As a person in limbo, knowing another attack will happen but not sure when (feeling like theirs evidence in my brain that would prove all is not right) is the fact of never going to be well again. I’m sure you all felt like this but when you once use to be a healthy person if ever anything was wrong you could pop a tablet at home or a prescription from a doctor & all would be right again. I hate it that I will never be well & ms will only make me deteriorate. The news I’m going to receive from medics is never going to be good news & it’s all downhill from here. To be faced with a lifetime of bad news & deteriating body & mind fills me with fear & dread. When I’m having a bad day emotionally I cry allday, I want someone to take this all away, I ring my mum & ask her how I will cope etc etc. How can I feel better about all of this? I’m on antidepressants & feel like counselling won’t help because I’m going through a spell of rejection of ms not trying to deal with it. Please someone tell me it’s not gonna be that bad… Had a bad weekend, don’t think hormones are helping as its that time of the month.
hi anon
i wont give you all the usual platitudes because the way you are feeling needs a better response.
yes its a horrible thing that you’re going through.
but you havent got a diagnosis and tbh it could be any number of things, not all are incurable.
if it turns out to be ms you WILL cope, we all do.
it seems to be the not knowing that is the worse thing.
my diagnosis prompted me to make a lot of changes such as cutting stress, stressful situations and people who caused me stress out of my life. i wish i’d done it sooner!
so i’ll tell you now that ms isnt the end of the world
you have to go the long way round sometimes but there are still lots of things to smile about and the odd belly laugh as well
take care and try to count your blessings
carole x
Hi Anon, As an undiagnosed person, you cannot possibly “know” another attack WILL happen. Not everyone ever has another attack, and this is the whole reason diagnosis is not automatic as soon as you’ve had the first. Yes, there is a risk you might have another - but it could be years away. Or you might NEVER have another, and it genuinely is “one of those things” that you might never get to the bottom of, but it doesn’t happen again. Even if it was MS, it’s a hugely variable illness - not everyone becomes seriously ill or visibly disabled. The chances are, you’ve stood next to someone with MS in the supermarket, or on public transport, and not had any idea! Your preconceptions about the illness are only ONE way it can go. It’s not like that for everyone, and may not be for you - assuming you even have it. Instead, you may learn to live with it quite successfully, just as thousands of other people learn to live with chronic conditions like diabetes or arthritis. And one thing that’s very important is not to waste the good health you still have by worrying about what happens if/when you ever lose it. People with MS, by and large, learn to live in the present, and not waste it worrying about things that haven’t happened yet, and perhaps never will. Whatever MS symptoms you may have read about, hardly anyone gets all of them, and certainly not all at once. You may never experience some symptoms, and others only rarely or mildly. As with most illnesses, attitude DOES count! I’m certainly not suggesting people in wheelchairs can “think” themselves better, but trying to stay positive, and focusing on what you’ve still got, rather than what you’ve lost, or think you will lose, helps make the most of whatever health you’re still blessed with. Focusing on a lifetime of “inevitable” doom and gloom, when you haven’t even been diagnosed yet won’t be doing you any good. Nothing about MS is inevitable. Did you know some people have had it a lifetime without knowing, and it was only discovered at post mortem, when they died of something unrelated? So try to take things a day at a time. I don’t mean you should go into complete denial, and never think about what your options are, should you become ill or disabled. It’s no bad thing to have some idea of what exists to help you, should it ever become necessary. But dwelling every day on awful stuff that hasn’t happened yet isn’t the way forward. Tina
Hi, My weekend wasn’t great, really struggled at times. I know how hard being in limbo is but you know what I have realised about myself? I am as scared of leaving limboland as I am in it. I have spent years and years feeling ill but since having tests and being taken seriously for the first time ever, I find the comfort of knowing being in limbo still gives me hope of something treatable. The minute I see my Neuro in February I could be put in the land of definite diagnosis of a, b or c. Yes I will know what is wrong but it could be incurable. So in other words, I am frustrated in limboland but more scared of the alternative at the moment and I never thought I would feel that. I hope you feel better about your situation very soon, it will come, give yourself time. Even then, you will have days that make you think what the hell!!!??? Sam x
HI Anon,
try and think of things that are good, like having a mum to call to talk too, crying can also be a good release too, so its not a bad thing. Try not to think to far ahead it can be overwhelming, take a day at a time. You never know having a counciller to speak to, who is only there to listen to you and give no judgement may help you to feel better.
I hope you feel better soon,
Catherine xx
Hi anon (wish I knew your username to call you by).
How long have you been having ms like symptoms? from what you say, it sounds like you arent working and are spending a lot of time alone, with little to occupy you. in my early days (15 yr ago now) I had many falls, spasms and no one could tell me what was wrong. I was un diagnosed for some years, then wrongly diagnosed for even more years!
Being alone made me feel even worse. I had panic attacks, not knowing when a physical difficulty would have me on the floor, bruised and battered. it is damned hard not to worry about the future. My hubby was angry with me when I looked things up here. He said i was talking myself into having MS.
I didnt see it like that. i felt it was better to have the info. I sent for info from MSS and had to hide it from him.
we are what and who we are…some want to know and others dont at all.
I think you could do with talking to someone who is not a family member or friend. they are too close and try to say the right things, but thing is, they dont know the right things to say. You cant blame them for that.
as Tina says, you cant know that another relapse will come, but yes, it could. you`ve got so much going on in your head (I am the same). We are often our own worst enemies.
I dont know what else to say.
PM me if you like and i`ll try to help just by being here for you.
luv Pollyx
I’m sure hormones aren’t helping, but I think you are dead wrong about counselling not helping.
But let’s take a few other things first. Word of warning: I haven’t pulled my punches very much.
Who says you are definitely going to have another attack? Even some people who have horrific first attacks and meet all the “increases the chances of another attack” factors never have another one! For all you know, you might get run over by a bus before you have another attack. And I’m not being dismissive or consoling here - it is the truth.
Who says you are never going to be well again? OK, a lot of people have leftover symptoms from attacks, but these can improve and we can certainly get used to whatever’s left, especially with meds. And what do you mean by “well”? Having paresthesia or a weak limb or whatever doesn’t necessarily mean that we feel ill.
If you’re in limbo, then you haven’t been diagnosed with CIS or probable MS? So why are you so convinced that you have MS? Neurological symptoms are shared by literally hundreds of conditions, some of which are treatable.
What if it does turn out to be MS? A few things are important here. Firstly, people who use forums are not a good representation of life with MS because they tend to be newbies or people who have more advanced or serious disease so don’t assume that the contents of the other forums on here are what life is like for all MSers. Most MSers are far too busy working and living a full life to spend ages on a forum! Secondly, it could be one hell of a lot worse. I think most people would rather have a disease that allows them to live a relatively normal lifespan and do almost all the things they want than have a terminal illness. Thirdly, who says your MS is going to be bad? A lot of people have mild or very mild MS.
As for a lifetime of bad news - where did you get that idea from? The times when we get bad news are at diagnosis, when we go from RRMS to SPMS (not everyone does though) and, actually, I’m struggling for another one. We know what our bodies are doing, no one needs to tell us, and we choose how to deal with it. So not bad news, life.
ALL people have deteriorating bodies and minds - it’s called getting older. For every time I can’t remember why I walk into a room, my (healthy) sister has at least one if not two times. My dad, who has Parkinson’s Disease, has much worse cognitive problems than most people with MS will ever have. My mum, who has arthritis, walks much worse than I do and is in constant, severe pain that cannot be helped with meds. My sister’s best friend died in her sleep two years ago. She was only 51 and apparently completely healthy.
Is MS fun? No. Of course it’s not. We have to deal with all sorts of sh*t and sometimes it’s bloody hard. But we do deal with it and we do cope.
Is MS the end of the world? Absolutely not.
Back to counselling. It works. Counsellors are trained and experienced in dealing with people who are going through the grieving process that follows getting a serious illness. That grieving process has stages of different emotions including anger, fear and denial. Counsellors help us through it. And then we get on with life. Because that’s what we do. And if we do it with the right attitude, it can still be bloody good.
Karen x
Echo everything Karen said. Especially re counselling. I’m having CBT and even if nothing more than a chance to vent, get angry, talk and cry, it helps me.
Hi Anon
I seem to have spent the last 2 months in tears - Christmas was awful for me but on Boxing Day I decided that I would take notice of a Facebook friends status I saw on their wall one day:
The past is history. The future is a mystery. And today is a gift. That’s why we call it the present.
If I could see into the future … I’d be living on a private island in the Caribbean hahaha
When I do feel out of control however I find writing thoughts and feelings down (no matter how trivial it may seem) in a pad that I keep next to my bed is very helpful. OK so the times when I do write stuff down I can’t actually see what I’m writing as I’m crying so much but once I’m finished it’s like a huge weight lifting off my shoulders. I don’t actually read what I write down afterwards because, in my mind, I’ve dealt with it.
I too am on anti-depressants - so what!!! Whatever helps to get me through the bad days is fine by me.
Take care and just know you’re not on your own … I know for personal experience where you are now and there is light at the end of the tunnel, it just might take a bit longer to get out than it may take other
Pen
xx
It seems you are more afraid of what You do not know than thinking about what You do know. Each day you have been unwell you have got through, each day you have had pain you have managed, getting any diagnosis for what ever it may be, will not hinder your life but arm you with knowledge and understanding to become wiser and adapt to change. Take a positive outlook as negativity and fear are more dangerous than any disease or illness.
i think all of us on here have felt like this at some point in time. Im not going to suger coat this but it realy is not all doom and gloom. I have RRMS and next month it will be 2years since my last relapse.and as far as i feal at the moment im fitter than i have been in many years. I try not to think about the next relapse, sure i know its coming but im just going to go on living my life till it comes touch wood it wont be any time soon. There will be days where you just want to cry and hide from the world. Saterday was one of them for me. But there are positives. I now Know myself better as a person now than ever before and i also know exactly who my freinds are. Iv lost some of my hobbies and intrests but have gained other new ones. If you have any questions we have a wonderful support network here with this forum and it helped me alot when i got my DX And as other people have said not knowing is worse. Chin up chick its not as grim as you think james
i think all of us on here have felt like this at some point in time. Im not going to suger coat this but it realy is not all doom and gloom. I have RRMS and next month it will be 2years since my last relapse.and as far as i feal at the moment im fitter than i have been in many years. I try not to think about the next relapse, sure i know its coming but im just going to go on living my life till it comes touch wood it wont be any time soon. There will be days where you just want to cry and hide from the world. Saterday was one of them for me. But there are positives. I now Know myself better as a person now than ever before and i also know exactly who my freinds are. Iv lost some of my hobbies and intrests but have gained other new ones. If you have any questions we have a wonderful support network here with this forum and it helped me alot when i got my DX And as other people have said not knowing is worse of all. And hey if your lucky it might not be MS any way Chin up chick its not as grim as you think james