Forum

What scares you the most?

Now I don’t want to be all maudlin, but I’m curious about what scares people the most about having MS. I think to most on the outside, it conjours up images of crutches, wheelchairs and the like, but strangely this isn’t what scares me the most (although it does worry me!).

My fears are:

Losing the ability to speak properly - my last relapse had my brain and mouth disconnected like I was drunk and trying to concentrate hard to get my words out, then what came out was either too quiet, too loud or slurred (or all three!).

Losing my vision - sight problems was my first symptom and I had to stop driving until it returned. With my kids going to nursery, swimming lessons and music classes, none within driving distance, this was a nightmare!

I guess it’s just a loss I independence fear really! I also worry a lot about how this will affect my boys - they’re so young (4 and 2) and still very dependant. I just want to be as well as possible for the next 15 years or so to be able to do what ‘normal’ parents take for granted!

XXX

Hi Emma,

My children were very young I had a 5 year old and a newborn and I lost my independence. I did find ways to manage as we had no family and all our friends worked. However please please remember that everyone is different. I answered a previous post and was saying that my friend is several years older than me has had ms for years and is still walking without aids for miles and hasnt had a relapse recently even under stress. It almost seems like it has burnt itself out. A Neurologist once told me this is possible. Also it is hoped that dmds will halt progression for many Ive never qualified for them as its been a slow progression from the start. Your children will love you no matter what, there will be ups and downs I cant deny that but you will get through them and find a way of dealing with things. Try not to worry about the future do what you can now with them and enjoy each day. Its a lovely age enjoy it. x

Thank you for your response. I guess it’s hard for any parent (with young children in particular) as you only ever want the best for them and MS doesn’t exactly fit in with those plans. I know I’m feeling particularly bad as we struggled for years to have our first child, I gave up work with no hesitation when I had him and dedicated my life to them both completely! Now I can’t be the mum I wanted to be.

The plan was to go back to work once they were both at school. It just feels as though my life plan has gone out of the window completely :frowning:

Hi Emma

My fear is a total loss of independence. With Optic Neuritis in both eyes at the moment, my eyesight is pretty poor and I am quite dependent on others now (which I hate!). So the thought of being totally dependant is awful for me.

My children are older (4 of them who are now adults) so I understand how horrible it is for you worrying about your young children. But I also worry that I wont be fit enough to help look after grandchildren (if I ever get any). Its different I know, but another of my worries nonetheless.

I fear never being able to paint or draw again and I fear never being able to drive again. Ah ha you have got me on a roll now :D I fear not being able to see at all.

Paula x

 

 

My main issues revolve around sensory problems and muscle problems, especially in my legs, right arm and bladder. Earlier in the year I found myself in a wheelchair and it got me really upset thinking - I want to have a baby soon with my husband. How am I ever going to push my baby around in a pram if I can't get myself out of this damn wheelchair!

Although I will take any physical problems as long as my brain continues to be as unaffected as it has been.

NB, regarding your last relapse, before I was diagnosed I had a short period of time where I really really struggle to find the words I wanted to say. I know that it happens to everyone but this was far worse. I just couldn't get it out. I didn't tell this to the consultant as I feared I would look like I was pushing for an MS diagnosis, especially as my brain scans have all been clear - only my spinal cord shows signs of demyelination and inflammation. Do you think this is possible even if your brain always seems fine on scans? At my next appointment I will bring it up.. 

Thank you Paula and Elle.

Elle, personally I would think anything is possible with MS - people can have completely clear MRIs and eventually get a diagnosis. I guess (and I’m no expert!) that any lesions can affect the correct signals getting through to where they’re supposed to be??? Someone will probably know for sure!

I can completely sympathise with the missing words - happens to me all the time now although I do get there in the end! I’ve also turned into my mother-in-law and now call people by the wrong names a lot!

I always try to stay positive and strong but sometimes I'm not strong enough. When I think about which bodily functions would I be able to manage without the answer is none.

If I had to say which one is my worst fear then its blindness without doubt, I've had two temporary attacks of complete blindness thankfully I recovered. The attacks have left a lasting impression on my mind and would hate to go experience anything similar again.

Many things. Being wheelchair bound. Losing my sight. Losing bowel/bladder control and worst of all -  my kids having to become my carer when it is my job to care for them.

Of course, none of those things are sure to happen but there is always the possibility as there is no 'one course' MS takes.

Anything is possible -  and that's what scares me the most, the not knowing, the uncertainty. It's like walking blindfold upstairs when you can't even see the next step.

I have fear of being ‘locked in’ afew weeks ago I woke in the night the whole of my left hand side was spastic and rigid unmovable, my right hand side was very heavy and unmovable also, except that I could move two two fingers but not speak, just totally locked in. I passed out with the pain and came round later with every.muscle of my body in pain
Its not the first time but definateley.the worst ever.
I’m worried this may become permanant, and not just a sleep happening

Frank

Hello Emma - now I know this is soooo easy for me to say but....... please try not to worry about the effect on your boys. I have had tons of ill health but you know kids just want a Mom who listens and loves :) My three boys have grown into fabulous chaps - very caring and capable. They could cook and keep house when they left home so their ladies think they are fab. We used to chat a lot and they are good communicators! They carried on with their hobbies and interests even though I was poorly.

I am undiagnosed but what I fear most is being a burden. I am slow now but I do get the jobs done albeit in my own time. I feel awful that I can not do outside paid work - though I do do some writing at home  for magazines which helps out but is nothing like my previous salary.

Our families love us just as we love them and if they were the ones poorly we would do anything for them - it's just harder to be the receiver than the giver of help, isn't it?

I hope this reads as I want it to - I'd hate to sound like I'm patronising you.

Much love,

Lynn.x.

I am scared that i will keep letting my children down.  I have had a rough few months and i feel very guilty when i cant keep up with their schedule.

I am also very scared of losing my sight as i have had ON twice.  This was before i was on the dmd though.  Not had it for 7 years  now but was very scary at the time.

Teresa.x

 

Losing the ability to speak,swallow and breath properly. I'm already experiencing some of these. I'm only 24 :-(

Sorry to hear that Jules . (((hugs)))

Its not all.doom and gloom, there are some promising avenues of research happening at the mo plus you.have the advantage of age.
Good luc Jules
xxx

Frank

thanks Frank, yeah but there is no support open to an undiagnosed person.

Thanks everyone for your responses…it’s nice to know I’m not the only one (although I wish it was none of us!)

Sight is definitely precious, and it seems a few or us have that same fear. I’m a planner and an organiser, so not knowing is hard. Thank you Lynn for your comments - you’re so right! I just hope my boys can be as wonderful as yours sound when they grow up!

And Teresa - keeping up with the kids’ schedules is hard when you’re not 100%. When I had my last relapse, hubby took time off work and was running around doing the nursery runs, swimming lessons etc. and quite honestly said he didn’t know how I had time to run the house as well! The housework went to pot lol!!! But at the end of the day, kids won’t remember a dusty house, only the love the got and the times that were shared.

[quote=“behappy”]

kids just want a Mom who listens and loves :slight_smile: My three boys have grown into fabulous chaps - very caring and capable. They could cook and keep house when they left home so their ladies think they are fab. We used to chat a lot and they are good communicators! They carried on with their hobbies and interests even though I was poorly. [/quote]

I LOVE this! :smiley:

Great post! Here goes....

 

I'm scared about losing my sight: writing, dance, my job all require me to have good sight. I don't know what I would do with myself if I lost the ability to see.

The next one is the ability to use my arms. The last few weeks I have had a few issues with my arms feeling heavy and getting tired when I use them at work. It's the next thing I really need to make a living for myself. The thought they might stop working was really frightening. I guess I've spent six years studying for a career I'm very passionate about, and working my way up the ladder. If I couldn't work or do the job I've worked my butt off to get to I think it would be a real knock. 

Last fear is not having anything heriditary - I'd hate for my children to have anything wrong with them. Not that I have any yet - but one day I would like a couple :-)

Reemz

X

[quote=“fluffy54”] I have fear of being ‘locked in’ afew weeks ago I woke in the night the whole of my left hand side was spastic and rigid unmovable, my right hand side was very heavy and unmovable also, except that I could move two two fingers but not speak, just totally locked in. I passed out with the pain and came round later with every.muscle of my body in pain Its not the first time but definateley.the worst ever. I’m worried this may become permanant, and not just a sleep happening Frank [/quote] Any advice would be welcome please Frank

hi emma

the thing that scares me the most is losing the use of my legs....enjoy playing golf and drive a taxi for a living so i really need my legs!..but here's hoping i stay relapse free..it's a lot to ask but maybe i will be

take care

baz

Frank, I don't know about anyone else, but I've not heard of whole body locking up and not being able to move at all...with pain as well, sorry.

It sounded like sleep paralysis until you said about pain with it.

Maybe someone else can relate. Is it a symptom of MS?