Forum

Recently diagnosed with RRMS & not coping very well

Hi everybody, I’m very new to this having only signed up yesterday as advised by my MS nurse and doctor. I was diagnosed with relapse remitting ms in March 2018. Having had my first relapse in December 2017 which wasn’t so bad but had no idea it was a relapse in the first place. Shortly after the first rate relapse I had a very severe relapse again 2 months later which left me hospitalised for 4 months. I have undergone treatments of steroids to start with initially followed by plasma exchange as the steroids didn’t work and then finally Lemtrada infusion. I was discharged to go home towards the end fay as I startesaking progress with movement iny right side again. I was bed bound the entire time with no sensation or movement iny right side and speech was also affected. Since being home I have found it very tough to accept my disease and want to feel normal again. But what is normal? I have lost my confidence, I don’t even leave the house without someone as I’m too scared and worries people see me differently as I have a walking stick to help me keep my balance. I feel very lost and confused and as if I am not me anymore. my family and friends have been very supportive but I feel I can’t express how and what I am feeling as I don’t want to worry them. I am just not dealing with my diagnosis at all and finding it extremely difficult to accept. I feel I have lost my independence, as I can’t do things with ease as I could before. I can’t keep up and feel worthless. I know I have made massive progress from being bed bound to being able to walk when I honestly thought I wouldn’t but the feelings of sadness over power everything else. I don’t know anyone who has MS especially RRMS and I just wanted to know how you all coped when and with your diagnosis?? My husband has been a massive support but it’s hard when you never even thought anything like this would happen to you especially when we were planning to get pregnant having being married for five years we were ready for the next step. So this diagnosis has not only turned my life upside down but also had to put getting pregnant on the back burner until I am on a better place physically and mentally. S My doctor and MS nurse recommended me joining this site to be able to express my feelings and meet others who have the condition and how theya manage life, relationships and coping mechanisms once diagnosed. egards Chandni

hi chandni

sorry that you have diagnosed with ms.

it takes time to accept it all.

rage as much as you want, scream and kick.

however it is there now.

life is still worth living.

don’t allow the opinion of other people get to you.

use your stick as a badge of honour!

you have a chronic illness.

the people on the this forum are fantastic.

try to recover your confidence.

maybe your husband will take you out to get back into socialising.

although i say that you should shout and rage, you need to find some live relief also.

you are on an excellent DMD in lambrada.

be find to yourself

carole x

Oh blimey Chandni

There is no reason why you should ‘accept’ your MS diagnosis, nor be able to’cope’ with it.

In the space of months, you’ve gone from being healthy and planning a family to spending months in hospital, undergoing serious drug treatments and looking forward to living with a rather nasty health condition.

You sound utterly rational to me. And you should be given the space and time to kick out at your diagnosis, bewail your poor luck at having MS and disability forced on you, and complain like crazy at your bad fortune.

Then, over time, perhaps you’ll improve on your current state of being, be thankful for getting such a good disease modifying drug and within a couple of years start to feel happy and healthy once more and ready to start a family with your husband.

Getting used to using a mobility aid, like a stick, does make you feel crap initially, as though everyone is looking at you, and sees you differently because of it. But eventually, you’ll find that it actually enables you to have a bit more independence and freedom. Having a stick or a crutch (in my opinion a better mobility aid than a stick because it holds you up better and straighter, is more reliable and you won’t drop it as it hooks over your arm), will allow you to do more than previously, and at least you have recovered to the extent of being able to walk again.

If your last relapse was in February, it is still possible that you’ll find over the coming months that you have more remission to come. If you have the help of a good physiotherapist, you could find your legs and core get stronger, if you have the need of orthotic devices to help your walking, then they could refer you to your hospitals Orthotics department or to an FES centre if needed (depending on what is hindering your walking). At the very least, a physiotherapist could sort you out with an exercise programme to help strengthen your legs.

By all means complain to us on this and the Everyday Living forum as much as you need. We do understand what it’s like and are always ready to a) join in complaining about how rotten MS is, and b) suggest solutions to specific problems.

Whatever you need, whether it’s fellow feeling from people who share a diagnosis, or answers to the crappy th8ngs MS has dumped on your lap, we’ll do our best to understand and help.

Sue

Goodness, you have had a rough time. There isn’t a nice way for RRMS to arrive in a person’s life, but your experience has been particularly brutal and I am very sorry that things have been so hard for you and your family and that you have had such a wrenching change to your health and your life and so fast. As others have said, there isn’t some ideal way of coping with a life-changing dx like RRMS. That applies even when its arrival has been less dramatic, let alone when it hits a person like a train as yours has. Many of us find that, when things are rough, getting through one day and on to the next is as much coping as we can expect from ourselves, and that that is good enough. If that’s what you’re doing, you’re doing OK. It is really good news that you have got on one of the best and most powerful disease-modifying drugs without delay. It is one of the few that really can stop RRMS in its tracks, and I hope that it does that for you. It would surely help to have breathing space to let your body and brain heal and give you a chance to start processing the changes that have come crashing into your life. I am glad that you have found this community, and you are very welcome. Good luck with it all. Alison

Hi Carole

thank you so much for your kind and positive words. reading your reply has definitely put me in a better mood today!

My husband has been getting me out and about so I am starting to build up my confidence I think its just going to take some time for me to get out and go out by myself I feel like a whiner at the moment i feel like my husband must be so sick and tired of hearing me complain about anything and everything every single day!

I was very lucky to be offered Lemtrada as My MS nurse did say not everyone gets a choice of what DMD they would be receiving.

what treatment if you don’t mind me asking did you receive??

and how long have you had Ms?

speak soon Chandni xx

Hi Sue,

thank you so much for responding to my thread.

your post has also given me some comfort and a boost in that everything is going to be ok and i am not alone in this! so for that I thank you! :slight_smile:

I am getting about with my walking tick but then yesterday I managed ti walk around tesco’s without which was a test for self. My husband was not far behind with it if I needed it so that also gave me a massive boost!

you all are so positive and i commend you all and hope to get to that stage one day! but thank you for your kind words ans support i hope you don’t mind but I will add you as a friend so i can keep in touch :slight_smile:

its taken me alot just to be able to post a thread on here in the first place and be able to share experiences with those who have gone through similar stuff.

thank you again Sue your reply has made me feel more at ease than you know!

love Chandni x

hi Alison,

thank you so much for your response.

I am doing exactly that just taking one day at a time :slight_smile:

I think sometimes some days are just harder emotionally and mentally than others, i mean i spent the last two days just crying all day sounds pathetic but i think i needed to let it out as i tend to bottle it up a lot as i don’t want to sound like a broken record to family and friends even though i know deep down that they wouldn’t!

i know that, that is what has brought me here to receive the support and share it as well with those that best understand!

all the things that sound silly to me i can now moan and shout about with you guys!

everyone here is so lovely and supportive i am honestly thrown but in a good way if that makes sense knowing and feeling i am no longer alone!

if you dont mind me asking how and when were you diagnosed ?

i hope you do not mind but i will add you as a friend once i’ve figured out how too lol

love Chandni

1 Like

sorry guys but i have no clue as to how i add you guys as my buddies as i woud love to stay in touch if you all don’t mind! :slight_smile:

Hi again Chandni

I don’t think that the buddy thing works anymore. If you hit my username, you’ll see I have no buddies! But it’s easy to keep in touch with each other. Just answer posts or start new threads as you see fit. We’re pretty much all friends on the forum. Thank you for asking though.

Sue

AHH no wonder I thought I was going mad but thank you for clarifying and letting me know :slight_smile:

You’re not going mental. We accept everyone just as they are, no need to be particular friends with one person or another.

And by the way, we may sometimes appear to be more relaxed, positive and comfortable with MS than at others. We reserve the right to be f*ing pied off at MS and our symptoms any time we damn well like. And that’s after more than 20 years. A few weeks/months after diagnosis, you are really not expected to be accepting of it. Especially given your introduction to MS.

Sue

Thank you sue! You guys have really given me a boost and I’m so glad I finally took the steps to speak out and share my story with you all as honestly no one best understands than someone who has been through it :slight_smile: these replies from you all have given me hope that I will get better and it’s ok to be angry or sad! You guys are fabulous!

2 Likes

You are certianly not alone. Everyone’s experience is unique, of course, but there are some experiences that most of us share - the shock of dx, the being a uncontrollably teary mess (I was particularly good at that one), the queasy feeling that much that seemed solid and dependable in life is now up in the air and out of control. Etc. I have always taken comfort from the fact that people on here just get it because we’re all been there. It can be a comfort sometimes to skip the exhausting process of trying to explain the inexplicable to uncomprehending civilians.

I was dx with very active RRMS 19 years ago. I started on Avonex the year after dx and was on that for 10 years or so until my MS overwhelmed it and I was relapsing badly and accumulating disability at an alarming rate. For the past 7 years or so, I have been on Tysabri, and it has been a wonderful drug for me - I have not relapsed during that time and everything has stayed stable. A really kick-ass DMD can do that. I hope that you find the same.

Alison