Last reply 4 months ago
Is my condition bothering you? So sorry

Good early morning everybody, I’m up as have a cough and bit of a chest going on.

I think it might, hope anyway, just be back end of a cold.

I’m not used to colds really and find them tricky to recognise until I know for sure, near to when it’s on its way out.

Anyway;

I’m up as coughing a bit and my mind is doing something I tend not to do and “Think”.
Never been one to do that and for that I am grateful of as, in my eyes, that is a recipe for a complete shut down,
I’m coping, I think,

I’m thinking how maybe I’m upsetting people and causing unsettlement in people then, WOOAH HANG ON!!!

My “cold” is most likely because I went 11 weeks off Tysabri after 7 years and 73 infusions and am due to start 2nd week of Mavenclad tablets and I’m told my immune system is going through a complete overhaul.

*******************no bold option******
Bit of background there and here is my reason for being on here this morning;
*******************no bold option******

Why have I considered to put blame on myself when I’m the one struggling through my, seemingly inconvenient disability, surrounded by people, not their fault mind, who are ignorant to My condition through their lack of understanding as to how it affects me?

I’m not claiming to know understand my condition myself and am in now way expecting anyone also to get it either.

Only place I can go for a possible, “sensible” answer, but, does any of this make sense or relate to anyone out there is this dark world, dark MS World?

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dvtrv
4 months ago

My mind works better the earlier the time of day,
By the time others wake I’ll be knackered and most likely be struggling to string a coherent sentence together.

I decided to copy the first part of this thread and show it to someone I know but then stopped as couldn’t think of anyone else other than the only people I can think who’d read this an possibly have a snippet of “understanding”.

We’re are all different any, even with the similar diagnosis of MS.

Jus sayin


grandma
4 months ago

@dvtrv know exactly what you mean. Typing this at 7 in the morning. Been up fir an hour, just posted a lament cos I’m losing the dogs. Will be useless by lunchtime, good excuse for lying round all afternoon but explaining to people is still a pain in the but, but knowing I don’t have to explain to you peeps means a lot👂😍


dvtrv
4 months ago

@grandma

Just researched lament.

Sorry to hear


stumbler
4 months ago

@dvtrv , how can you really appreciate something, which can vary in size and intensity, without experiencing it firsthand?

You can’t! 😕


stumbler
4 months ago

@drtrv , and keep an eye on that “cough and chest”. You don’t need any untreated infections.


dvtrv
4 months ago

@stumbler

Hey there.

Are you aware how affective a few words from you can be so reassuring and soothing?

The response to your question is, you can’t.

Ooh the frustrations of MS hey, it’s an isolated lonely place.


nutshell88
4 months ago

Hi
Ive had MS for 14 years
Been on treatment couple of years
Then stopped it for 9 years
On gileneya now
And i know how you meN about UN understanding surroundings
Family are fully understanding
But i rather not telling anyone i suffer MS
Im thin weight wise i’d rather people think my exciting way of walking is because of my weight
Was daignosrd in age 17

I hope life treats us better MS wise


mamawals
4 months ago

Well, you kind of lost me in your post. Are people annoyed that you’re sick and coughing and may get them sick? My coworkers were acting paranoid after I had my first Tysabri infusion and was really really sick but still coming to work because I have no sick leave. After my boss tried to send me home I just generally told him I have an autoimmune disease and just started a medication that suppresses my immune system, so whatever I have just seems much worse than it would be for someone else. He kind of let it go after that. I mean, I have a private office with an air purifier. I’m pretty sure they weren’t going to catch anything anyway.

In terms of letting the whole MS thing get to you, for me, I just look around and I know several good friends/relatives right now who have it so much worse that I’m just thankful for every day I have. So get out of your head and go do something you really enjoy like eat a decadent desert, watch a great movie, read a good book, or heck just spend a whole day in bed napping. You deserve it! You never know what tomorrow might bring so carpe diem.


nutshell88
4 months ago

Also Im struggling with caugh
It began two years ago
No chest infection or anything
Got better after starting gileneya

MS didnt paralize me any how
But its like black whole still


dvtrv
4 months ago

Hey @mamawals

Apologies no, not with the cold just with my MS ways.
My cognitive issues, apparent as they are not cause me to do or not do things either properly (“normal”) like a healthy person.

I have 2 two year old now, was his birthday yesterday and a baby girl due in April so no real chance of excessive napping for quite some time.

Whole point is I don’t look ill.

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