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In Denial and Alone. First ever Post!!

Hi. Just turning to here is making me upset! Just really need to share and feel like someone may actually understand! This is my first post and I'm doing it out of desperation really. I'll be as brief as I can: 4 years ago and with no previous symptoms or warning I found myself completely paralysed on one side. Big traumatic event as I was rushed into to A+E for suspected aneurism/stroke/brain tumour all the things your ready for at 26yrs old. Gained use of my limbs back quite quickly but suffered with terrible spasticy/spasms etc for ages every time I moved. Took 18mths to recover, and they told me I had lesions like MS but a percentage only ever have one attack so would only diagnose if it happened again. Well, a year ago i felt same 'attack' sensation but suffered diff. symptoms like the MS hug and vertigo. I had a regular annual check up the very next week and decided to not report anything. I figure that if I could recover, and live a normal life for a bit longer then whats the point in being 'labelled' early and have to declare it? I really do believe if i can delay diagnosis I can carry on like a 'normal' person and delay people thinkin bad of me etc etc. One problem though. This means I am completley alone. Even my family that know about the second don't seem to even care that I am completely shutting down from the world. Other peoples trivial self-invented problems wash over me and I am really starting to worry I might be depressed. Done a couple of crazy things lately as I turned 30 and felt like I've been robbbed of the last 4 years of my 20's just coping alone and in turmoil (with constant mild weird symptoms.) What do I do? I don't want to tell anyone as I really feel I've physically recovered ok but my depressed/self-isolation/constant cryin alone is starting to take its toll. I'm also really angry that the people around me won't let me talk to them as they are so self-involved and just don't seem to care that I really am desperate for help. I'm so scared/upset/angry and completely alone with this and am starting really worry about my state of mind. Any suggestion as to how to cope better will be really appreciated. Thank you x

Please go see your GP. You may be depressed but you are not alone xx

I think that we can a instinctive, unconscious ability to judge what we can deal with at any one time.  It is a kind of sanity-preserver, a safety valve that protects us from information that we are just not ready to deal with right now.  Denial is another word for it, and I personally think that denial is underrated as a coping mechanism.

Maybe denial was what you needed, and maybe that has done a good job for you until now.  But it does sound as though its drawbacks are now outweighing its benefits for you.  It sounds as though you are entering a new phase of dealing with the fact that there might be something physically the matter with you.  Look, you have nothing to beat yourself up about here.  None of us swear an oath to tell our clinicians the whole truth and nothing but the truth.   Maybe the usefulness of keeping mum about your second attack has run its course.  Time for a new approach, and that's OK.  Your neurologist is not going to throw up his/her hands in horror and say, 'You LIED to me!!!'  They know how difficult this stuff is.  If you decide to open up about your symptoms, in your own time, and on your own terms, that's OK.   

It also sounds as though you have learned (in a hard school) a lot about the pain of feeling isolated, and how hard it is to get through with not much around you by way of understanding or support.  That's tough stuff, but all learning is good, and I am sure that you understand yourself better than those around you understand themselves - they're too busy losing sleep about their nail polish being the wrong colour. 

It really does sound as if you, having exhausted the alternatives, are ready to move on and look your physical problems in the eye.  That sounds to me like a good place to start.  Once you have a clearer idea of what is the matter with you, you can start to engage with it, and get on with living your life, tapping into understanding support when you need it, and taking back some control without the lurking feeling of something unacknowledged, simmering away in there.

Good luck.

Alison

x

You are definitely not alone. Sometimes people are scared of things they don’t know about or just think you might not want to discuss it.
When I was diagnosed with epilepsy (massive denial there it took almost crashing my car for me to finally admit there was a problem) people fell into 3 categories. There was arrghh epilepsy she must be a freak and they disappeared from my life, then there was we better follow her round with a mattress just in case they drove me nuts but they meant well. Then there were the people who saw me as just me.
I guess what I’m trying to say is the process is long and scary but I came through that stronger and knowing who I could rely on. Now I’m doing it again.
People here are amazing and there is always someone to give advice. Take care
Xx

Dear Anon,

Let me just say ditto! I too had exactly the same thing happen to me - I was 20 years old at the time - rushed to A&E with a suspected stroke... paralysis of the complete left side of my body - lesion on the MRI showed but I recovered quickly with nothing for a few years until a weird attack of something like a nervous and physical breakdown - ruff symptoms and weakness etc.. thought i was having another stroke but it didnt happen like the first. Went for another MRI - they suspected MS then as another lesion showed. I was offered tests - I declined I was about 24ish at the time. I was in denial and let me tell you MS and stokes have  haunted me ever since... the fear can be so comsuming at times. But now in coming up to 40years old this year and I am finally taking the bull by the horns and having more tests to confirm or rule out MS... and whats more is even though im scared ********* I am finally ready to face my demons either way. If I could have chosen again I would have gone through with the tests earlier. I dont know if I have MS yet but I know that soon I will know and either way I can move on from my fear of the not knowing.

You need to decide whats right for you now, but whatever you decide make sure its for the right reasons and dont spend the next 20 years in fear like I have done!

Chelle x

anon you are not alone but you do sound low, have you seen your gp about how you are feeling? if not please do, pick the gp in the practice that you think you can talk to and when you book the apt ask for a double apt time that way you won’t be rushed.

try some cognitive techniques so try not to concentrate on the time you have lost but think about the many years you have to live. plenty of time to do loads more crazy things in fact the older I get the more crazy I get! if you need some help with turning your thoughts around pm me.

you can do this denial is a good coping strat as long as its working, please be kind to your self and think about some alternative therapys to help you relax, reflexology?

best wishes xxx

I would agree with Alison's post here. Although denial is sometimes a great coping tool in the short term it sounds like you developed a coping mechanism that has now run it's course and is no longer useful to you. It sounds like you do need to move on to the next step, whatever that may be for you.

All I can suggest is maybe ask your GP for some councelling?  It can really help to talk to someone with no emotional investment. They don't know you -  you don't know them. Being where you are now is not doing you any good.

 

I'm not sure what you mean by people thinking bad of you...

Yes, being alone is a very scary place. It's fine while you WANT to be alone but when you DON'T that's when things get tough.

You do sound very down. I hope you can get some help. Don't worry about anyone else. Worry about you.

Jo

You've already had some great replies, so I don't have a whole lot to add other than welcome :-) and that I hope you go and see your GP and ask for some help.

I think I should add one other thing: getting a diagnosis usually brings more positives than negatives. You have something to tell people to explain things. You have the opportunity to get meds and treatment to make symptoms much easier to live with. You might potentially get meds that reduce the risks of more attacks and progression. You also get much more support. So although it makes everything very real, a diagnosis is not generally a bad thing. After all, your body doesn't care what it's labelled with - it will continue doing what it's doing no matter what. You may as well have some help to fight it rather than deal with it all yourself?

I hope you get the right help very soon.

Karen x

Hi Anon and welcome,

You are most definately not alone, you have all of us to talk to and we will listen. As Karen has said you've already had good advice and I strongly urge you to see your gp and get a referal. Don't shut yourself off from people who know you, you need their support.

Janet

x

Hi and welcome, you have been given some good advice by the wonderful peeps on this site. Take care and feel free to moan, hope you can get yourself in a more positive place soon Karen

Hello xxxx what a horrible worrying situation to be in x

you need to start a new post though so people will see it and give you some much needed support and advice and/or there is also a carers forum - probably lot’s of prople who have been through what you are going through now xxjenxxx

What a horrible stituation to be in, I feel for you! It's certainly helped me to come on here and have a wee vent... I would suggest that you do go to your doc though, having a chat on here is all ever good and does help to see that someone as read and even gone to lenghts to reply, but thats all anyone can do, the really problems won't go away without your doc.... I felt daft when i told my doc about my symptoms, a bit of a fruad because like you they are mild.. but even though they are mind my doc did not mess around, reffered me to a neuro and even they didn't mess around, i have to go for a mri lots of other tests and a lumber. yes its all very scarey especially when your dealing with so many other issue's because like you i also suffer from depression all be it mild, it effects me all the same.... But my point I really want to make is that the med's for ms do help folk and the sooner you start on them if thats what it is then the better.. My image of ms is of my grandfather who was wheelchair bound and very bad.. the neuro doc told be that if i have ms my life doesn't need to be like his because of the med's.. 

please don't leave it, make a appointment, i'm pretty sure you'll feel so much better just saying it out loud to your doc. I know I did..

good luck 

andrea

x

Please believe me - MS is NOT the end of the world. People with MS generally live into old age, although on average they live a little bit less than people without MS (I’ve read 4 to 7 years less). Most people do NOT end up in a wheelchair all the time.

The very best thing you can do is allow your daughter to off load. She will be terrified too. Just let her talk, and give her hugs when she wants them. Basically just be there for her - so she knows that she can phone you any time she wants and that you won’t judge, you won’t freak out, you will just listen and help in any way you can. Finally, believe her no matter how crazy her symptoms might sound - most MS symptoms are invisible and some are almost impossible to describe!

As you both begin to realise that MS actually isn’t as bad as you first thought, life will get a lot more normal again. It will have changed, but it can still be good!

If you want to research MS, then stick to booklets from here and the MS Trust websites. Please remember though that MS is massively variable. Your daughter could end up having really mild MS and only a fraction of the possible symptoms (incidentally, no one gets all the symptoms talked about in the booklets!) so don’t go rushing to prepare for something that might never happen! Don’t shove all the info on her either - you could tell her that you wanted to be able to help as much as possible so you went and read up about MS, but don’t start telling her all about it - wait until she’s ready to talk about it WITH you.

Wouldn’t be a bad idea to tell her about this site though - it gives a huge amount of support to many.

Hang in there! It really will be OK.

Karen x

Hi,

Poor you, your post has made me a bit tearful as I can identify with what you are feeling. I've just been diagnosed but there is still part of me which is saying " they have got it wrong, it is not ms, it could be this that or the other". I go from day to day thinking that if I don't do anything it will go away then the next day I will say to myself,, right, that's it, I'm going to accept this and start to get proper medical help to try and make things easier.

I've done the same as you, tried to make myself think that my symptoms will get better and that I don't need any help anymore but then I'll come crashing back down to earth when they flare up again.

It seems to be very hard for others without ms to understand what we are going through, what they cannot see they find hard to comprehend and probably feel  at a loss of what to say or do so they try to avoid the subject and therefore (to us msers)appear uncaring. I wonder what I would be like in their position.

You say that you want to talk to people about your problems but at the same time you don't want to tell them as you don't want to be labelled. You are fighting yourself here and putting up a guard, maybe it is time to sit down with your nearest and dearest and tell them straight that it seems likely you have ms and that you need their help.

Please don't feel that you've been robbed of past years, you know deep down that it won't bring any of those years back and you must now try to look forward, you're still very young and you have loads of years ahead of you. Ask your GP to make you another referral to neuro, Tell him exactly what's going on as to me it sounds as if you may have rrms and the dmd's which are available to so many people on here have made them lead a " normal " quality of life again. I'm a heck of a lot older than you and my views on my own progression are different to what I feel you could acheive.

You are not alone, the people on here understand what you are going through, as they suggest, you need to make an appointment with your gp as a first step to get that referral and maybe to get a mild anti depressant to try and get you through the more difficult days and to help you think more calmly.  I'm sure you and me and a load of others in the same position will learn to cope with this in time.

You take good care of yourself XXX

Anne-marie

 

Hun i feel for u i really do. i AM 26 and was diagnosed almost 5 weeks ago now. Yes it was horrible im not going to lie but in a weird way its a relief cos it means that i wasnt going mad and now i know what i have and can move forward with things. I would recommend you get some help and go see your neurologist to get a diagnosis as it will really make you feel better in the long run xx

Thank you so much to all of you for taking the time to give such a personal response. I had a big reaction to just posting this, and as a result have realised the full severity of my denial. You are all so right, I do need to start dealing with this and have decided to make an appointment with GP. I have also decided to share this post with my family, as it will really help them understand what I've been going through (I have to admit I'm a closed book when it comes to this stuff,) and think in turn this will help me. This has been a major step for me, I wish I'd done it a long time ago as this is the first time anyone has said anything to me that makes sense as you all clearly understand how I feel. Still horified at the thought of seeing any professional, but this has helped me realise I really have run out of options now. Thanks again. xx

Dear anonymous

though I haven't replied as yet I have been following your post. I'm so glad you've found the support and strength you needed to move forward and try to get some help. It's a big decision but a step in the right direction. I'm sure you're going to have lots of questions along the way now that you've opened yourself to the idea of help, so remember we're always here.

I'm sure your family will understand and come to terms with things. Who knows it may even be the making of yours and your daughters relationship.

Good luck. Keep us posted.

Reemz

X

 

Hello Anonoymous,

Your first post made me cry. Feel for you so much.

Am so glad you have had the idea to show your family this thread. It's a great idea if you don't know where to start; you already have by telling your story and sharing your thoughts and fears on here.

Trust me, once they know your fears, you will be able to share those fears, which does make things easier.

When my symptoms began, I researched on the web and suspected MS but did not share my concerns. Once a doc also suspected MS and I told immediate family, they were shocked at the possible diagnosis but also they started to realise how much I was suffering and all ralied round like busy bees, helping me in any way they could.

Once diagnosed, I told more people in my life and I must say, they have all been fantastic. I found life so mush easier once everyone knew.

You may or may not have MS but whatever it is, the love and support by those around you, will help you deal with it.

I wish you well.

Clare