Last reply 5 months ago
Hi!

Hi there! My first time posting on this site! Never knew it exsisted and still can’t figure out how to respond but anyways, I’ve been dealing with this disease now since my son was born almost 19 years. No fun at all. I hate everything about it! Mostly my son, he needs a “normal “ mom and he doesn’t have one. I’m walking, talking, and fighting all the symptoms everyday! Always something. I’ve had to deal with catheters this year as to the bladder just stopped! Fun stuff! I take copaxone for years now and I forget to take it but all these new drugs out??? I’m afraid actually. I think looking back when reading…. it’s a progressive disease! That it is. It works on you and I hate every minute of it. My only question is why? Why do we have to suffer?? I look forward to checking you all out😁

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peterfrancis
5 months ago

@julie_richards

Hi and welcome to the site.

Why do we have to suffer this insufferable and maddening bitch of a Disease?… Well, no one knows, we are the unlucky select few I guess.

Try not to let MS destroy your relationship with your son, do all you can for him because some day you may well need him.


robert_root
5 months ago

I’m new here myself, if you figure it out let me know.


stumbler
5 months ago

Hi @julie_richards and welcome.

As for using this site, if it feels right, then just do it. We’re a very informal bunch, so we tolerate errors, a fact of life now, and provide advice and solidarity where needed.

With the existence of technology today, we have no need to forget about taking drugs. Use your PC/i-Pad/tablet/mobile phone/Alexa/etc. to provide a timely reminder. We can have enough issues, so delegate some of these simple tasks to our tech.

Why do we have to suffer? Now, there’s a rhetorical question, if I ever heard one! Why do we have to suffer? Because we’re strong enough to take it. We may not always feel that way, but remember, individually we may be weak, but together we can be strong. 💪


grandma
5 months ago

Hi Julie and welcome! I’ve had the beast for 25 years, still here, still fighting, I have a 39 yr old daughter and a 14 yr old granddaughter. My daughter was 14 herself when I was dxd, went through a year of hell, she didn’t deal with it well at all, but the other half and I were determined that she would have a ‘normal’ teenagehood. When I was back on my feet and she realised that mum could still drive, take hay to her horse, pick her up from college every weekend a couple of years later, she changed back. It takes time, and in fact when she became a um herself, I was used frequently for babysitting duties, in fact I bought my granddaughter up in the sense that it was Nannyy thar taught her to read, swim, bake. I can’t now because I’ve gone down big time in the last year, but the basics were already there and hopefully she has had a good start in life. Your son will be the same, he’s a big boy now and should understand that mum needs a lie down occasionally to be able to get up and get dinner as usual!😜😍


julie_richards
5 months ago

This ms sucks period!! I take a lot of meds just to get through life and ms. Of coarse I need two new knees and that has really screwed me up! I need replacements but I’m fat and my fat in settling near the knee. Plus the ms! I can’t bring myself to watch the surgery on YouTube. So I go to therapy twice a week and I go get tuned up with the shots every three months and do I have falls yes but I try hard not to. I have what I call outside of being paralyzed for the very first time the worst ever burning all over my body! I mean like normal people get neuropathic pain burning on the feet maybe in the hands but when I tell you that it is all over my body I have tried every anti-convulsant medicine and nothing works now I’m on gabapentin I take the fent patch so everyone goes crazy about that! I hear lots of stories oh I did it and it’s fantastic but this top notch surgeon said I have to get off all narcotics and I will have a long and hard recovery to the tune of a year. I am frightened so I think I’m going to try my best to strengthen the hell out of my legs and they keep getting tuned up . Depression and anxiety is my middle name. I own a car that I making payments on and the insurance but my son drives it to work and to school so my socialization skills have just gone down the tubes for the last two years I miss being out and trying to be a person in society but I don’t have a car and I don’t have the money to set aside to buy one and I’ll tell you there’s not many people out there that are dying to help me but I guess is part of a sacrifice for being a mother !! I hate M Mas I hate it with a passion I can’t except something that is on acceptable


stumbler
5 months ago

@julie_richards , there won’t be anyone who would disagree with those sentiments.

But, it is the here and now, so we just have to make the best of a bad job. Don’t give up and keep on “tuning up”. Little and often is the way to go.


robert_root
5 months ago

I couldn’t find you on facebook, here’s mine robert.root.714


vixen
5 months ago

Hello @julie_richards, welcome to this very special club! You won’t always find answers here, but you will find company and people who understand what you are going through. I see you are in Florida, so, nice! You could be in cold, grey, miserable London, I know where I’d rather be! Your parenting era is coming to an end (although trust me, it never really does) and that means your life will start to take a different direction; it’s up to you which direction you wish you push it. The thing about this disease, and our symptoms, is that bearing the symptoms every single day is very annoying and tiresome. I find that they become less so when I’m distracted by people, or by doing things. Sometimes, I even forget I’ve got MS. So, I can’t give you a wise answer about why we have to suffer. I’m not religious, but Buddhism has a lot to say about it (‘life is characterised by suffering’). Anyways, I wish you well, and hope you find something which takes the edge off your anguish. I hope you find that Shift is a good start x

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