Last reply 2 months ago
My week

I really don’t know how to even start this. And I’m even embarrassed to talk about it because I hate showing my emotions. But this past week has been so hard for me. My boyfriend of over a year left me after I told him I was diagnosed with MS. I really don’t know why he would do that, especially when I needed him the most. My family and friends has not talked to me since I’ve told them that I was diagnosed. I’ve been overwhelmed with stress because the next two week I have to do the VEP, spinal tap, EEG and blood work, along with my sons physical therapy that he goes to twice a week. And to add on to more stress I also have 2 midterms coming up the next two weeks. This is making it so hard for me to focus in school right now. I just feel so lonely and depressed. I feel like I’m going to have an emotional breakdown soon. This week has been so hard for me that I’ve lost over 10 pounds, which I really don’t know how. I’ve been eating and drinking plenty of water. I’ve been trying so hard to stay positive of everything, especially for my son. But I wish I had that one family member or friend to just give me a hug to give me some reassurance that I’m not alone doing this. I’m sorry sounding selfish and over dramatic. But its been an emotional week for me and I needed to vent.

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mlgilber1
2 months ago

I’m so sorry you’re going through such a hard time. A lot of my family and especially my friends ditched me right after I was diagnosed as well. I’m not sure why people do that when you need them the most. You do not sound dramatic or selfish at all. You have every right to be upset. I hope things start looking up for you soon. Try not to stress, which I know is harder that it sounds, but stress is horrible for people with MS. Best of luck!


sfrox
2 months ago

You don’t sound selfish. It can be uncanny how things tend to pile up. I don’t know why some people are faced with such burdens, but I think it is because we can handle them. I’m so sorry about your MS. It is NEVER a good time to have that laid on you. And the logistics of it are half the pain. It is very hard to be alone when you have such overwhelming things to face. Just remember, many people DO NOT understand what these things (MS) mean. If you’re able to ask someone for help with transporting your son or accompanying you to your tests, I hope you will.

It may take a while to get your health situation settled in terms of treatments and such. But since you have set up all of your near term appointments, now you just need to focus on your mid-terms and your son. The biggest thing I have learned since being diagnosed is to just clarify the priorities and focus on them, so my mind doesn’t spin out. Lists are so helpful at times like this. I am sending you big hugs. You deserve a vacation, but fate wants you to get a few more things done before that! DEEP BREATHS


rolly
2 months ago

You have every right to feel lonely and depressed, and you are definitely not over-dramatic!
I’m so sorry you have to go though this without getting the support form your family and friends, and not least your boyfriend.
It’s very common for family and friends to distance themselves after an MS diagnosis. They’re probably not doing this to hurt you, but I guess it’s some kind of mechanism for self protection, as they don’t know how to deal with the shock.
That this happens just when you are in need of their support the most, makes it a lot worse, leaving you to deal with the bad news (and the symptoms) on your own.
It doesn’t seem fair. And it probably isn’t.
The same with your boyfriend: He was probably so scared that he would lose the partner he knew, and scared about the unknown future, that he must have felt that doing a runner is the only way he can deal with this. A selfish and cowardly act, if you ask me, but – and you may not want to hear this – maybe better now than later on, when it might hurt even more.
As for your family, you should probably give them some time, until they have had the chance to process the news. You will find that you may have to be the strong one and educate them about your condition.
As for friends, you are quite likely to lose some of them in the process. Others may learn to accept your diagnosis and its implications and find ways to support you. And you will undoubtedly make new friends and meet people that you may never have met without the diagnosis.
I know it’s hard, and it may seem that everything and everyone is conspiring against you right now. But there will be better times as well.
I’m glad you opened up to us here about how you feel, although you usually tend not to show your emotions. It helps to talk to others who understand, and there is absolutely no reason to feel embarrassed about it!
I wish you luck and strength on this journey, and we will always be here to listen!


stumbler
2 months ago

@amber91 , never be embarrassed about showing your emotions. You can’t/shouldn’t bottle this all up. You need to talk about your feelings and your fears.

I can understand your family staying at arms length. They don’t presently have the knowledge and experience to deal with the situation. Given time, this will change.

As for boyfriends, you do need to improve your choice of partners. To turn and run at the first sign of a bumpy road is not a good attribute. If you had not have been let down now, it would have happened at some future time.

There are good guys out there. Make sure your next boyfriend is one of the good guys.

You need to let your school know of your diagnosis and the problems it is presently causing. They may be able to take steps to reduce some of the pressure that you’re under.

There’s some information about being newly diagnosed here :-

https://www.mstrust.org.uk/about-ms/newly-diagnosed

It’s from a UK charity website, but is still very pertinent. MS shows no respect for international borders.


cameron
2 months ago

I’ve had MS 15 years and none of its ups and downs have been half as bad as the diagnosis process. But believe me, once you get the definitive dx, there is real support. The MS nurses and consultant will basically show you what to do! Once you start getting your life back (which you will do), your thoughts and energies will be directed towards how best to live. Instead of stressing about what might happen in the future, you’ll be busy getting yourself super-fit and healthy. Any treatment you’re put on will be monitored medically (blood tests etc), which means that someone else is doing the important thinking. You can – and should – leave the worrying to them. You have a life to live. xx


chezy17
2 months ago

Hi @amber91

I’m sorry that you’re going through this all at the same time, a diagnosis or breakup is hard on their own let alone dealing with it together but you will get through it and you will manage it 💪!

I know this because I was you nearly 3 years ago, I was going through a diagnosis when my husband dropped the bombshell he wasn’t happy, and he deserved to be happy apparently. I was blindsided, I didn’t know any of this so it was a shock to me. We’d been together 15 years and had two children, never directly said it was my MS but I think it played a part. There’s not alot of positive stuff about MS when you look which is why after it happened, I was determined to stay positive and I have. I have my bad days but I always get back up smiling. Thing is, it shows you who really cares, so if someone can jump at the first sign of trouble they’re not for you!
Take time for you, work through your diagnosis and concentrate on yourself and your son. Surround yourself with good friends and family, you won’t always feel like this I promise 😊.

Take care. X


grandma
2 months ago

@amber91 Hi again, so glad you posted again. We’re always here for a moan,rant,cry,celebration,query, whatever floats your boat. Most if us have already gone through what your dealing with now, some of us more years ago than we care to mention. Someone is always here to listen, we can only send hugs via the airways, but they are genuine and meant. Keep your chin up, we’re all on your side.👂👏🙏🏻😍


vixen
2 months ago

Hi @amber91, most of us reponding may not be in the US but we truly understand and appreciate the loneliness that you are feeling. And as @stumbler says, a dude that was gonna go running at the first hurdle can keep running. ‘Jog on!’ As we say in the U.K. This is a character-building and life-changing phase that you are in now and will be, hopefully, a dark patch that you are going to move on from and put behind you. The phrase ‘deal with what you’ve got today’ is a good one; work out what it takes to get through each stage and don’t think about what life might be like in 3 months. OK, school need to help with your workload and midterms, as your health needs to be are school aware of what you’re going through, and could you get counselling? If it helps, keep contact with your fellow warriors here and post updates, as venting can really help. Wishing you strength and love, beautiful person x


amber91
2 months ago

@stumbler @vixen
I haven’t told my school what’s going on because I’m scared of being kicked out of the program that I’m in. I don’t want the director to think that my medical condition is going to prevent me from performing as a surgical technologist. I’ve worked so hard to get where I’m at right now. I have passed every term with academic excellence. I’ve put in hard work and dedication to this program, the last thing I need is to let it go to waste.


stumbler
2 months ago

@amber91 , I’m unaware of the American legislation regarding disability discrimination.

Perhaps one of our American members has a view…….please.


fingersandtoes
2 months ago

I’m sorry you’re going through a rough time. It will get better, trust me!

It sounds like the next few weeks will be tough but get through those and I promise you it will be ok. Your family must be taking time to process, it’s a shame they can’t be more there for you but I guess for whatever reason they are finding it too difficult. Give them there space, I know that sounds like a hard thing to do but it sounds like you are better off dealing with this yourself. Sometimes having family around means dealing with their reactions and their pain as well as your own. It takes a lot of emotional labour…

That said, talk talk talk! Talk to people who understand, people who are a bit further removed from your situation and who are less personally affected by it. Talk to your school, they may be able to give you extra support. Talk to your nurse. Get yourself referred for some therapy – at my hospital CBT was on offer to those who needed it. I ended up doing group therapy which was really useful. Get an MS buddy through this site if you can. Accept any and all help that’s on offer. And when your family and friends are ready to hear, talk to them.


mouse19
2 months ago

Hi amber91
I send you a huge amount of Courage and a huge hug 🤗
amazing advice that the lovely people before my post have written 🤗
My ex threw me out a week after my Mum died and I thought I would crumble but I didn’t and when you look back in the future you will think wow what a great escape you had 😃
Stay strong and be kind to yourself 🧡


dominics
2 months ago

Sounds dreadful. I imagine it feels awful. People are funny creatures and if you can hang tight and make it through this crappy time then you can face anything. When I had a ton of crap at university, relatively recently, they were fantastic with deferrals. You have to reach out to people that you may not even know and ask for help. You’ll be surprised at how good people can be.

There is a phrase I am fond of at times like this: Don’t let the bastards grind you down.

Really, really, you can make it through more than you can imagine. You have your lad and he has you. Do it for him as well.

Chin up.

Dominic


sam10
2 months ago

@amber 91,
I am working here for 14 years. I didn’t tell anyone about my MS (good actor yaa). If they know if not kicking me out, at least my schedule will be change to worse.
Keep fighting.
@stumbler, hidden discrimination is everywhere.

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