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Overwhelming Guilt

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tortoisegirl
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Post  kathrodrick Fri Oct 07, 2011 10:48 pm

Is there anyone else who feels this tremendous guilt when they have to bow out of a planned activity with your family or especially with your kids, when the the oh so familiar migraine gets you. Your 12 yr son says "It's OK Mom I understand. Just get better, I love you." I miss football games, baseball games team activities. Also the wonderful guilty feeling you get if you finally need to go to to ER, someone has to take you and wait with you, for as long as it takes and that can be hours. I try so hard to avoid these situations, I just feel like a tremendous burden for everyone. Sorry this was my first time posting it could have been put together better. Kathy

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Post  Jewishmother Fri Oct 07, 2011 11:19 pm

I think you expressed yourself very well and all of us understand how you feel. Guilt is an emotion we have all experienced..............it is not fair that the migraines not only cause us pain but they also affect those we love. I remember when my daughter was 2 and I was laying on the floor in so much pain - she would rub my back to help me feel better. We do the best we can and we learn to cherish (and our families do too) the pain-free time we have with our families. Your son sounds like a very kind, empathetic young man. Have you talked to your family about how you feel? It can help to talk it out with them. Please stay in touch - posting can be a great way to vent our feelings and to know we are not alone. L
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Post  carlajo Sat Oct 08, 2011 9:08 am

I absolutely know how you feel about the Guilt. Totally.

For me, on days that I can actually function and attend events, I tend to "overdo" it because I am trying to make up for all the things I missed because i was sick. Does that make sense?

It is so wonderful to have all this understanding here.

I hope we all have as pain-free of a day that we can!
carlajo:)

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Post  tortoisegirl Sat Oct 08, 2011 11:29 am

Welcome to the group! Yes I can very much relate, but for me its just my interaction with hubby and friends and family (no kids). I imagine with kids it would be tougher. My poor health is a big reason we we likely decide not to have kids. I feel guilty more so that the person I used to be before the chronic headache is mostly gone, only appearing in short bursts. For my 'headache' is singular not plural as I've had it 24/7 for 5/6 years, although it varies in intensity. Hubby mentions it usually only when the old me comes out, when I have a good couple hours every couple months.

It helps for me to make very little definite plans. I still manage to work full time, but when it comes to social events, its one low-key thing a week, like a date night with hubby or having friends over for dinner. I prefer to have people over to the house because if I don't feel so well I can just sit down and chat and hubby can take car of stuff, and if I have to go up to bed, then so be it (don't have to worry about leaving early and getting home). If I end up being able to add stuff to the schedule, great, but it prevents myself from overdoing it and being sick Sunday (usually Saturday is leave the house day).

I would suggest to try to not let yourself feel as guilt because this is the hand you were dealt and you are defined by how you learn to cope. I try to make myself look at the positives of my situation such as that I still have a lot to be thankful for and its made me a strong person. Agree to talk over your feelings with your family. Beyond the "I feel guilty" and "Don't worry you can't do anything about getting a migraine". A therapist could be helpful too. Some are specially trained in helping patients cope with chronic illness and how it disrupts their lives. It can be something very beneficial to consider (and often insurance pays). Hope to see you around here more. Best wishes.

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Post  Mini Sun Oct 09, 2011 1:43 am

Welcome you to our forum, Kathy. Most of us here are very familiar with the feelings you describe, Kathy.
We never shake it off. The dread of having to cancel at the last moment, or spoil family party by not being able to join in all the fun lives with us all the time. This "side effects" of migraine is one of the most painful to bear, but we deal with it in the best we can, even if it does not get any better with time.

Explaining to the loved ones and people we care for how badly we feel whenever we have to cancel or not able to join them, lovingly but in a calm voice, helps a lot. I do it also later, after the event when I feel better, so we can discuss it further if necessary underlining how much I wanted to have fun with them, and how dissapointed I was for letting them down.

Children understand that, even at very young age, they often mature to be more compassionate and caring - mine certainly did.
But having said that, we all wish they things were different.

Carlajo, I also tend to overdo things on good days and often wear myself out catching up with all neglected jobs at home and catching up with friends.
The thing is, not to try to make too many arrangements on such good days, because then we feel even worse when we have to cance, letting people down, again. It is all such a fine balancing act.

Over the years I've found that true friends understand and although dissapointed, they deal quite well with such cancellations, provided it is not done at the very last moment.
Still, when this happens I still feel guilty.



.
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Post  Brenda Sun Oct 09, 2011 9:54 pm

First of all, welcome to the our little family. I wish you were pain free so that you didn't need to find us, but since you do, I'm glad you're here. Smile

I definitely feel guilty all the time. For the 24 years of my life that I had migraines when I lived with my parents, I felt badly that I made them miss so many things. Finally near the end of that time, I was able to convince them that they should go on about their plans without me. I wasn't terminally ill. It just feels like it sometimes.

Now that I'm married, it's Frank who has to deal with the cancellations. I swear every anniversary and birthday I end up with a migraine and we have to postpone our trips. He's normally very understanding because he's got medical conditions of his own that cause problems with our schedule. We don't have kids, so at least I'm not feeling like I'm letting them down. I used to be around my nieces and nephews a lot though, and they'd want me to play with them, or I'd promise to take them somewhere and then I'd have to bow out.

Whenever I make plans with ANYONE now, though, I tell them it's "head permitting." They all know they could very well get a call from me at the last minute bowing out because I'm sick.
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Post  LindsayG Sat Oct 15, 2011 10:51 am

Hi Kathy,

I have registered with this forum so that I could respond to your post - in you and the others who have replied, I finally feel that there are other people out there who understand how I feel. I have had migraines for about 6 years now (I'm 24). I usually get them about once a week, although sometimes the pattern changes to be fortnightly (always good!). I know that there are loads of people who have them much worse than this, but I still find it really hard to cope with.

I feel constant guilt that I am letting people down because of my migraines. I don't know if it's because I get excited, or just a horrible coincidence, but if ever there is a 'big' event coming up - birthday, party, Christmas etc, I almost always get a migraine. My partner has taken a long time to understand, but I think he gets it now, and he is quite understanding if I can't do something/suddenly have to go home etc. However, I still think some of my friends think I am making it up. A couple have made comments after I've missed things. I do understand that it is annoying when people let you down at the last minute, but there really isn't anything I can do!

Sorry that that sounds a bit rambly, but it is so good to see that there are people who understand - although I wish we didn't understand and just didn't ever have a migraine!

Lindsay x

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Post  ALittleLoopy Mon Oct 17, 2011 1:39 pm

I too have felt horrendous guilt, over canceling last minute, at times being bedridden, and basically feeling useless. Now the GOOD part. I too have 2 children, now 12 and 15. They are the kindest, most courteous and compassionate adolescents. They have seen how hard life can be (and at times lived with consequences of illness, such as going to full-time disability) and they don't take anything for granted. I've broken down at times and complained that I'm just useless, and THEY have lectured me that no, I'm not. They are both grateful that I'm ALWAYS around when they need to talk, or want company.

I won't ramble on too much, but in some ways, children who grow up with so much privilege and comfort aren't going to be ready when they have to face the "real" world. It will be a tremendous shock, but OUR children have lived in both worlds, and have learned to navigate both. Mine are amazingly appreciative of the little things in life, and when they tell you that it is OK, they mean it. They love you and want you free from pain, so missing some activities is never as important as having mom or dad get healthy. I'm sure I haven't truly passed on what my children have lectured and taught me, but I hope you get the gist.

One solution I use for things I can't attend is the camera. My husband will record the orchestra concert that I missed, or take photos of a get-together. Afterwards, the kids climb in bed with me (when the pain is getting bearable) and we share the event together, with them narrating as we watch. Everyone has to eventually make their own peace with this issue in their own way, as I believe that everyone on this board is in the same boat when it comes to missing out on life. I won't lie and say that I don't complain at times and cry, but the reality is that we have to deal with it. I appreciate how kind my children are to me, and that I see them show that same kindness to others. That is the gift I have received instead.

Hope this helps at least a little.
ALittleLoopy
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Post  kathrodrick Wed Oct 19, 2011 4:34 pm

I wanted to thank everyone for your kind words. I've been dealing with a particularly bad migraine for about 2 weeks now and am trying hard to not let it "get" me. Reading all the encouragement helps a lot.

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