Hello, I am new to the Forum and looking for support as my fiance has recently been diagnosed with MS. He was diagnosed in November and we are seeing the MS nurse together in February. This feels like a long time to wait for some advice and support so we feel a bit in limbo at the moment. When he was first diagnosed I didn’t know how to feel but after reading all the info on this website I didn’t feel too bad about it as it seems like people can still lead a normal life and for many the symptoms don’t seem too bad.
However, it seems that since his diagnosis he has got quite a lot worse - he is much more unsteady on his feet and seems tired a lot of the time. I don’t know if it just seems to be worse because we know what it is now (previoulsy we may have put tiredness down to a cold, or too many late nights, etc), or because it really is getting worse. If it is the latter, I am frightened that he has progressive MS and things will get worse for him very quickly. We are both strong people so I’m sure we will get through it some how but I am scared for our future as we wanted to get married, have children, buy a house, etc.
It is also hard to know whether to tell people about the diagnosis (up to him, of course). The doctor told him not to tell people apart from those who need to know. He asked me not to tell people, which I resepct, but sometimes I need a shoulder to cry on or someone to talk to. He has not told his parents. I understand the argument for not telling people as you don’t want to be treated differently but then surely the reason so little is known about MS and it is so misunderstood is because people don’t talk about it. Wouldn’t it be better to be open and honest about it?
I don’t really know how best to support him - he often shuts me out when he is going through difficult things. Also, I am quite ‘stiff upper lip’ about things generally as I think it makes it easier if you attempt to carry on as normal but I don’t want him to think I don’t care or I’m not sympathetic. I feel scared and lonely.
Hi, I know how it felt for me when a message popped up in my in box so I thought I’d send you one to help with your scared and lonely comment. I have ms and to be honest don’t care if people know or not. I have a friend with one leg so she has her situation staring you in the face. If I feel sorry for myself I think of her and how fantastic she is. Having this health problem means you don’t know what each day will bring and you feel terrible guilt that it is affecting those you love. You try to play it down so people don’t think your suffering therefore they get used to you coping and stop asking how you are. If stiff upper lip is your armour then try for a businesslike approach and see if he’ll come round to discussing any things he struggles with and think of solutions. Talk about thoughts rather than feelings it may ease him in gently. Good luck! And keep going.
Thank you for your message. It’s still such early days, we’re still getting used to it and figuring out how we want to talk about it. It’s a funny time of year - you can’t help but think of what you were doing this time last year and where you hope to be in a years time. Thanks for your kind words.
Hi new to forum but have been my wifes carer for over 10 years she has had ms for about 25 years just wanted to splurge out some of my stresses not expecting miracles but hoping by getting them out it may be a tiny bit carthatic for me .My fault but when our oldest reached 16 and my wifes child benifit was reduced I thought that the relevant authorities would make required adjustments .we were already stugling to get by when money was reduced ,but as well as child benifit reduction my income support should of been reduced by £52 p/w so not only has our money been reduced but got a letter today for £3499 owed and they are getting it back…or else B**********s. we didnt intentionaly rip anybody off .I will be down the C.A.B. on monday but at the moment my wife feels done in to the point of feeling…I can`t actualy write that down its to upseting so there we are happy new year to us . We all had just got over a sickness and diaoriah bug that we shared through everone in our family .I am worried about my wife she has gone completely negative and down .Sorry first post and what a depressing one .Maybe it may stop someone making the same mistake as me .
I read your complaints and your feeling sorrow about what About getting married and a house!!??? I think you should educate yourself on MS before you decide that he can just go on as normal. Do you realize what people with MS go through? The muscular pain spasms that make you scream Urinary incontinence and depression is a huge part of it
Being tired is very common and its not the kind of tired were you stay up late. Its instant and most of those times you need to rest. MS can affect peoples vision, heat intolerance is absolutely miserable. If your already worried about whether your going to get a house or not perhaps your not a good candidate for him.
There is Nothing embarresing enough about MS to not share! HE needs support. Go about things as usual? Are you kidding me? Lesions on his brain can affect so many things. Can cause impairments. I have sympathy for spouses who have to deal but if you are going to be like a soldier and stiffen that upper lip and carry on. Perhaps you should join the military and he can carry on not feeling bad for being sick. People can wind up in wheelchairs because of this
I’m very aware of the challenges my husbands been facing as to I have a crushed spine and am recovering from surgery and waiting my ms DX. My husband has had to change my diapers, bathe me, wash my hair, cook , clean etc… I love him very much. But I’ve told him I wish for him to go so he can lead a normal life
Because I feel horrible. I go through periods of stuttering, being absolutely exhausted out of the blue. Muscle spasms that make me scream. Losing words, difficulties remembering things. . Its a lot to deal with but if you love him you stiffen up and open your heart. I may be harsh but your reaction is shocking to me. YOUR wondering what you were doing this time last year??? Don’t you think he is and will wonder what " normal" life without this grueling disease. My mother has RA. I can’t imagine somebody feeling sorry for themselves before the person sick! I cried because I didn’t want her to have to live with pain. I hope you open your eyes and become a little more selfless
I seriously cannot believe what I have just read!!! AM70, I think you need more support than the last few posts have given, and seriously wonder after reading this who is the one feeling sorry for themselves, and if don’t think it is am70. it is a massive undertaking to sit on the sidelines and be a spectator in all of this. You can read as much as possible, but MS is so individual it’s hard to see how MS will and because physically you don’t know how it feels to be so fatigued, or how your partner really is coping psychologically, how can you make plans at this early stage. There are times when I have asked my husband to let me do this alone as a single person, because I don’t want to drag him down, but he won’t hear of it, because he loves me. Sure it’s tough at times, but in sickness and in health and all that. You have made a step closer to understanding by going to see the ms nurse with him, and as you both get through this grief process, and this is exactly what it is, and you come to the acceptance stage, then you will hopefully both see things clearer and be able to see that it really isn’t the end of the world. Meanwhile, this forum is SUPPOSED to be a place of support, but with retorts like the last 5, it really isn’t any wonder why people are leaving this forum! The person responsible is quick to ask for support, and I am sure I have not read anything so damning in terms of a reply to their posts. Good luck to you and your fiancé am70, you will both get there on the quest to learning, understanding and living with ms. X
I am sorry that fate has lobbed this grenade into your lives. MS does that - it tends to emerge at a time when people are planning their lives and building families and careers and establishing themselves in the world, and it is bound to be a shocking jolt. Even for very realistic people who never expected life to be an untroubled stroll along the sun-dappled primrose path of happiness, a dx of a serious illness is a shocking jolt. It is one of life’s bad biggies, no two ways about it.
There isn’t really a text-book way of dealing with an MS dx, either for the person who’s got it, or their nearest and dearest. One thing is for sure, you both have a lot to deal with right now. I think that all you can do is to both be aware that the other one is suffering as well, and that we do not always behave very rationally at these times, and that we do not always communicate too well either, and that cutting each other a bit of slack is a very, very good habit for you both to cultivate, even as you deal with your own strong feelings.
People get used to things in fits and starts (and not always in a forward direction, either!) and it can be disheartening for partner A if partner B is getting used to things at a different pace, or with more difficulty, or (seemingly) not at all. Just try to be gentle with each other. Even though you are partners, you are different people too, and it is OK to deal with things in different ways and at a different pace. I completely understand your discomfort about not sharing with your close circle at the moment. Over time, I am sure that your partner will see that this is difficult for you, but it may well be that controlling information about his health is something that he is clinging on to right now in a world where things he feels in control of are in awfully short supply. Again, probably what is needed is time and patience.
Finally, a person can make a good life for him/herself with MS. It is bad news, but not the worst, and once the initial shock is past, it becomes possible to regroup and recover one’s zest for life and peace of mind.
Good luck to you both.
Alison
Reading the responses to this thread made me really sad. Thank you am70 for your honest post and as I said keep going. The fact that you went on here, read and posted means you sre educating yourself on a health condition that affects people very differently. My husband reads these to gain support as a partner to a ms sufferer and knows how you feel xx