I know I am not alone with this one but how do others manage the feelings of guilt that come with MS? As a single mum I battle with feeling guilty a lot of the time. I hate the fact that I am unable to do so many of the things that non-MS families take for granted and that I am laid up with the dreaded fatigue so much of the time.
I feel dreadfully guilty for being away from my daughter when I am in hospital ( hardly my fault!) but who ever said guilt was a rational emotion?
I hate the fact that my daughter is being short changed by my lack of mobility, my lack of energy and my lack of money. She doesn’t complain and I do know I am a good Mum. It is just that the circumstances are so far from ideal and the guilt gnaws at me.
I wish I could do the simple things with her like spend a whole day out instead of always having to cut things short due to the fatigue. I wish we had more family privacy and didn’t need my carer always in the house even though she is marvellous and almost part of the family. I wish I could run in the park with my daughter. I wish I wasn’t always having to say, “Wait for me” as I hobble along behind her on my crutches.
I wish i knew the answer.its all part of it,for some of us,my daughter is having her 1st baby.and really needs her mum to be there for her, i am stuck in bed 24/7 and cant see it changing anytime soon,and my guilt is really getting me down,just now,we have to tell ourselves its not our fault,its not like we have any choice in the matter,and what you have/are going through this last year or so,well i wouldnt wish it on my worst enemy.i feel so sorry for my daughter, she lost her dad aged 2.then has to see me go through the spms,i know we are supposed to think positive,but its not always possible,when life throws you more than your fair share.i really hope you start to pick up and have better health in 2013.
Is there anything that has brought this on in particular?
I know there aren’t words to make this all better so I won’t even try,but I hope that by writing it all down has helped and you know the cyber army is always there with a shoulder.
Thanks Pip. I think it is just the accumulation of everything this year that has brought it all to a head. I have just been sooooo sick and then just over a week ago I crashed into the door frame while doing the MS Wobble Walk and dislocated my shoulder. I have done a full tendon tear and fractured the shoulder capsule and torn the catilage and am looking at the possibility of surgery but my GP is saying that I will need to go into in-patient Rehab for the post-Op period for 6-8 weeks to recover as I won’t be able to mange at home. So this is looking totally impossible in terms of my parenting responsibilties and aaaggghhhh… too complicated.
This on top of pneumonia that had me in hospital for 2 weeks and nearly killed me and then pulmonary embolisms that was also nearly fatal plus another admission earlier in the year for 2 weeks for MS pain management…
I have been so sick all year and my daughter is now seeing a psychologist for anxiety and stress and I just don’t feel I am being the sort of Mum I want to be or had planned to be. All of it is catching up with me and getting on top of me.
Also my neuro changed my anti-depressants a couple of months ago and I don’t think the new ones are as good as my old ones. I have to ask her to swap me back again. It has just been a terrible year and I am having a bad emotional patch.
Thanks for the shoulder Pip. Here is a cyber towel to dry it off with now…
When I was a single mom I went to the gp and ended up immediately hospitalised. My son was on a school trip with a planned return of 7pm and I was in hospital. So I do have some understanding of how difficult it can be.
I was in for 3 weeks and my son who was 12 refused point blank to go to his dad and I have no family nearer than 60miles.
I was lucky that a friend had him to stay and her husband took him to and from school everyday aswell as all his after school things.
Do you have any family/friend network or your daughter have a friend who could have her so that she was stable and cared for in one place, allowing you all the time you need to have the surgery and recovery time?
I am guessing that if you don’t have the surgery there will be long terms problems?
I think the first thing you would advise someone who wrote a post like yours would be to have that chat with the gp re meds as a matter of urgency. Like you say you have had a shocking year and yet another mountain to climb looms infront of you. You need to be in the best frame of mind to tackle it so small steps…the first being in the docs direction.
There’s always guilt attached to being a mum. We always think we should have done things differently - better - for our children. The guilt is then compounded when you have a chronic illness. My 3 eldest children had a fairly fit and able-bodied mum when they were small. My 7-year-old never has and never will. He doesn’t do half of the nice things his brothers did. Add MS to your dreadful year and it is no surprise that you feel so bad about things - especially your daughter. As far as she is concerned though, you are her mum and she loves you and needs you just as much as ever. Hang in there Belinda - hopefully 2013 will be a good year for you both, Teresa xx
Sending you huge ((((((((((((((HUGS)))))))))))))))) Belinda.
Hang in there. It’s been a rotten time for you but you and your daughter will get through this. It seems to me that the unhappiest people I’ve known are the (very few) who say they had a perfect childhood. I don’t know why that is, but maybe something to do with building character and gaining a good perspective on life.
I feel guilty all the time Belinda where my children are concerned so you are not alone here and i have had no-where near the problems you have had. You are doing really well and being a single parent must be hard without the ms and everything else you have had this year.
My current bout of guilt i am having is because my 8 year old cannot swim yet. Silly thing for me to worry about but i can’t help it.
I agree with Teresa here - my youngest has missed out more than my eldest. I feel guily about this also.
I know your daughter is the same age as mine and i know that can be difficult also as they can be very ungrateful and difficult in the teenage years.
You are doing so amazingly well in the circumstances and your daughter will probably do better than most where their parents do everything for them as she will grow up to be an independent young woman.
The most important thing you can give a child is love.
Belinda I think all parents feel guilt from time to time regardless of whether they have MS or not, and your daughter probably feels a little bit of guilt too I know mine does, she said I wouldn’'t have MS if she’d not been born! I wouldn’t be without either of my kids I might not have been able to do the fun things with them but I’ve always been there to encourage them & cheer them on and that’s meant a lot to them. Some parents couldn’t give a hoot about their kids, just you remember your a good mum and no one can ever take that from you and your love for her will always shine, I’m sure she dosen’t think any the less of you probably prouder than any other kid for the way you manage this horrible disease. Sounds like you have had more than your fair share of it this year and I too hope you have a better year next year. Sue xxxx Sending you cyber ((((((HUGS)))))) xxx
I think our limitations put us on the back foot all the time, and that is fertile ground for guilt. Even on a good day when I have got loads done by my modest standards, and managed to press on and really get somewhere…those ‘achievements’ are just so pathetic by a normal person’s standards that there is no one to tell! If I tell a normal person that I’ve had a great day because I’ve managed to do this and this and this, they will either look bemused and are clearly wondering what I did for the other seven hours, or they will nod and smile encouragingly in the way that people do to a slow-witted child who has finally learned to spell C-A-T. It’s so discouraging. I seem to have had so many people recently (Christmas, I suppose, and seeing people not often seen) cheerfully asking me what I have been getting up to and they’re just being friendly and nice and interested, but I’m then just floundering around, embarrassed, trying to thing of something decent to say. When I can’t, I just feel guilty and useless and stupid. It is so bad for morale.
Let me tell you, mothers and fathers alike feel guilt about something they cannot do, or cant bear the fact they cannot provide for their offspring without ms, so adding that, its a double whammy. One things for sure, children never notice what you cannot do and often help when they think they should because they love mummy or daddy or both. Ive found whilst my son was little all the children would help each other and their parents as they coped with their own special disabilities and without thought loved everyone regardless.
Guilt is a natural phenomena, we all feel it about something, its just preying on your mind at the moment. Live your life as only you can as an individual, mum and with ms and your children will love you regardless. Its love they want and thats all what life with a family is all about, feeling secure and loved and Im sure you give them that in bucket loads.
Im glad you can share your guilt with us, spread your worries and then notice how everyone can comiserise with you and fully understand, guilt is part of life, as is all the other traits, if we didnt feel guilt we could never forgive anyone anything.
Dear Belinda,“Enough already with the guilt”. Whay you are doing is fighting tooth and nail to care for the daughter you love, despite your problems.You haven’t given up on her.We don’t have to look very far to see parents who have given up with their offspring and everything else in their lives.They have made their own bad choices…You had no choice,but are still there for her
I bet that with every day that passes day she has more love and admiration for you. She will be becoming a better and more rounded person with you as a shining example.OK, you aren’t doing the things which other parents and children do,but you’ll be making up for this in other ways.
This time of year plays ‘tricks’ on the mind as there is a false version of what it should be about pushed onto us by the media and shopkeepers.Baubles to all of that.
I had a huge bout of guilt just before dx. I was working hard trying to help my daughter with the cost of her MA. I had a very bad relapse and the doctor diagnosed anxiety. I lost my job and became so ill that I couldn’t be left alone in the house and spent my days on a neighbour’s couch. After I was dx with MS I went through an emotional rollacoaster as you’d expect. Until I could offload the guilt i wasn’t able to be happy and enjoy my life. Guilt is destructive. I am much kinder to myself these days. Bringing children up is a hard job, very much harder when you have MS.
The dreadful pain from your shoulder injury is getting you down - l did similar about 6yrs ago and ended up having a rotor cuff repair etc. At the time l was trying to care for my OH - who had a brain tumour. Before he went into hospital l was trying to wash and dress him and help feed him etc. Then l had an almighty fall smashing into the gatepost with my shoulder. l had keyhole surgery and had to wear a sling affair for weeks afterwards - then lots of physio. lt took a long time - l couldn’t drive for several weeks but now it is much better -still causes me a bit of discomfort - but not like it was. With a bad shoulder - you just cannot get comfortable - sleep is nearly impossible. My OH went into hospital the same day that l went in for my shoulder op - and luckilly they kept him in for a couple of weeks.
l too have the guilt complex. My ms started when l was first pregnant with my daughter - now nearly 30yrs old. So she has grown up only knowing me as l am - and l do wish she had known what l was like pre ms. She grew up being very independant - and self sufficient. Thankfully, l managed to teach her to ride and we rode together for years. l have only stopped recently as my arthritic hip/knee make it impossible now. We still have her old pony Charlie - who is now 41yrs old.
Belinda - constant pain will drag you down - as soon as you get it repaired and recover you will look at life differently. l am now on the list for a total hip-replacement - not something l am looking forward to - but hopefully l will be virtually painfree in time.
My best wishes to you both - lets hope next year will be a good one - for us all.
Belinda, you are one of the bravest people I know. As Frances put it - the constant pain from shoulder injuries is just awful and it robs you of a lot. I have a feeling that all acute/chronic joint pain does the same.
Your daughter is very brave as well. I know she loves you to bits and after these last few weeks, is a bit scared. Who wouldn’t be?
I feel guilty too. There’s me, sitting at home (hurt my knee again) wanting to work, wondering what it’ll do to my MS fatigue, knowing that here, I’m the one who should be out there working as I speak the languages well. I’m scared of working.
Fatigue makes our worlds a bit smaller. We do less outside the house than we think we should.
Like Alison, I’d have trouble explaining what I’ve done with my day.
As with so many others, I feel guilty that I’m letting my grown up kids down and I know my parents wonder how they are going to manage without help.
I had to go and live somewhere 2 hours away from the UK (by plane) and I haven’t seen my parents since 2010 and my kids since 2011. I miss them like mad and I know that if I could just work and make some money that I’d see them more often. The rest of my house is essentially uninhabitable. I feel guilty and yet, know that I have to suppress this, or it would overwhelm me.
I’m going to see my kids and parents in January. I am really looking forward to that.
Guilt? We all feel it.
Belinda, you are so brave. I have massive respect for you and know that you are doing all you can for your daughter.
Dear Everybody,
I wish we still had the ability to reply to individuals as we could on the old Boards but a massive thank you to all of you for your replies and for sharing your own stories.
I think my shoulder pain is getting me down more than I realise and Francis, you are so right about not being able to get comfortable to sleep well.
And Steve, Christmas doesn’t help either, I am sure of it. All that manufactured cheeriness and the false portrayal of what an ideal family is suposed to look like just rubs salt in the wounds.
And Wendy, Sue and bren you are all right when you say that parenting and guilt go hand in hand. My son grew up in my pre-MS days and I still found plenty to feel guilty about with him!
Alison, you hit the nail on the head with your reply. I HATE being asked what I have been up to nowadays. Even my busiest days seem so pathetic compared to most people’s laziest days I try and dodge that question with the all encompassing, Oh you know, busy… YOU know how it is…" and hope they don’t press for details.
Thank you all again so much and talking of guilt I have to dash and get my daughter from a party or I’ll feel guilty for being late picking her up!
Dear Belinda,it’s looking like you’re getting back to your ‘abnormal normality’…Good.Our cheery Dickensian christmas illusion will be good for anybody who gets a canoe or hovercraft.The rest of us will be paddling and waiting for the next hosepipe ban.
Hoping things are better for you, and 'praps the distraction of the Happy Hols will serve you well.