i have totally lost where im going and who I am at the moment- sorry ive gone anno. i have very limited sight in one eye after a bout of ON 3 years ago, its nevery come back and my other eye is doing exactly the same- every few months it just gets a bit worse- and im suprised by the fact it hasnt gone completely yet, I run my own business which to the outside world makes me look like im confident, happy, coping very well with having M.S, and im a flipping good actor as well-ive been conning my friends and family for years that im fine with M.S-but these last few weeks im finding it harder to keep how i feel under wraps,im thinking of leaving my family- my husband is still young and i want him to be happy-with someone that isnt going to need him as I do.someone that can contribute better than me.i wont be looked after by anyone-that will never be an option. it feels like im just playing at living, like im standing on a platform waving everyone off as they enjoy the rest of their lives and im just here-nothing will ever change-im only going to get worse so why bother-why do i want everyone to think im ok? i hate being me.
Really sorry that you are feeling so bad
It sounds awfully like you have been bottling everything up, but there’s just no storage space left so it’s spilling out.
Please don’t leave your family. Only your husband can decide whether or not he wants to stay with you. Have you talked to him about your MS and what it might mean for you both?
In fact, have you talked to anyone about your MS and what it might mean? Talking to a counsellor can be a massive help. I saw one early on and it was such a relief to be able to talk freely to someone who I couldn’t upset or scare; someone who wouldn’t judge me. Your GP can refer you to someone, or you can see if there is an MS Therapy Centre near you who has a counsellor.
It might be worthwhile seeing your GP anyway. It sounds like you might be depressed, in which case anti-depressants might make things very much better. Lots of people with MS get depression - some because of their symptoms and simply having MS, and some because MS can make changes in the brain that can cause depression. Either way, anti-depressants can help. Coming to terms with the diagnosis and what that might mean can only be addressed by talking and time though, not pills, so please please please find someone to talk to (and not just us!).
I would like to echo what the previous posts have said, and I’m sorry to hear that you are feeling so low. I understand only too well those moments when the enormity of your experience of MS crashes over you like a wave.
We all want the people around us to think we’re ok - and that’s a sign that we care very deeply about them. The thing I have learnt is that I can’t “manage” the effect that my MS has on those who love me. Because they love me, they are already affected - and they experience the ups and downs that I experience, in much the same way as with other aspects of my life (career highs and lows, personal achievements, etc). I, too, used to tell my partner that she would be better off without me, but she has made me realise that it isn’t my decision (alone) to make - and it is very painful for her to contemplate having the door slammed in her face in this way. I am sure that your husband would feel the same way - it is natural that those who we are closest to have the instinct to take care of us (and if the situation were reversed, wouldn’t you or I want to do the same?) - what you should probably both discuss is the best way to go about that so that you feel that he is positively supporting you. My best friend advised me a while ago to imagine that I was sitting on a wall, and that she, and others, were standing underneath waiting to catch me - and that it was absolutely fine for me to let go, that it would actually feel a relief, and that I shouldn’t feel angry and defensive about needing support, that I should define what I wanted and needed from others, and they would tell me if they could help me. She was right. Your friends and family will want to know how you are feeling, and I am sure you won’t regret talking to them.
It is really really helpful to find someone else to talk to - in my case I have found it useful, at bleak times, to talk to someone who isn’t emotionally involved with me (a counsellor) - as Karen says, they don’t get upset or scared by what you say, so you can let your most negative feelings and worst fears out without filtering them. I think it might feel like a relief to be able to do that.
eck! I just wish I could make you understand that you are worthy of your husbands love and care.
In sickness and in health, eh?
If it were him who was ill, would you expect him to disappear and leave you?
If your family and friends knew how you were really feeling, i
m sure theyd want to help more.What`s so wrong with being looked after?
I used to be strong, independent, in charge at work, lots of responsibilties.
Now i rely on others for help. but I am still me. And I still feel I am a viable person.
you are too, you know. Please try to get some help over the way you are feeling…there`s lots out there.
Hi My lovely,
I really don’t know what to say to make things better for you as your post is so very sad to read and one that most of us understand. But I wanted to let you know that I am thinking of you and hope tthings get better for you soon.
((((((((BIG WARM HUGS AND LOVE)))))) coming your way, Mary
thankyou all for your very supportive replies.I rang the M.S helpline yesterday and spent an 1 1/2 hrs crying at the lovely man at the other end of the phone-I cant say I feel much better today- but he helped me so much to realise how ive got to this state.Im so determined to seem fine and healthy and sucessful that ive put all my feelings and thoughts in a box and sealed it so tight its all been hidden for nearly 15 yrs-which is a whole load of mess to suddenly come out, because I dont know how to cope with being this new me-well not new really ive been this for 15 yrs so i suppose really i can be this person but i need to get a better balance. I need to be honest with my hubby, i just dont know where to start.i love him so much and my kids, when to my sons parents evening last night, i couldnt be more proud-i miss them so much when they are at school-its like life stops til they come home and the house is full of laughter again-
i thought i had a very strong identity, and ive really conned people that im something im not, i like all the elements of my life-my work, my family, my friends. The M.S man said i had left no time or energy for me-but I just feel guilty if im doing things that I want-rather than working.my husband doesnt make me feel like that ,its me i do it to my self.we live in the middle of nowhere and we live next door to my MIL, who i get on with ok, but she is due to retire this year and doesnt go out-doesnt have any social life and thinks you should be working all the time-when she comes in (i see her about4-6 times a day) if im sitting down she always asks if im feeling poorly- i have to say yes or i get ‘surely youve to much to do to be sitting down’. we have no garden of our own we share the garden, although its made very clear that the garden is nothing to do with us and i feel really trapped in my house.
it feels like ive got all my feelings high in my chest and im really scared to let them go-I dont know how to sort all this out in my head because i really though id got it all right- id got so much control over everything that nothing needed to change and now someone has looked at me -and told me all these truths that are so obvious but ive chosen not to look at, your right of course that I cant leave- i dont want to but the thought of being honest is so scary to me. to say how i feel about living here means I hurt someones feelings and i dont want to do that.but i suppose ill have to. thankyou again for your replies they have helped a lot. it relly feels like im letting go of the old me-ive held on to her for 15 yrs, ive been looking forward through her eyes-seeing the future as she would play it and trying to keep up to that-I cant play this game anymore-im so tired of trying to keep up.Think im going to finish up work tomorrow and take a week off-try and make a bit more sense of all this.
thanks you guys- so ive written a load of waffle-but its helping
I am so sorry you are feeling like this.
You need to TALK… to your husband and a professional.
Tell them how you are feeling. Let it all out!
You love your job, your family and your friends. That’s 3 wonderful things and probably a lot more than some…
Not sure if you’ve ever had counselling, but I had some a couple of years ago and it helped me so much. I got it via my GP therefore it was free. Give GP a ring and ask about it.
Sending a huge hug…x
Dear Anon, you are unbelievably good at expressing what you are going through at the moment - I’m just so sorry that that kind of eloquence comes from being in the thick of it. For what it is worth, you will be helping others just by writing it down as you have. I hope the replies you have had, and the good advice in them, have helped you feel less alone, just as your posts will have helped others to know that they are not the only ones who feel that way.
I hope that time will let you see that this very tough stuff is, perhaps, a painful but necessary stage on your path. You will come out stronger the other side - even if it is hard for you to see that just now.
Your all brill- it feels a bit like im standing up and saying my name and declaring I have M.S-ive been annon not because i didnt want you to know who I was but because if it says anon instead of my name then its not me thats writing it- so here I am-
Ive booked a consultation with an m.s therapy centre for oxygen therapy- and have taken the plunge and booked a taster session at rock choir-so i can have a whole day once a week just to my self.feels very weird-i still feel very guilty.think im just going to have to let that take its time to ease-going to make a great big cup of tea -take the dogs up the field and have a great big breath of air. i feel very empty-but not in a bad way,but very scared.going for oxygen therapy is admitting ive got m.s, to be honest -and please dont take this wrong-talking here and speaking to the m.s man is so hard-because i just dont associate myself with m.s-ive tried so hard to keep fundraising for our local branch so that i seem like an outsider not a member
maybe having a whole garden to ourselves wouldnt be a good idea- if im not up to keeping it up it would just mean more work for hubby-maybe hanging baskets and pots would be better-make the house look pretty. sorry im probably going to keep waffling - going to stand in a field and say out loud-i have m.s im sure the dogs will just say so-stop waffling woman and throw that stick
Dear Barnabycrumble - good for you!
Just wanted to let you know I go for Oxygen therapy too and it ha really helped me - I truely hope it does the same for you. I worried about it before I went too but after I’d been all those worries went away. I’ve been helped by it and have met new friends through it - so I hope you have the same experience.
Thanks Mary- its the 15 days in one go that im worried about the centre is 40 miles from us so its going to take some organising- I was going to chat to them next week but think i may wait a few weeks as my sis in law is due to have her baby soon and my backup drivers will be on hand to help her- i dont want to interfere with such a wonderfully exciting event. but im looking forward to it and l will look at bus time tables as well.
hoping it will give me a good burst of energy for the spring
Hi…so sorry you are going through such a hard time of it. I too an having ON in left eye…and right eye is ok but vision not great…cant drive and now have nystagmus in both eyes…I empathise too as I work for myself…and its tough…
It will help to talk…and let all these feelings out…you are human afterall…not super woman!! As others say its improtant to look after yourself…physically and emotionally…there is allot of help and support out there so grab it…use it and it may feel new for you to accept this help…but its as important as taking meds etc…I am very independant and hate relying on others…but at present have no choice…sorry to hear your eyes have not improved as much as you would have liked…may be worth seeing your optition too as they may be able to help?
Thanks for that honey, i keep re reading all your comments as they make more sense the more i read them- feel a bit better this morning, not so tight in my chest, and am doing my utmost to be thinking about today and not charging ahead in my head to how im going to show im ‘superwoman’ to the rest of the world- feels like i have so much space in my head!!.still not plucked up the courage to talk to hubby about it- but the ms booklet came yesterday so im leaving that around so he’ll see it- he will be brill i know but i know it will open a flood gate and ill have to talk about how im feeling-im usually very talkative/brash so to not want to talk about something is quite bizzarre. ill get there but it may take a bucket load of gin courage this eve