I just feel I have just been left to rot with this horrible disease. Daily I wake up and question what is the point to fight on. Zero support for anyone and your just left by the hospital and doctors to get on with it. Half the the time I think they are clueless what we are going through.
Last 12 weeks has been nothing but a pantomime with them all blaming everything going wrong on “ms” and finding the answers is either more pills and nothing more. Constantly the fatigue is getting me down just sleeping, mobility like a yo yo days unable to move or do anything and the pain stiffness in my legs just annoys me.
So angry I didn’t want this and can’t do anything to change it. Been determined for years to live a life and probably not accepting this condition then bang all caves in at once and no one around to discuss things with.
If I get another person saying to me “I know someone with ms” but they are still active I could throttle them. Every sentence now in my existence has these two words in it and constantly having to explain things.
Sorry I just needed to air my anger off somewhere as really is getting me down and there is “nothing” or “no one” you can reach out too how you truly feel.
Just feel it’s eaten my life up and that no one just two hoots.
Anyone else feel the same? Any thoughts on what to do? I just can’t have a life daily with these words in it “multiple” and " sclerosis".
I haven’t got the bottle to do it but is in the back of my mind if it’s easier just to swallow all the rotten pills and just end it. I know isn’t the answer nor have the bottle to do it but by God the thought does pass me.
I think we all have times like this; MS is a right, royal pain in the everything, and unless someone has MS, they really don’t get it at all. Sometimes, even other PWMS don’t get it either - I think it is great that some people with MS can get up and run, and dance, and have great adventures etc. unfortunately these ‘inspirational’ (another trigger word in my collection) people make it more difficult for those of us who cannot.
I have times when MS really gets me down, I’m pretty good at hiding that side of it from people (as most of us are), don’t need any additional motivational speeches, thank you.
I get through it by being bloody minded and stubborn. Not sure how others get through these times, something similar perhaps.
I get you entirely. I truly do…BUT I hope I can help, even in a tiny way. How long have you had this MonSter? What type is it?
I’ve had it going on 26 years. I’m 70.
It took 22 years to get a diagnosis. 4 of my local hospital neuro depts
and 16 neuros would not commit to it…despite me having very typical PPMS symptoms. All my tests came back normal.
Some years later, I got referred to a specialist hospital in Liverpool. They diagnosed me with Rare Spinal PPMS.
That was a welcomed response.
2 years ago, I went downhill and in despair, turned to Jesus. He saved me and life became tons better! I now live a Christian life .
As difficult as our lives are, I believe we are very valuable.
Hi I feel your pain, I too have suffered with this for nearly 20years and all those years have gone by in a flash, can I remember them, can I ek !! Yes sometimes I’ve probably had too much to drink and I’ve been told I shouldn’t be drinking on the tablets I’m on but I need something to look forward to !!! I feel like for God sake my life isn’t how I wanted it to be and for most of those 20years I feel like I’ve lived in a bubble and can’t punch my out, I feel like someone else is living my life.
I used to be a very confident, chatty person but MS saw pay to that, now I think people are laughing at me, especially when they have to finish off my words and sentences for me, as if to say shut up now, stop speaking !!!
I have a loving family and a lovely, amazing 6 year old Grandson who are my world. But they only see the out side of me, and can’t see the suffering that goes on inside. I too have thought many a time give me a glass of wine and I will swallow the whole packet of medication but that means the horrible disease that I have lived with since my early 20’s has won and I don’t like to be beaten. I still work atm but I don’t know how long for as I’ve been told I now have a brain tumour (benign) which some people say is a good thing!!!
Sometimes I bear to differ as this could be a quicker way out.
Always here for a chat if you want to off load, rant whatever at least I can try to understand your journey of MS x
Absolutely no need for apologies here - we all get it, even if the rest of world doesn’t - I won’t go through the usual keep your chin up, grin and bear it, as it doesn’t help - countless times folk have told me that I have the best form of MS - “MS Lite” I call it - so many neuro’s in the general population - this time of the year is a real struggle for me - season’s change - fatigue and pain - nights closing in - but I’m thankful that it’s the “lite” form of MS I have - MS is a real stinker and unless we are plopped in a wheel chair, folk don’t get it at all. All I can say is, try and keep with us - the fact that you are able to jot down your feelings, means that you are helping people and never forget that - we’ve got your back
Hi, life is so hard with this condition, I have progressive MS, diagnosed Feb 2007, I’m now in a electric wheelchair, pain, chronic fatigue, the lot, but thankfully I don’t think about taking my own life, because sadly my mum passed at 45yrs, cancer and my nephew at 19yrs, car crash, so I couldn’t do it, to my wonderful hubby, family and friends, I do like Emmie 1, I drink wine, me and hubby share a bottle every day, but that’s our chill out time, as we don’t have a social life (what’s that) we iron things out over it, good, bad and indifferrent, like you Emmie1 I think we should cut down, but its what we look forward to, so don’t beat yourself up. I’ll just say, all take care, we’re here for you, as you are for us.
Jean
