Hi everyone :-/

[Jennaxoxox]

I am newly diagnosed. I am 30 have 2 kids and partner, we have been together 11 years and have 2 boys who are 8 and 5. I'm finding all of this ms stuff extremely daunting and stressful.

 

It all started in June when I went to the Drs with numbness. It was found I was vitamin b deficient so I was started on b12 injections. I took these every 2 days and was referred to a neurologist. I was given my MRI all while continueing the injections. The MRI confirmed ms. I stopped the injections in November. I went from perfectly healthy, to registered disabled :-O

 

The uncertainty of this condition is just the worst thing ever for me. I am extremely embarrassed and hate people knowing about my condition. I am trying to get back to work but everything seems to take so long. Getting tests took forever, I mean don't get me wrong I know my journey is far shorter than many journeys but it still seems like forever to me. I don't want to seem like I feel hard done by but I really do. :-(

 

I know no one with this condition and the only thing people seem to know about it is the horror stories. I have slight tremors and am terrified that when people know of my condition they will notice and whisper behind my back. Terrified I may randomly trip and people will blow my being clumsy out of proportion. My partner is great never mentions anything unless I specifically ask. But my bestie is an absolute wreck, I have stressed her out to no end and I find that extremely upsetting, she tries not to say and tries not to pay too much attention but I've known her forever and I know it's hurting her. :-(

 

Any advice that anyone can offer me would be very much appreciated I don't want this condition to beat me. I want to be there emotionally for my children and basically need all the help I can get.

 

I hope no one thinks poorly of me for being so negative, but I have no where else to vent.

 

Thanks for reading my exceptionally negative and miserable post.

 

Jenna

Edited 8 Jan 2017, 10:46 am by Marina
Split text into paragraphs for easier reading :-)

[Nick]

Hi Jenna,

 

Your dilemma about telling people is understandable, something we have all had to face. The problem with MS when first diagnosed is that none of us really know where its 'all going' !! Only my opinion but I was glad that I decided to 'embrace' the situation and tell everyone. Most people get completely confused anyway when you say "MS" to them and simply, suddenly getting that 'disabled' label stuck on you is , with some people, very hard to take. Embarrassment is another thing I felt but this is something you have to work on with yourself and it really is completely ridiculous!!! (Honest!) Its all going to take time and once you understand more about your own MS then you will be able to do much more than you thought. At the moment you are stressed out (understandable) and stress simply makes the MS worse. Getting that balance right and working within your (new) but variable limits will make things look very different in a few months.

 

 

Nick

[Scully]

Hello Jenna

Welcome to the MS forums and boards.

 

Even when MS is suspected, that moment when the consultant says 'this is MS' is still a shock. I recall telling the consultant that he obviously had someone else's test results and scans, because I couldn't possibly have MS!

 

I got home from London, grabbed a duvet, took phones off the hook. And simply hibernated for a few days.

 

I then got angry. How dare I have this condition. I imagained wheelchairs and the pitying looks from family and friends..

 

Research followed for me then...hell, I couldn't even spell it at that time! Then I spoke to the MS nurse, who told me that only 4% of people with MS were full time wheelchair users....I decided that I was NOT going to be in that 4%.

 

The MS Society produce some brilliant booklets and leaflets. Particularly for family, and also some fabulous books for younger children, almost like a story book so they can understand all about Mummy. ( or Daddy) they are all free, and, if you call the MS society, who are all MS people as well, they will dispatch whatever you need.

 

They will also inform you of your local MS group, they are a lifeline. I refused to start with, because I thought it would be all people who were all desperately badly affected....how wrong I was! I took the bull by the horns, went up to a local coffee shop, where they were holding a meeting....Jenna it was so enlightening, about a dozen people, all affecting it different ways, we had coffee and cake etc.. and I realised, quickly that most of these people, were just like me, some working full time, some with small children..

 

Remember NOT to compare yourself to others with MS, we are like snowflakes, no two of us are effected in the same way. Most carry in a fairly normal life and basically, just get in with life.

Remember. That your treatments, when started, will help keep everything under control.

But most of all....when you are ready and have accepted the hand you've been dealt ( no choice really ) you will find that it's not half as bad as you think it's going to be...trust us Jenna...been where you are and got through it.

 

We, here can draw on our experiences and vast knowledge and will help you through this. We've got members here, who were just like you to start with....and we've helped them come to terms and just 'get through it' all.

 

When you are ready call the MS Society for booklets etc.. they are also experts in listening and helping you with whatever issue should may have, best physical or emotional.

Your best friend, your partner, even members of you family can call them for help and advice.

 

The MS Helpline is a free and confidential service providing support and information to anyone affected by MS in the UK. You can also use our confidential email service: helpline@mssociety.org.uk. We will respond to all emails within five working days.

Contact the MS Helpline

You can call the MS Helpline on 0808 800 8000 between

9am and 9pm on Monday, Tuesday, Thursday and Friday

9am and 7pm on Wednesday.

 

 

We are all here to help you along sweetie..

 

Scully

x

Edited 8 Jan 2017, 1:55 pm by Scully

[Skippysprite]

Hi Jenna

 

Welcome to the forum, the club that none of us would have chosen to join, but we are here, and try to advise when we can, but always willing to 'lend an ear' also.

 

It is a massive shock when told you have ms, so give yourself time, take one day at a time, and above all, be kind to yourself. Ms affects us all individually, so please don't listen to all the horror stories from people whose great aunt's cousin, or the like, will tell you.

 

If you have been assigned an ms nurse, they can be a great help offering advice, and pointing you in the right direction, or alternatively, try a local ms group for a chat or coffee.

 

It can be difficult explaining to people, but only do it when you feel ready to, at the moment you will still be going through the phase of disbelief, anger, frustration etc, but give it time and acceptance will come, and it won't be as bad as you think, honestly.

 

Hang in there, take one day at a time, and do things as and when you feel ready.

 

Pam x

[Jennaxoxox]

Aw thank you everyone has been so kind, given the post I wrote I didn't really feel like I deserved the responses given. I feel dreadful feeling the way I do but I just can't seem to get past it. :-( for me it's sort of if you don't admit it or say it out loud it's not real. The minute I have to say it or explain how it makes me feel I burst into tears I just can't describe some of the things it makes me feel and don't want to draw attention to my weak hand or slight tremors. My partner and friend have assured me they are nowhere near as noticeable as they feel but when people look I can feel it getting worse. That makes me hate this condition more, if makes me feel like it wants everyone to see and well I just don't want anyone to know. Will the embarrassment ever go away?! :-(

[Scully]

Hello again Jenna,

 

We don't judge anybody here Jenna. So please don't worry on our account about that. We are happy to listen and try to help where we can.

 

These feelings you have are normal and can be put down to shock.

 

Embarrassment is also fairly common, thinking people are staring at you...they aren't of course, it's just that you know something is different about you is all.

 

Perhaps it's understandably, being self concious rather than embarrasment ?

 

The first time I had to go outside using a cane to walk with as my balance was very iffy......I felt sure everybody was staring at me, and wouldn't have been surprised if it been report d on the local news!

 

You are still the same person you were before the diagnosis. Now, after the diagnosis you are still the same person.

 

Add into the mix that stress, can make the symptoms worse....that makes the stress worse....

 

From pre diagnosis to way after diagnosis has been described as a "roller coaster' of emotions....we just have to choose how we want to handle that ride...not easy, but you will.

 

Scully

Edited 8 Jan 2017, 5:41 pm by Scully

[Jennaxoxox]

Thank you for your kind worlds, I can't explain how much they mean right now. It's nice speaking to someone that knows. We are more than likely not even similar but you just know and that's one thing I wish I had more than anything someone around here that just knows. I know my feelings are normal and completely irrational. I'm just trying to get myself into a place where I can move past them.

 

I'm going to go to the Drs and see if there is medication that can help with the anxiety. I rarely sleep which is also not helping. Just seems like a huge battle I don't know if I have the strength to start fighting, it's sort of like ironing a massive pile, getting started is near impossible when you don't know where to begin :-(.

 

I won't let this beat me I just don't know where to start with getting back on track. I can't wait for my appointment with my ms nurse this month.

[Scully]

Some short term anxiety help may be good for you right now.

 

You're making progress already, when you wrote 'I won't let this beat me'...that's the way to go...then, little by little, one step at a time, you will look back and wonder...."did I really get through all that" !

 

MS nurses are great, they only deal with MS patients and so, 'have heard it all before' as it were. It's important not to hold anything back from her/him, for fear of their reactions....nobody is going to tell you that you are being irrational, or worse, silly..don't don't be afraid....I think I burst into tears with my first appointment....it felt good! She understood, recommended some coping strategy...and let me know that I could see her as often as I like.

 

You can take your partner or your friend with you...it's surprising how much they get out of it too.

 

Scully

Edited 8 Jan 2017, 5:49 pm by Scully

[Jennaxoxox]

Oh I will be taking my partner he's been brilliant threw all of this even in the moments I didn't deserve it. He's very interested in my treatment options and is looking forward to getting one started. I've chosen plegridy. I do rubbish with tablets so thought once a fortnight would be good :-/