Hello all, My wife recently found out that she has Endo, Migraine attacks and MS after 7 years of doctors appointments. We’re seeing the effects of them all. MS is the newest, and we’re seeing this in varying ways, most notably in her hands. It comes and goes but her hands just can’t grasp sometimes and, understandably, this comes with outbursts of frustration. I’m not really sure why I’m on here. We’re not bringing the subject up really at the moment. And, I don’t want to bring it up either because I don’t want to be upsetting her. I guess I am just worrying about the future as to how things may go. She’s strong, very strong and always fights on. I adore her. Don’t really know what to do at the moment and felt I needed to say something somewhere somehow.
Hi,
I know only too well how frustration with our malfunctioning bodies spills over into anger and rage. It’s all the more upsetting for those concerned when this is directed at the ones we are closest too. I am often having to apologise to my wife when I know that she has been on the receiving end of my bad temper.
All I can say is that the strongest relationships can weather all manner of strains as long as there is good communication, understanding and forgiveness.
This Forum is where you’ll find people who empathise and sympathise with what you’re going through.
And it’s a good place to let off steam as well.
Regards,
Anthony
one of the hardest things to do is to know how to explain it to others.
the booklets from this site and from the MS Trust are helpful.
however sometimes someone will ask for a more specific answer and i never know how to phrase it.
i discussed this with my lovely neuro and he said that my own words were fine and in fact said he might use them himself.
things like the fact that if i get too cold it can take hours to warm up.
if i get too hot it takes hours to cool down.
this can cause trouble because i am likely to moan about a heatwave even though cold makes my pain much worse.
so maybe if she is struggling to put it into words, be patient.
sometimes i lose my train of thought.
sometimes it is stuck in the station, or there may be leaves on the line.
i seem to be talking a language of my own.
close friends are wonderful because they seem to instinctively know what i’m trying to say.
sometimes i can see the irritation on the faces of close family members but i have learned to keep the offence i feel to myself.
everyone will probably give a completely different reply to your question because we all have different experiences of the symptoms.
make sure that you go out together and not just to tesco… have fun together because it can get to the point where the only entries in your diary are medical appointments.
i really feel for you but unfortunately my reply must seem like the ravings of a loony.
good luck and take your time to get used to it all.
you just learn as you go along, as will your wife.
i phrased it as my thermostat gone wonky
Hello
(I love Caroles answer!)
Having a diagnosis of MS can take a person some time to wrap their heads around the various feelings it raises. People tend to go through stages, from despair, through utter rage, panic and fear. Often those of us with the diagnosis find it difficult to discuss at first because we just don’t know exactly what we feel.
So while you want to discuss the elephant in the room and try to figure out coping strategies, your wife is probably nowhere close to being able to talk about it yet. But that stage will come I’m sure. Be patient with your wife, let her know how much you care and that you’ll be happy to wait until she’s ready. Make sure she knows that as far as you’re concerned, both of you have been cursed with three nasty health issues.
Many of us are aware that our MS doesn’t just affect our bodies and minds, but the lives of our partners and families too. Your wife perhaps hasn’t understood this yet.
One of the biggest problems to get used to with MS is the unpredictability of it. We none of us know what will happen, what the disease will do to us over time and how disabled we’ll become. If she’s lucky (assuming that is possible given her recent diagnosis!), then she’ll not be too badly affected.
Problems with hands are a flipping nuisance, but there are ways and means to get around them. I have big problems with my hands, I can’t write really anymore, but I manage to still do crosswords using pencils with elastic bands wrapped around them. In fact elastic bands are essential for me. I wrap them around cutlery so I don’t drop so much food. In restaurants, I ask for small cutlery (and wrap bands around the forks). In fact I have a small fork which lives in my handbag (with a decent elastic band round it). I use straws to drink through so it’s easier to manage glasses etc as well as avoiding choking. I love my iPad. As I can’t use a traditional keyboard anymore, a tablet style keypad is essential for me.
Eventually your wife will find what works for her and what she needs. You could gently suggest she finds her way here where we are a supportive community who understand what she’s going through. But don’t push her if she’s not ready to talk to anyone at all yet.
I think she’s lucky to have you, and I’m sure she appreciates you too. Sometimes that can be difficult to express.
Best of luck.
Sue
Hi you have said it all on here, now tell her how you feel.
She just needs to know you will be there for her. Support her and find an understanding and common ground you can both cope with. MS has a lot of trial and tribulations. It is frustrating and she will get angry and unintentionally aim some of the anger at you, BUT just remember its not personal. I liken it to a form of grieving. One day you have a life that you took for granted then you wake up and everything is changed. You have to start using commodes, and pads, and use special adaptations for opening jars. You feel so frustrated, you cant just go out and walk like you used too or drive or even work.
It will get better but she will need you but not fuss over her, let her try things for herself, observe and learn. Then if you see something she particularly struggles with, go and research it, and see if there is something you can get that will help her but do it by stealth. If that makes sense. People don’t want to be reminded that they have disabilities and perhaps giving her a special can opener and say to her i think it will help just reminds her she needs it.
My husband just let me find my own feet. If i needed him he was there always in the background not far away. when he was at work i had a care giver a personal assistant who could take me out. When it came to the time i couldn’t do it myself.
My husband and I did invent a new language together though lol. Talking for me was a chore as darn i wouldn’t be able to think of words or what I wanted him to get for me lol, and we would use little code words and he learnt over a few months it was like our own MS Morse code lol. Every day at 11am, he would make me a coffee and bring me my chocolate rice cake and we would sit and chat. He would have a coffee too. We used to laugh at me as before i got MS I was TEACHING COMMUNICATION lol, so perhaps that is why i knew how important it was. I mean we never quite went the route of smoke signals lol but still we had a laugh trying. some days was fine, but other days i was stumped i found that the most frustrating thing of all.
Then sitting just sitting was a real chore my legs would tingle and fizz and burn even more hanging down, so we discussed it and i got myself a recliner. Best thing I ever did, and when i went to bed early he would hop onto it lol. Humm yes i did find him sometimes snoring his head off on my recliner when he failed to come to bed lol and the cat would be laying asleep on his chest lol going up and down with each breath of air.
You need to find time for yourself too dont forget that.
I wish you both long happiness together as really things will change but love should stay strong enough to get through the worse things in a married life. MS is just one option we get given.
xx
Hi, my husband brought me a book when i was first diagnosed ms naturally by Judy Graham its got some really good advice and gave me hope and 8 years later still does.
MS affects both of you. It will frustrate and anger you both at different times and after different triggers, however if you have the good lines of communication you can avoid being angry at the same time, anger is a massive energy stealer and shuts down the listening to others (empathy) channels.
My wife & I deal with this by trying to ensure we both get some “free - me” time and also being brutally honest when either of us is feeling really bad. This honesty gives us a chance to respond with conscious thought rather than going with reflex responses. It does not always work for us but helps a hell of a lot of the time.
Good luck
Mick
Maybe you can save some energy and reduce frustration if you accept that there is nothing on that list that you can do, so put your effort into making the best of this crappy situation.
So much easier said than done, but in my experience it has freed up energy which has allowed me enjoy some of the good stuff.
Good Luck
Mick
i understand it must be hard for you. especially if you are the type of chap who likes to fix things. my husband has always been tinkering with a car or somebody’s lawn mower. his frustration at my diagnosis because he couldn’t fix me was almost suffocating me. so i told him bluntly that the ms was MINE and whilst i appreciated his concern i was the one who had to live with it and i must be the one to deal with it. i wish it was a person so that i could beat it up! in that case i’d happily let him do it for me.
Hun your in shock and also grieving when a partner gets a disease like MS or COPD (MY husband had that), we both get the effects of it.
MS chucks a lot of stuff at us. My husband was an engineer, a very fine engineer and he would cry in front of me with frustration because he couldn’t FIX ME. My answer to him was simple. Just love me, hold me when i am scared, and be there for me if I need you.
Thats what we did. I supported him through his COPD and he supported me with my MS. We talked about having chickens yeh I know but I used to have them growing up and we felt it would do us both good. We had about 18 I think, and Mike would help me with them, and we worked as a team with them, and had great fun. I would often find him in the garden snoring in the sunshine with chickens all over him asleep lol. We also did off road production car trailing we had some classic cars, and decided for as long as we could we try to live a normal life.
we muddled through for years went fishing and on holiday until he got weaker and so did I. BUT he never pushed me, he knew my limitations. He seemed to instinctively know that when he got home from work it would be a good idea to order a takeaway without saying anything “what no dinner”? He never made me feel guilty for being disabled.
Having MS is not the end of life its just a new beginning with different ways of dealing with life. Lots of people have MS and are married and have long lives together. It is what it is.
I would never have wanted COPD i used to get so upset watching my husband struggle to breath, hear his chest railing yet he always got up and went to work so we could have a good life.
Like i said just be there for her. TALK, talking about how you feel is so important. If you cant talk to her talk to a counsellor.
When i lost my husband so suddenly it made me realise that life is fragile and we have to make every second count with the people we love. Take each day as it comes. You have a stormy road ahead. I think most people will agree that, as MS chucks up so many different emotions at us we can be very challenging to live with lol. Just remember its not personal.
I wonder if your questioning yourself, if your not sure you have the courage to deal with this as you love your wife and feel vulnerable because you don’t want to let her down. I know my husband felt that way he told me so. But i told him just do what you feel you can, and the rest will just be put in place around us and it was. I can still see him outside on the bench surrounded by those chickens lol… he was some guy.
Lovely info and great tribute CC
Mick