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What are you scared of?

I’ve only recently had ms thrown at me and I’m scared of what the future holds naturally. I don’t know if I’ve gone completet overboard eg irrational fears or is there a real genuine reason to be scared. I could write a long list of my fears, just some of them are, loosing my partner, him not seeing me as the person he once met and having to potentially deal with a disabled mess. I’m scared of loosing the ability to speak as my speech has been affected. Scared of being hit with another relapse and how it may leave me. Scared of loosing my job and a monthly wage to pay my rent. Scared of becoming immobile. Scared of my partner not wanting me in a sexual way because I don’t appeal to him anymore. Scared of it becoming a mother and being able to be a good one and possibly passing this onto my child if I ever have one. Scared of how I’ll be in 10, 20, 30 years time. The list is endless, what are your fears and did you feel like this?

To be absolutely honest, sometimes I worry about absolutely EVERYTHING and then other times I find myself just sailing blithely through everything without a backwards glance.

For me, there is a fine line to be drawn between being sensible and realistic on one side and spiralling into depression and complete emotional paralysis where you can’t do anything on the other. It’s a tightrope we are all trying to walk and, as I can’t walk in a straight line at the best of times, it’s not easy

At the moment I think (hope!) that I am managing it most of the time and friends/family seem to think that I am doing fine and that I am “incredibly cheerful” but I do have serious emotional wobbles which only my husband (and the dog) see. I am incredibly lucky in having a fantastic husband who has proved to be a fantastic support since DX (unfortunately the dog gets jealous when husband hugs me rather than him so that gets a bit difficult!)

To use that old self-help book cliche you have got to “feel the fear and do it anyway”

I was scared of becoming completely disabled when I was told I had MS by a stupid ward doctor at hospital who had ‘jumped the gun’ according to the neuro who then told me I had had a clinically isolated episode. Of course I then went and read up on MS and was reassured a little that not everybody ends up in a wheelchair. So when I was properly diagnosed 3 months later it wasn’t quite so bad although the fears were still there. My first symptom was slurred speech so that one does worry me a bit but again I push it to the back of my mind. If it happens, I’ll deal with it at the time.

Now I attend local MSS meetings and chat to MSers who are in mobility scooters and the thought of ending up in one doesn’t scare me so much as I have seen how happy they are. I also don’t dwell on that side of it so much. I firmly believe in living in the present and while I can still enjoy a reasonably active life I’m determined to do just that. This year’s been a bummer thanks to two relapses but I’m still not too down hearted. I can still walk, just badly, and it amuses me to look drunk when I know I haven’t touched a drop, ha ha!

I think each relapse makes me more grateful for all the things I can still do and focuses my mind on the positives in my life instead of thinking of the ‘what ifs’. I find that the best way to cope.

Tracey x

Hello there,I think we’re all a titchy bit scared,but you should live for the day and have one eye on the horizon.Many peeps myself included,"have done things while I still can,"I had a few bob when I was pensioned out of the Fire Brigade,so a boat,another kit car,Chicago,Canada and a divorce.I know I was very lucky,but it all went a few years back.Not a single regret,apart from the divorce,but there was nobody tough enough to knock our heads together.

Be lucky,

Wb

i dont worry about the ms, what happens, happens.

i do worry about losing this house and what will happen to my 2 grown up sons and my husband because they have all relied on me so i feel responsible.

then again, its not my fault!

“… don’t worry about a thing, cos every little thing is gonna be alright…” bob marley

When I was first dx I had lots of fears. I remember moaning (to anyone who would listen) that being in a wheelchair with dodgy eyesight that prevented me from reading would be the end of me. Well, 20 years later here I am sitting in a wheelchair with terrible double vision. Anyone who knows me will tell you that I am madly in love with my wheelchair and I am addicted to audio books. Life changes – and you will change with it.

WB talked about “doing things while you can” I must admit to doing a lot of that myself. I was so afraid of a time when I might look back and think that I had wasted the walking years . MS can be a wake up call to make every day count. Don’t spend your time worrying about what might happen in 20 years or even in 20 days. Put your energy into getting the very best out of THIS week.

Jane

Not being able to work scares me more than anything. I absolutely love my Job, love having a career, love the independence. I suppose I worry about my husband’s feelings, as he’s told me he’s not ready for me to decline further (new symptoms/been more affected this last 7-8 months), and I wouldn’t want him to be my carer. He has an almost child like view of the world, and while it’s frustrating at times, I wouldn’t want to take that away from him.

Hi! When I was first DX ed I went into shock! Then after a few weeks I took a good look around me and read lots of stuff on this site and I sorted my head out a bit! Of course we all begin by thinking the worst as most of us have only come across people who are in disabled in a way that is so obvious. Now I am trying to let people know that there are many faces of MS and it’s not all doom and gloom. When I told a woman the other day that I had MS she looked shocked and said, “You look so normal”. I told her I hoped I was more interesting than normal! Haha! I guess it’s early days for you and you will need to get lots of information and try to get through this bleak feeling but there is light! As the others have said just go on and live and enjoy each day as none of us knows what the next few years will bring. Enjoy everything you can and remember you are a special and unique person who just happens to have MS. Big hugs x

I didn’t mean to be anonymous there Haha. Phonebox

Oops lost my post to you! When I was first Dxed I went into a case of shock. I remember not wanting to go out or talk to anyone. It was an all consuming worry. I thought if I didn’t talk about it it would go away. Then I started finding out about the condition and talking to others on this site. Information made me realise that there are many types of MS and my kind would be unique to me. The consultant was not very helpful and quite matter of fact but then I met the MS nurse who was a voice of reasopn at last. She was lovely and I took my hubby who was a bit shell shocked like me. I hope you will get a handle on what MS means to you as we all are affected differently. You will become the expert in your case. I get frustrated with those close to me sometimes as they forget I can’t do the stuff I did before as I get so tired. I just count to ten and explain again. As the others have said take one day at a time, be very kind to yourself and don’t worry about things you can’t do anything about. I changed my diet and gave up sugary stuff which made me feel better and gave me some control over myself. That worked for me but you will find just the thing to work for you. Take care

Give yourself some time. I went into shock for about a month! Then I filled myself up with information and chatted to people on here. That helped. Be kind to yourself and try not to worry about things you can’t control.

Hi

Those are all perfectly natural fears - the future with MS is a big unknown, and the unknown us always scary becase we fill in the gaps. It’s the same as kids being afraid of hte dark - we can’t see, so we imagine all kinds of monsters lurkng there.

In terms of being afraid of losing your fella, something I think that will help is to find & choose those things that bring you life and energise you. that you love doing. Then, rather than only bringing need into your relationship, you’ll be bringing a spark & energy. If you only look to your boyfriend to fulfill all your needs, then he could feel the pressure from that, and the dynamic of the relationship could change so it becomes more like a carer & patient rather than lovers.

Something you may find that happens to both of you is that you grieve the loss of your pre-MS life. Things like denial or anger or depression are all classic stages of grief. They’re all normal things to feel, and they can pass with time. So if you find you’re feeling angry a lot, that doesn’t mean there’s something wrong with you or you will only feel anger for the rest of your life. Clear communication is important, and don’t try & force the other out of a stage. They need to be felt, and are an important part of coming to terms with MS, and rebuilding your life and moving forward. Remember, life with MS does not mean life is over. It’s just taken a different directoin.

Dan

Hi, as it is still early days since your diagnosis, you still give yourself time for it to sink in.

Even when you think it has, there may be days when it jumps up again and upsets you.

Thats what happens to me sometimes. I can be going along dealing with daily life and then bam! Theres something else I realise I cant do and it seems to magnify the fact that I am disabled and will never get better.

This is all quite normal when we are hit with something so serious. We all have fears. Sometimes we can hide them away, but not always.

We have to find a calmness somehow, or it will tip us over the edge.

I believe in talking about our feelings. In fact ive just posted a biggy for me on el.......things Ive been trying to hide for a while.

So whenever you find yourself really down or worried about something, bring it to us, we`ll do our best to support you and carry you til you feel a bit better.

My biggest fear is losing my hubby of 42 years!

luv Pollx

Losing my eyesight scares me - I love to read and if that was taken from me I would be very depressed.

Bu losing my ability to think is the big one. I was never a delicate pretty child that everyone petted but I was a clever precocious wee madam and if I’m honest I used that as my armour (my brother was always the favourite child in our family). Losing that scares me more than any physical loss.

JBK xx

I think my biggest fears are financial. Would hate to be in a wheelchair / mobility scooter but am lucky to have an incredibly supportive husband. Already promised to push me up Macchu Pichu in my wheelchair if need be (it’s on our joint bucket list)! He’s currently working part time / home dad and I do worry what would happen if I couldn’t work full time. It’s a struggle now. Both kids under 10 so it will be a while before they’re independent - if ever! I veer between ‘can’t afford it’ and ‘sod it, it’s only money and you only live once - who knows what the future holds etc’. Guess you’ve got to live for today and don’t sweat the small stuff. Remember to include lots of cliches too… Xx