Last reply 2 months ago
The ‘Me’ inside has changed

Dear everyone, just needed someone to talk to this evening. I was diagnosed in January with MS. sort of knew about it for 14 years ago when I had an mri and steroids for numbness in my body. The words were mentioned then as a possibility but all this time I have been healthy and active with just a few minor twinges over the years. Nov/Dec/jan have been horrible. However although in the whole scheme of things I am 90% better I am a completely different person to who I was. I will be getting my DMT ( Tecfidera) drugs this week and it’s now all real. I’m trying to wean myself off Pregabalin at the moment as my brain was so fogged I almost couldn’t string a sentence together. It’s going ok but not easy. It’s the most beautiful sunny Easter Sunday and I almost can’t stop crying. My poor poor husband, he’s leaving me too it because he doesn’t know what to do or say. I just don’t know me anymore, I’m different. I feel unattractive, unhappy, almost not bothered about seeing my friends who have been wonderful. My personality has changed…I just don’t know this person I’ve become. I feel grief…and overwhelming sadness. I really don’t want to start the medication..I’m scared. I feel an absolute mess emotionally. I’m lucky though, I’m back on my feet and walking but not the same in my head. Too much self pity…sorry, it’s so unattractive.

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2 months ago

Hi @fiona_payne and welcome.

Despite the suspicion 14 years ago, a formal diagnosis is still a shock. So, you need to give yourself time to process the information. And, yes, to grieve for the life you knew before this episode that led up to the diagnosis.

You can expect to progress through a range of emotions over the coming months. But, you’ll eventually reach some logical conclusions as you get everything into perspective.

So, live healthily, eat healthily and avoid any further causes of stress.

There are some “tags” that have been automatically added to the foot of your post above. Select the Tecfidera tag and you’ll locate all the previous discussions regarding this DMT.

2 months ago

Thank you for your wise words.I really don’t want to be this person, I just want to heal mentally then I feel I can deal with most things, I’m fed up of putting a front on. I’m in a better place physically than I expected 2 months ago. Sometimes a good cry helps.

2 months ago

Don’t be too hard on yourself. It is a helluva lot to process.

Whenever I have felt a bit adrift and generally pissed off at ‘God & His Universe’ screwing with my life I have focused on the things I know I can do and attached my efforts there so I can get a win, however small, and use it as a way to measure progress.

Tecfidera is not that big a deal overall and pretty safe. I took it for 7 – 9y, when it was being trialled to license. It is a good thing that you are going onto a DMT.

Chin up. Illegitimi non carborundum l. As they say. Enjoy the weather.

2 months ago

Hello @fiona_payne, I’m sorry you are experiencing these emotional agonies. But trust in that they will pass. You are still recovering from a relapse and also the sledgehammer of diagnosis, so you must give yourself this opportunity to feel what you feel. Both these things need time, indulgence and care. At a basic level, you need lots of rest and healthier eating. There are loads of tips on here about Tecfidera if you use the search. I take it too and believe me, as one of many DMDs it really is easy to accommodate as long as you take with the right food. The stages you are going through are very real and expected, and believe me, everyone here on Shift can relate to them, but we are all warriors and survivors. In my two years since diagnosis, I have been from pillar to post on a journey of fear, acceptance, fear again, sadness, then recovery and positivity. My husband and I were saying only this 𝘄𝗲𝗲𝗸 about how my diagnosis has led to us planning changes together which make us think in a way we have never done before. Yes, I feel a different person too. But actually, I am a better version of my previous self. So, accept all the help you can get, avoid Dr Google, feel what you feel, make little plans for each day. Don’t worry about the future, for now, you need to focus on making each day as good a day as you can. You have lots of support here and you will be OK x

2 months ago

Your poor husband?? He should be supporting you not leaving you when you need him most. I was dioagnosed late last year. I’m not the same person I was I’m trying to be a better person then I was. It’s tough I’ve cried more times at work this year then since I started there lol. Since my relapse I can’t do what I did before, my spoons are less.

What I’m saying is it will get better maybe write a dairy. I’ve also got a positivity jar so when something good happens I pop it in there. I used an old jam jar and write on back of envelopes. Your not alone, see friends and talk.x

2 months ago

I’m so sorry to hear what a tough time you’re having. Of course you’re not the same, after receiving a diagnosis, having a bad relapse, and experiencing the demise of your marriage. Your world has turned upside down and it will take time to reinvent yourself and envision a new and different future. Be kind to yourself. Mourn the loss of your old self, but know that there is still a lot of beautiful life to live after this period of life. If you’re having too much difficulty processing this all, there’s nothing wrong with asking for help.

2 months ago

What you are going through is so natural. We have all grieved and felt every emotion . Believe us one day you will reflect on your post and realise you have become a better version of yourself. Louise Hay How to Heal Your Life is a book i would recommend. Dont be hard on yourself this illness is a bitch. As for your husband he obviously wasn’t meant to be in your future. Karma hummm.

2 months ago

Thank you all so much for all your really kind words. I feel so much better emotionally today. Had a good talk with my husband yesterday and all is good. I just needed to blurt out everything and sometimes you just want someone else to take control. Sometimes you don’t want to be a grown up for a short while. I feel pretty stupid to be honest and a bit self indulgent. I’m back on track. Thank you again lovely people for your support xx

2 months ago

Hi @fiona_payne, glad you’re in a better place today. I’m still fairly new to this in the grand scheme of things and very lucky compared to most too. What I have learned is that talking is good. Venting is good to the right people who understand as much as they can what we are going through. Do not feel stupid for how you feel or how you handle it. We can be feeling great one minute then down the very next for no apparent reason. Its what makes us us. Hope you stay on the track. Steven.

2 months ago

My MS diagnosis actually changed me for the better, I live life one day at a time, I’m kinder to myself and take time for me and I appreciate the small things in life. It hasn’t always been easy, 3 years ago my husband walked out after 15 years of being together, partway through my diagnosis, he wasn’t happy so I had that aswell to deal with. I decided I was going to live life for me and the munchkins, I still exercise, take the kids camping, ride theme park rides and even took myself to Paris and Rome!!! Everyone handles their diagnosis differently and at first I was gutted when I googled MS, worst thing you can do as everyone is different, no two people are the same. I took life by the horns and I dare MS to come at me!! Take care of yourself, be kind to yourself and rest when needed, surround yourself with friend’s and family and don’t forget to smile and look for the rainbows always. X

2 months ago

You are all amazing inspiring people, I feel very privileged to have this site in my life now. Although I’m a new member I’ve been following it since last November…don’t think I’ll post too often but so many peoples experiences touch mine or equally touch my heart and make me grateful. ❤️

2 months ago

I can really relate to how you are feeling right now. In the beginning (diagnosed April last year) I went through all ranges of emotions and then when my neuro wanted me to start a DMT the fear and worry about side effects and will I be making myself feel worse than I already feel. The. I made the decision on taking Cladribine at Christmas time so far it is working well for me and I finally feel I’m doing something positive to help the person inside me recover to a semblance of what I once was I hope that once you start your DMT you will start to see a light at the end of the tunnel. Meanwhile…. you are not alone good luck with your journey xx

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