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New diagnosis = World crashing around me

Hello, I don’t even know if this is how this works or if anyone will see what I’m writing. I really feel like my world is crashing down around me.
Where to start… I’ve been two and from doctors for the last 18 months, cause I cannot walk for longer than 5 minutes without my right leg feeling like it has a ball and chain attached, that I’m dragging along.
I have just finished University after having to repeat some years so I’ve finally finished and get to graduate, which is amazing and I’m very proud of myself.
Then I started with blurred vision in my right eye. A trip to A&E and the eye hospital confirmed its optic neuritis, that’s caused swelling on the optic nerve. An MRI later that day confirms swelling on the brain and lesions on the brain which is caused by MS. But a lumbar puncture will confirm diagnosis completely. They sent me home with a course of steroids. That where horrendous, that stopped me sleeping, caused heart palpitations and had no affect on the blurred vision. 3days after finishing the steroids I started with awful pressure in my shoulders, neck, chest and back. In which an ambulance was sent for me. The paramedics said I am suffering mentally. And I’m not physically in pain, which made me cry. For them to say the tears are evident that I’m struggling with processing my recent diagnosis. They left and then had an out of hours doctor appointment. Which ended up with me being admitted to hospital for two night. The pain was MS hug. I had a CT scan and there was concerns of blood clots which luckily where dismissed.

So now that your caught up I would like to ask if what I’m feeling is normal. My head is reeling. I don’t know what I’m most worried about. I keep getting like a wave of sadness that takes me over and I cry and cry. I’m arguing with my partner over nothing. And he’s been nothing but amazing. But I’ve given him a get out clause so he doesn’t have to stay with me and all my crap. He said he’s never going anywhere.
But the main issue is I don’t know why I’m so sad. Or should I say I don’t know what specifically is making me sad.
There’s so much more to this story which is my life like I’ve stopped smoking since being in hospital. Whilst in hospital I missed an interview with an amazing company and there has been a death of a dear friend. So that’s it that’s where I’m at.
Thank you for reading

Lulabella84,

I am really sorry to hear that you are feeling so overwhelmed. It is pretty normal to feel so swamped by such a significant diagnosis. I think the combination of MRI and Lumbar puncture is needed to try and rule out other neurological conditions. No two people or instances of MS are identical, so there are no certainties either way. Right now you are faced with a vast number of potential issues, and you are trying to work out your responses. Quite simply too much to think about. I suggest that you try to reduce the number of issues you are thinking about (so easy to say and so difficult to do) One thing I always suggest is that you should establish a trusted team of family/friends/medical professionals who you can turn to in order to share out your worries. The other thing I say frequently is try and learn to listen to your body, so that you know when stuff changes and you can work out what are your safe limits or boundaries. Do not be afraid of getting scared or angry but do not let fears or anger last too long or take over. With regard to your partner, how would you react if the roles were reversed? Like many things in life we don’t know until stuff happens, how we will respond.
I wil shut up now as I am starting to bore myself! Wishing you and your family all the best
Mick

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You’re very normal! You’re dealing with a lot of different issues and don’t have a chance to “get over” something before you’re zapped with yet another loss. You’re grieving a number of different situations, so of course you’re going to feel overwhelmed.

Try to isolate each item for a bit. Recognize that you are crying over your friend and think about the good times you had. Then focus on the lost job opportunity. Think up the negatives that would have been involved in it and assure yourself that another will come along. Then look at your partner and what you love about him.

Break down all of the things that are bothering you right now and take the time to see them as individual issues. It sounds strange, but it’ll help you put everything in perspective. Don’t let yourself be overwhelmed by thinking of everything all at one time.

I pretend I have a chest of drawers in my mind, and each issue has its own drawer. I make a conscious effort to put them all away, and then I take them out one at a time when I’m able to deal with them. Sometimes I’ll start thinking about something and realize “Nope. Not a good time for this. Go back in your drawer while I find something else to think about.” It takes time to start thinking that way, but it’s become second nature to me now and helps so much.

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Hi, it’s difficult to get one’s head around it, I know. Your partner sounds like a diamond, and personally I think love is a wonderful thong. Have you had your lumbar puncture yet, it takes up to six weeks or so to get the results, as the spinal fluid has to be sent off to specialist laboratories. Finally I don’t know if you use Instagram, but it’s a wonderful place to talk and there’s some amazing couples telling their stories. meyouandmultiplesclerosis are a wonderful couple from Scotland who tell it as it is every day! Good luck Ferry

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Hello Mick.
Thank you for your kind response.
I feel like I’m putting on an act to the outside world of being this normal happy, bubbly person.
Yesterday I got my official grades from university and I felt nothing, I’ve worked 7 years in education to get my degree. I should be elated. But I just feel nothing. I’ve been put on some antidepressants, that I’m yet to take. I’m so overwhelmed with everything.
I went for a walk to try “strengthen my leg” which resulted in my being in pain for the rest of the day. And this blurred vision hasn’t cleared at all. I don’t know if I’m to be concerned about that. I know it’s caused by optic neuritis. And I thought the steroids would clear the blurred vision, but it’s a constant issue. The hospital didn’t seem concerned so is this something I’m just ment to live with.
Wow sorry, here I go again waffling.
Can I ask do you have MS? If so how are you? And how does it affect your everyday life?
Thanks again for the reply
Lulabella

Thank you I will try that, it’s just the sadness and the brain fog that is really getting to me. I’ve gone from someone who doesn’t like fuss at all. I really don’t like to be fussed over. To then feeling left out because I’m ‘ill’. And then getting sad about it. I’m doing my own head in really.

Ohh I’ll have a look on Instagram thank you. I haven’t had the lumbar puncture yet, I’m still waiting. I was told I would have an a within 7-10 days and it’s been 18 days but I have been in hospital in between so I don’t know if that has affected my appointment.

I’ve started again today with the MS hug. Have you ever suffered from this. I’m just wondering if it’s normal to come on again less than a week since it stopped?

Lulabella,

I think many if not most people try to present a happy positive side of themselves, this is why we say “fine” when others ask how we are doing, when “flippin’ awful” might be closer to the truth. Sometimes when my close friends ask, I give them an option “do you really want to know?” They are honest enough to say yes or no depending on how they are feeling.
Congratulations on your university results, you will (at some point) find space and time to appreciate the results of your efforts. I was far too lazy and not bright enough to get much in the way of qualifications. As for antidepressants, I have no knowledge or experience, although I have heard both positive and negative reports from people. I totally get the exercise to build strength idea, but it can be very easy to overdo stuff with other detrimental consequences. My neurologists opinion was “whilst it might be better to over rather than under do things, do not over do things too much” It is all part of listening to your body and allocating resources with smart priorities. Steroids are used to assist the normal healing processes of the body, and again there are no quick fixes, so you will need to be patient. (This is coming from someone (me) who said " If I had a chainsaw I’d cut the xxxxxy thing off about my suboptimal leg. When I got really down about my MS problems, I thought about people I knew who would chew their own arm off to be as well and lucky as me. It is all relative but this does not diminish from how you feel at the moment. I wish that we could share the burden until you are stronger. I do think you need to communicate with your partner in total honesty. As a bloke I know that we want to fix things or provide solutions, this is not always the right way, so if you just need him to hold you and tell you he cares, tell him.

As for my MS, I have had some massive issues, some smaller ones and then remissions to about 80% of the previous state. After many years with RRMS and a couple of hospitalisations, I got back to full time work, international travel, skiing, motorcycling for a number of years. Then I moved into SPMS but the rate of changes has been really slow, so I feel pretty lucky. Just saw you asking about MS hug, I found some deep breathing exercises really helped. All the best
Mick

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Hi LulaBella

I’ll add one small (but hopefully important) point to what others have raised.

This will pass!!!

If what you’re experiencing is MS then the chances are the relapse will pass and you’ll start to feel better. It’s hard to remember that when you’re in the middle of a relapse. A few days ago I was really struggling to walk and now I’m doing much better.

The emotional impact on you (which is entirely normal by the way) will also get better. I know it’s hard to believe that right now but it will.

Take Care

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Thank you. This has made me feel a little better. I’ll get through it then. I’m looking at it like this is the worst I could be and things will get better. I’m struggling with my legs today too. Who’d have thought at 36, walking would be such a problem

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