Hi everybody, I am having a problem and just wondered if anyone has had any problems with conversation due to their MS;
Pre MS, I often think of myself as shy or not very good at making conversation, I am the opposite with written communication but struggle in person.
Stood around last night with a group of colleagues chatting and I felt like I was behind a sheet of glass with everyone else on the other side-I just can’t really join in- is this MS? or stress/ anxiety/ depression/ nerves?
Some reasons I think it might be MS related are I can never think of what to say, sometimes I find I don’t seem to have the energy to raise my voice, struggle for words such as “issue”- bit embarrassing! Sometimes my hearing is not good also/ deaf in right ear!
Any experiences or ideas what I can do? Is really holding me back/making me feel so stupid, appreciate any help xxx
Hi Jess, I would bet anything that at those times, if a fairy godmother came along and told you she could wave her wand and you could be at home, in bed, you would say ‘yes please’!
What you have is fatigue. I can remember when I first got it I couldn’t understand what was going on, but felt just like you do, couldn’t hold a conversation, couldn’t think of a thing to say and didn’t have the energy to speak anyway. And yes, that feeling of being behind a sheet of glass is classic.
You say it’s embarrassing when chatting with colleagues. Do they know you have MS? Would you be able to say that you are tired or not feeling well?
I think if you can accept it’s MS fatigue you might find it easier and make changes in your life to help cope with it. For instance not going out in the evening during the week and resting more at weekends (boring I know!)
Perhaps just realising that it is MS related might help. One more thing, go and see the GP about the deafness. That might not be MS related and you should have it checked out.
Hi, I am also deaf in my right ear and it makes conversations in noisy places, and with more than one person, very difficult.
last Sunday, at my Mothers Day treat to a posh restaurant, was marred by my deafness. i am not shy (never have been), but i do feel out of the goings on, and it annoys the heck out of me. I hate keep having to say Eh/ Pardon?`
Occassionally I also can`t find the word I am looking for and say something similar but not at all related to the topic…then i get laughed at…i laugh at myself too at the time, but feel upset afterwards!
yes, we can blame MS…or whatever it is I have - as I am still awaiting a firm dx after 14 years!
What can we do? Well I did go to lip reading classes for a year, but stopped when it became charged for. The organisers decided lip reading should be charged for like a hobby!!!HUH!!
I agree with PatB – it’s fatigue. My hearing is also poor and I would class myself as shy. If I am in a group of people the effort involved with keeping track of conversations and finding the right thing to say makes my head swim. I know exactly what you mean about the sheet of glass.
I adopt the smile and nod technique; it looks as though I’m involved but really I’m not. I worry that this problem will make me a recluse so I am determined to join in with more things now the nights are getting lighter. I think more formal situations might be easier than social (meetings as opposed to chatting)
I know exactly what you mean and I certainly don’t think that it is unusual amongst MSers. I do get a bit of a sneaking suspicion that (along with the wide range of cognitive problems) it doesn’t get flagged up as a priority issue problem. Whether this is because it is a complicated/difficult neurological issue that is also often bound up with other psychological issues (eg depression, MS “mourning” etc) or physical MS effects (eg fatigue, sensitivity to noise, sensory overload with too many voices coming at you etc) so it is put in the “too complicated” file or whether it is not mentioned too much because it is considered “scary” I don’t know. I do know that my original medics tried to calm me down whenever I mentioned anything cognitive. Yes I am a bit of a panic-ferret and any loss off my mental capacity was an obvious major worry to me but I do feel that my original team were a bit condescending and “calm down dear” about the whole thing.
And, added to the MS issues, don’t forget that we may have other problems to throw into the mix that are not presents from the MS fairy (eg I am also VERY hard of hearing and have to wear 2 hearing aids. Poor hearing does also make me withdraw – especially with people who I don’t know very well – but my neurologist seems adamant that my hearing loss is my personal problem (inherited from my mum) and is over and above my MS.
In my case, I have difficulties with my speech – slurred speech (I often sound drunk), hesitant speech, loss of power in my voice, inability to locate the word I need, using wrong words etc. The effect of this on my life has been devastating to say the least.
I am a prosecuting lawyer and the majority of my job is appearing in Court. I can’t do that now because I am not coherent in Court. Magistrates have complained about me. Victims/witnesses have complained about me because they have thought I was drunk. Can you imagine how embarrassing that has been? I now completely office based and I am hoping to move to a different advisory role but if I can’t move to that role I am facing medical retirement.
Added to that, I used to be a semi-pro stand-up comedian with a strong line in dealing with hecklers. I can’t do that now so I have lost the serious hobby that I loved.
I am not mentioning this because I want anyone to feel sorry for me but to explain why, in addition to the “physical” results of MS, it has become so easy for me to become a depressive recluse. This is such a vicious spiral. I don’t go out and interact with people because of my problems. If I don’t go out and interact my skills become rusty and seem worse. The worse I get, the less I want to deal with people ………… and so forth and so on.
I have been very lucky with my Neurologist and especially my MS nurse who is a real terrier when it comes to fighting my corner. I have been assessed by a Neuro Psychologist (which was interesting but scary when my IQ was assessed as having fallen by a significant amount in the year since my last catastrophic relapse) and I have been getting lots of practical support from a very good speech therapist.
It hasn’t been a solution but it has been a big help and I would suggest that everyone who has these issues raises them with their health professionals to get all the help that is out there.
Yes I know exactly how you feel, I also feel just the same way in conversation with more than one person or in loud places.
I am not really glad you feel the same ( I wouldnt wish it on anyone) but you are not alone in the feeling by any means and I am glad to feel not so alone also.
You feel people think you are stand-offish and yet I am a friendly person and want to join in but cant very easily at all.
Oh yes and I am 80% deaf too in one ear I wonder if its a combination of many things???
Its so annoying, I get somewhere that I’m really looking forward to going and then just can’t join in. I can’t keep up with the conversation, I find it difficult to make myself heard and I would just like to be somewhere else. Anywhere else really. Last night was talking to my OH on the phone, he’s started working away during the week and I really couldn’t keep up with anything he was saying. He was mentioning dates, planning and I just had to tell him all the time I couldn’t keep up. If he doesn’t reply to my message in the next few minutes I’m going to bed!
I feel the same, sometimes I tend to stand back and not join a group having a conversation, whereas years ago, I would be the one who was the joker, liked centre of attention, not anymore, I more or less have become the rabbit, kept in the dark and fed **it… I have found a friend through friends of a friend and she has MS and we have a good old chat, laugh, say what we like, how we feel and understand the symptoms… I found this of great help personally - not sure if others would, but I’ll try anything