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Are there any other MN members who are caring for their partner with young kids too? Feel a bit isolated and resentful with it all. Anyone else like me out there?
Hi Sandra, can't help personally, but I didn't want your post to go unanswered. There seems to be a few, I don't know if posting in Health may turn up some of them for you. Good luck.
My OH has MS and I have 3 kids 14, 5 and 4mths. If you want to chat I am here. I am very new to mumsnet so its going to take me a while to work out how it all works so be patient with me!
Hi sandra, I'm not anymore, as my dh is now post transplant, but did for a few years. its very isolating at times and it feels like you dont do anything else.
Hi chegirl and misdee, thanks for your messages. It's so good to hear from you. I have my ups and downs and so it will be nice to have some support. I am new to the list too and I think this is great.
My DH has has had CFS/ME for 15 years, I can't believe it really, it has been so long. We have a 4 year old and a 6 year old and helping with them seems to have made him worse as I he looks after them while I work. Weekends are the worst for me as I feel I have to do everything,
I feel positive today though, hope you both have a good day.
Hi again Sandra, Sorry for not getting back to you. Its been a bit of a difficult week. I think I know how you are feeling. It is hard to have so much responsiblity on your shoulders. It sounds like you feel guilty about your OH looking after the kids? I often feel like that as my OH gets very tired. I dont think its helpful for us to feel guilty though! If its too much for OH to look after them have you thought about childcare? As one of you is disabled you should still be eligible for the childcare element of your tax credits. (couples where only one works are not usually eligible). I dont work at the moment but when I do, I doubt that OH would look after babes full time. I think it would be too much for him. He works evenings, part time.
Hi Chegirl, thanks for posting. I've been really slack this week and haven't had time to log on to MN. It is a good idea about childcare. We are in a strange situation because we live in Spain. It's a long story but we ended up here because my OH wanted a change of scenery after being housebound for 2 or 3 years. I did a TEFL course and teach English here. He gets Incap. Benef. and we live off that and me teaching. I shouldn't feel guilty about him looking after the kids but I know he's good for nothing after a stint of looking after them and only manages to go out once a week if he's feeling OK.
I feel isolated because unless I meet someone in the same situation as me I don't feel anyone can really understand. the burden does get heavier though doesn't it? I feel like a single mum I really do. Today I went to a First Holy Communion Party (they are big on the Catholic stuff here) and it has just become so natural for me to go out on my own with the kids socially and I found myself stuck on a table of the non-pairs. Sometimes I find myself wondering how different my life would be with a normal husband and then of course I feel really guilty again! I hope I haven't put you off writing back but I do need a good moan.
Hello Sandra. I can relate to your situation to some extent. My dp is disabled and although he is brilliant and absolutely does his best, sometimes things are tough. I often have to do a lot of the really physical stuff and when he gets ill he copes with it by becoming very single-minded. When I was pregnant with ds2 we moved house and he got really ill. Believe me that was hard! Remember that your kids are young and that things will improve when they're able to do more things themselves. Until then...well keep going I suppose. It's the only way.
Sandra I do know how you feel. I remind myself that its the disability I hate/resent not my husband! Our whole life has to pretty much revolve around it. Not because my OH is selfish (far from it) but because the MS places limitations on what we can do. When it gets hard I try and think of the positives. My OH is around so much more than he used to be. He is GREAT at sitting around chillin with the kids whilst I dash about. We get FREE PARKING hurray. Also he cant run off with some young thing! I never think about the future. There is no point. He might stay the same for years or go downhill next week so what is the point of worrying.
I sometimes wish he wasnt as limited as he is but hey what can you do?
But the fact remains, however positive we are, our OHs are disabled and that brings a lot of challenges with it. The fact we are women means that there is little understanding of the burdens it places upon us. After all we are supposed to do all the cleaning, childcare, cooking, washing etc etc arnt we?! I dont work at the moment but I know when I do it will be hard.
Moan as much as you like girl!
Hi Cissy, I have just had a baby and being pregnant (and 40!) bought home to me how difficult things get. It felt quite scarey that we were both so limited in what we could do.
hello folks - nice to hear from other people in similar situations - my DH has a very aggressive form of MS - I can totally relate to feeling like a single parent - sometimes I get so sick of doing stuff on my own.
we have a 3.5yr old DS and I am currently 9 days overdue with DC2. DH has just had immune-suppresive treatment for his condition so we're going have to be very careful letting him spend any time on the labour ward when I (eventually) go in. Fortunately he has recovered quite well from the actual treatment but the condition itself still causes problems. I arranged an individual tour of the labour ward for us just so I could check out how wheelchair friendly it is and to make sure there's somewhere for DH to rest! wasn't that bothered about the facilities for me!
agree with you Che about not worrying about the future - yes there may be awful times ahead but why ruin today by worrying about it? I work 4 days a week which is hard but gets me out of the house. I make sure we use the DLA money for really useful stuff - like paying for the ironing to be done . other stuff like housework gets done when it has to be and not before. I also make sure I take advantage of people's offers of help - most are really happy to help out and if not I reckon they shouldn't have bothered offering in the first place!
Hi everyone, good luck Moomins on the delivery. I have to say when I had my daughter I was more worried about my OH passing out than about me, luckily after all the worrying everything went well.
Hi Cissy, thanks for posting. It has cheered me up knowing there are a few of us in similar situations.
Spent the day in the hospital today as my OH can't see out of his left eye. Totally unrelated to his ME but who knows really. Apparently he's got like a blister under this retina that is leaking fluid or something. It's bad news I think we're going to look on the internet and see what we can find out. We've got another appt. to see the specialist in a month and see if it clears up. Bugger, that's all I can say about it all.
Sandra - sorry to hear about your OH's eye - hope it clears up soon
do you ever wish that the NHS did a loyalty card with airmiles? could have had tons of glamourous holidays by now with the number of hospital visits we've made
I'm really glad to find this post. My DH has AS which really limits his mobility and he is constant pain. We have one DS who is nearly 2. Like chegirl I don't know what's coming next, he could be like this for years or get loads worse tomorrow.
I think its the uncertainty that gets me. One day he is great, chatty, doing stuff with DS, cooking and the next day he is practically catatonic and sleeps all day.
I find it really hard not to blame him. Logically I don't but sometimes it's hard to remember that when I get home from work and have to do the housework and bedtime and then more work and then the ironing and then get up at 5.30am (DS is an early riser!).
Oh, and I really do wish the NHS did a loyalty card. What is it with eyes? We've been to eye casualty 5 times in the last three weeks.
Doing chores really are a pain aren't they? I a m in a constant state of chaos and it is frustrating. I look at my friends who have more time than me and I feel a bit envious of them really. Now my house needs some DIYing done and I just don't know when I'll have the time. I feel permanently guilty that I'm not playing more with my kids, I don't seem to do anything with them anymore. I always feel more down at the weekend when I just can't do it all and the kids are wanting attention.
My DH has had severe rheumatoid arthritis for nearly 20 years. He is incredibly brave, struggled to work for many years and loves us all dearly - when I read other threads on the board I know how much that means. However, I find the constant strain of giving emotional and physical support very difficult at times, especially when the children were younger and had their own needs - I think the hardest is feeling that I am responsible for everything! Oh yes, and how can I moan about anything in comparision to DH and the constant pain, loss of nearly everything that he enjoys doing and the effects on an intelligent, talented man of being unable to use his talents and virtually housebound.
Some people are massively insensitive about RA 'oh yes, I have that in my finger', but I am actually better with that as I just want to clout them - the knowledgable and sympathetic can make me feel very sorry for myself and self pity is pretty unhelpful.
Things are much easier now the children are older and don't need/ want so much attention, but I too will join the 'casualty club card' scheme. But how I would like us to be 'normal'- go for walks on a sunny day, see my DH go off to work every morning looking forward to a challenge, turning bloody Ebay off the computer....
Apollinare - i know what you mean - when we tell them that DH has MS - they always say "my auntie's neighbour's cousin's best friend has MS and they are fine/totally immobile" as though that sort of comment is helpful!
on a nice positive note I've not been on for a while as had a baby on may 7th!! piccy of the little lad on my profile to cheer everyone up (well I think he's gorgeous anyway!)
hardwork though doing all the nightfeeds etc on my own - DH was fortunately well enough to actually be at the birth which was fantastic for us all
Contragulations moominsmummy, DS2 is really beautiful.
I'm glad your DH could be at the birth. My DH missed the first one and made it to the second one and it was fantastic too.
I have to say I was more worried he was going to fall over, as he does this if he has to stand up for a long time, but someone found him a chair which helped.
I hope your are coping alright with lack of sleep etc. If you need a moan we'll be here
Thank you guys, for just being here. I've just sat down at the computer after putting a screaming DS to bed and had a little cry. My DH has been asleep for 16 hours out of the last 24, I'm so tired I nearly fell asleep at my desk and its not like I can have a lie in at the weekend.
Sometimes life is so damm hard. And so bloody unfair. This isn't what any of us signed up for.
But thank you all for reminding me that I'm not alone and as you say Apollinare "Oh yes, and how can I moan about anything in comparision to DH and the constant pain, loss of nearly everything that he enjoys doing and the effects on an intelligent, talented man of being unable to use his talents and virtually housebound." Quite.
Am off to look at moominsmummy's new baby and cheer myself up. And she can tell us about sleep deprivation!
P.S. Just as I was about to post this my DH came in and gave me a great big hug. It all seems a little bit better now.
Many,many congratulations MM on your beautiful baby. I just love that bit when they lie on your chest, cosy and content, and go to sleep.......
Having been thinking about the sleep deprivation bit - I think that the most useful skill that I have learnt is not the mega -crypton and terrifying glare, to be used on special occasions only, or even the ability to say (out loud) 'OK, maybe I'm selfish old bag, but now I'd like to be ill/ knackered for a while', but the ability to catnap for 10/15 minutes and wake up a million times more refreshed. It takes a bit of practice, but I worked hard at it (LOL) and can now slip under the covers for a quick nap at anytime - 'Mummy's keeping a little mediterranean time, you go and see daddy!'
Are we ready to face the weekend? I have tried to be a bit organised and do some cleaning up today which hopefully leaves me more time with DS and DD. It's not that I've neglected them but I just seem to be at work all the time or cleaning etc. My DH has still got something wrong with his eye and though the specialist said it should clear up it hasn't and is getting him down though he isn't complaining. He hasn't been out for 2 weeks as he's extra tired with it all. I do feel so bad that he can't do normal things like seeing friends or going out for a beer.
On a positive note though, I've started going swimming and this is really going me good and hopefully will give me more energy too.
Hi Amazing, welcome to the list. Don't do any more lurking! I am sorry to hear about your diagnosis. You can let off a bit of steam on here too you know.
You are amazing - I am sorry to hear about yor diagnosis, but glad to read what you say about your husband and that you can rely on each other for mutual support - five minutes on the 'relationship' threads is enough to start me counting my blessings. Are you posting about this on any other threads?
We are 19 years down the line, so tell you a bit of what I know - which is not that much!
The effects of the new anti TNF drugs are awesome - my DH started them late last year so far, so good - he is slowly gettng his life back together. There is suddenly so much light at the end of that tunnel for RA sufferers.
Watch out for cooked cheese - not trivial, 2 slices of cheese on toast can land my DH in hospital and quite a few other sufferers say the same. Other things can cause a reaction; red wine, bad weather, change of season, but nothing like cooked cheese.
Ask your consultant millions of questions about the treatment you are being given, not just the disease. The anti TNFs are v.expensive, some hospitals are giving them at the onset of illness, others will just dosh out methotrexate (V.Cheap) for ever, assume that the health authority will start objecting when Anti TNF is prescribed.(think Northern Rock bailout here)
It is good if your husband is pretty arsy - I am, so will be very persistant if necessary.MY DH often isnt up to a ruck.
The old cliches are very true - as one door opens etc. Your life will, of necessity, change, but not stop. Our children have def. benefitted from having their Dad around at home, are much more empathetic towards chronic illness. Even the one with the sensitivity and unselfishness of a plank.
If your consultant is crap, unhelpful etc., change hospitals. My DH is now under the Orthopaedic Hospital in Oswestry, has been for about 10 years, and they are marvellous.
My DH cares for me, 3 non-disabled kids and number 4 who has severe cerebral palsy (she's 4) He had to give up work (I have MS) and I know he felt a bit resentful. Its a hard situation for all.
Amazing - know what you mean. I hate having to ask my husband to help me given he is a full time carer for dd too but he says he'd rather put the pasta on for me that mop it up after I've dropped everything
It makes me feel quite humble reading your posts - to see things from 'the other side' - it is easy (and easier) to get caught up in the busyness and forget the other persons feelings. I would also hate having to ask for help, though from my perspective, I am OK doing the stuff as long as know that it is appreciated. Not effusive thanks for every time I pick up a spoon, just a general 'I feel loved and appreciated' - does that make any sense?
yup, know what you mean. Its hard going from being independant (I used to cycle everywhere) to having to ask for even simple tasks to be done for me and I seem to manage to remember what I want as DH's bum hits the seat so he sighs a bit. But it has given me a tiny insight into what life will be like for dd. She has severe quadraplegic cerebral palsy and has no movement in any limb, cant sit, reach, hold her head up etc and will always be totally dependant. Thats really crap I think its ok for the non-disabled partner to feel a bit fed up and resentful, after all, its not what anyone wanted. Get respite help if you can to get a break and get some 'non-caring' time. I feel very fustrated that I cant care for dd myself. She's my baby, I should do it. I managed 2 years then had to ask DH to give up work as she was too heavy for me to lift. I'm toying with the idea of battling the SS for a PA for me but it would be yet another person in our house and if I was watcing telly I'd feel a bit foolish having one there as they'd be sat around awaiting my whim.
Well Apolli I think the UK is getting all the good weather this week for a change! Compared to last year, it is cold, wet and windy but promises this week of brightening up.
Riven, you have it hard and the changes you have had to make are incredible. I'm sorry about your daughter's condition. Words don't really seem adequate.
I am busy getting involved in my DH's end of year concert(school finishes in June here) which is fun. He is in first year of primary school and they end of year party is supposed to be good. Just as an indication of how skewy the timetable is over here, on the programme they are due to do their number at 10.30pm and they are only 6! The "evening" is just 2 or 3 hours later over here and people have their tea at 9.30 and kids go to bed on a school night at 10 or 10.30. I stick to UK timetable as much as I can in this area.
DH's eye still bad, still can't see out of the left one and headaches are troubling him too. We're hanging on in for our hospital appointment next week.
Moomins I hope you are doing Ok with baby and getting some rest.
You have my sympathy. My dh has terminal cancer, up to the last few months he hasn't been so bad, but now he is restricted to a wheelchair outside the house and needs oxygen. We've just had a holiday, 5 days away, and while if was fun in part it was such hard work trying to entertain the kids, while dh needed to rest, and how to find things that let the kids run off steam, that dh could still 'manage'. and I feel that he is too ill for me to 'leave' for any lenght of time. He is also waking up to 10 times a night, so I'm shattered
dh is very 'brave' about the whol;e thing, which in some ways makes me feel even more guilty.
Martianbishop - what a difficult situation you must be in. I found it impossible when the kids were young trying even to keep them quiet while DH slept, never mind entertained. We used to go to holiday cottages, but they are usually so awful when it rains, with a knackered TV and jigsaws with a picture of a corgi. I used to get back thinking why did we bother.
How old are your children? Very young? I will be thinking of you, even if I can't do anything practical. Have just thought of this - we have rucks of photos albums which the kids love to look at now. They have really fond memories of the times when we went to the seaside/ Lakes - so thats probably why I bothered. Hope you manage a siesta today.
Am I too late to join this thread? My DH was diagnosed with cancer of the oesophagus and stomach, with secondary cancer of the liver and lymph glands last February. He spend much of last year having chemo and radiotherapy and is back on chemo again (his third and final lot). He won't ever get better but we're trying to buy him as much time as possible and give him the best quality of life we can. At the moment, apart from problems eating and fatigue, he can lead a relatively normal life, even working some of the time, but we do have restrictions. What energy he does have is used up keeping up his job (his choice) so he can't do anything at home and going out is difficult. He has to be driven everywhere. I have to prepare special food for him. The hardest part is keeping the DSs (aged 4 and 5) quiet when DH needs rest. We end up going out a lot! I do sometimes get resentful but find it hard to talk about. I'm not the one with terminal cancer so I feel like I shouldn't complain. Hopefully, people on this thread might understand!
We had some nice time away, but I have come back more tired than I went. Dh is no longer well enough to drive himself and is essentially house bound unless I take him out.
And we all want to go out, but at the same time I have to sort the house/garden/washing/ferrying kids to stuff and work part time.
So while I fully understand that he needs to get out, I also need time to do the trivial stuff. And because he is no longer fit enough to help, it all defaults to me. Add to that the fact that he doesn't sleep well, and therefore neither do I and I look like an elderly zombie
We have tickets for Liverpool Sound tomorrow and because I'm a cantankerous selfish old bag have said I'm NOT leaving before the end, even if ambulances are involved!
Not once, in all the years that DH has been ill, and things have been really tricky at times, have I ever been offered help as a 'carer', nor has the GP shown the slightest concern with how I have coped - and my situation is nowhere near as bad as others of you on this thread. Our children are older teenagers now, but with hindsight I wish I'd asked family and friends for more help when things were difficult - as Moominsmummy says, they should'nt offer if they don't mean it!
Hello everyone. I can see this thread has been rattling along nicely without me. I hope everyone is doing ok. My OH is having a bit of a flare at the mo. Think its the hot weather and the fact tiny one has decided to wake up a lot at night! I feel so guilty that I havent managed to get everyone up and ready for school without OH's help yet. The plan was to be able to do that by now and let him sleep. Tiny one is nearly 6 mths and I still need OH to help me sort out middle boy. He has severe eczema and needs skin care in the morning. I feel bad. I dont work anymore, gave up when beautiful girl got ill 4 years ago. Havent made it back yet. She died 2 years ago and I am just not ready. But if I am at home I should be able to do a good job! I need to get up at 7am. I did it for years and earlier than that so why cant I get my arse in gear!!
Any suggestions would be good.
To all you guys dealing with chemo and other cancer stuff. Sending my love to you and some understanding too. x
Take care all. Oh isnt it carers week or something like that?
I really can't believe I'm about to type this in a PUBLIC forum - thank God its anonymous - but have a look at Flylady.com. I only do the routines and get the Emails, thats taken me two years, but that is enough to keep the home fires burning fairly calmly.
Sorry things are difficult at the moment, Chegirl, hot weather and eczema is awful. But just because you are at home doesnt mean you are reponsible for everything- nobody can function on broken nights. Am also really sorry to read about your beautiful girl.
Can't believe I've just found this thread. Hope you don't mind me butting in. My DH has MS and we have a 3 yr old DD and I'm 16 weeks pregnant (after 2 m/cs) with number 2. Thing is, it took a lot for us to decide to have another (besides his MS, DD was a traumatic birth w complications) but both very happy about the pg.
Anyway - DH has a cold at the moment and his symptoms always get worse when that happens - and tonight he just collapsed in the bathroom and couldn't walk . He had to pee into a jug . I've helped him back to bed and he's now trying to sleep but I'm really panicking .
How did you all cope when your babies were small? DD was colicky and I had to do it all pretty much single-handedly and my mental health wasn't the best after eight months of almost no sleep. (We have no family locally to help.) I'm terrified now that we've made a huge mistake but he hadn't had a severe relapse in ages - or so he said . I was thinking of getting a night nanny for one night a week - for me to get some sleep at least. Would this work?
He's also being assessed by his work's occupational health - he was put on a warning earlier this year for poor performance which they're trying to connect to his MS. He had union representation, which meant they backed off a bit, but the OH assessment is this coming week - and if he can't walk at all I don't think it's going to be good. So I'm scared he will lose his job as well... I have kept up with my career full-time thus far because we've anticipated he might have to give up work or go part-time at some point, but thought it would be a few years down the line...
Sorry - just totally splurging everything out here but I could do with some encouragement.
P.S. I can SO identify with all the secret feelings of resentment mentioned on this thread - and then feeling guilty because it's not DH's fault he has MS and really it must be worse for him. But sometimes I'm tired - and yes, the weekends are the worst. At least at work I get to take a break! So, so glad I've found this thread - although I wish there weren't so many of us on it, IYSWIM.
a night sitter would be good, you. Need to be able to carry on it is hard coping with being responsible for everyone and everything and no doubt you are doing stuff that your DH used to be able to do, I know I found it a huge adjustment, I didnt know that lightbulbs needed changing cos it was never my job.
My DH has never been much use with practical stuff tbh, onlyjoking - I've always done the DIY and house maintenance etc as well as everything else. Just can't do 24-hour baby shifts as well!!!
I'll just have to leave the practical stuff for a few months, get a sitter so I at least get some sleep, and grin and bear it...
it is important to get some sleep thou just to be able to carry on, we ended up with 24 hour carers for my DH, sadly he died on monday. it is very draining to be a carer, you have to look after yourself to be able to look after everyone else.
Verso, would it work getting a babysitter in the afternoons? The long school holidays are about to start and many yr 11 upwards have finished, just going back for exams. I know plenty of teenagers would love a job for a few hours a day.(In fact I could send you one now!) Then you could get a couple of hours sleep in the afternoon, better than nothing, just dont catch up on the chores, and get some babysitters sussed out for when your baby is born. As OJ says, you have to look after yourself before you can look after the others. I was always knackered when pregnant, especially with a highly mobile 3 year old and ill husband.Just the constant anxiety is wearing.
OJ I am so sorry to hear about your DH. I came back to see if there were any messages and saw yours. I feel quite humbled now. Hope someone is looking after YOU.
Apollinaire - I'm the main breadwinner so until I go on maternity leave I'm at work. (I sometimes find being at work is quite restful in comparison to the weekends!) Thanks for the babysitting suggestion though.
is this thread still active? dh just been diagnosed with ms have 4yr old dd and 1yr old dd.have been having a hard time coming to terms with diagnosis but helps to know others out there.
rubyroo - sorry to hear about the diagnosis Have you been in touch with the MS society and your local branch of Carers to find out how they can help you?
Would go along with Tribpot, especially re carers, though never joined myself! just moaned to a few people and felt sorry for myself. Had great difficulty when H first ill admitting to anybody that I couldnt cope and everything wasnt just MARVELLOUS, but actully was a bit tricky at times. In fact, I can be a bit like that now, then feel like a martyr when nobody offers any help.
Have learnt one thing - the fear of the future was far greater than the reality.
hello all have not been on for a while as my gorgeous little one has been almost constantly feeding for the first two months! he is nearly nine weeks now and is almost 15lb!
<proud mummy emoticon>
rubyroo - so sorry to hear about the diagnosis; life adapts and things will calm down a bit; i was in tears so much of the time when DH got diagnosed but it's easier now (emotionally). I now realise that a diagnosis is often like a bereavement because you have suddenly lost that perfect family life that you were expecting - there is grieving to go through - in addition to the practical adjustments.
verso - it's spooky reading your thread as we are so similar! I also do most of the DIY in this house. our 2nd child is now here and I am totally sleep deprived but doing ok. it is manageable with two but definitely get all the help you can to keep you sane. no matter how poorly DH is feeling he can often keep an eye on the baby if I lie them next to each other. is your OH getting DLA? we use some of ours to pay for the ironing to be done - and for ready meals on nights when i don't have the time nor energy to cook
hope the work thing ends up ok - my DH is also having problems - they are trying to say he's not medically fit to do his job and get him posted into a different one
Hi there, moominsmummy! >waves< How spooky indeed. Yes, DH gets DLA - he uses half of it for his Motability car and the rest for day-to-day expenses. It does mean we can afford a cleaner once a week, which has been a sanity saver, definitely. I totally know what you mean about the sense of bereavement - but it's difficult to recognise it at the time. You have pinpointed it exactly.
So how do you manage with two? I had another wobble today about it (I'm part way through the 2nd trimester but am still fatigued and got a bit weepy and emotional earlier about how we are going to cope!) Any other tips?
verso - just to let you know that I managed to get the sure start maternity grant of £500. we got it cos we get the disability element of working tax credits (although it's reduced to zero due to income).. wasn't sure if we would get it but filled in the forms and heard today that we are getting it! woo hoo! perhaps you could use it to pay for additional help around the home?
My goodness, I am so glad to have found this bit of Mumsnet! Hope you don't mind me joining you.
My DH had is disabled following a massive stroke in June last year at age 38. I was 20 weeks pg the day of his stroke and life has changed beyond recognition for us. He has no use of his right arm (and was right-handed), and had no speech or movement in his RH side following the stroke. He manages to walk moving his leg from the hip and is very very slowly learning to talk again. He also has post-stroke epilepsy.
Our DS is now 9 months old and I totally relate to all your comments about feeling like a single mum! I've gone back to work 4 days a week which I find a break actually! I really love being there, it feels like my only 'me' time. My DH at first took no real interest in our DS, but now he has got a bit more interactive absolutely adores him and I feel bad that I can't give him more time to hold him. Also feel torn between all the things I'd love to help DH with, like speech exercises and taking him out places, and needing to devote lots of time to DS.
Also, I find it so difficult when DS is ill, it is SO tiring and I feel my DH is not much support when I am worrying about it.
Anyhow, bit long, sorry - hope you all have a good weekend!
bondgirl77 thank you for your post. I am feeling very sorry for myself today, have horrible cold/cough and feel crap.
My dh is disabled following a m/cycle accident 15 years ago, and I really struggle to get the balance right between feeling sorry for him and trying to do all I can to care for him (inevitably at the detriment of my own health/welfare) and feeling sorry for myself sometimes that I have ended up in this role of 'carer' (I was only 23 at the time am 38 now and feel that it has taken over my life, for obvious reasons). Most of the time I consider it my privlidge to care for him but sometimes i feel very resentful, and today was one of those days. It's very hard to have feelings like that and yet not be able to express them.
Dh's pain levels are very affected by weather and coz we're having a crap summer he has been really bad. Today he was in a foul mood when he woke up (not uncommon coz his pain killers wear off when he's asleep) had a bath and then went back to bed. I had had a bad night myself and felt crap too, and underneath the smiles, helping dh with bath and breakfast, and the singing Bob the Builder and playing with my beautiful ds I was boiling with anger and resentment that never not even when i was pg, is my health more important than his. I never get to just give up on the day and go back to bed til I feel better. It's nice to have somewhere to be able to admit feeling like that; but your post also brought home to me how much worse things could be, and how much harder some people have it. I can really relate to the single parent thing, and being torn between caring for dh and caring for ds. It's hard isn't it? Anyway, will go get ds up now with suitable smile on my face, having been able to offload all of this.
Hi bondgirl - must be very hard for you if you have to assist your DH with even cuddling your DS - as if parenthood wasn't enough of a guilt trip anyway - you must feel really torn alot of the time.
hairybikerm - totally relate to the "his health is more important than yours" thing. I have learnt that sometimes I have to not mollycoddle DH and tell him that I am feeling fed up, that I appreciate he feels crap/tired/depressed/whatever but so do I and I still manage to get the washing/cooking/finances etc done. I have found that by letting DH sit and feel sorry for himself and do nothing is not very helpful for either of us. I carry on with life even when poorly so have told him that he needs to make an effort occasionally too - there is always something he can do - even if it's just thinking tasks like planning the week's menu or thinking up ideas for kids birthdays.
by the way I would recommend a fab book called "the selfish pigs guide to caring" - I found it really useful
wish we could all meet up with each other for big supportive group hug!!
any updates from anyone? how's the pg going verso?when are you due? Mummydoit - how is your DH doing?
Hi all, just wanted to join in. DH has (probably) got fibromyalgia, plus sleep apnoea plus diabetes (no dx on that yet) plus hypogonadism plus something about raised iron levels whose name I've forgotten (no point given no-one gives a toss about it anyway).
He uses a wheelchair outside the house, and cares for ds (3) part-time. That's about it, really. He has zero quality of life (and I don't feel much better off myself to be quite honest). I work full-time in a stressful job and I think I'm struggling to reach the zen-like calm some of you old-timers (I mean that in the politest possible way!) have reached; dh have been married for nearly 4 years.
Spot on about the frequent flier miles, we should all have gold cards that give us access to the first class lounges in the hospitals
I really feel like dh has just given up. He's never so much as bought me a birthday card. He has no contact with anyone other than me, ds, my family and his mum. I'm so tired of having to do everything, I guess.
The isolation is terrible, isn't it? Basically in the same way that no non-parent can understand what it's like to be a parent, no non-carer can understand what a toll that takes. Put the two together and that's where we all are. We moved north just after ds was born because I thought I'd find things easier nearer to friends. Friends who mostly had kids ds' age. Friends who I'd known for years. Nope. None of them could be arsed to make the effort, even to see me let alone ask 'wow, things must be rough for you, is there anything I can do to help?'. So that's worked out nicely - not.
Will have a look for the book you mention though moomin!
tribpot - welcome. sorry to hear that DH has not even bought you a birthday card - time to have a stern word I think (i.e. he does still have some choices in life and he'd better start making some nice gestures towards you or else! )
we also moved so more friends could help out - we have been fortunate that one family are helping loads and are fab but the others? nope. nowhere to be seen - despite lots of dropping hints.
whereabouts does everyone live? surely some of us must be near enough each other to meet up for a coffee and mutualmoan chat
moomin - it's quite incredible isn't it? I think of my childfree friends with their lovely weekends to do whatever the hell they like and none of them has ever said "could we take dh and ds out for an hour to give you some peace and quiet?"
Having said that, I did a fantastic course for carers last year and the 'trainer' said "it is their life and their choice and you have to respect their choice". For example, why haven't I asked them for help instead of just resenting all their free time? So perhaps I should.
Communications with dh have broken down to the point where I can't even be arsed pointing out that I resent the fact I get zero attention. And that can't be good, can it?
moomin I used to live in Sheffield - ie not that far from Glossop - but that was about 20 years ago. Would have been able to meet up! I live in London now though - or just outside. You all seem to be back up North .
The pregnancy is going really well, thanks. I'm 24 weeks and starting to feel a bit more human again - though sometimes I overdo it because I'm feeling energetic and get worn out. bondgirl I could relate to your comment about work feeling like a break. I totally identify with that - it's definitely 'me' time. (I'm on 'holiday' at the moment and am finding it much more tiring than being at the office!)
tribpot I'm so sorry to hear your DH didn't even get you a birthday card and that you're not able to get through to him . Sounds as though he has depression... he needs to take some responsibility for how his behaviour is affecting you though, regardless of how down he might be feeling. (Much easier said than done, I know.)
hi again thank you all for your posts ages ago when i first posted about dh and ms diagnosis i haven't had any internet access since as we had embarked on a massive renovation project on our house and moved out with two kids before we had diagnosis and by the time we realised what was wrong with dh half the house was demolished!!! anyway 4 months later we are home yeah!!! and i've had to move us all back in again! am feeling pretty p**d off with moving boxes on my own and furniture beds wardrobes....etc but am no longer feeling like the world has ended because dh has ms which is progress! i have started taking people up on their offers of help which i've never done before and am going to be more upfront about asking for help too. but lots of people/friends seem to have dumped me already since we found out about his illness. anyone else had this?? its pretty upsetting really but maybe i'm just paranoid?? my youngest dd starting walking this week!!
Yes people slithered away when DH became ill, friends he had spend years caving with and thought he could trust with his life. Not that many friends offered to help, though I am possibly a bit responsible there. But others, often ones we didnt know that well, have become good friends and shining lights. Going out with a group of female friends, even once a term, keeps me sane - This is non negotiable. Though have noticed more and more becomes Non Negotiable as I have got older and arsier! Is it possible Tribpot for you and DH to keep some sort of social life going - anything to make life seema bit more normal for both of you?
Ruby, are you all settled now? I was in a very similar position to you a couple of years ago. Things are a lot easier since we finished work on the house.
Well we have just done the 2am A&E run - but to an Italian hospital. They were great, and thank God for the E111. DH had been mucking around with his analgesics and managed to overdose - he was navy with revolving eyes when we got there. Am knackered and somewhat pissed off with him!
hey apollinare hope you've had a quieter couple of days! that sounds a bit of a mare
cissycharlton since we moved back home i've felt a lot calmer despite the chaos around me!! the friends thing i feel worse for him really cause it seems to be his friends that are nowhere to be seen really although its also some of my mummy friends too.
we are off to centreparcs tommorrow yippee!! and the ms nurse came this week to talk him through the betainterferon and injections n stuff so at least things seem to be getting sorted. i know its forecast raining all week but i don't care am going to the spa defintely!!!!
apollinare - what a nightmare - hope all is sorted. Last time we did a 1am A&E run (suspected meningitis following chemo - scared? us? just a bit!) I got zapped by a speed camera on the way home and got 3 points and a £60 fine. FFS!!!!!!
on a positive note though - DH did not have meningitis - just mastoiditis (which they eventually confirmed after 7 failed attempts at a LP- sigh)
All Ok now and back home, but am definitley suspicious of morphine patches! And bloody speed cameras, one got me just before we went away. A week in a spa sounds idyllic.
DH was distraught when he came round, really distresed at finding himself in hospital AGAIN. The Italian doctor told him, 'this is not a deterioration or step backwards, just an episode and tomorrow you will go home and your life will continue as before. Chronic illnesses are so difficult for everyone to cope with'. Putting things into perspective was amazingly helpful for him. I think that maybe there is an general assumption that a chronic illness is a long -term background condition that continues at an even keel and we can all learn to adapt. The reality came as a shock, that with illnesses such as MS, RA and other conditions we all know on here, that actually it is not a background inconvenience, but a lurching from one crisis to the next, with hopefully a lull in the middle!....Lets hear it for the lulls...
rubyroo which Center Parcs did you go to? We went to Longleat for the first time ever. Think we'll try to go again next year (will have to start saving now) and will go for an adapted villa.
apollinaire that sounds terrifying! Glad you're all ok now.
Gosh haven't found much time for posting since my initial one I now realise about a month ago!
Totally relate to the friends where have they gone comment, I am TOTALLY crap at asking for help though and try and do it all myself. Had a bit of couselling last year which was no use at all and one session where she suggested I was a bit of a control freak. I'm of the mind where 'if you want something doing, ask a busy person. And I am certainly that! I have a strange sense of satisfaction if everything goes well in the day - DS off for naps at right time, shopping done, meals made etc. I'm not that great at being idle, god knows what I used to do with my time before mum/carer!
moomin I am in SW London at the moment about to try and move just north of London to the town where my parents live. I have found that family are the only ones who have remained steadfast and my parents can help a bit with childcare in the week and at weekends for us to maybe go out occasionally for a meal or to the cinema or something.
tribpot - isolation, yes! I feel so lonely sometimes, esp when DS is ill as my DH is not that interested/involved when it comes to these things. After DS's latest plunge into the bookcase cutting his nose whilst learning to stand up I was so worried and would have welcomed another opinion on whether to take him to docs/A+E there was just no response from DH who sort of shrugged. Which was really useful!!
rubyroo how on earth did you cope with moving all that stuff yourself?? I am considering getting a company that comes and packs up all our stuff and unpacks it at the other end as we have over 3000 books in our flat and it would be a total nightmare to do. Plus DH is really bad at getting through narrow spaces so I don't want a load of boxes around for weeks on end.
I apologise if this is a bit of a morbid subject but has anyone made arrangements for the children or your DP if something should happen to you? I am just so conscious that if I were not around then there is no way that DH could cope on his own - he has no family to speak of, we have only friends to call on or my parents who live 3 hours away and although spritely are in their 70's. It has been worrying me alot about what would happen..... I wouldn't want the kids taken away from DH (or for them to end up being full time carers)
MM,I have been thinking about the same thing, it is an awful thought isn't it? I recently set up a life insurance policy, but it's only money. I have been meaning to make a will too. I would probably nominate my parents as guardians for our DS although I hate to think of where my DH might end up living, his options would probably be with his ageing mother who already cares for his stepfather who has dementia, or with his sister with whom he has a rather love/hate relationship. I also recently had a vivid dream where I just collapsed suddenly, and in the morning I wrote an emergency list of what DH should do if I suddenly zonked out as he did with his stroke. I'd be interested to know if anyone else has thought about arrangements too!
I got really obsessive about this when the DCs were very young. In the end made a will specifying what would happen to them if anything happened to me, and if anything happened to both of us. Wasnt a very satisfactory solution, but at least I slept better! Really glad Ive managed to limp on though. I can't rely on family, but named two good friends as guardians, had to put in a codicil when one split up with husband and moved in with nasty -tempered moron (he speaks very highly about me as well).
