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Finding it hard

I am finding it really hard to cope with my daughter’s mood swings. I know this is all part and parcel of the condition but I just can’t seem to do anything right. I know what she is going through is awful but she does not seem to want to do anything to help herself.

i have suggested she gets some counselling but she refuses. She has seen a physio who has given her exercises which she rarely does. I know I should leave her to get on with things in her own way but it difficult to see her sabotaging her health and not listening to advice from her support team.

any suggestions ?

I am not diagnosed or have MS but I have had some nasty illnesses, there is no way that I can be cured from them either. I told my GP how low I felt and he put me forward for CBT therapy and it worked I was able to bring myself up into better frame of mind. The problem is that your daughter would have to let the doctor know that she needs help, be there for her it’s an awful disease to have and get your head round. I now know when I start to go down hill now and what to do if I do but this is a hard because sometimes you don’t know how low you are. This may take time. I hope things go well for her. Kay

Dear Rosebud

I’ve just whizzed through your various posts over the last couple of years. I do feel very much that your daughter is taking you and your love for her for granted.

You’ve been posting many of the same issues over time. Your daughter has, it seems to me, wanted to have her world ordered exactly as she wants it. I understand that there is an element of OCD to her need to have things exactly right, but unless she shows a different side of herself to friends, I’d be surprised if she has any.

It’s so difficult to know what to say this time. Is it mood swings, or the behaviour of a spoilt child who wants her own way? Yes, she has to live with MS and increasing disability. Physiotherapy is hard work and I completely understand why she resists it. Counselling too is hard to do and committing to a course of whichever kind of counselling means looking at her life and thinking about how she could effect change.

I do realise that your daughter is not a child, but a grown woman. As such, surely she should start taking a bit of responsibility for her life and health issues?

In each of your posts over time, your love for your daughter shines through. I feel that you are suffering every bit as much as your child. And knowing that however old your daughter gets, she will always be your child.

I’ve often thought that it’s not only the person with MS who has to live with a horrible disease, but the people who love them. In some respects, I feel that it’s almost easier to be the person with MS than the nearest relative. In my case it’s my husband who suffers MS with me. In the case of your daughter Rosebud, it’s you. And perhaps it’s time that she realised just how tough it’s been for you.

Sue

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Thank you Kay and Sue. I do realise that she is having a hard time dealing with everything that MS has thrown at her and will of course always be there for her . My struggle is purely frustration ( and that is my problem not hers) frustration when she seems to sabotage her health, frustration when she doesn’t take onboard the advice given.

Of course I can see that she won’t really change as it has gone on for too long. So I think the only way forward is for me to stand back,respect her wishes and let her just do what she wants to do. After all it is her body and her journey.!,

Hi everyone my son has ms it’s got worse the last 12 months. I do not know what to expect what more will happen he’s 31 I would love him to maybe talk to someone young about MS is there a chat forum for him he’s very shy doesn’t mix’s very well feel he doing this alone . I know I’m here but would like someone his age for him to talk to has anyone got any ideas please

Hello Amanda

It’s tough to be young and have MS. There are members on this forum who are younger, but we do span all ages, from 20s to 70s.

Your son could have a look at https://shift.ms/ there are a lot of young people using that forum.

It’s also tough to be the mother of someone with MS. Don’t feel like this forum is just for the people with MS, this part of the site, being for carers also includes family members. It does get looked at and if you have worries and concerns, we’d do our best to help. If there are questions, worries, concerns, whatever.

Obviously we can’t tell you that in 5 years X will happen or Y next year. But wherever possible, we will try to help.

Sue

Hi Sue Thanks for your kind words yes sometimes I do need help understand the thins he’s going through I will give that and see if he try and talk to someone once again thank you

I have a similar experience with my husband. It’s very challenging not to mention frustrating. Professionals are no help. I’ve tried to book therapies, taken to physio sessions, suggested volunteering etc, etc but he has a problem for every solution. Its heartbreaking to have to witness the continual withdrawal from the real world and any desire to engage with it. Like you I have felt I should just let him get on with it. But that feels so wrong and as a couple it feels like I too am giving up on everything. Not sure there is an answer - sadly.

Has your husband just been diagnosed in the last few months, or for awhile. You don’t always know that you are depressed, I was so ill and coping with the illness that it was the last thing I was concerned about. Only when they found out what I had that they put me forward to CBT, it helped me a lot. I now know what to do if it happens again I am on fluoxetine, so I will not go any lower, hopefully.

Good luck Kay

Hi Kay He 2as diagnosed nearly 13 years ago and still unable to accept that he needs to make changes to his life and the things he can do. Recently bought cannabis oil online despite being told by hus consultant that it is unregulated, costly and may interfere with his prescription medication. On 3 different antidepressants and gabapentin at v high dose. Also self medicates with alcohol. Not really sure how much of this behaviour is MS or personality disorder! Is very convincing with professionals that he is fine until behind closed doors and is completely different. Difficult, selfish, sullen and then laughing and joyful the next minute How on earth can anyone know how to deal with this behaviour. Any suggestions welcome?

Busy all the time

Why don’t you to talk to your GP about this, you have to look after yourself so that you can look after your husband. Is there a way that you have time for yourself, meet a friend for dinner, have your hair and nails done, even if it is a little walk around the houses. Is there any carers that may help you.

I know when my dad was ill we we given a morning or afternoon to be able to forget for a little while as there was someone else looking after my dad, sadly he passed away last year, cancer. All the best, I hope you feel better soon.

Kay

Hi kaye Thank you for the kind suggestions. Sadly they are easier said than done! Gps just really dont have the time to be of any real value to the long term mental and physical health needs of the Ms suffer or those that love and care for them, in my case my husband. I’ve tried to maintain a constant in our lives by continuing to work, this allows us financial stability and I’m not eager to go down the benefit route which will also place restriction on both of us. However this does mean I often work long days, resulting in very little time for myself as I feel guilty to then do anything for myself. Our adult children are caring, but have busy lives of their own with family and work responsibilities, and only react when there is a crisis. Saying that, I do feel blessed to have their support and the safety net they provide. Not to offend anyone else suffering from MS I’ve noticed that the condition goes hand in hand with a certain personality of control and need to be centre of attention. This is exaggerated in my case as think this might have always been a personality trait but whilst engaged in working all over the world didn’t appear to be so obvious. Since having to stop work is unable to cope with the status of being at home. Its now like - I can’t do what I want to do so I’m not going to be happy or look to make any changes to do the things I can do. I know depression plays a massive part in having this mindset as a response, but this really is so hard to live with. My husband also sees seeking help and support as a weakness and a futile waste of time as it won’t change the fact that he has MS. So where can we go with an attitude like that?