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Feeling angry, frustrated and depressed

Hello all,

I am new to the forum and looking for emotional support.

I was diagnosed with MS on 17/12/14 after suffering a severe brain stem relapse that left me wheel chair bound for a year. I was training to be a teacher at the time and had to give up my studies and what felt like my life at the time. I was 24 when all this happened. I was devastated. I was told that if I ever had another relapse it would mean I would be in a wheelchair for life. I tried to kill myself a couple of times. I was referred to Dr Silber at Kings in London and had Lemtrada.

I started to get better, and despite fatigue that leaves me unable to move my legs at times, I have felt relatively ‘normal’. I still do not work, however I am/was working on changing this. The relapse left me with no confidence and a fear of not being able to manage work because of the severe fatigue I mentioned above.

Moving forward my life has been much better, I had a son in September 2018, got married and now have my first house. This year I have been able to run 10K and cycle 23K. I was loosing weight (another one of my goals) and have signed up with a teaching agency to build my confidence and experience. I could almost forget I actually had this awful disease.

Then, I noticed I had a numb leg a couple of weeks ago. I got an emergency MRI that shows changes (I am still waiting for full details from my neurologist) and since the weekend I have been exhausted all the time, dragging my legs (they feel like I am wading through water) and I am using my crutch again.

I feel so angry. That the MS is stopping me from finally moving forward again with my life. Before this happened, I felt like I was finally living again. I now feel like have been thrown backwards. That all this progress has gone down the drain. I am depressed (I am on antidepressants and have had CBT about 4 times since 2014). I am comfort eating and drinking as a coping mechanism (right now it feels like the only thing I am actually able to do that gives me reprieve from the way I feel). I am also scared.

I was with my 21 month old son on Sunday whilst my husband was at work, I was on the bed unable to move and in tears. I felt that I was a failure as a mother, because I couldn’t care for him properly. What if he fell? Needed his nappy changed? Wanted food? How could I meet these needs if I couldn’t move?! I dragged myself along the floor and did what I could until my parents let themselves in and came to our aid.

I am really struggling emotionally right now and the only thing that stops me from trying to end my life again is my husband and my little boy. I need help fast and I need to talk to others with MS that actually know how this feels. Please can you help?

Apologies for the essay and my life story.

Really feel for you, unfortunately everyone with MS is different and we all go though these feelings at some point,we are also very different people with different outlooks and needs. I was in education for a long time before this disease ripped up my life and made me start again. Sorry I’m not much help, others on here will be better to chat with you and know how you feel - you have come to the right place though.

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Depression is a normal part of our lives now, but don’t let it take over! You have a beautiful baby and (hopefully) a loving husband. When you have bad spells, you just need to focus on taking care of yourself and getting through it. It can be very frightening at times, but it’s not the end of your life. I hope you’re able to talk about your feelings to your husband and parents so they can provide the emotional support you need. If not, please find someone local who will listen to your fears. And know that this forum is here, with people who care. Sometimes just sitting down and putting it all in black and white can help.

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Hi Christa

Firstly, you never need to apologise. MS can mess us up, and struggling with it is not something to say sorry for. Many of us here can completely relate to what you’re feeling. I know some people (not all) can relate to the classic stages of grief - denial, anger, bargaining, depression, and finally acceptance. The first four aren’t fun things to experience, and can take time to work through. But they’re normal feelings to have. And it is possible to get to a place of acceptance. That doesn’t mean being happy that you have MS, or don’t have any problems with it. But it does mean you can begin to build a new life and move on.

So your life is NOT over. All the achievements you’ve made in the last few years, like the running and cycling (wow!) are fantastic, and to be celebrated, and are not wasted. But life has changed direction now. You need to rethink what you can do, and how - but you can still achieve things. It sounds like you may be having a relapse, so get in touch with your MS team. It’s worth asking for a referral to an Occupational Therapist, as they could help find solutions for practical stuff at home. I’d also talk with your husband or someone you know who’s a good problem solver, and make contingency plans for what to do in situations like the one you mentioned about your son.

So help is available. You can move forward. It will be tough, but you’re not alone.

Dan

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Please don’t give up hope.I know its very hard.My very first ever relapse was a severe brain stem relapse 28 yr ago.I was 34 at the time and thought my life was over.Things have not been easy but i have just turned 62 and i am not in a w/c and can still stand.

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Oh Crista, you poor little sweetheart. As I read your post, I felt sad then elated and then sad again.

I think this must be a flare up/attack. I dont know much about DMDs, as I`ve never qualified for any. Is Lemtrada a DMD? I should google it I guess.

It looks like you need to have help close to hand while you are going through this bad time. Can your parents take your little lad for a while and give you time to rest?

There is no need whatsoever to feel you have failed as a mum…loads here will understand what it`s like to have young children to care for, when you yourself feel so totally worn out and worried.

I was a grandma when my MS started and I helped looked after our grandchildren…I was falling all over and fatigued. I felt I was missing out as I couldnt do as much as I wanted, to enjoy their young years.

I truly hope things improve. Take care sweet.

Boudsx

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Thank you for being so understanding and supportive. I bet you are an amazing grand parent despite the MS.

Lemtrada is a DMD, here is a link if your are interested in more information:

https://www.mstrust.org.uk/a-z/lemtrada-alemtuzumab

Luckily my parents and husband are very kind and supportive. I broke down last night and told my husband exactly how I’m feeling, I don’t think he realised I was in such a bad place, he has taken four days off to care for our son and I am staying with my parents for a little while (their house is so much cooler in this heat!). I had a good nights sleep and feel like I have a bit more perspective now. I have rung Dr Silber’s secretary and explained that I am going down hill at the moment. I am hoping he will get back to me soon. Last time this happened I was given Plasma Exchange and it really helped. Hopefully this is something I can have again along with another treatment of Lemtrada.

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Thank you so much for your kind words. I need to give myself a good talking to I think.

Luckily my husband and family are very loving and supportive. I talked to him last night and he has taken some time off work to care for my son and I am staying with my parents for a while.

I agree with what you say about putting it all in black and white. Just writing the above post was therapeutic in itself. Hopefully things will get better soon.

Thank you for responding and offering such kind words.

Have you managed to go back to education since the MS? I am trying to figure out the best way to go back to it all and not sure if it is possible.

That is so lovely to hear. You give me hope.

Hi Dan,

This is all very helpful advice, thank you. It is nice to have someone offer a potential way forward. When I speak to my friends and family they are very understanding but don’t really have any answers.

Thank you again,

Christa

I’m now retired, due to ill health, was a bit unsure at first but realised that a relapse due to work ( I reckon stress sets me off!) would not be worth it. I miss the children. Having a good support network (my wife is a rock) is vital - it’s a case of finding out who your real friends are and who starts off being interested/helpful and then you don’t hear from them for months.

This forum helped me a lot - you will find that someone on here has already posted something that you want to know the answer to and the wealth of replies and genuine support is outstanding (poop - just used an Ofsted term!!)

Dr A

Hi Christa

As a bit of encouragement, since being diagnosed & needing a wheelchair all the time within 18 months, I got married, returned to work, raised £1,500 for charity doing a tandem skydive, became a member of an NHS committee that reviews applications for research grants to decide whether to fund them, learned to fly after being lucky enough to win a scholarship with Flying Scholarships for Disabled People (an amazing experience - going from never flying a plane, to completing 4 solo flights in less than 4 weeks of learning, was a big confidence builder, and strengthened my faith in God and what He can do when I trust Him), and am now doing some part time study at a local bible college. And like I say, this is all while being a wheelchair user. Of course, it’s been tough at times, and I’ve had to scale things back at times. But life does not have to be over. And I’m thankful that God has a plan for my life.

Dan

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Christa - I’m on antidepressants as well & they help keep me balanced, having MS can be very tough, mentally as well as physically but you are on the boat with the rest of us & many times, I have felt that life wasn’t worth living, then I took a look around me & said, you know what, life is worth living & strong people are the ones with MS as they can fight with their last breath against it - We’re all with you & sending hugs from Northern Ireland - smile Liverpool FC are going to win the league

Hello Crista, oh I`m so pleased you seem in a better place today…you are lucky to have great family and hubby to help you. It will have done you and your hubby good to let it all out.

Hang in there darlin

Boudsxxx

Me again. Hows the little fella doing? Hes at such an interesting age…absorbing everything and wanting to know everything! Enjoy him

Granny Boudsxx

I’m furious about having m.s. and the problems it has caused. I don’t subscribe to the notion of going through the stages of acceptance to reach some sort of resolution.

I remain very angry.

I get annoyed when people try to get me to ‘look on the bright side’ - because if you tell folk you’re depressed etc. they don’t know how to handle it. And so we are tempted to play the game where we say we’re all singing all dancing and they’re happy.

And I haven’t developed a sense of humour - a trait which people like to ascribe to pwms.

There is nothing wrong with being depressed - when I’m on a downer I wallow in self-pity - and may spend a couple of days in a state of isolation.

BUT we have to manage this depression - we know when it is so deep or so long lasting that we need help.

So, Christa - acknowledge that you have been dropped on from a great height - m.s. has mucked up a lot of things in a big way and allow yourself to feel depressed - a perfectly normal reaction.

But there comes a time where you have to pick yourself up and get on with things - not all at once but a bit at a time. The tail has to slowly wag the dog and slowly the dog gets going.

Cracowian there is a tremendous amount wrong with being clinically depressed and of course it can come as a direct consequence of MS. I mean dependig on where the damage hits you will experience mood swings which will amount to much more than wallowing in self pity. Just saying we have to be very careful. Christa it occurs to me that your husband and self might want to look for a nursery placement for your child? He is certainly at an age where he will absolutely thrive in it and it will - when you are well - start and link you in with other parents who can become friends over time and add to your support network. You will start to recover from this relapse and then you can maybe question and look for the stressful life factors which precipitated it. Maybe around that time might be right going forward slowly and could be the stage where you would benefit from sitting down with someone (or do it on your own if that is your style) and looking at a simple map of your day to day life, This could be done for maybe 6 weeks at a time and include one or two special goals you would like to achieve. You could then build on that, I am sure you know the alcohol has to stop because it will be making your depression seem worse and increasing your suicidal thoughts (I have been there too xx). Please try to stop and if you cannot ask your GP to refer you to an appropriate agency. Good luck xx

Hi Christa, don’t give up love, you’ve too much to live for, a good hubby and a wonderful little boy, chin up love, you will get through this, like other’s have said, we all know what you’re going through, as we all will have, or still are going through something similar. Good luck to you and your family, sending BIG HUGS, x x

My husband suffers with low mood and I was diagnosed with MS a couple of weeks ago. I try to remember that both these conditions are not choices we make but illnesses we suffer from. Being so newly diagnosed I think I am numb emotionally to it at the moment. However I teach, have been for 12 years and wonder how I will cope in the future. But I don’t think it’s an impossible goal. My school have been so supportive during lockdown (a few weeks before was a relapse that started journey to diagnosis). It might take time, it might mean rubbish days and it will be hard work. But you won’t know if you don’t try! There are also less demanding roles in school that may suit you more as well. Sending you my best wishes.