Not Coping

Hi, Im sorry to go anon, just feel too embarrased to put my name to this.

I was diagnosed earlier on this year with RRMS. It was a long journey getting there- although compared to some peoples journeys relitivley short. First symptoms started last year, so was dx in under 1 year - which is fairly fast for MS.

I have tried so hard to be brave about it all, but i am really not coping very well at all. I am pretending to be ok, but it’s worn me down. My husband is great, although not so great at housework, but he does work. I am snappy with everyone i love - including my children. I never have any energy to do anything - even playing with the kids im finding hard to cope with. When my husband gets home, i just want to cry and i end up going to bed at 8 as i cant face talking anymore. All my friends work full time and i have no family around me, except husband who also works full time. I feel so alone, stressed out and miserable. I am struggling to enjoy anything.

I know most of you probably have experienced the same emotions. I am scared to tell GP/nurse about what essentially must be depression as i have a history of mental health problems - including several failed suicide attempts when i was younger. I wouldn’t ever try that again as i love my kids/husband too much. However i am due to start DMD’s and if i confess to this depression they will stop me having the beta-inteferon i would like to take, so this is another thing out of my control. I am waiting to see a clinical psycotherapist and am hopeful that will help. To be honest i just feel numb and like i want to run away freom it all, as there seems to be no end in sight.

I know i am not your problem, and we all have to deal with things ourselves, just thought writing it down might help. Thanks x

Hi Anon, Im so sorry you are feeling so low. I understand and relate to alot of what you have said. I honestly do not know what to say to you to help apart from sending you a big (((((hug)))))) and letting you know you are not alone. Lisa x

First of all, (((((hugs))))). Dealing with a diagnosis is really really hard and we understand. So don’t feel embarrassed - there is absolutely no need.

I really think that you should see your GP and ask about counselling asap. An alternative would be to see if there is an MS Therapy Centre near you that has a counsellor. This is not something that you can be brave about without everything bottling up until it’s self destructive - you need to be able to let it out and counselling really can help. Don’t wait for the appointment - make a start right now: make an appointment with your GP!

I also think you need to be honest with your husband (and to a lesser extent, your children). Perhaps there are things that you can do differently? Is there any chance you could afford a cleaner for a couple of hours every couple of weeks? Get someone to do the things that you can’t manage?

MS fatigue is a killer; there is no fighting it :frowning: However, you can still spend time with your kids - it may have to be “watching TV with mummy” instead of something more physical, but your kids won’t care as long as you’re there.

As far as being alone goes, I bet there are others in your area who don’t work or only work part-time. Making contact and friends isn’t always easy, but it will happen over time. You will gradually begin to make new friends and your days will become fuller and less lonely. One of the first things you could do is see what your local MSS branch is like. A lot of them are more like OAP groups, but the odd one is really good and they may be able to put you in touch with people your sort of age in your area. The MSS also run events for younger people from time to time too so maybe see if there is something like that near you. You could maybe try the MSS facebook page to see if there are people near you who would like to meet up? And there’s always on here too. I’ve made lots of friends on here who I meet with from time to time and regularly email and speak to. Why not do a post to see if there is anyone in your area? I’m part of a wee group of MSers who are from the Hillingdon area in London. We all met up when some of the people from here went to the local MSS branch meeting and then we all sort of broke off on our own (being a bit too young to do the OAP stuff at the meetings!). We go to the gym regularly and we meet up for regular outings to the pub, people’s houses and proper outings. If you are able to get to our neck of the woods, you are very welcome too :slight_smile: If you aren’t, then you never know, there might be something similar near you. Your MS nurse may know, so it’s worth asking him/her.

But first and foremost, please see your GP. Being depressed doesn’t automatically mean that you can’t start on an interferon, but you will have to monitor your mood very closely. Please be honest with your GP and with your MS nurse. Copaxone is a perfectly good alternative to interferons, so it’s not the end of the world if your first choice isn’t so suitable after all.

There’s more I could add, but I have to dash…

I hope this helps at least a wee bit.

Karen x

Please don’t be embarrassed about this. There is no normal at diagnosis. For some of us it is a huge shock, for some it is relief, for most of us it is a mixture of lots of things and it is a huge thing to take in. MS does change your life but it does NOT end it; these feelings will pass and you will learn to enjoy things again. Most of us stil work, enjoy hobbies, some sport, holidays, active social lives etc. Have a look on the Everyday Living board and you will see what I mean. I am glad you are due to see a clinical psychotherapist as it really does help to talk through your emotions but you need to talk to someone now.

Having a history of depression does not mean you will not be able to start on DMDs but it may have a bearing on which ones you are offered so you really do need to share this information with you neuro/nurse. To not do so may put you at risk of suffering further depression and that would not be wise.

If you look on this website at the newly diagnosed section you will see that they compare a diagnosis of MS to the grieving process - denial, anger, grief, sadness etc. I found that very helpful at first and I also contacted my local branch of the MS society as it helped me to talk to someone face to face who had been through the same thing. Don’t forget there is also the Helpline where you can talk to someone confidentially.

Whatever you do please don’t sit at home bottling it all up. Are you sure you cannot talk to your husband? Men are useless at starting a conversation and he may think you are doing fine but may be relieved if you bring up the subject so you can both talk things over and support each other. He is probably struggling to take it in as well but doesn’t know how to help …

Take care hun and stay strong - you will get through this. Don’t forget, there are always people here to offer kind words and support as well

Tracey xx

Thank you all so much, i know i shouldn’t feel embarrased - but i do. I feel like jekyl and hyde at the moment - one minute im fine next minute im screaming at somebody for breathing in the wrong direction.

I know you are all right about needing to be honest with the gp - it’s just hard as i feel like im giving in to it. Spent such a long time getting over depression before, not sure i have the strength to do it again. But by the same token i have my husband now to help whereas in the past i was on my own. I do talk to him about things, but i don’t want to keep going on and on about it every day. It is controlling my life at the moment and i know that has to stop.

I think what is also hard is i never learnt to drive, which wasn’t really an issue before as i could walk anywhere i wanted to go with the kids. Now i struggle to make it up the road to the park, let alone go anywhere new/fun/interesting. The kids must be so bored, only so much TV you can take. No MSS centres near me unfortunatley (at least none accessible without a car) Adjusting is hard, thought i was doing so well to and now it’s all falling away. GP it is on monday, no other way is there.

Again thank you for replying, and the hugs xx

Well there’s something to take up some of that free time: learn to drive! If you can’t cope with a manual car, try an automatic - very easy and very practical for someone with MS :slight_smile: Kx

Yes I have it on my to do list, just need the kids to start school in September and then I can start. Feeling a little lighter today, think having admitted to you all that I haven’t been coping well, means I can now accept it too, if that makes any sense? So thank you doesn’t seem like a big enough sentiment, but thank you all the same. X

You can always make a start on the theory part now - get it out the way :slight_smile: Kx

Hi, I`m so glad you are feeling a little better, after reading all your replies.

They are full of good advice and support.

Believe in yourself and your worth…you know it makes sense.

luv Pollx

Hi just thought I’d let you all know I took your advice. Went to gp this morning. He was very kind, gave me some meds to try and help in the short term. He chased up my referral to psychotherapist and told me not to worry about the dmd situation (like you all said, he does not think its impossible to have with depression and he will write to my neuro) so I think I have made a good step forward. Having a good day with the kids thus far too :slight_smile: Thank you all again for giving me the support to be brave xx although still hiding behind the anon-one thing at a time! x

Well done for seeing your GP :slight_smile:

Small steps…