Mum guilt. Struggling

[Jemima37]

I'm having a horrible week with anxiety so much I'm struggling to sit and spend time with my family. It's because I'm so fatigued, I'm struggling to be sociable with my own children because I try to hide my fatigue and act like a normal mum when they're sat with me but it ends in anxiety which I still have to hide. It's horrible. I feel wo much pressure to act like I'm fine with them to protect them. Its bad enough they're seeing me resting all the time again in my room, so I have to act normal as it's a change seeing me resting again and I'm worried they'll be scared I'm severely fatigued like last year when my cfs was at its worst.

It's my birthday next weekend, I'm 40, and I'm terrified of not being able to sit for long with my children, get too overwhelmed opening presents and it all lead to panic attacks. I get very overwhelmed by emotions and lately alot of noise and socialising causes too much fight or flight. I feel so guilty for needing lots of rest these last few weeks again and I've been crying all week when the children are at school. Feeling a terrible mother, because they saw me so much better, cooking and cleaning, spending time with them for hours again but now in just a few weeks I've set back and I know its affecting them so I'm worried having cfs is destroying their childhood. I want to be a normal mum who takes her kids out, who nip the shop with them, celebrates properly on special occasions, eats a meal around the table each night etc. I've cried all week on damaging their childhood these last few years since having cfs and the anxiety its brought. I really hate myself for that. I've cried all week because I'm scared of this affecting my kids and them not remembering the mum I was before. Its destroying me and I admit I feel quite depressed since this setback has hit this last month 😥

I've little happy memories of my childhood and I wanted so different for my 3. I know they wont have the mental abuse I had, and the panic and fear I had every day but I'm scared it's not been as it should be or how it was before cfs hit me. I'm crying typing this as I've bottled it up because I cant tell anyone how I'm feeling. I've been sobbing all week when alone which is making my cfs worse. The guilt, the fear of never recovering, fear I'm damaging their childhood, worry what it's doing to them seeing me setback again, comparing myself to other mothers constantly... my poor head 😥

Any advice on this? my husband says all my crying, guilt, worrying constantly about my children, about never recovering is making me more depressed, more anxious and more fatigued. Our kids are amazing they're 17, 15 and nearly 14. Such lovely, compassionate people but they got so used to seeing me 60% better for 5 months. Now after all the stress I mentioned on my last post (birthday one) I'm in my bedroom again, resting every day and because of that my anxiety and low mood has returned with all these worries. All I do is worry about my children all day, I cant get it out of my head.

 

[jesse's mom]

I understand how you feel! I have felt the same way off and on for years. My youngest daughter who is now 16 does not remember me well and full of energy.

I also just went through a time when I was feeling much better this summer. We had so much fun going for boat rides, beach trips and cooking together! I even went shopping a few times! Then got into my old pattern of push too hard and crash. The longevity of the crashes was much shorter until last month.

I tend to really beat myself up for pushing when I know that I am going to crash, I get so caught up in the moments of fun, where I can be somewhat normal. I buy into the illusion that I have control over ME/CFS. The higher I go the further I fall. It is so discouraging and sad! It makes me angry too!

I have to really tell myself that I am doing the best I can. I read an author that has our illness named Tony Barnhard. She has some books that have been very helpful. I loaned them out and need to buy new copies. (These never get returned, they are that good!) She also has a blog. She really helps with the grief that we all share as parents and humans suffering from this horrible chronic illness.

I do think that for me the grief is a process. It is made more difficult by some of the medical community who are simply ignorant about ME/CFS, or think it is not real. I went to therapy for a few years, she did research about my illness and was able to treat my husband, my daughter and myself and help with adjustments to our new normal. Be careful when choosing a therapist if you ever go that route.

I wish you all the best, and want you to know you are not alone in the way you are feeling. It sounds like you have a wonderful family. Perhaps it would make them feel better to help you with things. It does help my daughter feel like she has more control just filling my water bottle or cleaning my bathtub. She is turning out to be a very responsible, mature teenager.

I was always working and tired from that when I was raising my other children and stepchildren I am much closer to this one who I have been home every day and at least have time for daily one on one conversations.

Take care,
Jesse's Mom

 

[percyval577]

@Jemima37 I think you should explain in some rather easy way to your children that your sources are limited (it would be easier if our disease would be commonly seen as it is, indeed).
But children will understand the limitation and get all they need out of the situation, and this is the most anyway. At some point your kind consideration, I think, may turn into a lie, but children are adroit in to get what they need.
Finally, it seems that your children are already not younger than 14, so this makes it in another way special. When I was 15, I have to say, my rather very lovely parents havn´t been anymore that important (though I was already subclinical ill, so this might have made me strong, but if I look at my friends, it was rather not very different). Later my parents became in some sense more important again, but then I had grown up, and rather in my way.
Important is, I think, that parents love their children, and that they try to understand them.

 

[Blue Jay]

Jemima, you've said your children are all lovely, compassionate people so I'd say you've done a pretty good job and should stop beating yourself up. You have done, and are still doing, your best as a mum but you need to relax and look after yourself as much as possible. Like Jess's Mom says the children would probably love to help with your care. I speak as a, now elderly, mum who has raised two sons - one with special needs. My younger son is the most caring person you could ever meet and, though he's not been able to work as he also has ME, I am so proud of him.

Be kind to yourself. Enjoy your 40th in the best way for you, take breaks in a quiet room. Your children love you and will understand.

 

[gbells]

Lavender supplement is great for anxiety and is researched. I used 1-2 drops of organic essential oil in 8 oz water, sip. Non-addicting.

 

[Jemima37]

Thank you so much. Your replies mean a lot to me.

I am very lucky my children are growing up now but I still have this awful feeling I've let then down having cfs these 3 years. Even after my brother attacked me in 2012 and I had anxiety I still got out and gave my children memories and happy times. They've always been my reason. Then once the cfs hit it became harder to keep giving them holidays, trips out, family walks etc. So I've beaten myself up.

I do need to stop beating myself up. I think its purely because of my childhood being tough I'm afraid of my children not having the best they could have. Pressure on myself again
Thank you so much x

 

[gbells]

Unfortunately suffering is part of being human Jem. Be kind to yourself and ask for help when you need it.

It is not your fault that you contracted SEIDs or that it has left you disabled.

 

[Jemima37]

Thank you gbellis.

Can I ask what is SEIDs? Another term for CFS?

I just cant stop feeling so much guilt and its exhausting me.

I use lavender in my oil diffuser. It's such a lovely oil. You've reminded me my bottle is about to run out and I better order some lol. I had no idea you could drink it!

 

[gbells]

Thank you gbellis.

Can I ask what is SEIDs? Another term for CFS?

I just cant stop feeling so much guilt and its exhausting me.

I use lavender in my oil diffuser. It's such a lovely oil. You've reminded me my bottle is about to run out and I better order some lol. I had no idea you could drink it!

The name for CFS/ME was changed because it wasn't considered strong enough, people were mocking sufferers so it was changed to SEIDs.

Disability still challenges SEIDs claims.

 

[Tammy]

Have you had a heart to heart talk with your kids about your feelings? I also had guilty feelings for years with my daughter. I don't remember how old she was when I finally had "the talk". I wish I would have done it sooner because of how she responded with love and kindness...........and it really lightened my load of guilty feelings.

 

[Rufous McKinney]

Have you had a heart to heart talk with your kids about your feelings?

I think our children have more capacity for understanding and compassion than we might give them credit for. Children are resilient in many ways. Its so understandable to want to give them everything, and protect them from things like knowing, sadly, that sometimes people get sick. And life is not always fair.

My daughter is 35, and I keep trying to protect her from- fully grasping what I'm dealing with. But she is the witness, and pretending does not work. They are smart, observant.

So please, know that they love you, and of course they likely wish this wasn't the case, but they love you regardless. And there may be important lessons here, for them, things they need to learn thru this experience.

 

[MTpockets]

Your children have happy little memories too. Just because they are different to the memories you made as a kid or had planned on making with your kids doesn't mean they are not just as tender and precious to your children. You need to let go of the way you wanted life to be and recognize the goodness in the life you are forced to live. It is hard I know. Don't disparage your children's reality, they have their Mom and they are happy. Be careful not to make them feel slighted for enjoying their life the way it is, just because it's not how you think it should be.

You would be surprised how resilient kids are, as long as you are there, they can find ways to be happy. So practice some self care and explain why it's needed. Just in simple matter of fact terms. No need to justify or defend, they already know you are sick. And contrary to yourself they don't blame you for it. Hang in there, some days are better than others, but every day is worth having, especially to your kids.

 

[Jyoti]

I've been struggling with the same thing and know how absolutely devastating it is to think that you are failing your kids in some way. My youngest turns 16 this week and like @jesse's mom's daughter, she does not remember me encouraging her to make it to the top of mountains, taking her to and all over Mexico by bus, volunteering in her classroom, etc. I am so saddened that in her mind I am this beloved and frail person whom she counts on but can't trust to be there, to pick her up from a dance or take her shopping when the mood strikes.

Just a couple weeks ago I was doing some inner work on this and it came clear to me that a great deal of my grief and frustration comes from wishing it weren't so. I kept focusing on the mom I want to be, I wanted to be. I kept feeling incredibly apologetic--to my daughter as well as to others. You know--I would if I weren't sick.... I'd really love to, but.... I am so so sorry that I am limited. That I am always that lump on the bed or worse, that person who tries to pull something off on your behalf and falls flat halfway through.

And then I saw how I was blaming myself in a convoluted way for something that I too am a victim of. I was feeling guilty that I can't be who I would be if my body was healthy. Well, it isn't. I am doing everything I can to improve my health--as you are @Jemima37. We are not responsible for this situation. We can second guess everything we do and don't, every supplement, every outing, every food we put in our mouth, every telephone conversation we have.. But the truth is--if we knew how to manage this successfully we would. There are no secondary gains to speak of here, especially not when we are talking about our kids.

I am trying to embrace the attitude that this is just what it is right now. I have to live within my envelope or there is hell to pay. I didn't ask for it, I didn't want it and neither does my daughter. But we both have to deal with it and my feeling guilty and apologetic was only feeding, I think, into her sense that somehow I have abandoned her. She didn't want to see it that way, but my taking some kind of (even unspoken) responsibility by allowing that guilt gave her that impression. If I am feeling guilty and apologizing, then doesn't that imply that I could do something differently, that I have DONE this? I am trying to be matter of fact, as well as joining her in her anger that she has lost something precious in the loss of my vitality and well-being. It is the truth.

We all have to find our way through, but being there for our kids with open hearts and as much (curated) honesty as we can allow--I think that is what we can do. I can't take my daughter on long hikes anymore. But I can listen attentively to every nuance of each new romantic interest, I can watch the endless fashion shows with seemingly intense fascination, I can lend a hand with homework if the timing is right and I can help her learn to be independent and strong where I am not. In other words, we have a LOT to offer; it just might not be all or what we would have to give if things were otherwise.

 

[Hip]

I'm having a horrible week with anxiety so much I'm struggling to sit and spend time with my family.

May be of interest to you:
Completely eliminated my severe anxiety symptoms with three supplements!

 

[Chrisjr19]

The fact that you’ve raised 3 lovely and compassionate children speaks volumes and says to me that you’re a great parent with kids who understand what their mum is going through.

What makes it more amazing is that you’ve raised your children to be like this whilst having CFS which is no mean feat!

I don’t have children but couldn’t imagine having the energy to raise any, so to me you are a hero!

Seriously though, when your kids have grown up they will still have lots of happy memories to look back on, because the times when you have had more energy and been able to get more involved or have a fun day out will be extra special memories to them!

Please don’t beat yourself up or feel guilty, you’re clearly an amazing mum who loves her children to bits and you brought none of this on yourself! Xxx

 

[Judee]

I keep quoting my previous post on this because it applies to so many of the situations that we go through with this disease and feeling like we are just not "measuring up."

Here is a much abbreviated version of a wonderful message I heard from a pastor recently.

He was basically saying that there are three voices--Mercy, Condemnation, and our own voice. Neither Mercy nor Condemnation has a majority until we add our own voice (vote) in agreement with one of them.

He also said everything we do in life will be filtered through these two voices. The outcome of each situation will be determined by how we vote with our voice.

I think it helps to have a saying or song or something that we can repeat to ourselves to drown out that voice of condemnation because it is a voice that does not rest. 24/7 it will try to press us down and make us feel completely unworthy. Even if it is just the word "mercy" that you can say to yourself over and over, find something that will help you realize that you are doing your best to be the best mom you can to your kids.

Even in an ideal situation you can only ever do your best. Even a healthy mom cannot be everything to her children all the time. You don't want to teach them a standard of complete perfection anyway, do you? They are going to have failures too. You want to teach them that that's okay as well; that they can be merciful with themselves when that happens.

Okay---one more thought that helps me is this. The only ones that lose are the ones that quit. That goes along with the movie Elmo and the fish Dory. She had a mantra as well. It was this. "Just keep swimming. Just keep swimming." As long as you continue trying for your kids, even in just choosing to exist where you are in circumstances that "are what they are," you are helping them. You are showing them a strong example of "Just keep swimming." No matter what life throws at you..."Just keep swimming" cause only those who quit lose. In that way, you are being a very good mom to your kids. Resilience will see them through the rough spots and there is probably no better lesson you can give them in this life than that.

 

[Jemima37]

Thank you all.

You kind words reassured me but last night our daughter at midnight asked to speak to hubby. She opened up and told him she had been feeling low lately and a little anxious in lessons at school. She said for a year her mood has felt up and down and she was worried incase it was depression. This came as such a shock because shes so happy and always laid back like her dad. Never a sign of being low. Hubby reassured her and she came in to see me and I told her I knew what she had said and tried to reassure her. She had hidden it as she didnt want to worry me or make my crash worse.

Hubby said shes only been a bit quiet the last week or 2 since I crashed again so he doesn't believe its been a year as shes been fine. I agree and I'm not making this about me but its things like this which make me feel even worse mentally and physically. My post here was about how I fear I'm making my children's childhood sad these last 2 years since my cfs worsened. Worried they wont remember how I was and all we did together before these few years hit me with cfs. Now I fear those worries are true and I have ruined their childhood these last few years.

My daughter insisted she was fine, didnt want to tall to a doctor or anything and said it's likely hormones and she didnt want me to think it's because of me but how can I not?

Im feeling so anxious today and like the world is on my shoulders. I feel so stressed. Hubby has taken the kids out for the day so I cab rest as I was awake until 2am and awake at 7am. I'm drained. It's only been 2 weeks since I had to rest again and do less and suddenly my daughter seems so sad and down. I cant help but feel guilty. I feel so much more pressure now and it's horrible. How can I help myself to get better when I've all this guilt and now worry about my daughter.

I've even emailed mind to ask for any resources to help situations like this during teenage years.

I now fear I've failed my kids even more. I feel so much guilt that there have been times recently when I've asked them to allow me to rest for an afternoon or an evening and I fear have I pushed them away-and I've made her feel like this. She insists its not that but now I'm worried I can't rest when I need to and I will have to push myself to interact all the time even when I'm in need of quiet rest on my own. I gave my babies the best, so many beautiful memories ans cfs these 2 years has really changed how much we can do together and I'm now worried it's made my daughter depressed or something 😥😥 Yet another stress thrown at me and I know that sounds selfish but it's all the recent stressors that hit, that led to my setting back again. I know hubby is here and hes not concerned but I am feeling so upset about her saying she had been feeling this way a while. It's just so strange its flared up just since I've crashed. I know it's hard for them when their mum crashes again but I cant help it.

Sorry this got so long and I hope no one here will think I sound selfish, I don't mean to at all. I just feel stressed and now even more pressured to recover quickly. This is so unexpected.

 

[Jyoti]

@Jemima37 --I agree with @Judee --beating yourself up is not going to help anyone--not you and not your daughter and not your husband. It is understandable though.. I know I have done my share..... And learning to have compassion and mercy for ourselves is part of becoming truly compassionate people. Not a small ask in general and even harder for some of us. (I DON'T mean we are less kind people , but rather that being kind and loving to ourselves presents challenges that others do not have routinely.)

Your daughter is secure enough to go to your husband to talk about how she feels. And you are probably largely responsible for raising someone who knows how to access what she needs when she needs it. It hurts, I am sure, that it is not you she turned to first. My daughter is always 'protecting' me and I hate it but I also understand that it is because it is so important to her that I be around tomorrow and the next day that she is careful not to push me too far for her own reasons. Anyway--your daughter is resourceful and this is something to celebrate, even in the darkness. She will be ok and she is resting on and growing from the experiences she had with you earlier which were strong and powerful.

I also noticed something I think is worth considering. In your post I see:

I have ruined their childhood

and

I'm making my children's childhood sad

and more in a similar vein. But let's get this clear: it is not YOU who is responsible for all this mayhem and disappointment. I want to make this point really strongly because I think it dovetails with a really awful thing that has happened (and continues to happen) to many of us: we go to a doctor to get some assistance, to feel better and we have the entirety of our physiologically based challenges laid back at our own doorstep. If YOU would get out of bed and get some exercise...... If YOU would not be so negative and just try to engage..... If YOU would stop/start being so ______ (fill in the blank).

In other words, we are blamed for our illness. This is one of the most egregious things that gilds the lily of this disease. I think it is really important that WE not blame ourselves when and if we can manage that. YOU are not ruining your kids' lives. In fact you are undoubted working harder (given your constraints) than most healthy moms. YOU are not making them sad. It is the illness. It is ME/CFS. Not you. Not me.

I found that letting my daughter get mad was helpful to her. Not at me, but at our common enemy: ME/CFS. Why should I carry the burden on my shoulders of something that happened to me just as it has happened to her, to you, to your kids, your husband? And why shouldn't we all be angry with the losses it brings? If we can see the problem as the illness, and not the individual, that frees us to have better communication, more love and more common ground.

It is not your fault that you are sick or that you are feeling worse now and needing more rest. You are not selfish to want support around this--it is heroic to ask-- and you are absolutely doing the very best you can as a mom.

 

[Jemima37]

Jyoti

Thank you so very much. Your words made me emotional. That's so very true, its not my fault it's this awful cfs at fault. I've even given up being resentful towards my brother attacking me, my mum abandoning me because I was struggling after what he did and all that stress led to my health issues. I've been blaming myself for being ill and I have to stop that and as a family we can take our frustration out on the cfs, not me, not what happened prior to this ....

I adore my children. When my children were little my doctor said he had never seen a daughter look at her mum like mine did me. He said our bond was absolutely beautiful and I was a mum that loved her children dearly and it was plain to see I always remember that and I keep that in my mind every day.

 

[Rebeccare]

I don't have much energy to respond, but I will say this: You love your kids beyond measure. Already you have given them so much more than you had as a child. You are doing your best for them. Even though you're not able to do everything for them that you'd like, the fact that you're there for the and you love them already puts you head and shoulders above many mothers in this world (I'm sure your children prefer having a mother who is loving but tired to having an active yet abusive mother).

I am proud of you for parenting as best you can with the abilities that you have. I hope that you can acknowledge all of the things you're doing right as a parent. Please try to be kind to yourself (I know it's easy to say and hard to do, but it still bears repeating!).