14 replies to this topic

[mcwriter]

I had to edit this post way down, probably because it was the sinus pressure typing. Ha. I've really had a rough time with this topic for some reason and I'm not sure why exactly. So forgive me for laboring over not being able to type anything useful, and using that edit button over and over.

The fact is, I'm not used to being sick, it almost never happens. So I have to apologize for taking up space with this topic since I have discovered that I actually don't know what to say. Yeah, me, with all those long posts...nope, got nothing....maybe I'm sicker than I thought.

Edited by mcwriter, 06 February 2011 - 12:38 PM.

[mcwriter]

Feeling a bit better, I've decided not to let this space go to waste....

My husband has been sweet, of course, indulging me in the chance to get over this. Though the world doesn't stop turning when I am sick, it does go "On Hold" and I will invariably be playing catch-up, don't we all. Funny, when given more time to ponder, how my to-do list can grow and grow. Instead of thinking about what needs to be done for the day or week, I find myself thinking what I'd like to get done by Spring or Summer, etc. Stuff I may get to, or may not. Then my husband decides to speak up and I am zapped back into the 'now'.

While I know he does all he can to make life easier for me, his timing can really suck sometimes. It's like he has radar to know the worst possible time to tell me something. He seems to choose the moment when I am most weak, when have the least energy and can barely deal with what needs to be done and then he adds to it something unexpected. I really don't think he realizes that he does this, but he does.

In any case, I'm speaking from a world that seems to have no structure at all. I try to make it sort of seem like it, but it isn't really, call it 'organized chaos' if you will. I take my cues from him and work everything around that for the most part. When he comes up with something new, it seems to throw everything further out of whack. What seems simple to him just isn't.

While I know there are a lot of easy fixes to what he has asked me, those would just be a Band-aid and what I need to do to give him what he is looking for is going to take some major changes. Eegads.

He is in one of those periodical phases where he is thinking too much about examining his life. But how understandable is that? We all do it at some point. We take a look at our lives and think about what changes we'd like to make here or there. He thinks out loud much more than I. Sometimes he just wants to be heard and sometimes he is really wanting me to do something about it and most of the time it is hard to tell which is which.

I don't deal with myself being sick very well. I don't get to take a day or two off. I feel crummy and I am annoyed with feeling this way, because the world doesn't stop turrning for me like it does for my husband. All he has to do is utter a word--LOL.

I try to cover all the bases, take care of everything and every one, but there is always something I've missed, no matter what.

Whether it is making a stupid and very comprehensive list that includes one-on-one interviews with everyone in the household to be sure the list is complete, I will get home and discover someone has thought of something I didn't get.

Or, I listen intently to everyone and as the opportunity arises I get to surprise them with something they had barely mentioned desiring and didn't expect to get or have done for them.

I try to pay attention and do the things that someone else only got as far as thinking about and viola, it's done and they are happy, something is easier for them.

I like to do those little things that makes a person feel special, important and loved. We need some pleasures to feel human, I hear myself say.

And here, I have come up short again, somehow, as my husband has mentioned and repeated something I've managed to miss. I don't want to do a half-assed job, just put on a Band-aid for the moment. I'm not even sure how to go about it. Being sick I'm not even feeling up to tackling this one. That is why I say his timing sucks.

Sometimes we go along with life a certain way and we think this is it and it's fine. It's in the middle of great and horrible and that's okay. Then BAM! Someone gets an idea. And suddenly that idea makes you think, geez, something could be better. What is it going to take to do that? Me. It's going to take Me to figure it out, to make it better, to make it happen at all and here I am sick and just trying to keep the day going.

At the moment, I just don't have the energy to do it. There is no question of a Band-aid for what my husband wants, it's the whole ball of wax, it's the change in life as we know it all the way around kind of thing. I'm not even sure he has thought it all out, but I want him to be happy and that's all that really matters.

Isn't it funny, how even when you don't feel you have the strength to do something, because of your love for someone else, you can somehow draw upon their strength to fuel what you need to do. And what you need to do becomes a desire? Ahhh, love. It never ceases to surprise me.

[jenny407]

Dear mcwriter,

I'm a bit busy at the moment and haven't read your posts as thoroughly as I normally do - I apologize. BUT: I did read your original first post on here --- and I didn't find any reason for you to edit it. I liked the thoughts you expressed. Of course, feel free to edit your own posts as you wish. I just wanted to let you know that I personally liked it.

I do hope you're feeling better.

Best wishes,
Jen

[qbounce]

Dearest Mcwriter,

Carers/ wifes AREN'T ALLOWED to get SICK!!!
(It's in the prenup)

Be well.

[mcwriter]

qbounce, on 07 February 2011 - 06:27 PM, said:

Dearest Mcwriter,

Carers/ wifes AREN'T ALLOWED to get SICK!!!
(It's in the prenup)

Be well.

qbounce, I worry about your wife. Do her sides hurt?

You must keep her in stitches

[mcwriter]

Thanks for the well wishes, I'm just past the worst of it. It's been so long since I had anything for more than a day. Ugh.

Today I have to take Roy for his yearly physical. So hate to have to get him out their in the snowy cold. I get him all bundled up and he'll still shiver. It's times like these that I think a manual wheelchair would be handy. It is such a bigger production to use his scooter. I am thinking it might be more convenient and easier for both of us, so we'll see about getting an Rx for one today and go from there. We have finally decided that he really need an alternative.

Anyway, being sick, of course I've had no appetite, so at least I had the foresense to make sure I had a bunch of easy, microwaveable things on hand so I wouldn't have to try to stand in the kitchen and cook. That works out pretty well, especially since everyone in our house is on different schedules.

Obviously it is so rare for me to be sick that I haven't thought of a lot of measures I can take to make things a little easier.

[Glor]

Do you want to know what I think? Hope so, here it is.....I think that you need some luuvvvv....the worse part about looking after another person all the time, is that it doesn't always cut both ways....we get tired and at those times, we wish we didn't have to worry about what we're going to eat, getting out of bed or even thinking about anyone else except ourselves...in fact we'd like the other person to just get busy looking after us for a change...I think its reasonable and normal...

Mcwriter....I'm sending you all the love that is possible between strangers who have shared experiences....Hope you feel better soon and take some time to feel sorry for yourself, it is allowed and expected....big hugs
Glor

[mcwriter]

Gee whiz, thanks, Glor!

I didn't want to come out and admit exactly what you said, that yes, I'd like someone to take care of me for a change. It's not gonna happen exactly the way I'd really like it to, it's true, and that makes me feel bad actually, like I am not allowed to think that way.

It's like there's that constant line of thinking about who has it worse at this moment and knowing I really can do something about some things that my husband cannot just serves to make us feel that our ills are the lesser by comparison. It doesn't make you feel better, it can make you feel worse actually.

It is an extremely difficult thing to give myself permission to just be sick and do what I need to do to take care of me so I can feel better. Sometimes ignoring what you need yourself is not a good thing, it's not the noble thing, because if you don't take care of yourself, really both of you suffer for it. It's hard to remember that when you're sick, though.

It's like today for instance...I know I could really benefit from a day of rest in bed with a lot of fluids, etc. I'd love to take something to zonk me out to get some real rest, but it can't happen. I've already rescheduled my husband's Dr.'s appointment once and we have to go today and once that is accomplished I will bring him back home before I go back out to the pharmacy and as always whatever else that will likely pop up. I know that just getting him dressed and ready to go out into the cold, I will be worn out, like I already am just thinking about it, but it has to be done.

There are times when I won't even eat because I don't have the will to go in the kitchen, fixing myself something is just too much effort and not worth it. I might pour myself a cup of coffee and drink half and there the cup sits and sits. Really, taking a vitamin doesn't make up for not refueling.

Right now how I would just love some hot steamy chicken broth. Not gonna happen. You know what I'm doing? I'm sitting on the couch under an afghan with my laptop, close enough to hear my husband, a cold cup of coffee and instead of some steamy soup that I know would help, I've popped a cough drop in my mouth with no intention of moving unless I absolutely have to. It's not real rest because I am watching the clock for when we have to start getting ready for my husband's doctor's appointment.

If he calls I will jump up, of course. If he just want's me to see something he is watching on his Tv, I can see it from here and answer him. As soon as he decides he can eat something, I'll jump up and fix whatever he wants, but I probably won't like it and won't make any for myself. Will I make my soup while I am in the kitchen? Nope. Because I will barely have enough energy and patience to make his meal and I will be too worn out. Maybe I will grab a bottle of water on my way by, but that's all I can muster for myself.

I already know his doctor's appointment and then back out to the pharmacy is going to take a big chunk of today. I know that after that there will be things to take care of. I know that I might get to fall asleep a little early this evening even though I already know he has been sweet to record our favorite shows for us and he is looking forward to it. And that if I fall asleep he will save the spot for me so we can watch again tomorrow where we left off. And I already know that I will be awakened several times during the night when he wakes. And it doesn't matter how I feel I will have to get my work hours in for the rest of the week.

So, you know what? I really appreciate your sending me your love and hugs, Glor! I think about all the different people who read these posts, from all the different perspectives and I wonder sometimes about the few, who like you, understand the conflicts carer's feel and how those feelings are heightened when you are drained and sick but how we have to keep going through it somehow.

I know all the right things to do to take care of myself, it's just the little strength I do have, cannot be for me. I'll think about the soup, but I seriously cannot stand there long enough for even the microwave.

It's just nice to be understood.

[Glor]

Well, like you said, you know what needs to be done....YOU need to take care of yourself. Please do!

About your statement "our ills are the lesser by comparison" - this is one of the aspects of our relationship I suffered the most from....but I now know without reserve that it is created by us! Its a thinking that allows us to put our own needs at the back of a lonnnnnng queue of needs. Its also the way in which we justify the demands on us versus what we'd let a AB person get away with. Its a disease called co-dependency and in this situation its soooo easy to fall into it and in fact sometimes 'required' to make things work. This is not criticism....please know that I am sharing what took me ages and lots of money to discover. (the pain of realising my role in feeling less is one I had to take responsibility for) So if I can give any advice (and I may not be qualified to), release yourself into kindness and put your needs before his every now and again, just to affirm yourself as 'more'. Just be brave and big enough to say, today I'm getting someone to help ME! To make my friggin soup, to fuss over ME. Today tell your husband, 'I need you to ask someone else for help'....I need to go to bed now and konk...see ya tomorrow morning Love ya....toddles...lol

More hugs for you Mc....Glor

[mcwriter]

Update:

So since my husband was going to be out today anyway, I had planned a tax appointment for us before the doctor's appointment. Seems simple enough, right?

We go to the tax appointment and with our son in college, of course he gave me his paperwork after he had his own taxes done. Fine. But somehow he managed to miss giving me the one paper I actually needed. Uh -huh. My husband stays at the tax place and I dash home and find the paper my son has put inside another envelope backwards. Just lovely. I dash back, we finish up and that is one thing checked off the list.

Then we get some lunch and head for the doctor's office. Okay fine, my husband is having the second part of his yearly physical and a new gal is going through the questions to so if their files need any updating and she asks a question about his list of meds and I stop to explain the issue we are having and have been having for two weeks+ over the certain pain med and she does not want to know about this, she only wants a yes or no answer. and I nearly lose it.

I had to step out of the room in order to keep my mouth shut and not go ballistic over the stupidity I have been having to deal with for two weeks trying to get this straightened out. I sit down quietly outside and when she comes out of the room I am so very sweet and polite and I apologize to her saying that I realized I was trying to give her too much informatiuon for the task she was doing. Oh yes, all is well. The rest went just fine. Got a pain med changed and a scrip for a wheelchair. I am ready with info for what my husband needs and I am told to just give the info to the wheelchair place he gives me the Rx with a diagnosis and not much else. Hmmmm.

We go to the pharmacy and drop of the pain med Rx and go to the place to see about a wheelchair only to find out that the scrip is written wrong and needed to have the info in it that I tried to have them write while at the office, but no, I was told at the time I didn't need that. Ugh. So the wheelchair place gives me the exact info they need on the Rx for a custom wheelchair so we can get the features we need. Off we go again.

So on the way toward the Dr.'s office, we stop by the pharmacy to pick up the pain med that should be ready according to the time I was told, only to find out from the little gal that since I left the pharmacy and did not wait, the Rx's I am trying to pick up were put in back of the people who were waiting. This time she tells me the wait is 30 mins to an hour. I have to go and tell my husband and my daughter in the van that we should wait so it doesn't take even longer and maybe just maybe the injectible thing that the doctor said "Just fill this Rx and come back and we'll inject him"---maybe we can get this done too as soon as the pharmacy hands it over, right. Nope.

So I go back in and make a point to tell the little gal I am waiting just incase she saw me step outside to inform my husband what was happening and so the girl would not think I left and put the scrips back behind those who have already been waiting.

Are you with me? Now picture us driving back and forth between all these places and people from my work calling me and asking me how they should handle this and how they should do that and a myriad of other questions and updating me and what they did do etc,etc,etc. Driving? Somehow I got from A to B to C to B to C to B to D.....

So now the 30mins to an hour I was told the second time, ended up becoming another hour and a half, so I get in line to find out if they skipped me or what. I am told 15 - 20 more minutes. They keep calling names and no one ever answers in the two hours I am sitting there with the same people, looking about as thrilled as I was. Finally the right name is called, I get the meds and the doctors office is now closed, so no injection, no Rx re-write for the wheelchair with correct information and my husband is being so patient and is now hungry again after all the waiting.

He suggests Chinese take out so I won't have to cook and I dread yet another wait for the food, but glad at the same time to not have to cook it. We finally get home and my poor husband has been through a long day out that he is not used to. Unfortunately, since the pharmacy took soooo long and because the doctor's office wrote that Rx wrong, it is going to require my husband to go out on two more occasions that he normally would not have to do. Two more trips out for him for which the recovery from these excursions is 2-3 days each. Ugh!!!

It is a wonder I never grabbed anyone by the throat and pulled their eyelids off!

But he has his pain med. And tomorrow around my work I will drop off the Rx to get it re-written the correct way. Then I will see if I can't pick up my husband and run him back to the doctor's office to get the injection and pick up the Rx and drop it and the paperwork at the wheelchairplace. If I'm lucky either they can measure him then or I can at least make the appointment to get him measured. Good grief.

Didn't I say somewhere that if it can go wrong, it will go wrong if it has to do with my husband????? Arghhhhh! This is no theory it is fact. Whatever should be simple always seems to turn out to be the most complicated thing.

Now that I am done telling you about my day which is eerily similar to Monday last week and the Friday before that....I'm going to try to peel myself off the ceiling....I'm going to pour myself a glass of wine....I'm going to climb into bed and damn well watch whatever I please and hope bigosh I can find something to make me laugh because I don't like sticking to the ceiling. It's not kind to my hair.

Edited by mcwriter, 09 February 2011 - 01:18 AM.

[mcwriter]

Yes, I am replying to myself again, but today was better though I had to get my poor husband out in the cold again. But now he won't have to be out until the appointment to get measured for his new chair--hurray
He feels worse for all the moving around and I am feeling better.

Ahhhhh, perserverance.

[MountainWard]

I understand this topic well, 5 years ago I was working at a cedar mill from 3.30pm to 1am. My wife was on bedrest and had horrible wounds, when I came home I would do bandaging and the BP and get to bed around 3 to 4 am. I then had to get up at 6am to get the kids ready for school and drive them to the bus stop. At 7.15am I had the to get the young kids not in school up and get them ready and fed and then go out and do all the farm work while babysitting them. I came back in around 2.30pm and helped the wife and went off to work. After 6 months of this I wound up having a heart attack, apparently I have Marfins syndrome. Luckily I did not know I had a heart attack until about 6 weeks after, I was pretty messed up with bell palsey, stuttering and constantly dizzy, but I was still able to care for everyone. I was a bit scared though, I realised that if I go down, we all go down... I have made some major changes in life and I am doing well these days...

Edited by MountainWard, 15 September 2011 - 04:58 PM.

[paul1404]

Am I reading this right? I can see the levels of your partners why in the hell are you doing anything for them apart from the normal things in a relactionship?I'm confussed again!

[edlee]

Paul,, there must be other conditions in addition to the SCI. I mean,, if not,,,,,, well,,, there MUST be,, right???
ed

[mcwriter]

Yup, for us there are a lot of contributing factors that limit my husband's mobility---which, come to think of it, just using that word, "mobility" is just not the right word at all.

But on the brighter side, we finally got his new wheelchair this week and we got to try it out once and it's pretty thrilling for us to have. His scooter was too hard for me to manage, and a real pain if the batteries run down and there is no outlet handy. Don't know why we seem to have bad luck with batteries...

Anyway, now the weather is beginning to get wintry so that's a bit of a hiccup with the timing of the new chair, but hey, we're both thrilled anyway.

The point of the thread is just what Mountain Ward said...and we caregiver types have a lot of worries about being able to do the tasks we do. Becoming ill ourselves or even injured is just not something in our minds much of the time and if it were to happen in such a way that we are incapacitated, our worlds pretty much fall apart. It's always good to have a contingencyy plan, however, my plans rarely work out the way I think they will:)