Last reply 9 months ago
Family woes with ms

I was diagnosed in June 2017, so still pretty fresh. Initially, I managed ok and then in November I was advised to go onto DMTs because if more lesion load.
I was working full time, as a project manager with a busy and responsible job, and also have two small children aged 3&4.
My husband is not great with emotional support and I was signed off work in mid November (I think everything hit me then that this ms thing is not going away). I have been waiting 2 months for my medication to arrive (Tecfidera) and it arrived yesterday after much chasing.
My husband is making me feel very inadequate- I am extremely fatigued, and while I’ve not been at work I have sorted everything out for the children, for Christmas, we used to have a cleaner but I cancelled her while I’m off to save money.
I don’t really know what to do- I am trying to go on as normal, but that doesn’t exist anymore as I’m trying to find my new normal. I have some big decisions ahead about my work, and I feel as though I’m being pushed to make big decisions about my relationship as it’s making me very unhappy.
He doesn’t talk to me, and is always having a go at me as though my best is never good enough.
Feel like a failure- useless brain, useless wife, just hoping I am a good mum!!

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edmontonalberta
9 months ago

@amo123

Everyone is different so without watching what is going on, I hope you do not mind if I guess…

You had a vision of what your life would be like as you grew older; almost everyone does. Including your husband… M.S. changed your future (and his). The financial picture has changed. Your physical abilities have changed. There are two young children who I suspect will be active & needing attention.

I suspect your husband is afraid of how the future will unfold.


mmhhpp
9 months ago

You have few tough years ahead. Things will get easier when kids reach 7 and can be more independent. Mine are now 10 & 8.

Do not loose your cleaner! Money well spent. More upset without cleaner between you and husband! You will find difficult to clean and cleaning will be an extra job for him on top of other help he may give!

My husband is not very caring but deep inside I think still loves me. He doesn’t want to hear about ms symptoms, I guess it is too much for him. That is why this group is good! You can talk here!

It will get easier! Any period of new adaptations is tough…..

Keep hope.

From a cripple ms sufferer

Xxx


bonang1975
9 months ago

Stop thinkin your a falure your not!!!!and i have no doubi your a gteat mum. This ms is alot to take in. Beleive me i feel like a bit of a failure as a dad and hubby at times. But you know what if they cant appreciate how hard we are trying what can you do. We can only try our best 👍


stumbler
9 months ago

@amo123 , it’s still early days for both you and your husband. MS is still new to both of you and you are both having your own personal battle with this diagnosis.

Your husband is probably feeling powerless in the face of MS. He doesn’t quite know what to do to help you and is probably a bit wary of getting too close, in case he hurts you. He’s angry at the MS.

Your kids are a different proposition. They aren’t going to judge you or ask the reason why. You’re still Mum. Over time, they’ll realise that you’ve been managing MS and will respect you more.

You’re a Project Manager, so you’re pretty adept at time management. Plan for some quality time with your husband, so it’s just the two of you. And, avoid talking about the MS. Just be the two of you and re-establish your connection.

You need to remove this cloud over your home life. It’s causing stress, which is a great antagoniser of MS.

Just be patient with yourselves as you both come to terms with MS.

Have a great Christmas. 🎅🎅🎅


billybilo
9 months ago

You are not a failure. You will never be a failure. Just because you have MS doesn’t mean that you are worse then others. It’s not even your fault. Please, don’t let anyone tell you that you are useless. Just fight, girl. Be yourself and fight, you have a life to live, beautiful kids who you have to teach strength.
I’m with you with all of my heart and thoughts. <3 If you need someone to talk to – just send me PM. 🙂


ruggermad
9 months ago

ANYBODY who makes you feel inadequate is not worthy of your time. Your husband needs to either help and support you or ship out!!! Sounds like his true colours are shining through and he’s quietly making his feelings known.

Life is too short and complicated to have a non supportive partner. When I was diagnosed I lost friends and a close family member as their involvement in my life was having a very negative impact on my life. Now they are gone from my life, I cope alot better than having to justify or answer to them.

You are a strong person and you need to make sure that you surround yourself with love and support.

Learn to live with the complications of MS, if you try too hard to fight it, then you will only tire yourself out.

Sending you some strength and ninja power………………


ruggermad
9 months ago

Oh by the way, i’m on Tecfidera and have been for three years now with no issues or any new lesions (well, that was what my last MRI scan showed)

Quick tip for the Tecfidera tablets – Eat with a meal but I suggest taking with yoghurt as will help with the stomach


strictlysoca
9 months ago

Hi first of all it is early days and I would say don’t make any sudden decisions that are hard to reverse at this stage. Try not to stop work especially. Iit may need to change but you don’t need to give up . You are now on a moderately effective DMT which could make a difference to especially fatigue. You are still recovering from a relapse. It also affects your mood.

You have kids and to be honest you need as much help as possible and that means the dad. Again MS in the early days throws us in a total spin and we think everything has changed. It hasn’t You are a good mum then you will be one with MS

Sending you a big ol hug. Talk to a friend or the help lines at MS charities they’ve saved me from going into one and doing things that 5 years on I look back and realise would have been a mistake.

Ps don’t give up on the hubby. He might end up letting you down and then again give him a chance to keep the old marriage vows. In sickness and in health kid


chezy17
9 months ago

Hey.

You’re not a failure, do not let anyone ever make you feel that you are!!! When you get diagnosed with something like this, it really does separate the men from the boys and vice versa, women from the girls.

Having been in the same situation you’re in now last year, it made me stronger and made me realise life is too short. My hubby actually walked out, which were for other reasons but I think he got scared of the future. I’m not saying this to hurt you, I’m saying as a mum with 2 young children you’ve got this!!!

When something like this happens, it shows how people really are and I’m blessed to have such a supportive family and friends network!

I for one refuse to let the ms have me, I might have it but it doesn’t have me!!! Don’t get me wrong, I have days when I’m shattered but I write them off and start again the next day.
Life doesn’t stop, your future plans don’t have to stop and don’t anyone ever think you’re less than you are! Live your life, be happy, you have two beauts that will love you regardless! Mine are what give me the strength to just keep going and duvet days are awesome for taking a much needed rest aswell as spending quality time with them!

Live your life like the glass is half full 😘! Xx


potter
9 months ago

I have diagnose for 10 years and on Tecfidera for almost 5, I just had my first relapse in 10 years and my neuro considers it a mild one. My husband who is very supportive seemed angry this happened. I asked him what was wrong and he admitted that he was helpless when it came to making me feel better and it made him mad and frustrated. Maybe this is the way your husband is feeling, even after 10 years my husband won’t talk to me about my MS. Divorce rate is high, maybe he will agree to see a counselor for the sake of the children. He also make be worried about you financial future, you need to sit down and talk. When it comes to taking your Tecfidera there is a lot of information on the forum but if you still need help just ask. Potter


bensdad
9 months ago

He sounds selfish! If you love someone you love the warts n all !!! I know there are adjustment times and you are not well but he needs to come around. It may never happen some relationships do not work. It’s very hard to write a book with a few sentences and it can take time to adjust. I realise you also need to adjust and it is easy to think poor me, rather than poor us! Have some time together without the kids, a date night can be important. Talk and understand what you both need. Men are needy, I know this because I am one… your relationship has probably gone from, the two of you to the three to the four to ms? Time for you and him and a little less stress! It can work, time can be a great healer and you both need time to ajust. Sorry for the rant!! Talk to each other and understand each other’s needs x


rachaellouise
9 months ago

@amol123

Hi – don’t get your self worth from him. Develop it within you. Don’t let him bring you down . He is just 1 person in a big wide world of 7 billion people.
He probably is struggling to cope with the ms but like others pointed out it separates the boys from the men , the mature from the immature ! (Thanks for reminding us)

Is he just coming up with these hurtful things ? Are you arguing?

focus on yourself now
Do things that will make you feel better not worse. back to self care in these situations . Easier said than done when you have had an argument or mad and need to refocus .

Rachael. X


vickya
9 months ago

Sending you hugs and good wishes. It is hard for all partners and family to adjust – it can take years but remember you are still the great strong person you were – you just need more rest than others and to prioritise what you do. Also never forget to count the good things too.
Check out this post also

relapse recovery time?


and the spoons theory
Happy Christmas
Vicky


kitty369
9 months ago

Your post is very close to home for me. I was also diagnosed in May so it’s all ‘new’ I am off sick (and most of my life have never had time off or only for the odd day so very weird) feel like I am letting my team down at work and don’t k ow if I can do my job anymore, then there is home 😳 it’s all so much and when your struggling with relapse or symptoms everything can just be so hard and if u r not productive or useful it’s easy to feel rubbish about yourself.

I am lucky in that my husband is very active and involved and gets on and sorts our 2 boys out he cooks and shops although he doesn’t seem to notice is cleaning or tidying needs doing. I am trying to hobble around as much as I can and do things.

I have drawn a deep breath and am having physio and counselling to help me physically and mentally. I tried going onto tecfidera but I wa so Ill and I think being ill on it triggered me relapsing (although still getting uk head around what a relapse is and means)

I think it’s a major life adjustment post diagnosis and it’s important to look after yourself and give you yourself a break. I don’t know what I am going to do about work but am giving myself space to work it out. I don’t know yet what it means for my role as a parent or wife or the impact of doing things in the house or outside the house but I am trying to work it out and get to a point of recovery, stabilisation and a treatment that will work for me.

I am sure u r a great parent our children drive us and will adapt to any limitations u may now have easier than probably we will.

Take care, take time and look after yourself u will work it out.


fingersandtoes
9 months ago

If I was your husband I might be afraid of turning into more of a “carer” than a husband. This is probably compounded by having young children.

First thing I would do if I were you is to seduce him. You could probably both do with it! You both need to feel that your marriage is not going to be dominated by your illness. Then use the post-coital glow to initiate a conversation about how you want to feel and how you can work together to achieve that.

Fatigue can be overcome. Try doing some exercise (and see my point above – sex counts!). Don’t push it but do a manageable amount and increase it gradually.

This is your “new normal” but it doesn’t have to be like this forever. Starting on Tecfidera is a good first step, though your husband needs to be aware you may have side effects and be ready to step in if need be. (I had my Tec education session today – looking forward to starting it though with some trepidation!)

And hire the cleaner back – even if she only comes once a fortnight I’m sure that will be a huge help.


amo123
9 months ago

Thank you so much from r all your love and comments. It means so much. I should really have said that when my husband was 27 (almost 20 years ago) he lost his mum and had to care for her for 5 years during her cancer battle. I’m guessing this has all become quite real for him too and he is having his own battle.

I am truly grateful for your words of support and encouragement. Wishing you all a happy and healthy 2018 x

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