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Making people understand how youn feel

I have recently been diagnosed with RRMS and my emotions are all over the place. People say I’m sorry to hear that but don’t understand the emotional side of knowing the problems that you face. When someone speaks to me it takes longer to register and digest and then to reply. But what I find frustrating is that they always want to say it for you!

The hurting legs that won’t do want you want them to, the pain in the head, blurred eyes. Yes you’ve guessed it at this precise moment I am depressed about having RRMS. I know I shall come out of it, but what really annoys me is that I have had this desease since the mid 80’s and the doctors never picked it up.I shall pick myself up as I usually do but oh boy it’s so good to talk to someone who knows how I feel.

Thanks for listening

Janet

Hi Janet.

It is really hard to explain things to people who haven’t experienced them for themselves. That’s the main reason why this site is so brilliant - we really do understand.

Oh for the ability to just transfer everything we are going through and feeling to someone else, even for just a few minutes!

In the meantime, all we can do is grin and bear it from those who don’t matter and try our best to explain and lay down ground rules for those who do. If someone you work with or live with or see regularly is doing something that is really annoying you, the only thing you can do is tell them - they may think they are helping you out and have no idea that they are actually upsetting you.

It gets easier with practice!

Karen x

Hello Karen,

Thank you, thank you, it was a relief to read what you said. I will have to gather up the courage to say exactly what I feel, but it’s so hard when it’s your nearest and dearest. The last thing I want to do is upset him as I know he is worried about me.

I will most certainly take your advice especially as I know he is emotionally upset and hasn’t yet come to terms with what it can all lead to.

Thank you once again, I really appreciated it and needed your words badly.

Janet x

Ah! If it’s your other half, then tread lightly. He’ll be hurting too.

It’s really hard to hear that you’ve got MS, but it’s just as hard on our partners. They are scared to tell us how they feel for fear of hurting us. They feel like they have to “be there” for us every second of every day (even when we don’t want them there!). They are equally as terrified of the future, but don’t want to say anything because they feel they have to be strong for us. Plus they have the whole thing of “caring” hanging over them. Bloody terrifying!

Take it slow. Let him talk too. Share. Make some ground rules.

It’ll be OK.

Kx

Hello Karen,

You are right he is finding it hard and the very last thing I want to do is become a burden to him. Each time I go out the room he wants to know where I’m going. If I have a shower the door cannot be locked! At the moment he’s smothering me. Logic tells me he is worried I will fall and hurt myself. My independant streak wants to yell please, please let me get on with it. I try telling him how I feel but he clams up on me.

I really feel for him as he looked after his father because of an illness (not MS) and I don’t want him feeling trapped because we are married.

I love him dearly but am finding it very difficult to accept that he must be with me at all times. I suppose that’s the answer time and saying what you feel. I just wish he would.

Thank you for speaking to me, it is really helpful.

Janet x

Oh boy! Tricky :frowning:

If your husband has been through something similar, he is going to be imaging the worst from his experience, even if it isn’t probable. Sounds like you might need some professional help. There are MS counsellors at some of the MS Therapy Centres or your GP can refer you to a counsellor elsewhere - it might be best to get some proper guidance? And give you both a chance to talk about your fears without worrying the other?

Kx

I am so sorry that its getting you down. Im not diagnosed but I can imagine even if you have been expecting it to actually see it written down must be really hard to come to terms with, and for your hubby as well. Sorry for being a bit dense but is the slow response thing to others in conversation an ms symptom, I’ve noticed Ive got really bad in the last few months at this to the point that i often think others must think i am a bit slow because i just dont get an answer out quickly enough and someone else will answer instead. I just thought it was me being a bit dense/ tired but is it a symtom in its own right? (must add that generally i am not thick - am studying for a masters at the moment - just in case you were wondering!)

hope you start to feel more positive about it all soon.

hugs

xxx

Hi to you lovely people,

Today has been a better day for me, I have taken on board what Karen said. It seems to be working, fingers crossed! Either that or I am feeling more positive about myself. I have asked him to help me with a few things, that I know full well I can’t do and then said no that’s ok I can manage that, thanks a lot though… Today my legs have not hurt so much and I can actually feel my feet, eyes still blurred, but I guess we can’t have everything. I feel so much better by talking to you all, it’s great to think I’m not on my own. To answer your question Sheena, no it’s not you being “thick” I have suffered with the same problem for ages now and what’s even more annoying is when you know the word you want to say but for the life of you it just doesn’t come quickly enough and some kind soul says it for you. I have found that hard to come to terms with. I really don’t know if it is a symptom, the only thing I’m sure of, is that it happens quite often. Just hope tomorrow I am still positive.

Reading what you have all put, Karen, Sarah and all, it makes me feel rather selfish and inward thinking, got to start living again and thinking about others more.

Bless you all.

Janet

Hi, i was diagnosed in july and still havent got my head round it. Ive told most people and have had different reactions. My hubby is in worse denial than me. Things are just how theyve always been and i just have to get on with it as i never get any help with anything, even when i feel rubbish. Which in a way takes my mind off things sometimes but other times annoys me. He wont talk to me about it and just treats me like he normally does. I have good days when im positive thinking, im ok theres nothing wrong, ill be fine. Then theres days when i feel my world has fallen apart and bawl my eyes out and want to lock myself away. More so now as its hittimg home that my treatment is due. Im scared, apprehensive and feel lonely. I have lots of aquaintances but not so many real genuine friends, the ones you can say anything to and have a cry to. I cant keep putting it all on my kids who are 16 and 14 as its not nice for them even though they understand. My 14 year old said i can still do it all as i look ok and dont look ill. Dear me this wasnt supposed to be a rant but think im in one of those emotional moods again. Ill have a cry to my dog! He just sits on my knee and lets me have cuddles… Sad i know but…i would be lost without this site. You are not judged by anyone and so many others understand as they are in the same situation. Sorry for ranting it wasnt supposed to be one. Karina xx

Hi Janet and all,

You’re right about the emotions being all over the place. I was fine untiI I started reading this thread - a grown up with moist eyes, ridiculous!

I’ve said before my plan is to keep my diagnosis as much as possible to myself (and to downplay what I’m experiencing as much as i can to my wife so as not to appear a moaner and as far as possible any less capable). I’m already thinking this is too extreme. I recognise that doing this gives no outlet for my wife to discuss things, and think letting her sister in on it (a nurse) will help when she visits soon. My wife doesn’t want her parents to know though as she’s concerned they’d be too devastated. I’m also mindful that as my mother died of cancer and pretty much claimed she was fine right the way through which didn’t help anyone, it would be wrong not to tell my kids (but not until after their GCSE and A levels in summer). You can tell I haven’t got it too bad yet from this - but haven’t felt my feet properly since April, so I’m delighted to hear you’ve got yours back for a bit Janet!

Incidentally, if feeling in my feet isn’t coming back fully for this duration, should I go back to my neuro and would any medication help? Are there disbenefits or side effects?

Hi Karina - dogs are good for that aren’t they. They must think ‘what’s all this about’!

Very best wishes to you all - you are all super!

Mr S

(((((GROUP HUG)))))

Never thought I’d type that!

The first couple of years are arguably the toughest emotionally - it’s so hard getting your head around your diagnosis and then, on top of all that, you have to try and work out relationship stuff too!

In my opinion, the most important thing is to be willing to work it out; burying your head in the sand is probably the worst strategy. It’s fine to do that once you’ve dealt with the diagnosis (especially if you’re really quite well), but doing it before you and yours have dealt with the diagnosis just means that you are storing it up for a later date (by which time all sorts of misconceptions and grievances will have built up).

One of the issues about relationships is a difference in knowledge. Another is a difference in time along the path of dealing with things (e.g. Karina: your grieving versus your husband’s denial). Knowledge is an easier thing to deal with: download or order some free booklets about MS from here and/or the MS Trust website (and make them read them!). (Karina: the MS Trust do a great one aimed at teenagers who have a parent with MS.) Dealing with a difference in timings is harder. All I can say is that if it isn’t improving with time, please get some professional help. Same goes with yourself. If you can’t get out of the grieving stage, please see your GP. I saw a counsellor in the early days and it helped me immensely. The counsellor should be able to help you work out how to deal with others too.

@Mr S: I don’t think meds are very effective for numbness, sorry :frowning: It’d be worth asking your MS nurse though. He/she may know of something.

Karen x

Hi Everyone,

L

When I was first told I may have RRMS I went onto the net and printed off all the different types that occur, I put them in a folder along with symptoms that may occur. I then infoirmed my other half and said when you are ready, have a read and you will see for yourself, how many things I do have. At first he wouldn’t read it. After a few weeks went by and many tests at Kings College Hospital and being told it’s heading towards MS, he did have a peak. Since having an actual dx he hasn’t bothered again. That I fear is why I’m all over the place so to speak as he just won’t open up. That’s why I have taken Karens advice and slowly it seems to be working.I might add my son who is 25 is great, if he sees me struggling with something he just takes over without saying a word. He is my silent rock. But oh my I’d love to be able to really talk to my husband instead of treading lightly.

MY legs feel like rocks again and still cold but I feel positive, the numbness you just get used to.

Janet x I’m happy as it’s my 65th tomorrow and I’m still here to tell the tale, I’m a lucky bunny!

If I forget (which I am pretty much bound to!), have a great birthday tomorrow Janet!

Karen x

I think I’m doing well dealing with this in that I have accepted it. I obviously have good and bad days. Days where I rant, days where I cry,days where I am a crabby old cow! However I do not think my husband is dealing well with it. I think he is in denial. He says he is not as he has put things in place to work at home 2 days a week after Christmas. Yet, whenever I mention IT, he just answers hmm and carries on with what he is doing. This is fairly true of the rest of the house (four sons) as well. Is this because they are male and have trouble articulating their feelings? As I’m the only female in the house I have difficulty working out whether or not this is a difference between the sexes or just expecting too much of them as far as understanding goes. Can anyone shed any light on this? Teresa xx

Hello Teresa,

Your hubby sounds just like mine has been, but I took Karen’s advice and am slowly letting him in on how I and it feels, if you feel like crying, cry, if you want to rant, then rant and so on. It slowly dawns on them, well it is on my husband.I actually spoke to my son who is 25 as I’ve said before and asked him how he felt about it. I was really pleased by what he said quote " You’re my mum, I’m sorry you’ve got it, wish you hadn’t but it won’t kill you, so that’s ok" unquote. He knows I can’t do all that I used to do and in his quiet way he helps me by understanding and realises that my hubby just won’t talk about it. So I’ve just got to be patient and bide my time and at some point he will…I hope.

Thanks for the birthday wishes Karen, means a lot.

Janet x

P.S. Listen to what Karen has to say she makes sense.

Happy Birthday Janet Thanks for your comments. Yes I know Karen always makes a sound contribution! Teresa xx

Thank you!

I wish I knew the answer to how to deal with the silent types. If all else fails, and it’s important to sort things out, professional help is probably the answer.

Kx

Thanks Karen but the chances of getting my husband to go to a counsellor about me is fairly remote I am afraid! We will soldier on as ever! Teresa xx

Hi Everyone,

Thought I’d share a little laugh with you all. I had contacted OT and they very kindly said I could have a bath seat, one that goes up and down. I decided instead of having a shower ( something I’ve had to do as I cannot sit upright in a bath without sliding backwards). This particular day my hubby lowered the bath seat into the bath, I sat on the seat pressed the button and lowered myself into the lovely water. It was heaven. When I’d finished I pushed the button to bring myself up and nothing happened. I was stuck!!! I called hubby, he tried the button, still wouldn’t work. Nothing for it somehow I had to get out of the bath. Trouble was my strength is not great and then I started laughing and laughing, that is between saying please, please don’t call the fire brigade. With the assistance of hubby I finally got out totally exhausted, sat on the edge of the bath and said, thats it, showers only for me!

I hope you can imagine the picture I made in trying to get out of the bath and have a jolly good laugh, just as I did, trouble was I was totally zonked out for the rest of the day.

Janet x.

Hi Janet Lol, I hope they sort the button out for you so you can have a bath without getting stuck! Teresa xx