Feeling so much guilt as a mum :(

[Jemima37]

I was diagnosed last summer with cfs but I've had fatigue issues since 2016.

Ive been in a constant crash now for months. No let up. I posted here a few months ago regarding the huge anxiety setback I've had and since that I've been in another long cfs crash after a great few months last summer. This was my post https://forums.phoenixrising.me/index.php?threads/constant-crash-anyone.57083/#post-993929

Ive developed severe depression in the last 8 months. I'm a mum to 3 children, they're 16, 14 and almost 13. My hubby does all the cooking and cleaning because in this last 8 months I've been too unwell to do any of it. I feel so much guilt every day. I feel the worst wife and mother. I wake daily in tears it's another day of resting. Some days I feel so much guilt it triggers a panic attack. Just typing this triggers panic. It's all so traumatic. I was doing so well then last winter anxiety and panic hit and for 8 months I've been so crashed. I have to rest all day and I'm worried that's causing more damage being less active.

I feel so alone and afraid it's not normal to be this crashed constantly. I'm just constantly feeling heavy and weak. I am forcing myself up hourly off my bed to do. 2 minutes waking and even that feels too much but I try to hit 1000 steps a day or i worry. Even showers every 3 days is too much. Everything has become hard and I suffer awful overwhelm and guilt every day.

Ive a wonderful husband and three children, they understand so much but I spend every day just crying because I feel I'm letting them all down and putting pressure on them. I have thoughts every day I'm a terrible mum, I even look so far ahead worrying I won't ever make their weddings etc I haven't been outside in months, I've developed such bad anxiety and depression it's horrible.

Can anyone offer any advice on how to cope with this guilt and beating myself up? I'm worried sick I'm going to ruin my children's childhood

Thank you.

J

 

[percyval577]

Trust your children. They are old enough - and you are there. Ask them something funny, if you can manage.

PS: I feel quite light now by restricting manganese, sugar, and fat (but if it works, beware of eating much of them, now it would be horrible.)

 

[Cath]

@Jemima37, I just had to reply to your post... my daughter’s name is Jemima

A few years back when I was in a similar situation as you are now, very ill, bed bound and suffering depression and panic attacks, someone said to me, "Be gentle with yourself".

The next time you are beating yourself up over not being there for your children and husband, perhaps it would be a good time to stop and ask yourself, "If my husband was this ill would I be there for him? Or perhaps, "If one of my children was as ill as this would I do everything in my power to help them get through? I think the answer to both questions would be a resounding, YES.
Guilt has no place in your life, it is a useless waste of your precious energy.

The main thing I have learnt about this despicable disease is NOT to push myself. Please rest completely during this period of crashing.
Remember you are still the same person you were before you got ill. The illness is not you.

Be gentle with yourself,

Cath

 

[Wishful]

Getting ME/CFS is no more your fault than getting hit by a drunk driver. You didn't intentionally do anything to get the disease, because no one yet knows what causes it. So, no need to feel guilty for something you had no control over. Likewise no need to feel guilty for not getting better yet, because again, no one knows how to do so. You might want to make clear to your children that it's not somehow their fault either, in case they somehow think they might be.

I also suggest to not push yourself to do 1000 steps a day just to try to prove something. We don't know that it will help you, and we do know (from other members' experiences) that it could worsen your ME/CFS. Try complete rest for a while, and make do with sponge baths rather than straining yourself to take a shower. No one can say whether complete bedrest will let you improve, but at this point it's the safest thing to try and the most likely to help. Later, your body might tell you "I want to move around a bit now", so listen to it and do some light movement. Your body will probably give you better advice on what to do than most doctors at this point.

Also, diet is important. It's different for every ME/CFS victim, so there's no complete list of what to eat and what to avoid. What helped me the most was keeping a journal of food/activity/symptoms. That allowed me to identify foods and activities that worsened my symptoms, and a few that helped. For example, there was something in a multivitamin tablet that reduced my symptoms, but also several others that worsened them. Niacin gave me suicidal moods. Modifying my diet to avoid specific substances made a big difference in my quality of life. Likewise, my journal helped me identify activities I could continue doing for fitness, and which ones would make my symptoms worse.

There's no instant solution for ME/CFS yet, and no 'works for everyone' advice. Complete rest seems like the safest treatment for a crash. Some people find that prednisone (or other cortisone drugs) gives temporary remission, but then stops working and won't work again. However, that temporary remission is wonderful psychologically, because it shows that you can feel healthy again; that your body isn't permanently damaged. Some of us have had these temporary remissions from other causes, and you might have them too. Just don't overdo it when you feel one, even though you will feel that you want to. Overdoing it will just lead to another crash.

One more thing: researchers are hard at work at finding out what ME/CFS is, and how to treat it. There should be some clinical tests available soon, which should help in getting some respect, and avoiding misdiagnoses and treatments that don't work. Treatments should follow. I'm optimistic about that.

For now, dedicate yourself to complete rest. Needing that rest is not your fault. Getting that rest is your contribution to your family's wellbeing.

 

[Jemima37]

Thank you all so much for your kind replies.
They really helped me view things differently. I wake daily full of guilt etc. And it drags me down all day.

I am forcing myself to walk around upstairs hourly for. 2 minutes but right now that's even hard but I fear if I don't I will get a Dvt so it's why I keep pushing myself. This afternoon I let myself go every 2 hours to the bathroom and that's all I could manage was 2 to 4 minutes on my feet. My fitbit says I've only done 800 steps today so I have moves a bit less which sets my anxiety off about not being mobile enough. I can't win lol. I do need to stop worrying about it and listen to my poor body.

I am lucky I have 3 beautiful children and a wonderful husband who never complain. My husband works full time, he does all the cooking, washing etc after work and our children chip in and do a chore a day to help. I have no other support as I've no extended family. I'm so lucky to have my own wonderful family.

Thank you again, you're all so kind. I was nervous to post this today, it caused a lot of emotion but I'm glad I reached out as I've been suffering in silence all year.

Thank you.

Julie x (Cath, my daughter is also called Jemima, when almost 13. I adore her name so pinched it for my nickname here, it's far nicer than my own lol) Thank you so much for your kind words, it meant a lot to me. Xx

 

[RYO]

I share your pain. I have two teenage boys. I've been ill since May, 2012. I've missed a lot of family moments over the last 6 years. It bothers more than not being able to work. But my wife and my boys are the reason for carrying on.

My illness started with severe viral infection trigger. Have you ever tried pyridostigmine?

Good luck and hang in there...

 

[Dechi]

I feel deep sympathy for you. It’s really hard when we feel we can’t be the mother we would like to be. My kids are older than yours, they’re young adults, but I still feel strange not being able to do as much as I would like for them. My daughter does a lot for me and it saddens me because she shouldn’t have to care for her mother so young.

The thing you need to remember is that although this is not an ideal situation at all, your children still have a mom who loves them. When you are well enough, you can listen to them and give them advice on life. And they also have a dad who can do what needs to be physically done for them, and also be supportive. This is what counts most. Love and support.

With any chronic disease, negative feelings such as guilt, fear and anxiety will unfortunately worsen symptoms. (I am not suggesting you are the cause of your illness because you are not at all). So trying to be as zen as possible, however difficult it is, does matter a lot.

I hope you can find peace within yourself. Bless you.

 

[anne_likes_red]

So much great advice already!

I crashed and was bedbound when mine were a bit younger and basically I had to learn (for the first time) how to delegate well and how to ask for more help with physical tasks. I did have extended family close by, and my husbands employer was and continues to be incredibly supportive.
There are times of the day I function better and I use that time for figuring out how to delegate, getting stuff started that other people can finish etc. Sounds like you're well onto it with the kids being responsible for chores...and your husband sounds like mine - willing to take on extra too. As my health has improved a bit I've been able to take on more again but I still have to be very careful.

Treat yourself as kindly as you would one of your children if they were struck down with something so devastating. Let go of any guilt, it will only compound your exhaustion. You can still be there for your family in the ways that really matter. You will know what I mean. I can tell from your posts.
Your kids are learning from you how to ask for help and how to manage well in difficult circumstances. Any teenager is blessed to have a positive role model for that, and it sounds like they have their father as a great role model too! xx

 

[Cath]

I am forcing myself to walk around upstairs hourly for. 2 minutes but right now that's even hard but I fear if I don't I will get a Dvt so it's why I keep pushing myself.

My fitbit says...

(Cath, my daughter is also called Jemima, when almost 13. I adore her name so pinched it for my nickname here, it's far nicer than my own lol)

@Jemima37, It might be easier at the moment to stay in bed and do calf flexes. Lying flat and keeping your leg on the bed, gently angle your foot up towards your body. I’m not sure if I’ve explained it properly? What this does is flex the calf muscle which then pumps the blood back towards your heart. Also making small circles with your foot helps. These are the type of exercises advised for long aeroplane flights.

Maybe your fitbit belongs in the drawer for now, like mine did. It is not designed for people in your situation and can be counterproductive to recovery.

This just confirms that we think alike and can pick wonderful names for our daughters.

Cheers,
Cath

PS Cath is the name of my favourite Aunty.

 

[Wishful]

One additional cheerful thought for you: once the researchers actually discover a treatment, recovery should be swift. At this point you might be imagining that recovery might take years of slow progress. The temporary remissions seem to indicate that we have a chemical switch with a 'normal healthy' setting and an 'abnormal fatigue' setting, and our switches are snapped into the latter position. If you can snap the switch into the normal position, your body's cells can return to normal function within hours.

If they did discover the correct drug, you could be wheeled to the doctor's office in the morning, and feel full of energy later in the day. We're all just waiting for that discovery.

 

[Jemima37]

Thank you again for your lovely replies they meant so much to me.

My children are so great and understanding, I just hate how much guilt I carry that they see their mum like this. I fear they compare me to their friends mums and sometimes I feel I've failed them. I hope they remember how I was before this. I didn't rely on their dad, I was so independent and took them everywhere. Now all I do is rest all day. Its so sad because last summer things improved and I was back sat downstairs, cooking and cleaning. Now their dad does everything and I do nothing.

My worry is, is it normal to be in a constant state of fatigue? I used to get better days but not this 8 months, every day is the same. I tjink that's why I'm so depressed. When I had the cfs before I lived for thr better days, small trips to the duck pond, able to cook their tea etc.. But now every day is the same hell. I've woken up today and I've this dark cloud over my head and sinking in my stomach. I even get panic attacks at the day ahead. This is most days but at the weekend I feel it worse as I feel guilty hubby is doing so much at home. I hate this strong emotion I feel and sinking stomach. Its hard to explain but it's as though this 8 months is now a strong sinking feeling in my stomach and I just wake daily with it and dread my days. I never used to but I guess I've never constantly been crashes and unable to do things.

Some days I feel so bad I need to lie alone and can't see my children until I feel a bit better, so even that makes me feel a bad mum. I fear we aren't as close since I've felt this bad. I hate what this has done to me and I worry I'm pushing my family away at times, which I'm not but some days I feel so drained and anxious I need time to gather myself.

Sorry this got long. I know I'm so very hard on myself. I'm 39 soon and feel my 30s have been taken from me. 6 years ago my brother attacked me, my mum and sisters treated me terribly because I wouldn't forgive him and I was alienated from my family, I had years of anxiety and agoraphobia after that and then 3 years ago my health deteriorated. I also lost my grandmother who was more of a mother figure. Its been so hard.

I'm lucky to have my life, I cry at the thought of life ending so I'm not suicidal I just want to make that clear but I'm so depressed due to my situation this last 8 months as I worry will i ever function better again. Some days just going for a number 2 results in me feeling breathless and out of puff as my heart rate goes high. I feel useless. Sorry for too much info but I worry about that as its such a simple thing I find hard. Showers, etc.. I can't even cook for my children or go outside with them.

I know being this negative and not accepting thing is making me worse because on the days I cry, feel low, have panic etc I feel even worse physically. I just don't know how to accept the anxiety, how to accept my panic or cfs. I wish I could live more zen, any advice on that would be so appreciated. Thank you.

Again I'm sorry this got long. Now to get up and face the day.

Thank you all so much.

Julie xx

 

[EtherSpin]

Julie I am so sorry to hear of your struggles - an absolutely awful time and progression to watch happening to yourself.

I'm a dad of 3 and mine are all between toddler - 10 age so I get the guilt bit, my youngest is yet to play at a park with me (ever?) - on the other hand though, my eldest has astonished me, she has no hesitation around folks with confronting disabilities, she is super warm to a girl at school who is barely verbal and physically lashes out at others, we now configure our birthday parties carefully to accommodate kids with hearing difficulties, blindness, need of ramps and other mobility access , severe reactions to foods etc

constant discussion and evolution of expectations was needed with my wife, once she understood this illness there was no stigma and she told me to stop bloody trying to be sparkling clean around her with showers every few days and now she assists me with that less than once a month, the rest are flannel washes and exfoliation sessions with dry brush.

I tried to take on lots of new duties at first , not realising that my rapid decline whilst in workforce would slow but not actually stop so I don't do solitary cooking or gardening stuff but I get soil delivered,get a garden guy to weed and then my kids will help me choose our veggie seeds online, we plant those and they pick them when the time is right and i record them doing little documentaries about novel vegetables and what you can make with them...
I buy them audiobooks and cause I can't sit and read with them I snuggle and watch the movie adaptations and that part of our chat fodder, we be nerds together and we do video games as well. at first I couldnt do those (books,music and fast moving stuff is still out for me completely) but once I became OK with a low level of concentration, finding which games are easy and then not caring about failing many many times I could do it and the kids didn't care , they want to play, talk about whats going on and spend time.

my wife chops onions, buys recipe ingredients, cleans up after cooking sessions and this lets me just be with the kids whilst we roughly throw everything together for a cake cause I have retained my ability to eyeball and do new recipes without measuring even in the realms of baking and the kids love this, I am floored for a day after but this is good, when I am smacked down and stuck I beam sometimes and the youngest might come lay on my chest and ask me to make up some new story about what 'goldilocks do next time'

your kids are teens, this experience is the type of thing that will give them tools to be good friends, good spouses , good employees, good bosses, good co-workers or *whatever* when they have friends and colleagues with any kind of illness or issue - if this goes right they are learning about life and redefining what is necessary to relate and have a full connection with a person.

I was stuck horizontal for the first year after stopping work and then when i got the ability to stand for stints ( medications) I couldn't be near noises and was blinded by sun or indoor lights the year after that - I hope this will be similar for you and that between new skills you and your guy develop you will be able to reintegrate as a core piece of the family unit.

I screw up constantly, squeeling in panic because the speed of the kids is too much for me to cognitively keep up with and POTS is filling me with stupid adrenaline , 50% of the time I am right and 50% of the time Im out of order and need to apologise, this is all good and people now know how to take me.

I understand about the loo as well, I was (and sometimes still am) crashing about sliding along walls afterwards cause im dizzy getting back up and also my legs and toes are completely numb. after that monthly shower I am stuck for about 8 hours with blood diverted to my tummy, cold extremities, panic and fog etc

I need to go as one has a bus to catch in the morning and simply walking out front door with her to the bus is one of my daily duties as tiny as it is, its mine and there is no way in hell I will let my wife or a grandparent take that role (all respect to those lovely folks!)

sorry for wall of text, can't write or be concise to save my life now. Im really feeling for you but I have a confidence that your sincerity and care along with your husbands attitude will make things change and evolve as they need to

 

[Dechi]

@Jemima37

Julie I can only imagine how hard it must be. You used to be mild/moderate and are now on the severe scale. I am moderate, with ma condition very slowly deteriorating over the last few years of the illness starting. I was made aware how much rest is important, and not overdoing it. And I followed that advice, but even then, I didn’t get better.

It really is frustrating. I think the only thing you can do right now is forgive yourself and allow your body the rest it needs. Do not try to fight this. And when you finally have a good day, enjoy it but keep resting. Hopefully down the line you will get a better quality of life, even it it’s not like it used to be.

I really wish you the best. And hope better days are coming soon your way.

 

[Wishful]

My worry is, is it normal to be in a constant state of fatigue?

That's a really tough question, because it seems that every ME/CFS victim is different. I certainly would make an effort to look for alternative explanations for the serious constant fatigue. If nothing significant shows up in medical tests, I suggest checking your diet and environment. Maybe you're reacting to something you eat every day (or a daily supplement that's supposed to be "for your health"). Maybe you're reacting to some mold or toxic chemical chemical (foam mattress, particleboard furniture, etc) in your bedroom. Could you arrange for a drastic change for a while, maybe staying at a friends' place for a few days, or at a hotel? If you've already done that in the last 8 months, maybe from an overnight hospital stay, at least that's something you can check off your list of possibilities.

If this crash continues, and you're getting desperately depressed, I still think prednisone is worth trying, even if it doesn't provide any long-term physical improvement. The psychological benefit of even a brief remission can be worthwhile. Of course, since we're all different, there's no guarantee that prednisone will provide that temporary remission. It's just something that multiple people have reported. Supplemental iodine and cumin both gave gave me the same temporary remission as prednisone, but no one else has reported that effect from either.

 

[Rufous McKinney]

My worry is, is it normal to be in a constant state of fatigue?

of course it is not normal, but your ill. Why are we surprised we are so sick when are planet is under constant assault, chemicals and electromagnetic pollution is rampant. When you can FEEL the WIFI in your body, which I can when I am very run down, what is this poor body experiencing with 59 WIFI signals bombarding my new apartment?.

I remain convinced that part of this relates to the total load assault. Better living through Chemistry? Invest in Plastics. Perfumes. Chemicals. I feel ill each time I open the linen closet: the perfume from the prior laundry soap is awful. Cologn on the body of my son-in-law. Where does it end?

What do you do when environmental sensitivities suggest: you cannot escape it, almost ever? Should I relocate to Mars?

 

[Rufous McKinney]

Hi Julie, I beat myself up in similar ways. I am not a friend to my own self. This is psychologically very hard. Like you have one day where you felt a little better (maybe) then: NOPE that left again. Its: poignant. Its disappointment, again. We feel robbed.

And people don't understand, or you feel you cannot talk about it because its depressing and heh, aren't we supposed to be Happy Monkeys?

so my 35 year old daughter just left from a visit. Even she thinks that somewhere inside I"ve made this all up. I am so lucky she does not exhibit these issues.

I've used any number of mental "tricks" to move toward more acceptance and less resistance, as resistance is futile. Astrology: perhaps I chose this life, these major issues, in order to learn and grow as a spiritual being; rituals, including asking for assistance from: any spirit out there...in exchange, I offer to share that assistance with others. At my lowest points, I find that I have I intense spiritual experiences which have been very profound for me. Perhaps I am learning more, thru this difficult illness. Perhaps our children: chose us as parents for important reasons, for their own growth and spiritual development. We become Job: and there is an opportunity for God to show up.

 

[Wishful]

of course it is not normal, but your ill.

I think she was asking about 'normal for ME/CFS', which is a different matter. I think there are members here who have been bedridden for years, and others who have had bad crashes lasting many months. They're the ones who can give the most applicable advice. I think most of us reach a point where we need to reach out to someone who can understand, and hopefully hear something to refresh our optimism. This is especially true when we've dealt with a long string of people who dismiss our disorder as nonsense. I just started reading a book on depression, and when the author described CFS as a 'quasidelusional disorder', I gave up on it.

@Jemima37 , if you need a sympathetic ear (or pair of eyes in this medium), we're here. You are not the only one with this disorder, and there are good people working on a treatment/cure. Also, even without an official treatment, many of us have found our own individual treatments that do improve our quality of life. Finding one is more persistence and luck than procedure, but it is a possibility. Maybe yours is sitting in the spice rack in your kitchen. Yes it's a long shot, but such experimentation at least lets you feel like you're doing something proactive.

 

[FinRinTin]

@Jenima37
I know how you feel because I'm in the same situation with my son.
He's ten now and I've already missed more or less 5 years of his life.

Regarding your low mood.
In my experience anxiety and depression are typical symptoms of CFS.
If something overwhelms me - and it could be something considered by most people as trivial - I react almost instantly with a worsening of my mood.

Btw since becoming ill with CFS I've also experienced panic attacks .. and I never had one in my whole life before.


I've tried countless things to counter anxiety and panic attacks but there are few who have made a difference.
Good is acupuncture but it's difficult to use it when needed.
Also the supplements described by @Hip on this forum are very good( especially Glucosamine).

But by far the best effects I've got with the Wim Hof method.
It's mainly a breathing technique which for me has the same relaxation effect as one hour of acupuncture or meditation.
Usually if I've tried something - as is typical in CFS - after a while the effect goes missing.
Amazingly with the Wim Hof method this hasn't happened and I'm very surprised because the technique is so simple that it shouldn't have any effect

If you are interested there are a lot of youtube videos on this technique.

 

[Jemima37]

I think she was asking about 'normal for ME/CFS', which is a different matter. I think there are members here who have been bedridden for years, and others who have had bad crashes lasting many months. They're the ones who can give the most applicable advice. I think most of us reach a point where we need to reach out to someone who can understand, and hopefully hear something to refresh our optimism. This is especially true when we've dealt with a long string of people who dismiss our disorder as nonsense. I just started reading a book on depression, and when the author described CFS as a 'quasidelusional disorder', I gave up on it.

@Jemima37 , if you need a sympathetic ear (or pair of eyes in this medium), we're here. You are not the only one with this disorder, and there are good people working on a treatment/cure. Also, even without an official treatment, many of us have found our own individual treatments that do improve our quality of life. Finding one is more persistence and luck than procedure, but it is a possibility. Maybe yours is sitting in the spice rack in your kitchen. Yes it's a long shot, but such experimentation at least lets you feel like you're doing something proactive.

Thank you so much for your reply. You're very kind. I appreciate you replying to me.

I'm not surprised you gave up on the book. It's so insulting isn't it.

Thank you again, I'm so glad I opened up here. I've been suffering alone for so long and only having my husband and children for support with this it's difficult.

Julie

 

[Jemima37]

@Jenima37
I know how you feel because I'm in the same situation with my son.
He's ten now and I've already missed more or less 5 years of his life.

Regarding your low mood.
In my experience anxiety and depression are typical symptoms of CFS.
If something overwhelms me - and it could be something considered by most people as trivial - I react almost instantly with a worsening of my mood.

Btw since becoming ill with CFS I've also experienced panic attacks .. and I never had one in my whole life before.


I've tried countless things to counter anxiety and panic attacks but there are few who have made a difference.
Good is acupuncture but it's difficult to use it when needed.
Also the supplements described by @Hip on this forum are very good( especially Glucosamine).

But by far the best effects I've got with the Wim Hof method.
It's mainly a breathing technique which for me has the same relaxation effect as one hour of acupuncture or meditation.
Usually if I've tried something - as is typical in CFS - after a while the effect goes missing.
Amazingly with the Wim Hof method this hasn't happened and I'm very surprised because the technique is so simple that it shouldn't have any effect

If you are interested there are a lot of youtube videos on this technique.

Thank you so much.

My anxiety has hit hard since cfs got worse and the panic attacks are new to me too.

I shall definitely look on YouTube for that, thank you.

I also get overwhelmed so easily. It can be simple things like ordering something online and wham I tele panicky and like irs all too much. It's bizarre and I feel a freak. My children sometimes are too overwhelming and stimulating for my senses and it can trigger panic. Teenage mood swings lol. But it makes me feel I'm odd for not being able to cope with even a tiny bit of stress.

I appreciate your kind reply.

Julie x