My journey with MS
My name is Dot,
I have been living with MS since I was in my early 20’s. I had mono as a teenager which I believe started my MS journey. I have bowel and bladder issues. I find it very difficult to cope sometimes. My husband is so frustrated. I do not sleep, so I am always exhausted. I tried Sativax but it really only helps me sleep awile.
Please any suggestions
Thank you
Dot
I have fought "painsomnia" for years.I tried everything any ever suggested it was so bad...I now use cannabis (Indica) daily at night. A strict regiment of NO phone in bed. I read for a little while then take 1 more dose of indica, turn the light off, and let sleep come to me. The come to me part was difficult to understand, but when I figured this routine out...sleep has not been the issue it used to be. I don't know how you feel about medical cannabis, but as soon as... I... got over it, my life changed. Good luck my friend...)~^,>
Hi,
(Dot), and welcome!
I always tell folks that I wish you didn't have need of a community like this one, but I am glad you found us! You'll find a lot of people who can relate to what you're going through and who know how challenging life with MS can be.
I'm sorry you're husband is frustrated. Is it one particular MS issue that stresses him out or is it just the disease in general? We know MS can impact pretty much every aspect of one's life, so if he's upset that you're tired all the time or struggling with bowel issues, well, I hope his frustration is directed at the MS and not you, if that makes sense.
And, yes, sleep and MS just seem to go together as well as oil and water! And, if you *do* manage to get some sleep, you don't even necessarily wake up feeling rested and refreshed! And this is a pretty popular topic in this community; we literally have multiple articles and stories on the topic of MS and sleep. I wanted to share a couple with you and hopefully, you will find some new tips to try to help you get better, more restful sleep. Here's one -- https://multiplesclerosis.net/living-with-ms/10-sleep-hygiene-tips. And this compilation of member tips is about MS pain keeping one from sleeping well, but I found the tips helpful, whether you're dealing with pain or not -- https://multiplesclerosis.net/living-with-ms/treat-painsomnia;
Is there any particular cause of your sleeplessness? Is it pain? Racing thoughts? Have you always struggled to get quality sleep? Also, MS fatigue is a very real thing, so you may be feeling exhausted, regardless of how much sleep you get. I don't want to overwhelm you with articles and tips, but I will share if you are interested in that type of information.
Please know you are not alone here! So, please, come here anytime you need to vent or feel supported. And please don't hesitate to reach out if you have more questions. We're happy to help in any way we can.
Best, Erin, MultipleSclerosis.net Team Member.
