Happy Thanksgiving to everyone here! Belated Happy Thanksgiving to those in Canada!
It can be an especially sad time for those who have been isolated by MS. The years pass, the MS doesn't get any better, and friends and family have drifted off, moved away, or died. It can be difficult to see the merrymaking going on around us when we're not feeling well enough--or perhaps we've been forgotten as MS has been removing us from the world.
It's all very well to say that MS doesn't have you though you have MS and to be happy about everything that you can do in spite of MS but there are those who can't do so much any more, and they are the ones who tend to be forgotten.
So to all of those who are alone and without anything special today, best wishes--and places like this one are here for you so you won't feel quite so alone.
Written by
agate
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Thank you Agate, A beautiful message of love and compassion.
Thank you Agate!
I am finding that even being surrounded by family this Thanksgiving just isn't the same. I am sadly reminded of how this invisible illness makes me feel that much more alone.
Hidden please know your never alone in this. Although it might seem like it sometimes. All of us might have different symptoms, different lesions, but we are all affected by this monster they call MS.
Give the ppl around you the benefit of the doubt. They love you! And that truly is the bottom line.
And we are here. Someone is usally around within an hr or so. And you can always message me. That goes for anyone. ♡
It is very hard right now, as the guy I've been in a relationship with for over 5 years, has been in denial about my MS, & over the past 1 1/2 years has told me I should have figured out how to deal with the MS by now. He gets annoyed when I need to rest, take more time to get things done or can't travel as much, and he has limited his communication, when what I need most is more communication and support.
I feel like the lack of adapting he has done, unwillingness to learn about MS, and understanding that I just don't have the capacity to live life as fast pace like I used to, is all pointing to us needing to take a break and part ways.
It is such a heartbreaking decision. I don't know what else to do, but I feel like I'm not what he needs in life, and vise versa. Any & all advice is welcome.
This is on top of trying to finish my PhD, modifying how to live life, breaking ties with my sister, not wanting to participate in the holidays since losing 2 family members, and meeting my new neurologist to help assess other modifications to help me have a future.
I feel like I am drowning...
Thanks for listening, & helping!!
Life is getting a bit too much to handle right now
1st thing 1st Hidden You need to do what's best for YOU!
2nd l know where you are, seriously. I have been with my guy for 4 1/2 yrs. I was dx'ed very quickly compared to others. Within 3 months. Boom! My life flipped upside down. Was hard enough for me to understand, let alone him. So l told him up front, if he wants out, he can go and no hard feelings. (Shrugs) He stayed but it's not been easy. He isn't the communication type. He is the "fix it" type. He would look up online about MS . Unfortunately the wrong sights, thinking l could do all this stuff hahaha. Until l had an infusion of solumedrol at home. That was his wake-up call. Now he gets it.
Sounds like you need to find a quiet time, morning or night, when things are calm, and have a heart to heart. It's hard enough for us to understand, let alone them. Ask him for specific help, a shower bar? To move dishes or something to make it easier for you? Maybe somehow get him involved? The final decision is yours to make of course.
I am so sorry for your loss. I know how hard it can be, especially during the holidays. I try to remember that they are always with me tho. And brought joy to my life, they wouldn't want me to be sad. And you have family that love and need you. Don't deny them that.
You have alot on your plate, try to scrap some of it off, and breathe, stress is never good and for us it's worse
Sometimes we can only take one step at a time, no more no less.
Thank you @Jesmcd2 so much!! It is really helpful to speak with people who understand this unique condition, and remind me that I'm not alone. I was hoping everyone in my life would be supportive, and at least try and educate themselves with information I give them, and help me through this learning curve.
It is heartbreaking that some people I'm closest too, that I would do anything for, have chosen not to help me through this diagnosis but to be critical of me instead of respect the modifications I have made to overcome my MS.
It is helpful to hear other people's experiences because we all have a different journey, but we are not alone. Thank you again!!!
I will let you all know if things change...I really hope they do, because otherwise I plan on spending the rest of the holidays by myself.
@DeeAma, there may be times when everything seems to be going out of control, and it sounds as if this is one of those times for you. I'm so sorry you've lost two family members--that in itself is itself a terrible strain for you, I'm sure. On top of that you have a new neuro and a partner who "doesn't get it" about your MS.
I'm not sure why you need to break ties with your sister but perhaps it is an impossible connection for you. That's usually a strong tie that people hesitate to cut. Maybe there's a way you can stay in contact with her but keep her at a safe distance if needed?
This may be a time to remind yourself about the Ph.D. you're working towards and renew your commitment to that. It's an important task and you've had to work hard to get this far. The sense of accomplishment you will feel when you've reached that goal will be satisfying, and it's something MS can't take away from you.
I hope that you can put some of the problems on a back burner and decide to move ahead with things that matter TO YOU--the Ph.D., and any other activities you find fulfilling and enjoy. Be good to yourself when the times are getting tough!
Thank you Agate!! I can't agree enough. I think I just need some time away to think, work on things at my pace, & finish this journey.
This is the most difficult curveball life has ever thrown at me at one time, and I'm trying to do my best, but it seems someone will always misunderstand, get hurt, or give-up. I need to work on destressing!!
Trying to focus on something that isn't so stressful but something that matters to me often helps me when some situations are so uncertain that I'm feeling very shaky.
If you don't mind my asking, what field are you working towards the Ph.D. in? I received a Ph.D. n 1974 but MS came along in a big way soon after.
I received my PhD 36 years ago. Then after working for three years my MS was diagnosed. But I didn’t tell most people and continued to adjust what I did with how the MS compromised my abilities. Then 16 years ago I had to reveal my MS to upper management and was told to take long term disability leave which I’ve been on ever since. Still, during these last 16 years I have continued to help my wife where I can around the house and in volunteer organizations in which we both work.
I hope my experience gives you some encouragement.
DeeAma, Jesmcd2, Agate and dmaskal1 have shared great insight with you. All I can add is that I'm really sorry you have so much going on in your life right now. That, complicated with the MS, sounds so overwhelming.
When I find myself stressed and pulled in so many directions, I'm reminded of the "How do you eat an elephant?" question. The answer? "One bite at a time." I can't tell you what you should tackle first or which cIrcumstances are out of your control. But I do want to mention how important it is to keep an eye on the anxiety and sadness that is only natural with all you have going on in your life right now. If you find it escalate, see your doctor.
My most recent relapse's most obvious symptom was uncharacteristic emotional upset. Sorry, I just can't find the right words to describe it. But I didn't know I was having a relapse until my mood was so bad, that I knew something was wrong with me. That was not me! Extreme stress from home projects and relational issues with a family member triggered it all. So please be aware and take care. My heart and prayers are with you. 💕
Thank you dmaskal1 , WAshingtongirl , Fancy1959 , Jesmcd2 , agate , & all others!
I am actually seeing my new neurologist on Friday this week for the first time, and I'm hoping they can shed light on how to better know when relapses occur, and how to better manage my symptoms.
I am planning on making some other life changes to address these relationship issues, because you are right the added stress makes MS worse. I have removed myself from the environment I was in, which is a relief in itself.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
That goes for anyone. ♡
Happy Thanksgiving Thankful to all of you
