Just continuing from a message the other day. I can’t find it…
I agree it is difficult for people to know what to say to us sometimes. But come on …!!
Talking to a close friend the other day. Asked ‘Did I still have my MS?’ I did not know what to say. We have been through PPMS before. What part of progressive is hard for people to comprehend? Or can they just not face the truth? Then she asked what my symptoms were at the moment? So I started explaining. Her answer? ‘Well, we are all getting older and things are harder for all of us’. That is the common remark I get. From older siblings, friends etc. Where do you go from there? I appreciate life becomes harder for most of us as we age. Simply because it is not so easy to make the old bod perform. But. We have that. And all the MS problems. I get a bit sick of people ringing me to complain about how hard their life is…never asking after me etc.
Oh Anne. That is so annoying ! People are so rude. You can’t compare the usual getting old stuff to MS. Also, if you’re well right now or wellish, then great but the uncertain future we have to live with is not easy to take. The person asking for your symptoms sounds like they basically don’t believe you have any… MS can strike any time and get bad very fast. Honestly I don’t know what to say.
I know what you mean Anne, one of my neighbours would regularly ask me if I was getting better. Whilst I know he was “being positive” but I wanted to shake him warmly by the throat.
I hear you! I was taken aback last week when the local branch of the wheelchair association texted me and asked if I “still want some home help?”.
I really had to bite my tongue! Well, yes please as I’ve not been cured yet. My legs still don’t work, nor does my right hand and I’m still wheelchair dependant, so anytime soon would be great.
Until they can read our minds I feel safe in the knowledge that I can politely smile and say or write pleasantly, whilst the internal dialogue revolves around the choice of dropping them into a woodchipper or wheelspinning on their face with spiked tyres. does this make me a bad person? Not sure I give a damn. M
Im glad its not just me with those kind of thoughts - i was told “the less you do, the less you want to do” i either wanted to scream, cry or if i had the energy kill!
oH if only we could magically be well enough to jump out of wheelchairs or lean off our sticks and let these well meaning people see we arent so bad afterall! Would it make their day better?