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Newly diagnosed and feeling a bit overwhelmed

Hi,

I was diagnosed with MS on the 28th March, after having, what the neurologist believes to be, my second relapse (I had my first last October but it was diagnosed as something different). I honestly don’t think it’s really hit me yet, I know that I haven’t really come to terms with the diagnosis. It couldn’t have come at a worse time really, I’m a third year English Literature student and I was supposed to hand my dissertation in this Wednesday, but due to my diagnosis and symptoms I may not be able to complete my final year now, I might have to do it all again next year.

I have been referred to the MS clinic at Salford Royal Hospital and I am waiting for an appointment with the consultant to discuss treatments. I am terrified of what the future holds. I am a person who likes to plan everything and to know what’s coming, and I feel that has been taken away from me. I am so angry right now, I feel constantly on the verge of a breakdown. I don’t know how I’m going to cope. I am so scared.

Hello and welcome :slight_smile: Have you told your department about all that’s been going on? You should find them very understanding, happy to give you a long extension on your dissertation and whatever help you need to finish your degree. If you have any difficulties getting help from them, see your Student Support Office (or whatever the equivalent is at your Uni). But start with your personal tutor, the member of staff that liaises with Stufent Support or the Head of Department. With regard to treatment: I’d recommend having a look at the msdecisions website. Getting from referral to first injection can go a lot quicker if the patient has already chosen one of the disease modifying drugs (DMDs) when they see the consultant. You’ve pinpointed arguably one of MS’s hardest things to deal with: the unpredictability. That said, life IS unpredictable, with or without MS.All types of people experience change, all the time. It might be as simple as the train being late and us having to revise our day or it might be serious, like terminal cancer, but change is something that we all have to deal with during the course of our lives. I think perhaps the difference with MS is that we now KNOW that our lives are unpredictable. And there’s a big difference between accepting that life is unpredictable and knowing that our life is going to be unpredictable. I do think there is a difference between planning everything and knowing what’s coming / being in control. A really brilliant organiser plans for contingencies and then calmly puts whatever’s necessary into action to deal with the new variable. That person is in control of how they deal with change, but they are not in control of change itself - no one can be. Which was a long winded way of trying to explain that dealing with MS means learning to adapt; to deal with change as and when it’s needed. So it’s fine to plan, we just have to be prepared to change our plans if we need to. Give yourself time to come to grips with it all. It’s not easy and at times you may feel you’re on an emotional rollercoaster, but you’ll be OK in the end. It’s amazing how well we adapt! And MS really isn’t the end of the world. It might feel like it right now, but it honestly isn’t. Karen x

Well, how bizarre! I definitely did not select anon!

Internet gremlins at work :frowning:

Karen x

Hello Leigherin,

It has been my experience that we can underestimate the understanding of universities in their willingness to support and help people who like yourself, me and i’m sure many others who are diagnosed with life changing health problems. I took the bull by the horns and discussed it and the support was excellent and allowed me to eventually achieve my goal. Our similarities believe me are spooky I became unwell with my first real onset symtoms with just my dissertation to complete on my degree and I too felt under more emotional pressure than I ever thought possible, not only was I feeling dreadfully unwell, I was working full time in a very demanding job and doing my degree. On reflection I believe I “lost myself” in everything that was going on, felt completely out of control and convinced myself that there was not one single person in this world who could help me.

There are people who are more than prepared to help trust me.

As a bit of a control freak, losing control was horrid and what I did was ( and it took a bit of practice I assure you) I took a step back and put everything that was happening to me into seperate boxes, that way I felt more in control of them and not the other way around because as soon as they began too start overwhelming me I put them back in the boxes until they acknowledged who “the boss” was. Or was it me acknowledging who the boss was, because I had quite forgotten it was actually me. So perhaps what I’m suggesting is step back a little and use the space that step creates to remember the great and controlled person you were before this happened, because they are still there and they will be your greatest allies alongside the others who are just in the wings waiting to support you at this time.

I’m a spontaneous person now instead of a “must have a plan!” person and those who love and support me understand that and in actuality it’s quite liberating.

Joysee

Uni have been great, work not so much. I have only been in my job since January 2012 and I have now ran out of paid sick days, I have to be off for four consecutive days to be paid statutory sick pay. This terrifies me as I support myself and can’t afford to have my wage reduced.

I just feel my whole world has been turned upside down and the diagnosis has been the start of a downward turn in my life. I have never felt so sad or isolated in my entire life.

Work may need to change their tune as they may be in danger of breaking the law. A diagnosis of MS automatically gives protection under the Equality Act. Amongst other things, this law states that employers must make reasonable adjustments to allow the person with MS to stay in work (eg different equipment, different hours, etc). I believe it also says that time off for relapses does not count as sick leave, but you would have to check that. I’m not particularly up in all this stuff, but you could try calling Access to Work for advice and, if there is a union, speak to the rep. Kx