Last reply 10 months ago
September Blog

My September Blog is complete, please feel free to share and comment. For those that have not read you may enjoy

I am still trying to get ho;d of MSers in the Midlands to start a meet up group.
This blog is for those who have no idea what living with MS is like as well as us suffers so feel free to share

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10 months ago

I had it on my list of “To Dos” which was too long 😉 just caught up on your site and blogs. Thanks for writing it all down. I posted a long response but in short thanks for giving me some new management ideas and adding a chuckle to my morning.

10 months ago

So pleased you like it, I sometimes think that it is useful to those that have no idea what living with MS is all about as Twitter readers are growing, thanks again x

10 months ago

Glad interest is increasing and you are helping educate not only people with MS but those affected by it.

In recent appointments with my Drs and my PT person I let them know about “shift MS” and encouraged them to lurk on the site to see what the conversations are about to understand the impact MS has on our lives and our relationships. I see people talking about sleep issues…I have sleep issues! apparently this is an MS thing…why has my Dr never asked about sleep issues? then when I said I’d appreciate something to help me sleep instead of having to take Tylenol PM everynight he acted like that wasn’t in his area…I told him it would help me manage MS symptoms and what are the two biggest issues that cause attacks? lack of sleep and stress…do they talk about how to manage them? no..they test to see now many feet we can walk in 2 minutes. Well…I tell them it matters what time of day it is and what else I have already done today. Some people look at how many steps they have done today like it is a matter of addition…they try to do more every day. I see it as a matter of subraction…I know I only get so many per day. And I spend them wisely.

I was encouraged to increase my stationary bike time with a small amount of resistance. I find that if I push past what I was doing before that I have been able to consistently up my time and miles. I keep pushing and measuring small gains. Hardly ready to throw in the towel.

I posted to a newbie on the site the way I have begun to think of MS and maybe it would help some people unacquainted with the disease- “I think of it as someone out there has a shotgun filled with myelin buckshot and shoots our brains. Sometimes they hit our spines. Everyone else either is immune or has a protective jacket so they don’t get hit. Maybe I did something in the past that makes me susceptible. I don’t know. I didn’t mean to do it! They can’t tell me what it might have been so I don’t do it again and can’t tell others to avoid it.

This buckshot destroys what it hits. Our body hurries to the rescue and tries to do what it can. It lost the user manual and either does not have the materials needed or the training to fix the myelin. To make it worse everyone gets shot in a different place, our body only repairs some of the hits, everyone is a special unique unicorn for our Dr to try to figure out…if they have the energy, the training and if they care.

We are left with a body and symptoms to try to manage and improve. We know we are all different from each other and yet somehow all the same.”

10 months ago I was hopeful that Shift MS readers would read my postings but you show little interest, well I hope you do take the time as I feel it may help some and also help those in your family that do not have MS and know little about, just a thought

10 months ago

Hey Roger

You’ve been busy again! Blooming neuralgia- I’m in bed with a cold which has given mine a bit of a tweak when it seemed to have stopped for good.

With the Shift MS meet up we had a build it and they will come kind of attitude for Sheffield and as you know it’s worked quite well. Why not mention it to your nurse to see if they can do a bit of promo for you.

All the best

10 months ago

@rogersouthall not sure if your comment about not having interest was directed at me or someone else or the general MS population as you just used “you” to identify who you felt was not interested. Vague nouns are one of my pet peeves 😉

I expressed that I enjoyed your log and just found out about them when I found shift MS and read them all. I find them very informational and entertaining. It is inspirational to see someone so out and about. My MS doesn’t trouble me (yet) as much as others but I don’t really travel much more due to my life style and finances so it is great to see someone really out and about.

I hope you continue to blog and let us live vicariously through you 😉

10 months ago

itsmewith ms, poor choice of wording, I look at my website and it informs me of who has read it, Facebook and Twitter are by far the busiest, ShiftMS barely registers, I am a little surprised but then again perhaps I need to attract readers in a different way.
You and a few others enjoy the read and with over 6k readers I will continue and who knows I may take up the offer of writing a book!!!
I appreciate those, like yourself, that take the time, thank you

10 months ago

Not sure why but I just became aware of Shift MS in the last month or so but before early June was working full time and barely keeping my head above water and had no time to attend to myself or my MS. I now realize I have to prioritize myself and my care higher than I have in the past. Have interviews coming up again for full-time work so that will be my struggle…making time for me.

I was pushing Shift MS to my Dr who hadn’t heard of it and wasn’t sure why I was telling him about it…I told him that if he wants to treat MS patients he had to understand our needs better and get in front of them a bit. Someplace like this site is where we honestly talk about our symptoms and attempts to feel better and do more. What is working and what isn’t, etc.

I also discussed with my PT so he could better understand the issues and what people are trying around the world.

I’d try all roads that go somewhere. I never Twitter but do use Facebook. I saw your note on Shift MS to visit your website so do that but without Shift MS I wouldn’t have known about it. You may have more impact from Shift MS than you know…

Anyways- thanks for keeping us entertained and informed. I’ve been promoting your site and others that I have found helpful.


10 months ago

itsmewithms you are experiencing exactly what I did and no doubt many others, the main reason for writing is exactly as you say, to let people know what we live with.
Thank you again and take great care x

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