Another "I'm sorry" post...

[Raesiahna]

(I apologize if this is the wrong section to post this in, but it seemed like the place for it because I wrote this journal entry after reading a few posts in this section, so...)

I hate this. Pushing the pain of living with BPD aside, the CFS is just horrible in its own right. I always feel so sorry about everything, sorry for being sick, sorry for being too sick to do more to manage it, sorry for having to ask people to take care of me, sorry for making people have to adjust their lives, sorry for causing my husband not have a life at all...

sorry for existing in general.

And as much as I'm sorry, I'm also not sorry. I'm furious and indignant that I feel so sorry when maybe I shouldn't. Like I feel sorry for having my husband be responsible for buying and bringing back dinner on his way home from work; for having the responsibility of keeping me fed....but then it's hard to feel sorry because most of the time, he comes home pissed and irritated with me, or doesn't get me anything and I end up going hungry. I get angry, because he will only bring home enough for us to eat for dinner, but not anything for me to eat for breakfast or lunch (he gets to buy breakfast and lunch at work) because he doesn't feel like carrying home a load of groceries. So here I am, eating once a day - if that - trying to make myself as little a burden as possible so he won't always be irritated with me.....yet I feel sorry that he has to be the one to do what he does do; feel sorry that I can't do it myself.

Thinking about it rationally, he doesn't really do much for me that I should feel sorry about. Like I feel sorry that he has to do most of the household chores....but then again, he doesn't actually do them...so why do I feel sorry?

One of the worst things about having CFS is being a nonentity. Because I am now housebound for the most part, I don't have a job to talk about or exciting life stories to tell. I still try to keep my brain active by doing a variety of things online, and some of it would be pretty interesting to talk about. But he doesn't ask...I don't think he quite sees me as another human being anymore. I'm just a thing living with him that he's vaguely aware of that he can ramble and rant to occasionally. Never asks me how my day was or what I did or how I'm feeling. He doesn't converse with me, he talks AT me, and then my existence fades away to him.

My pain and problems are so distant to him, that he can't quite bring himself to care. If I'm in pain, he initially will show a bit of worry when I mention it, but can't really be bothered to help or care in any way. Since I'm a nonentity or rather, a vague extension of himself....if he can't feel my pain, then the pain doesn't really exist, so he can't bring himself to truly care. I can sit in the same room with him, sobbing when I'm having my bone pains...and he won't notice. At the time I'm glad he doesn't notice, because I'm just one of those kinds of people.....but later when I think about it, it concerns me, because then I'm like "SHOULDN'T he have noticed though? Wouldn't that be something your spouse should notice? Should I be worried that he didn't?"

I guess what I'm saying is that I'm sorry I have to depend on him to take care of my needs....but my needs aren't being taken care of....so I'm angry that I'm sorry.

And sorry that I'm angry.

And sorry that this mainly turned into a rant about my husband.

And so forth.

-_-

P.S. I'm even more sorry that even though I was once an English major, I can't for the life of me these days remember the rules of commas, semi-colons, and run-on sentences. Brain fog pwns me.

P.P.S. And he really is a nice guy for the most part, or at least he used to be. I think our relationship would be in better place if I could go back to who I was, pre-CFS. Who I was before I faded away...

 

[fresh_eyes]

Hang in there, Raesiahna. Welcome to the forums.

 

[_Kim_]

Hi Raesianha

I'm glad you said that you were sorry - and not! I think you'll find that you're not alone here in your experience. Thanks for sharing it with us.

I think you might find some good company over at the Community Lounge. Come on over. You'll find some us taking pause over on the Burnout Bench and there are other topics that might interest you, too. But be warned, just because a discussion title suggests topics like knitting, cooking, writing or gardening...often the conversation ends up having nothing to do with these topics and instead turns into heartfelt messages and some good laughs. Please feel free to chime in. It's an uplifting part of these forums for many of us.

 

[Frickly]

Raesiahna

I think many on this forum can relate to your feelings, I know I can. It is difficult to have to depend on our spouses so much and sometimes they do become resentful. This has been a fear of mine for sometime. I think it was Jody who brought up the topic of being sorry some time ago. God help you if she hears you say it.

I am glad you are here and agree that you should come hang out in the community lounge. Also, check out that knitting thread. It has nothing to do with knitting.

 

[margib]

I was once an English major, too. I think I have some of the worst grammatical errors on the forum! You are not fading away. I want you to stay with us. I know having this disease feels awful, but you are not alone.

 

[Jody]

I think it was Jody who brought up the topic of being sorry some time ago. God help you if she hears you say it.

I am glad you are here and agree that you should come hang out in the community lounge. Also, check out that knitting thread. It has nothing to do with knitting.

Frickly,

Too late. I've seen it.

Raesiahna,

You have my sympathy for what you're going through. The invisibility and the helplessness do a number on us.

I think we can maybe make a difference somewhat, with the invisibility thing. Stick around and talk with us and see if it doesn't make you feel a bit more ... substantial ... a little more connected.

We may or may not be able to help with the helplessness ... Not directly, probably not. But it's funny, when the invisibility cloak begins to slide off a little bit, somehow, it helps us to feel a little less helpless even if the situation we live in hasn't changed.

Just a theory of mine that has started developing since I came here, with a pretty big invisibility cloak of my own. It has shrunk. Markedly.

Anyway. Enough of all that. Let me get to my point.

Welcome to the forums.

 

[Jody]

Also, check out that knitting thread. It has nothing to do with knitting.

Yes. Do that.

 

[Robin]

Like I feel sorry for having my husband be responsible for buying and bringing back dinner on his way home from work; for having the responsibility of keeping me fed....but then it's hard to feel sorry because most of the time, he comes home pissed and irritated with me, or doesn't get me anything and I end up going hungry. I get angry, because he will only bring home enough for us to eat for dinner, but not anything for me to eat for breakfast or lunch (he gets to buy breakfast and lunch at work) because he doesn't feel like carrying home a load of groceries. So here I am, eating once a day - if that - trying to make myself as little a burden as possible so he won't always be irritated with me.....

There's nothing to feel sorry about, Raesiahna.

Sometimes we all go through times when we feel like burdens and get frustrated -- that's normal. But, it's not your fault that you got sick. It's worrisome that you're not getting enough to eat.

There's online grocery sites like netgrocer.com and amazon that will deliver food to your door. I've used netgrocer at times when I couldn't do my own shopping or get help. For a minimum they'll deliver produce and dairy too. It's a little more expensive than the grocery store but well worth it. It sounds like you're too sick to cook but you could get cereal, granola bars, snacks, etc. When I'm really sick I eat a lot of the dehydrated "just add water" soup mixes - most of them are pretty balanced and filling.

Also, some smaller groceries will deliver. You can call around and find out.

You can always order take out to be delivered for dinner and have an extra meal for yourself for lunch the next day.

I hope some of these suggestions help. No one should have to go hungry.

 

[jackie]

Oh, listen guys! Don't want to get too far off topic here....BUT I wanted to tell all of you what this forum has done for me in regard to feeling apologetic/invisable/helpless, as Raesianha is right now.

Today I had to start up with a new Primary Care Dr. (after over 20 years with my previous one)....and what a difference having confidence (that I gained, right here at this forum) gave me at the introduction!

I walked into the exam room - made myself a nice little bed on the "table" - and took a wee SNOOZE while I waited for the new doc to arrive.

I announced that I had PEM from ME/CFS (the drive to the office took the stuffing out of me)....and when I had appointments in the future - to plan on seeing me in this position - reclining and resting.

I ALSO politely declined his offer to shake my hand (as I had not had a flu shot)...no offense, nothing personal - but told him I guard my remaining health fiercely now, due to CFS. He looked a bit surprised at first...(and I was a bit shocked that I had the nerve!)....then reassured me that He completely understood...and to do whatever I needed to be comfortable.

This attitude was a FIRST on my part! I also stuck up for myself a while back with my long-time Neuro...but I am used to him....this was different!

No slinking into his office like an old, sick dog with it's tail dragging....begging for some small morsel of understanding. NOPE!

When he asked if I had gathered up my voluminous Medical Records/Files....I firmly stated that I was reserving judgement and wanted us to get to know each other first. I said I was also giving him the option of deciding whether he wanted to deal with ME and my concerns as a patient - and more importantly whether he would meet MY requirements as a doc!

He said most certainly he was interested in me and my ongoing CFS treatment. No scepticism on his part - and I would NOT have accepted that attitude anyway! Not anymore.

Once again, thanks to the knowledge and support and confidence I have garnered on this site, from all my new friends.

I firmly stated that I had been dxd with ME/CFS - was taking high dose antivirals under the care of an I.D. Doc and needed HIM to help coordinate my care between what I considered my little "team" of Drs.

The real clincher was when I showed him the Shingles rash that spans ACROSS the back of my head/neck from left to right.

He looked amazed and said that's only possible (shingles crossing the meridian line - they're usually on one side or the other) if one has an Auto-Immune Disease! I answered "Exactly.....!"

I honestly think I saw a lightbulb turn on, over his head!

He said if I'm willing to come into his office every month (for a few months) that he will take the time to bring himself up to speed, familiarize himself with my case and help me as he can.

In the past (and I'm talking YEARS of abusive and dismissive treatment from ignorant Doctors - that left me crying in despair as I left their offices) I would have been terrified at the prospect of yet another new doctor - and another "rejection".

Not this time - and probably, with this newfound strength - NEVER again!

As Jody said...the situation may not have changed - but my ATTITUDE has! And yes...I feel SUBSTANTIAL!

So take heart Raesiahna. Look at the wondrous gift of confidence, not to mention finally finding my "voice", that I've been given in just a few months at this site!

I hope you stay and let all of us support you, while you read, learn and continue to find YOUR confidence and YOUR voice!

Helpless no longer (but very very tired!)

Gratefully, jackie

 

[Jody]

Oh Jackie.

That is just wonderful. I am so proud of you.

What a great story that is. So glad you shared it here.

 

[leelaplay]

role model

holy moly jackie

you're my role model

you're on a roll

you're a steam-roller baby

if

 

[Frickly]

Go Jackie....Go Jackie.....Go Jackie

Reading your post left a huge smile on my face. Good for you!

 

[jackie]

Thank you...thank you...thank you...thank you....one and all, for the words of praise for my bravery!

I am taking Regal Bows from the waist - as I lay in my bed (not as easy as it sounds - I'm getting cramps in my sides).

I'm kinda proud of me, too! So, for tonight, I AM a HERO!

Resting on my Laurels (is THAT what I'm resting on?)...Bowing and Cramping and Head-Bobbing and doing the Queen-Mum Wave...being a Holy-Moly on a Roll Role Model...a Chin-Jutting One-Eyebrow-Lifted Fingersnapping Steam-Rolling Baby!...to the tune of Mr. J.T.

If I had a Tiara...I'd be wearing it!

.................j

 

[CJB]

I have my first dr appt on Friday after the news about XMRV. You've given me courage. Way to go!!

 

[jackie]

cjbrennan...good luck on friday. May I add one practical solution that actually worked for me today? Maybe you could try something similar, if you have the energy.

I took a few days and (using a "notepad" program) wrote out a Chronological "history" on my computer. I kept it simple and fact based, starting with my birth and ending with where I am at present.

For example, if I had the chicken pox in 1960 AND missed a month of school with a severe flu, I wrote that down. If in year "x", I began having severe headaches and was referred to a Neurologist I added that - plus whatever tests and treatment were started. If I had some relatively illness-free years I'd write (for example) "1985-1992: Active lifestyle, worked, travelled, etc."

At the end of the page I added my most recent lab results and a list of all my meds, the name of the prescribing Dr. AND what each is being used for (the new Doc said he really appreciated this) I made 2 copies (he asked if he could keep one in my file).

I made sure that he understood that I took the time and energy to do this because I was concerned that by the time we began to talk - I might have started to forget important facts.

Which, by the way, did happen! Near the end of the appointment I started to crash. I could NOT remember my children's ages or birthdates and even stumbled telling him my SON'S NAME!!!

This was the really interesting part - both the Dr. and I noticed the progressive nature of the conditions....just by seeing the "time-line" in black and white!

Going from doctor to doctor complaining of severe headaches and stabbing pain in my face over the course of several years (all documented, dates, names etc.) - with no Dx or offer of help or treatment from various doctors. Ending with an eventual Dx (through clinical tests, CTs and MRI'S etc.) of Trigeminal Neuralgia and Migraines (which are pretty serious conditions...to be ignored or left untreated).

And all the while, the never ending complaint of those too frequent flu's with fatique, swollen glands and sore throats - woven through years of my "story".

In other words, this doctor could see for himself how long and hard I tried to get help for both ME/CFS and the other co-conditions. I could tell he was sympathetic...pretty compelling "evidence" I guess.

I was able to hand him the paper to read for himself - and stop to ask me questions or clarifications as needed.

I could never have recounted this much info at one time....I was too tired and telling the story would have been much too emotional.

This took a bit of time - but I worked at it a little each day...starting with a rough draft and then some editing to double check my dates.

I'm glad I did it, wasn't as difficult as I thought it would be (had intended to do something like this for a long time)....and I think it helped.

BTW...I've tried over the years to bring a list of questions and facts to my appointments - but I always forgot to look at them!?

Handing over several 8.5x11 pages took care of that problem!

Again, good luck, stand your ground and be Brave!

jackie

 

[Finch]

Welcome, Raesiahna!

Hi Raesiahna! So glad you came here to share. Please continue to let us know of anything that's bothering you. There are a lot of people here with plenty of experience and very good suggestions. The rest of us are more than willing to share your pain and try to help you through it all.

By all means, if you read nothing else here, do go to the Community Lounge and read the thread titled, "Knitted a Hat." You will learn a lot about us.

Also, you will find plenty of good information here and definitely lots of support.

I just have to add ...

Jackie! You are awesome! I'm entirely impressed and happy for you. I've also found that writing down my main concerns before I go to doctor appointments is very important, because I can very rarely speak coherently once I get there. Way to go Jackie!

Finch

 

[bigbird]

Hi Raesiahna,

Thanks for your post. I'm new here. I've been struggling to cook my husband's dinner each night. I maybe manage to supply him with dinner about 5 nights a week (admittedly I'll cook extra one day so he can eat it again the next night). I manage to do the laundry, keep our apartment tidy and working (I had a cleaner until a couple of weeks ago -- she came in once a week for about months but I ad to let her go duie to finances so I'll be having to try to do the heavier cleaning now). I listen to a rant from my husband regularly (he's drunk most nights) about how I don't appreciate him. Have been told the dinner I serve him is...well, I won't write the word here. He does go out to work. He does hard physical labour each day. And he occasionally will take me to a doctor's appointment or pick me up from one as long as it fits in with him. So he is supporting me financially and sometimes with doctor's appointments. Very occasionally when I've been unable to get out and I've run out of the special bread I can eat I'll ask him to pick it up on his way home from work (it's directly on his way home from work).

In other words I try to make myself as little bother as I can. Meanwhile, after cooking his meals I have no energy to cook my meals. OI means standing in the kitchen for more than a few minutes will see me get pretty sick with symptoms of tachy and brain fog etc, very quickly. So, I live of sandwiches, milk, fruit and carob buckwheat snacks and decaf cofee (I"m highly intolerant to what foods I can eat so the sandwiches are usually the same old ones day after day. So my diet is hardly well balanced and it's very high in fat. It's homemade convenience food made in a minute or too and then I go sit down to eat it. Ocasionallly I can eat something I've cooked for him -- some vegetables that I can tolerate that I've cooked to go with his meat meal etc.

The other night he went on another drunken rant when I served him up the same meal for the second night in a row -- lamb fillets in gravy with three vegetables.( I can only do quick food and it's boring but it's nutritious for him). Anyway I defended myself, ended up in tears as he stormed off to bed feeling hard done by and I was sitting there crying and I got to thinking about your post that I'd read.

And it occured to me that I'm doing my best. And it means I'm the one that's eating less nutriously than he. He's seen me sit down with a quick snack when I've served him up a meal and never said anything. So last night (the following night) I sat him down and pointed out the fact to him that although I don't manage to put food in front of him every night, and sometimes it's the same food two nights in a row did he ever wonder why I was sitting there eating a cheese sandwich with lettuce and a glass of milk after all these years? He seemed to get my point -- he was a bit nasty and said "Does that mean I have to get all my meals now?" And I just said, no that I guess we'd just muddle along in the way we have been doing. There is only one time he has cooked for me in alll the years I've been too sick to function at an okay level. One night I was very tired, very hungry and he was complaining about him not having any dinner (he refuses to by take-out unless it's a Sunday and he'll pick up some lovely fish and salads for himself -- I can't eat it due to my food intolerances) when I asked him 'who was going to cook my dinner?' He looked at me and cooked me some scrambled eggs on toast. Apparently that's his idea of dinner for me but not for himself. He went to bed without cooking any for himself just to make a point that I wasn't 'doing my job.'

Also, I'm not getting the variety of food I need to help me be well. I'm eating badly and it would be adding to the harm done to my heatlh. And I've been hiding it from my doctors thinking that they will be angry with me for not eating well. I don't bring up my diet with them because of this. Which is so stupid because the reason I am not eating well is because of this illness -- I don't have the energy to do make meals my body can tolerate. So I just eat the same old things over and over again and have been doing this now for 8 years when my body, overnight, reacted to salicylates, amines, msg, preservatives and flavourings and colourings. I've been blaming myself (and feeling guilty) for not feeding myself properly when I'm not capable of doing so due to my illness. How crazy is that?

I just wanted to let you know that your post got me to thinking and has liberated me somewhat from feeling guilty and 'lazy' about not looking after myself properly. I hope you can find a way to feed yourself properly. I hope the same thing for myself.

P.S. I'm sure I've repeated myself over and over -- I can't seem to 'edit' these days. I tend to 'ramble' and 'repeat' quite a bit. But I'm not going to say sorry for it. I just can't help it. And your 'sorry post' helped me to see that it's just the way it is, for now.

 

[Frickly]

Hi bigbird, I just wanted to say welcome and am glad that you realize it's not your fault. My first thought when reading your post is that you cannot be there for anyone else if you don't take care of yourself first. That means your husband might have to make his own dinner. I understand how difficult it is to cook. We went through several months where my husband would come home from work and have to cook for me and my three kids every night. I did feel so guilty about it and found myself saying 'I am sorry" alot (please don't tell anyone) but I just couldn't do it. I am so sorry you are having such a difficult time but just do what you need to get yourself better as you cannot make your husband be supportive or uinderstand what you are going through. Hang around as I think you will find alot of support here.

Take care,

 

[bigbird]

Thanks Frickly,

It's always good to be in a place where your problems are understood.

 

[muffin]

Bigbird: Shame I don't live near you as that drunk of a husband would be flat on the ground with a frying pan in his mouth. You deserve far better treatment than this from him and everyone else. Do you have family nearby that you could go to? Anyway to get away from this guy? HE is making you more sick from what I am reading. Your diet should be better but that drunk is the real problem here. And you feel stuck with him and dependent upon him as well.

You are doing a great job with what little energy and health you have so do NOT beat on yourself. But that husband, well, he does need a couple of good beatings. I would love to give them to him too.
I hate that you are in this situation. Do you have SSA or other form of assistance? Family? Friends? At this point it may be better to think of ways to get away from this guy and then your diet and health will improve. Certainly your mental health will improve being away from a nasty drunk. I am so very sorry for you and wish I were there to help. Please keep writing us here. I really hate this for you.