTube.

Today I need to head over and seem Mom along with some work stuff. The sun is peaking through so that is good.

Had a good breakfast again today and that did so much for my mental health yesterday. It’s so hard to cook when you don’t feel like it, when all you want to do is just grab, something, anything because the thought of cooking is just overwhelming. I am here to say, if you can push through and actually make something healthy every part of you will thank you and it will make dealing with the grief so much easier.

Have a great day all

Sue,

I hope the sun peeking through is a sign that there is a new brighter dawn for you too! Have a great day!

Hugs!

Sue I make most of my meals in bulk so I don't have to cook every day and it makes a huge difference to how well I eat. I can really do portions well by splitting up something into 6 meals, and I find cooking more enjoyable when it's something I only do a couple of times a week.

I tend to eat one meal, put 2 in the fridge, the rest in the freezer.

In summer I live on ranges of mostly raw salads so they just fill the fridge and I make a new one when one bowl empties and have a range there.

I make all my meals vegan so everything keeps and freezes perfectly, it is harder if you have meat in the meals because you will need to freeze nearly everything. I was doing things this way when I ate a bit of meat in some meals too so it still works.

I do eat some eggs and dairy yoghurt or cheese at times, but these are not inside the meals I am trying to store.

I know that I feel incredibly different when I am eating well - protein for energy, and lots of greens is the perfect fuel for me

If you find what your perfect fuel is, and plan meals around that and take the pressure off cooking every single day you may find it is easier.

So glad you are feeling a little better.

Jrzygrl - I think it is a bit of a new dawning. I am by no means past it all, but slowly working through.

Tilley - I do the bulk cooking as well at times. The other night I made a bean less chili (don’t do well with beans), I put a couple of servings in the fridge and the rest went into the freezer for future. I don’t do well on vegan, we tried that when Brian was first DX. So I still do meat and eggs. I also don’t do well on grains and dairy needs severely limited. I have however, in the past made and egg breakfast dish and it gives about 6 servings. It keeps in the fridge for that amount of days and is very easy to reheat. Lots of veg, some meat and eggs. I keep thinking of doing that again.

I completely agree with the greens. My fav happens to be collards. Like this morning, I make what is known as my hash. It includes either sausage I made myself, or bacon, green onion, jalapeño, bell pepper, brussel sprouts, a small chunk of sweet potato, collards. That is sautéed and then I crack a couple of eggs on top. Cover and cook until done. YUM

Yesterday was a very good day. Got over to Mom and took my dog. Both were happy to see each other. We completed some paper work and a phone call that needed doing. I came home and got most of it ready for the mail today. I also did a bit of finances and then worked with my new knitting bag that arrived. Got it packed.

Last night while watching hockey, I finished knitting one project and just need to do a bit of sewing on it. I frogged another and rewound the skein of yarn, then worked on a third that is a crochet project, sitting unfinished for way tooo long. Yes, a very good day.

Had my puppy out for a walk this morning, then made my breakfast. DS is coming to do my WO. I also need to check on work, get groceries and do laundry today.

Have a great day all

Happy dance, happy dance!!! Here's to another good day!

Started off well, then I got the call they were coming for Brian PW. Not good. When they actually took it, not good. Not sure why the rest of his equipment didn’t bother me, but the chair has. Not sure why. But a flood of tears.

When a trigger hits it really does, many hugs Sue.

Yeah I wasn't suggesting the actual food I eat, just the idea of making in bulk. It does really help if there is always at least a couple of good quality meals in the fridge or freezer as then you can choose to make something or just eat what you have. But you aren't just having some junk because you don't feel like cooking

When the bad times really hit, I try to remember that this is one more of those really hard grieving times that you have now made it through, another one down!