What keeps you going?

Everyday living
1

I had my first MRI scan in December last year. I was told it was probably MS so I had another one and an LP. Definite diagnosis came in March. I thought it would get easier to deal with but it hasn’t. All my normal coping mechanisms are gone… I can’t walk or go to the gym. I can’t write my diary. I can’t dance or even blot it out with alcohol anymore. I hate my life, I can’t find a reason to carry on with it, the only thing keeping me going is my boyfriend and I feel guilty about what I’m putting him through and feel like I’m pushing him away and its only a matter of time before he dumps me anyway because what can I offer him now? I feel like I’ve been given a life sentence and I don’t have the energy or mental strength to live like this.

Please tell me how you’ve dealt with your diagnosis and what keeps you going?

2

Wish I could help you, but I am feeling the same as you. I have made some new friends through this, which is great, but I cannot see myself getting to where they are now in their acceptance of this. disease.x

3

It’s not long since getting your diagnosis, my guess is your still in shock. Give it time and try not to think too far ahead…take it one day at a time. Do you know what type of MS it is yet? are you on medication to help with symptoms.

Have you spoke to your boyfriend about your feelings. If you have a strong relationship, then hopefully things will work out.

I’m 58, married with two grown up children and had to give up my career in nursing for another condition and now I have MS. I am by nature a positive person but I do have days where even I feel totally peed off with everything. You just have to keep going, whatever life sends your way. I just see problems as challenges to be overcome…I can’t see it any other way.

Take care xx

4

Hi tingly (nice name by the way!)

I don’t know if you’ll find this encouraging or even more depressing, but it’s not been that long since your diagnosis - to come to terms with it in such a short space of time would be incredibly quick. In can take years for many of us. It takes time to grieve the loss of our old lives, and we might experience things like denial, anger, and depression. They’re not nice things to experience, and we can feel like we’ve become totally different people. But even if they’re not nice, they can be vital stages to go through as we come to more of a place of acceptance. And the important thing to remember is that it is possible to come to that place.

I think one of the things that can be hardest is that it can force us to question who we are. If our identity & sense of self-worth has been placed in things like our jobs or our abilities, then losing those things will feel devastating. I know I’ve had to really question who I am at my core. And I’ve had to examine what it is that I really value & love in life, and what makes me tick, and then to find new ways to engage with those things. I heard a song with the line ‘Everything’s going to be OK, but only when your definition of ‘OK’ has been redefined’, and that’s something I can relate to. Like I always loved nature, and loved mucking about in the countryside. That’s harder for me to do now, but instead I do things like cloud spotting or listening to birdsong. Or as an example for you, you say you can’t write in your diary, but what about typing one? I know it’s not the same, but finding new ways to do what you love is hugely important. It will help your own sense of self-worth, and also mean you’ll bring life and energy to your relationships (this might sound harsh, but if all you bring to your boyfriend is neediness & what you can’t do, then it may well well push him away. That’s not to say you shouldn’t share with him how you feel, but also find things that bring you (and therefore him) life). And talking of your diary, I think it will be really helpful to use something like that to express your feelings & to help get them out. Suppressing emotions is rarely good for us. If you want to kick & scream, then kick & scream. You’ll probably feel better for it, rather than keeping it all in.

Many of us can relate to what you say about it being a life sentence (or death sentence). But MS doesn’t have to mean the end of your life, just a different direction. Because of my diagnosis I’ve done a skydive, I’ve made great friends, I help review grant applications to the MS Society for scientific research, I’ve become a member of an NHS committee that also decides what research grants to award. And I’ve been lucky enough to win a scholarship from the Flying Scholarships for the Disabled charity, and in just a few weeks I will learn to fly (I’m very scared & very excited!). So no, I don’t think your life is over. The new path may be rocky & painful at times, but there’s still much journeying to be done.

I should probably finish now - that turned into a much longer reply than I was expecting! But I hope there was at least something in all of that that you find helpful.

Dan

5

Just another quick thing I forgot to say - it’s possible you may find your boyfriend needs to grieve your diagnosis too, and he may experience similar feelings too. If he does, it may feel like he doesn’t care, but actually it’s the opposite - it’s a normal reaction to have when something hard happens to those we love most.

6

I’m going to ask what maybe sound like some dumb questions, but I don’t know how MS affects you, as it affects everyone differently.

When you say you can’t walk, do you mean literally - not at all? I.e. need a wheelchair? Or do you mean you can, but it hurts, or can, but you get tired, or can, but you’re scared to, because now you’re diagnosed you fear physical exertion might harm you in some way? Or some other reason?

I’m just trying to work out whether your barriers are mostly physical - i.e. literally paralysed, or mostly psychological - i.e. paralysed from fear? Is the diagnosis the problem, or your current capabilities, or lack of them?

If your problems are physical, are you having any sort of rehabilitation, e.g. physiotherapy?

You don’t say what type of MS you are diagnosed with. If it was RRMS, there’s still hope of improvement, as relapses can take many months to recover from. If you were only diagnosed in March, it is too soon to conclude no further improvement is possible.

I’m interested you say you can’t write your diary. So possibly not hold a pen? Yet you can clearly either type or dictate into a computer using voice recognition, so why not keep a diary that way? Is it essential to have a paper, handwritten book? Or is capturing your thoughts the important part? In which case you could do it by any means possible.

A lot of people with MS do go to the gym, believe it or not. I’ll be honest that it’s not my thing - but then it never was when I was well. Obviously it would be sensible to have a word with them first, and not just turn up, but there may be equipment you can still use.

I have found I have been able to greatly extend my walking range with continued practice. I’m not suggesting this would work for everyone - e.g. if you’ve lost use of your legs completely. BUT, if you can still walk, but have lost range and stamina, it’s possible to build it up again.

When I had the relapse that led to my diagnosis in 2010, I avoided walking for quite some time, then found to my horror I was struggling to walk to the post office, just three minutes round the corner. That gave me the needed shock to realise that if I didn’t fight back, I was going to be housebound. From that point, I started making a conscious effort to walk just a little further than was comfortable, every day. Progress was very slow and disappointing at first, and I wondered whether I was doing more harm than good. But very gradually, my strength and stamina improved. I am now walking further than I routinely walked when I was well!

It’s NOT all plain sailing - in fact, only this week, I went on an organised walk for people with health problems, which went a bit wrong. Either the organisers had failed to walk the route a few days in advance, as they usually do, to check for any unforeseen obstacles, OR we took a wrong turn somewhere. But either way, it took us a lot longer than expected to get home again. and we had to climb over fences (supposed to be styles, but they were broken), fallen trees, and negotiate head-high thistles, nettles and brambles. I was not amused, and got home in a distressed state, and had to retire to bed for the rest of the day.

Nevertheless, when I was diagnosed, I could never have imagined being out climbing over fences and tree-stumps - something I never did when I was well. Even though it wasn’t exactly intended, I’ve done it this week - and lived to tell the tale.

So I would certainly encourage you to use and develop whatever capabilities you still have. Nothing improves from neglect. If you still have it, work to strengthen and improve it.

I can’t advise you about the bf thing, because I wasn’t in a relationship at diagnosis, and am still not now. It just seems he’s pretty invested in you, because he didn’t bail when serious illness reared its ugly head, so it would be a shame if you undermined his commitment, by deciding you’re not worth it. He evidently thinks differently. It has been said - not just to me on this forum, but others here - that it’s not for us to decide on someone else’s behalf whether we’re “worth” being with. That’s a decision only they can make. So far, he’s decided yes, so who are you to interfere? He’s a grown-up - he chooses what’s acceptable to him; you don’t. Everyone’s got something less than perfect about them, even if it’s not a horrid illness.

Only time will tell if your illness is going to be a serious issue in the relationship, or even the making of it! Sometimes people grow closer in adversity.

But it’s not yet six months since you were diagnosed. Far too soon to be making any irrevocable decisions.

Tina

x

7

tingly_badger (this text colour and emoticon thing is cool!)

I was diagnosed after a fall in Oct last year and my emotions were up and down. Both me and my bf were shell-shocked. He tried to be strong for me but I could see it in his face.

My coping mechanism was “la-la-la, I am positive, positive thoughts, think positive, no stress, I am healthy, I am fine”. Then in December a week before Christmas my whole left leg had pins and needles. It didn’t go away. Then my right leg, around the feet, had same feeling. I thought “oh, no, its happening”. I thought “ah well” at least I’m not in pain and I can still walk and dance (near diagnosis I used to fall over with my headphones on in the dark - now I know why). Then one night, when everything was still, both legs fuzzy, I started crying and didn’t stop until the end of the day. So your emotions will be down and up, down, down, up, etc.

Anyway, tingly_badger, you’re still in shock and it will take time - it took me up until now (July 2014) to kinda come to terms with diagnosis, such that I sometimes forget I have MS. I can still walk, but I now find that if I walk for say 30-40 mins I’m unsteady - or if I’m late and stressed leaving the house, my gait is clumsy. For some reason I find it funny. My bf is very positive and helps me when I’m down. I tell him he might as well bail out now before I’m ringing my bell (like in Breaking Bad). He doesn’t believe I will worsen - bless!

tingly_badger, try and stay positive because your body will listen to you. I have changed my diet - all organic - sometimes raw (but if I see another courgette I will scream) and I do yoga and Qigong (chi kung) at home. I use a stationary bicycle put my headphones on and peddle along to my music like a nutta. After 30 mins I walk with difficulty and have to rest for 10 mins but, hay - it’s fun. My plan is to keep my leg muscles strong and keep my stamina up. My legs do feel stronger - but I used to go to gym before I was diagnosed and stopped for about a year before my fall. Also I had vaser in Aug 2012, I am tall, athletic body with a ‘vaser’ six pack and flat stomach, thought I looked hawt at 47, then … wtf!!! (…positive thoughts, positive thoughts…)

All I can say is don’t hate your life - as Mr Gump said, “life is like a box of chocolate, you never know what you gone get…” (unless you memorize the card like me). I sometimes look at people and think “why me?!”, but everyone has their own struggles and life is a journey, which may not always go the way we want it to.

In sort (sorry for all that waffle above), I still have fuzzy feet but I keep going by always reading/researching MS on Internet, staying positive (if I do end up in one of those whizzy scooters, then so be it), my diet is important and exercise - it all releases positive vibes. Tomorrow isn’t a promise and if my bf leaves me, I will cope (I have two cats).

8

Hi tingly,

The only answer I can give is time time time. It’s early days for you at the moment, it takes time to get you to find your feet, and to get your head around it.

I was Dx in 2012 and still have my moments so to speak but I’m getting there. It’s a lot to deal with and a whole lot of new information to take in so take it slowly and at a pace that suits you. When I was first Dx I over-whelmed myself and Dr Google is not always truthful so it’s easy to scare yourself.

Remember to be nice to yourself, it’s often the small things that you tend to overlook that can make a big difference, spend time outside, look after a houseplant, pets are great therapy even if it’s a couple of goldfish in a small tank-it’s something to tend to and watch for relaxation, read books, see your friends, talk on this forum but DO NOT beat yourself up it takes time time time.

Take care and I hoping to start to feel better soon, if not maybe some kind of talking therapy would be helpful for you.

BeckyX

9

Do you feel any better now with all these replies tingly_badger?

I’d like to ask how many of you are taking anti depressants? I don’t want to, have had them before, but gym far far outweighed any amount of prozac, but, now, all that amazing feel good feeling has gone at the moment too.

Just when thing were going so great.

10

Oh tingly, what a horrible place to be, mentally and physically. I agree with all these other posts, time is a great healer. I was diagnosed last year, within two weeks of a massive relapse whereby could not walk or feel anything from waist down. Interestingly, for me, the fact it was MS was a relief as all sorts of horrid things were going through my mind. ( they found something growing in my spinal cord as well as lesions so I was imagining a worse diagnosis) It’s a lot to deal with but honestly, you find ways to adapt. I don’t do half the things I used to do, but friends come to me, or pick me up and we go for coffee etc. I can’t run and exercise like I want to but I found yoga and Pilates really helpful for my strength. I get so so tired so quickly but managing that becomes easier as time goes on. If I know I have something to do in the evening, I take a rest in the afternoon etc My husband was and still is in total shock. We have a little joke about things now but his initial thought was that I would give up work immediately and be in a wheelchair. My family too, are still all over the place and it’s because it hurts them too see me in pain or struggling with mobility . I am a stubborn girl and was determined I would be back at work, and I am. I work as a practice nurse and have just completed a uni course to qualify as a nurse prescriber. When I look back, one year ago I was still off sick from work and struggling to walk around the house so although this course has been horrific and tiring, I was determined I was gonna do it! Don’t be so hard on yourself, allow yourself time to process stuff and take each day as it comes, there is help out there if you need it and venting on here is always a good thing as people understand. Claire x

11

Hi tingly, I was diagnosed a year ago and like many others was completely devastated especially when I was told it was PPMS. Every time I talked about MS to someone I just started crying. Occasionally I still do if I have to look how ms might effect me as it goes on. It is still early days for you and the future can look bleak, if you can you should try to plan something positive that you have always fancied doing but have found reasons to put it off. Take care Jackie

12

A label of MS IS NOT a death sentence or the end of your life. Its just another journey a detour.

I have several friends recently who have been diagnosed with cancer, breast and ovarian. Should they give up? No they are fighting, fighting to keep a life for themselves and their families.

MS is just another challenge. Thousands of people with it, live a fairly normal longish life. My sisters MIL died last year at 85 she had MS over 35 years.

You have to be positive with any illness.

Everyday I see something wonderful in my garden I am around to support my family, and enjoy the sunshine.

I would never give up there is so much to do lol.

IF you cant walk and its your MS, then sounds as though you are relapsing but even people in a wheelchair can suddenly start to walk again with MS.

DONT give up, get even with it, dont let it take over your life. Its here to stay, so work with it. There are no guarantees in life anyway we all end up with something we have to cope with.

xx

13

firstly its my determination that keeps me going,that and my beautiful little grandaughter,she brightems all my days up,no matter how bad im feeling,shes such a joy, and i feel very lucky to be here to enjoy her,my poor husband died aged 46,and never got to see any of his grandaughters,so i thank my lucky stars im still around to see her.

J x

14

Hello TB,

The feelings that you show are not unusual at all and very understandable considering what fate has just given you. But there really is light at the end of the tunnel. You have to give yourself time to mourn and your boyfriend is probably going through much the same. I would try and relax as much as possible if I were you, but believe me I do know that this will not be easy. You will have bad days, but you are so early on in your diagnosis. I can remember finding the first months very difficult, but if I had a time machine and was to look down at myself at that time again, I would do my utmost to relax. If people won’t treat you the same as they used to before your MS, then they may leave but at the same time they may turn round and surprise you and give you lots of support. Good luck at this difficult time, but the clouds will lift fgor you believe me.

Best Wishes,

Moira

15

Hi, Sorry you feel so down, I was the same when I was dx 2 half years ago I still get days when I get mad and cry, it will get better in time you have to change how you think I know its hard to be positive which is what my Husband tells me when I’m having a bad day I could hit him sometimes but I know he’s right, when I was first dx he brought me a book by Judy Graham MS the natural way which helped me so much and still today I will look at it when feeling down, try to look at the positive things in your life like your Boyfriend like the other posting said he wouldn’t still be around if he didn’t want to be so try not to push him away and buy the book it will give you something to do!

all the best Sue

16

Thanks everyone.

I am apparently RRMS, but feel like some things are not going to improve. For example, I have been having problems with my knees for three or four years that seem to have got worse. A year ago I was halfway through an OU degree which I had to stop because I am too tired after work to put the hours in and can’t concentrate or remember things like I used to. This was meant to be my ticket out of my job and now I feel trapped there. My waking is bad and becomes painful after about ten minutes. I had optic neuritis in December which left lasting nerve damage so am now partially sighted in left eye. Began taking LDN in March which helped me with bladder problems and tremor. Had an Avonex injection 4 weeks ago… within 3 days my balance had gone along with the feeling in my right hand, which has made it go all funny meaning I can’t hold a pen properly, hold a knife, cut up veg or even do up my bra. I can type with my left hand. It’s really frustratingly slow because I used to be able to touch type. I didn’t take another Avonex injection as hospital said not to. I wanted Tysabri but tested JC positive and have a 1 in 1000 risk of PML development… I’m terrified of it. It just scared me how quickly my quality if life has deteriorated and I can’t help comparing this summer to last… I was at the highest point of my life a year ago, was finally on track to the future I wanted. I was also fiercely independent and now it’s all a struggle and I hate it. I now have the fear about a lot of things, I rarely go out and feel like this it’s one of the reasons my boyfriend well end it… we had so much fun last summer but now what kind of girlfriend am I? Miserable and useless. I’m 29 and my life was just starting… My 30s were so full of promise… now in less than a year I feel like it’s all gone :frowning:

17

Thank you for sharing more about yourself. My daughter is a similar age to you…I would be heartbroken if she was the one with MS. This is a terrible time for you, I hope sharing your feeling with us is helping in some small way.

I’m primary prgressive MS so don’t really feel qualified to say much about RRMS. I do know that symptoms can improve though and I hope they do for you.

((((((hugs))))))

18

hi tingly,have you anyone you could talk to, who would really listen to how you feel,maybe ask for some counselling,it might help you get things into persepctive,its good to get things ‘off your chest’

you are not miserable and useless, you have had a shock learning you have MS,its not easy,and takes quite some time to get your head round,yes your life will be different,and you will have to learn to adapt,which isn always easy,but in time you will find your own unique way of coping,as we are all different…try and focus on the things you can still do,and finding a way round doing things can help too,i was 32 when i was first diagnosed,and within 4 months of my diagnosis i was pregnant,so i had the shock of the diagnosis along with the shock of finding out i was pregnant,(we had been trying for 7 years but thats another story…lol…i was all over the place with my emotions…ecstatic and sad at the same time,i had no choice but to just get on,with it all,and thats just what i did…it helps to come on here and talk to people who understand,i started to come on here after a massive relapse,and it helped me such a lot…your lifes not over just because of the MS.its just different…

J x

19

I know. I just wish my partner would talk about it with me. I tried to dump him last week and although we didn’t break up he told me he was it was hard and he was thinking about it. I live him so much and as such think I would be doing him a favour. I don’t want to talk about it all the time but I just crave some reassurance from him that he loves me no matter what. He behaves like he does but I wish he would just tell me. I never used to be insecure or self conscious but now I have no confidence or self esteem.

20

its hard for both of you,and in some ways i do think its harder for our partners too, we cant understand whats going on, and we have the ms,so it must be so hard for them to try and understand,

if you already have a good relationship,then try and talk about it to each other,ask him what his fears are,he might not like to talk to about it,incase it upsets you, it seems to me, as if hes trying to protect you from being hurt…talking about it is the best way forward,that way you both know what to expect from each other, tell him you feel self conscious and insecure,at the moment,its to be expected at times,we are only human,tell him that your scared for the future too

but do try to focus on the present,none of us know what the future holds,ms or no ms,there are no guarantees in life for anyone,i told my self when i was first diagnosed that i wouldnt worry about the ms, i would worry about it if and when it happened,

after my diagnosis,i was very ill for a while,then i went on to have my daughter shes 21 now,and i didnt have another relpase until 8 years later,my relapses have never got completely better, they have always left me with residual damage, but i do seem to manage to ‘get going’ again with sheer determination.

please try and find the stength to talk to each other,though,it will help you both,if you can laugh togeether, and cry together you will find a way through,really you will,feel free to message me whenever you like.keep smiling.

(((((((((((((((((((((((((hugs)))))))))))))))))))))

jackie xx