Morning all. Does anyone else share my frustration over how difficult it can be to describe your symptoms? My partner will ask me how I am, and if I’m having a bad day I find it so hard to be specific about why. There’s pain, but its not ‘normal’ pain, there’s numbness but its not a total loss of feeling, there’s fuzziness, there’s tiredness but sleep doesn’t help, there’s weird vibrations… And the list goes on. Whilst hes’ sympathetic it frustrates the hell out of me that I can’t explain things in a way that makes any sense so he can’t really understand. (Although I’m very relieved he hasn’t experienced any of it himself!) Talking to anyone, even clinicians, leads to the same frustration. The only person I feel really gets it in any way (apart from fellow MS sufferers of course) is my MS nurse. I’m very lucky to have a lovely one! Kaz xxxx
Yes i find it just as frustrating as you very hard to explain to husband and friends how you are felling and what pain discomfort you are in just been out to local shop in the car and at the moment walking 20 yards into shop getting bread and milk i had to shout to husband in the car to come and get the bag just because my ankles were so painful and swollen i didnt feel safe holding the bag good job i didnt drive myself to shop. we just have to remember the people that truly are friends and loved ones will try their best too understand and help as much as we will let them as that is a big problem for me excepting help. Take care Katy
Hi Kaz,
I know what you mean, sometimes I find trying to explain things makes them sound silly or weird and then I wonder why I bothered to try, plus I have trouble with word forming sometimes, so what I am struggling to verbalise in the first place, doesn’t even come out right !
I usually just kind of catogarise it like: Sensory heightened today, or left side sluggish today or a bad bowel and bladder day
…and like you I’m lucky with a great MS Nurse 
Jools
X
I came to an agreement with my hubby, he dutifully asks me on numerous occasisons how am, i always say “fine”. he said recently “but your not are you”, he was right but I didn’t want to run through the list of different things happening, a) it must be quite boring for him, and b) I just don’t ha ve the energy.
So we came to a an agreement that he waon’t ask me so often, I will probably always say i’m fine but if i’m really not, i.e. feelin so bad I can’t cope or need medical attention I will be honest and tell him.
It works better now, he can see when i’m having a bad day but knows to just let me get on with it (i’m feircly independent).
I know he worries, somethings I just can’t hide, like the poor balance, shakes and dropping things but i feel better in myself if I push myself to carry on and try an ignore them. Although, sometimes it’s just not possible.
I do find it hard to explain symptoms to family and to medical people, sometimes I must sound contradictory and muddled, i agree it’s really hard to verbalise to anyone except you guys on here.
I’m hoping my new neuro will be more patient andnderstanding than he last one
xxx
S
hi kaz
try explaining it in electrical terms. the insulation on your wiring is damaged and so the signals get interrupted.
my son was in australia when i got my dx and he was away for 2 years.
he had qualified as an electrician before he went travelling.
when he came home he gave me a big hug and a kiss, then asked me to explain ms.
i showed him a diagram from one of the ms society booklets.
he said straightaway that i needed a rewire!
if only!
carole x
Thanks guys I have a printout which gives a very good explanation of MS, but its always the very specific symptoms which are peculiar to MS that defy description! I fully undrstand the feeling of sounded a bit muddled. The more I try and explain the more daft it sounds even to myself 
Kaz xxx
I find it hard to tell anyone what I’m feeling. I don’t want to go on about it and be a bore or make a fuss. My husband has got upset when i haven’t been honest but when I tell him things he often dismisses them. I know my left hand has changed and been damaged by MS but how to prove a feeling. Like you say, it all sounds crazy and imaginary. The joys of having an invisible disease.
I can definitely relate to that. My partner will push for me to tell him how I’m feeling but when I try I feel like he’s wondering what all the fuss is about. Which may well be unfair to him, but its how I feel. Kaz xxxx
I know I have the same problem I try to explain but sometimes I just don’t want to be asked as don’t want to moan as just sounds stupid and like I being lazy. Sometimes it just feels like I blaming MS for everything. Sometimes I cant even form a sentence as feel to tired. I try so hard to do all the things i used to do but just feel to tired all the time and one minute I can be as high as a Kite other times it feels like the end of the world.
My frustration is that my husband won’t accept it when he asks how I am and I say fine. Sometimes that’s shorthand for ‘I’m not really fine but I can’t explain what’s up/how I feel’ but usually it means that I genuinely feel ok.
He’s also learning not to respond to every crash of me dropping something, and I’m learning to yell that I’m ok when he needn’t respond.
It’ll take time for us both to adjust but we’re starting to get there.
With me i dont think im ever fine, best way is good bad days, or bad bad days! I havnt felt right in over a year, i hate it!