Feeling guilty??

[Tabbie]

Does anyone else on this forum feel guilty/bad when you're not feeling well & feel like you're letting loved ones down?

I feel bad for my partner when he wants to go out & do something together & I'm too tired to even get up. I feel like im a rubbish partner who can't keep up with him or with life.

I feel like life is passing me by whilst I need to continually rest & take my meds just to stay alive while other folk are out living life.

I feel bad when I have to cancel arrangements with friends as I'm just too ill & tired,getting ready & out feels like such an effort.

How do others get round or resolve this frustrating situation??

[poopah]

I fully sympathise with all the above and i just try to make the most of the days when i am feeling well to try to make up for the bad ones. I dont feel like i am living life to the full really and its such a shame but we can only do what we can. Try to make your partner feel special in other ways, even just the littlest thing will make him feel special. Take care x

[Tabbie in reply to poopah]

Thanks for the reply,I will try to make my partner feel special,you're right poopah we do what we can & make the most of it...you take good care too xx

[mstr]

Hi Tabbie, what a good question it is. As I watched from the car, everyone going about their business today I remembered what it was like to just have loads of energy.....think I always took it for granted before. It seems now that everything has to be thought about, energies saved for times when we need it and and my general thoughts are don't over do it too much or I will pay for it the next day. I think we get so used to living like this that we forget it isn't what most most people have to do.

Twice this week I have received invites for get togethers with family/friends. My initial thoughts on both of these invites were "Oh I hope I am well and don;t have a flare up/infection of some sort". I guess it's all about how we manage these get togethers so that we don;t overdo it. So if I go out for a meal with my daughter, her partner and his family then I just have to pace myself. I wouldn't agree to a day time activity and an evening out.

Another friend asked me if I wanted to meet up for a shop, followed by a lunch. I think I am starting to realise that I do have to explain to people that I do have an immune condition and that it does cause fatigue and I do tire easily. Then I do what I can and although is not at a pace I want it to be I say to myself it's important to still see people and have a laugh and keep up with what is happening in their life too.

I too have times when I feel guilty that I don't have endless energy and pay for it when I have done too much one day. If there is an 'up side' of this I now appreciate more of what I am doing at any given time now. I don't want to lose friends so I have to be upfront and explain what's going and just hope people understand. I think this is far better than just isolating oneself (I have days when I need to do this to re-energise). I think the only way forward is to explain to people who ask you out that you may be a bit late/or maybe might not be able to stay out to late and then just enjoy the time you are there. I think you can make it up to friends in other ways....such as being there for them, remembering birthdays, little texts etc.

I think your post will touch a cord with everyone who has lupus/CTD/immune disorders and I know it has caused me to feel sad but then I think I can either 'sink or swim' and I am choosing to 'swim'. Great post Tabbie, take care xx

[Hidden]

Dear Tabbie

I echo mstr's comments, along with the others. This disease does have the tendancy to cause us to feel guilt at times - but it shouldn't... I guess all we can do is try, as much as is possible, to plan, but the old adage is "best laid plans go astray".

I now find I am upfront with people, all family, friends and close associates/colleagues know about my condition and when asked to attend something they realise it is best if they can give me notice, as mush as possible. Doing this allows me to give consideration to what I do leading up to it. I also explain that if I am unable to attend it is for a geniune reason - not sure they always really understand, but I now believe I have to listen to my own body. Fed up of always trying to not upset people by pushing myself and then paying for it later.

It's about us taking charge of whatever auto immune disease it is we have - accepting it's there and living within the confines it puts on each of us individually. It's about pacing yourself, and for me - it's not doing like I did today FAR TOO MUCH!!! and now paying the price.. Great at telling others how to manage it, not always good at putting it into practice...

Have had a few days of when even my eye lashes and finger nails ache - how can you explain that to someone who never has, and not likely to have such a feeling, even saying it to them makes me feel guilty!! But heck it is true, and I bet many of you reading this know exactly what I mean.

Totally agree with mstr - we can do the little things to reduce our feelings - the texts etc.

Take care

Hazelx

[megs_tom in reply to Hidden]

Reading the eyelashes and nails things actually made me chuckle to myself (not in a nasty way!) as I thought I was the only one who felt that and have never mentioned it to anyone as thought they would think I was mad! xxxx

[jennyhe]

Yes me to My Husband wants us to fly to Canada only because he knows I love it there, trying to explain to him that it`s just not the flight it`s all the other travelling we would have to do even with my wheelchair and the travel insurance would be sky high, I am quite willing to have a holiday here in England in a nice Country cottage I dont even mind doing the cooking but no he doesn`t want that..

I feel guilty and sometimes yearn for my old life back but mostly I guess I ahve learned to take each day as it comes and enjoy it.

[purple-lou]

I agree with everyone! I feel guilty every day. I miss doing spontaneous things! I miss going for long walks and playing on the swings with my girls. My girls put it in perspective though. They say that I'm still me and that they appreciate the good times so much more. My partner says I'm still there, just got to look abit harder!! Try to hang on to the good bits. That's what gets me through the bad times. It was mine and my partners birthday yesterday and I did way too much and I'm suffering today, but it was a great day and I know that I simply can't do anything today.

Learn to ask for help. I'm still struggling to do it, but I'm getting better. Close family understand and it's not worth suffering in silence. Xxx

[tintin49]

haven't told my children and am dreading it. i am the oldest and i look after everyone but in reality no-one looks after me. i get told i am lazy when the house is not tidy and thick and stupid when i forget stuff which is getting worse. even mid sentence i forget words. i have no friends as i cant go out much. i am 50 tommorow and feel ready not to be here..

[purple-lou in reply to tintin49]

I gave out information leaflets to family members who were unsympathetic. You can only do so much. They might surprise you if they have the right information. It's worth a try. I picked up loads of packs from my local rheumatologist clinic. I have days when I think negative thoughts. I think we all do. It's alot to accept.

hugs, louise. Xxx

[Melinda in reply to tintin49]

I think you should tell your children. You need help and support. I was reluctant to tell my children i had lupus because they knew my late sister had had it and they might jump to the wrong conclusion. Lupus affects me quite differently to how it affected her. I told them bits here and there. Don't suffer in silence. x

[Tabbie]

Thanks for your thoughts,its a tough thing to accept having any illness.

I hope that everyone gets some kind of support & eventually we all reach a level of acceptance about the disease & our individual limitations.

That's what's great about this forum..we can support one another,even if it's only virtually lets just try to keep on as best we can.Good to know you're all out there & not alone on this topic big hugs to every one (((())))xx

[mstr in reply to Tabbie]

Thanks to you Tabbie for raising this subject as it has shown us that we are not struggling alone. Some times even admitting on here about our limitations/struggles is hard to do but I find once I do open up to others about how I truly feel then it is a blessing as it enables me to 'move' forward again. Hope everyone has a great day xx

[SNOWWHITESHELLY]

Because I 'dont look sick' I often think its hard for people to accept why i don't want to go out and socialise. I have a family and would rather spend time at home with them most the time. I feel most guilty when its school holiday time and I can't manage to take my 2 boys out for day trips etc...I feel like I'm being lazy (although I can't help it) and it makes me sad I can't do what I want to do, or what other mums appear to do.

My husband works full time and has always had a social life, my Lupus has made no difference to what he does :0( I just want to ensure my children have a happy life but its getting tougher as time goes on to keep up the 'brave face" all the time! Anyone agree? Xx

[Shann07]

I totally agree i also have 2 young boys who are active and eager for their mum to be adventerous and active and i get so low when i see other young mothers so fit and healthy and i feel so old beyond my years because im so tired and exhausted most of the time, although i try to hide this, otherwise i would be constantly moaning. I would love to go jogging or for a brisk walk but all i can manage is a very short slow pace, on a very rare occasion ! My husband also works fulltime and is so fit and active i get jealous sometimes, because he just hasnt got a clue how i suffer with fatigue everyday just to see the day through, i so wish i could be more active and feel good, it makes me sad that this will never change.

[megs_tom]

Couldn't agree more with what people are saying. I feel guilty everyday and feel I am not a good enough mam or partner because of how I feel and my limitations. I can't do all the things I used to be able to do with my son (nearly 5 years old), and think people find that hard to understand as I am only 23 and look well on the outside! I am in my final year at uni, my partner works 6-7 days a week. So I feel it is my role to do the housework and have tea ready etc and beat myself up if things are not to the standard of clean I want them to be. My partner never says 'oh you haven't done such and such' (although he did in the past before I got further down this road of being unwell!) but still I feel as if it should be done and don't think he should do it as he has been at work all day. I went out for a friends birthday last night. We all went for a meal then some of the others went out drinking afterwards but I declined as I knew I would suffer! (I was worn out enough from the meal!). Another friend is having an Ann summers party on saturday and I am already dreading saying I don't want to go! they will all be drinking (something I avoid doing these days and also cant do on current meds!) and I will just be worn out from having my hyper son all day!

You just have to do what you can I guess and try and pace yourself (not something I am good at!)

xxxxx

[Lupo30]

This is really good post. I agree with what everyone has said. I am also tired of people not realising how bad the fatigue is! I too look at everyone rushing round and wonder whether I'll ever join the rat race again, I really want to be out their and away from this life-limiting illness. However, I try to take one day at a time as otherwise I'd go mad. My husband doesn't understand my illness and now when he says he wants to go and visit friends for a whole day, instead of compromising, i just tell him to go on his own. I've just come to realise that unfortunately he can bounce back to whatever he was doing before where as I can't. I know my limitations, it's not my problem no one else does, lol. Let's just hope we all have a good day, wishing you all well, especially you Tabbie.