Hi everyone, hope everyone is in good spirits. Since my daughters diagnosis and terrible time with very active rrms and now being probably taken off the Rebif and starting Tysabri my family has fallen apart. My oldest daughter (22) has today been signed off work as she does not seem to be coping with her sisters illness. Since Rachael’s diagnosis we have seen very little of her, does not come home, sleeps elsewhere and avoids Rachael at all costs. She says she cannot be in her company as she just wants to cry and she knows this is not good for Rachael but she does not get that Rachael needs her and needs to see someone other than me and her step dad, neurologist and ms nurse. My husband was signed off his work for 3 weeks yesterday and put on mild anti depressents. He does not feel he is coping and has been overcome with emotion since Rachael’s diagnosis. He feels he is letting me down by not coping which I think has added more stress. I am still working (I only work 9 hours a week) and just want to sit and cry all the time but feel I have to keep a stiff upper lip and a smile on my face as Rachael does not need to see me crumble, she needs me to cope. I want to run away. What do I do? How do I keep my family together when everyone is falling apart? Linda x
i think you already know what you should do.
it doesnt seem fair that you’re the only one in your family to keep strong but you know you need to keep on being strong for rachael’s sake.
her sister needs space to get her head together and i hope she does that soon.
your husband might be feeling that he ought to fix it and, knowing that he can’t, feels like a failure.
my family, dad and sisters, had a dreadful falling out 2 years ago. i felt that i had to keep pouring oil on the troubled waters.
sisters still don’t speak to each other but we all keep in touch with dad.
so bless you linda, stay strong
love carole x
Oh Linda, that sounds terrible. As if you haven’t been going through enough You need to get your support and strength from somewhere so you are strong for Rachael. The last thing Rachael needs is for you to fall apart eh?
Hopefully your other daughter and hubby will feel better once they have got their heads around Rachael’s diagnosis. Everybody acts differently I suppose. I really hope they feel stronger soon then they will be able to help you and Rachael.
Like Carole says. Stay strong and if need be chat with your GP I reckon.
Hi guys, thanks for replying. A few folk have said I need to speak to GP but I just can’t. I can’t bring myself to say I am not coping as I have no option other than to cope. I can’t too be signed off work or given drugs, it would be too much if we all went down that road. Linda x
You are coping as well as you can and all things considered you are coping very well. Going to see your GP is not a admission of failure - there is nothing wrong in saying you need help. And if you don’t agree with your doctors opinion that you need drugs or signed off work you can ignore it and find yourself another doctor who will listen to what YOU need.
And you do have needs too hun. You would not be the loving caring mum we all know you are if you didn’t find this all hard to cope with.
Speak to some-one Linda - even if it just to get things off your chest cause you are not alone - just reach out for the help you deserve.
Take care hun. Lots of hugs and my prayers too
Before I was diagnoised with ms my son spent years with a life threating illness, I eventually got a counselor for 1 hr a week, I just talked the whole time and got everything off my chest. We all deal with things differently and my husband was to close to me and our son to hear all my fears as he has his own to deal with. It massively helped me not for adcice as there was nothing that could change the situation but to offload. Maybe think about this as I could only be truthful and open to a stranger. Sending love xx zoe
It is really tough for you but you do need to look after yourself. I know you said counselling wasn’t for you and totally get that. Do you have a friend that you can spend the evening with and off load to them. Is taking drugs a real problem if they help, you might be surprised. Your hubby and other daughter have to come to terms with all this change. Hopefully your hubby will start to feel more in control of his feelings and help you out. Big hugs Barney
Hi Linda First I just want to say that my heart goes out to you and your family - I can’t imagine what you must all be going through. There’s some wise advice in the replies given to you. You’ve been amazingly strong so far and had to face near enough every parent’s worst nightmare. From what you say you’ve done this by being stoic and keeping ‘a stiff upper lip and smile’ which must be incredibly hard to do. I wonder if Rachel’s sister sees the way you are coping and feels she’s letting you & Rachel down by not being able to contain her emotions? And maybe your husband too? You need some support, help and a release. This isn’t being unable to cope; it’s a way of getting much needed support and help in order to make sure you continue to be a big tower of strength to your family. It’s no admission of failure and certainly not something you should feel guilty about. I send you my best wishes Jane
Linda, you coping so well so give yourself a break, you can’t let MS wring the life out of you so please do go and see a doctor. If you take care of yourself properly and get decent sleep etc. you will be the kind of support you want to be for Rachel.
Your husband sounds like he’s going through the same thing as my hubby since I was diagnosed. I think they feel like they’ve failed because they can’t fix it all. I think Rachel’s sister just needs space too, apart from anything else, she might be shutting herself off to give you adequate time/energy for Rachel.
Try to live your life and maybe do some family things - like warn them they all need to be around for the roast you’re making on Sunday, that kind of thing. It’s really difficult to remember normal when MS sticks it’s nose in isn’t it! Same with your other daughter, a trip somewhere you usually went together or ask her to go to a shop as you need advice in picking something for Rachel
Maybe get a little DIY project for Dad to do, nothing major just something you/Rachel would find really helpful? Even it’s only in a small way, him being needed to do something would show him how much you need him AND he can make a positive contribution. My husband had a tidy under the stairs so my sticks are lined up now and easier to reach
You will find a normality again, it might just be a bit different to the ‘normal’ you used to have
That obviously sounds so tough for you all. However I’m not convinced that putting a stiff upper lip on all the time is really the best way to cope. You’re feeling strong emotions, and suppressing them won’t help. You’re carrying a massive weight round with you, and trying to deny them won’t make them go away. They’ll leak out somehow whether you like it or not. Yes, there’ll be times when you need to keep it together and put a brave face on. But you need to find places where you can express your emotions and work through your grief, as personally I think that’s the best way to actually begin to move on with your life. And move on you will, with time. It will no doubt be painful to really let yourself feel your emotions, but it’s the best way to let go of them. And there’s no shame in asking for help, be that anti-depressants or counselling - you can’t cope on your own.
And it’s worth saying that life with MS does not mean that life is over. Life has merely changed course, not come to the end of the road. I’ve achieved more since I was diagnosed, and without MS many of those things would not have happened.
Hi guys, things are not as bad as I make out, think I was just having a moment. I know my husband feels helpless and wants to fix this and he can’t so he is struggling with that and he also feels he is letting me down by not being stronger. My other daughter has some financial issues going on that she did not want to bring to me as she says she knows I have enough to worry about but she has let things get out of hand and we knew something was up and I was worrying anyway (payday loans), they are now phoning the house from morning to early evening looking for her so that is another reason she is no longer coming home. That on top of her sisters diagnosis and her boyfriend cheating on her recently has pushed her over the edge and work had to sign her off. I just want her to come home so that we can look at what damage she has done and how we can fix it, I will help (not financially as we cannot afford to pay off these fecking loans) but to deal with them, she has stuck her head in the sand and is hoping it goes away and won’t take my word that they won’t. I think things were just getting on top of me. Tomorrow is a new day, so deep breath, pass me a beer and bring on tomorrow. Linda x
I’m glad you are feeling a bit more positive today hun.
Good luck getting your family sorted. But still do also take care of yourself
Glad you are having an easier day today.
Payday loans are a real pain. Hope you get to have a good chat with your daughter. I don’t know. I thought things would get easier once our kids have grown up a bit but the worries never go away do they hun? My two sons, aged 26 and 25 always come running to me and hubby when they have worries. Wouldn’t want it any other way though!!
I hope Rachael and your hubby are a bit happier today. Probably take Rachael a while though but you will all get there. It took me and my family around 18 months at least to get our heads around my diagnosis 8 years ago but we got there!
Take care of yourself and yours.
In terms of your other daughter’s debts, there are plenty of debt relief agencies out there who can help provide support & guidance - just do a google search & you’ll find loads of places that offer help.
Glad you are feeling brighter about things. Least you know what’s been bothering your other daughter as well as coping with Rachel dx. Try CAB they shoul be able to offer her the aadvice she needs. Lets hope things continue to feel brighter. Take care of yourself Barney
When I read your original post I was upset and worried for you…more problems piling on top of existing ones…not a good time.
Yet you always try to support and pm me.
Glad you seem less stressed in the second part of this post.
Even so, you simply cant go on having more and more problems placed on your shoulders.
What about the Carers Council? I know you dont want to admit openly that you`re struggling, but if you dont, what will Rachel do if you go under love?
Hi guys, although Rachael is very tired today and has spend it all in bed apart from to come down and have her dinner she is in quite good spirits. My hubby is trying to put a good face on things although I can see he is still anxious and upset. He has work issues going on at the moment which are adding to his worries. He has recently been downgraded in his job due to cuts and although his job is safe for the moment as he is a team leader now instead of manager, of this 3 team members there are soon going to be only 2 jobs. He works for the local council and they are trying to save money right, left and centre so all departments are taking staff hits. He says he could cope with one or the other things but not both things together. My eldest daughter is MIA, can see from her facebook page she is off out tonight with her friends. Have tried to get her to come home and deal with things but her phone is either out of charge or she did not hear it or it is on silent. Aye right! There is only so much I can do and if she is not willing to come home and face things and I can’t make her well I just have to sit back and let her face the consequences. I too thought the older they get the less I would worry but I would love to be back when they were small and I chose who they played with, when and where. Rachael has decided she wants to go to see her cousin, he lives several hundred miles away so she yesterday booked a train ticket for a week to visit him, his wife and 2 girls. She is excited about getting to see them all again. So she needs to rest between now and Monday, I will take her to train and he will get her at other side. Although I am pleased she feels up to this I can’t help but worry. And Poll I will not go under, it is just not an option. Thanks for suggestions and support guys, really appreciate it. hugs Linda x
That is great that Rachel has planned a trip. She will be in good hands. It will also be good for you to have a break I know you will worry as that is what mum’s do. But take this break to spoil yourself and enjoy being able to go out and not worry about leaving Rachel. You can have a good cry without having to worry Rachel will hear you or see you upset. This is good that Rachel is taking this step as it will help with her confidence and realise that she can still enjoy visiting people. She will be tired when she returns but she will just need to have plenty of rest and don’t worry if she doesn’t get up much this will be part of her adapting to the MS. But she will have a good time. It is good that your hubby is feeling better, good that he is talking to you about it. Take care Barney
Hi Linda, it’s great to hear Rachael is feeling well enough to go see her cousin. Have a word with train operator & they should be able to get someone to physically help Rachael on & off the train. I know they do it for blind passengers. As for your other daughter you are quite right. You can only help people when they want it. All you can do is be there when she needs it. Take care of yourself & your family hun. Hugs JBK xx
Poor Rachael being diagnosed with MS and having her own sister and father I have to say being rather pathetic as if she needs that going on around her.
Rachael is not dieing and she is RRMS and on a DMD let the drug do its thing and maybe get the father as to go to the gym with her and try to be a bit more supportive.
I find the way they have acted disgusting its bad enough being told you have MS at her age, how about the adults reading up on MS learning about the disease and be a bit more positive, there are benefits of getting on a DMD that works and will help her, it may take a few tries of different drugs to find the right one but hey we all have to do this.
Its not a case of stiff upper lip just having some balls to deal with sh it when it happens!