Erika, my Dad used to get those seed catalogues. One time he read an article in one that suggested planting a 'pomato' plant. You take a potato, core it out and plant a tomato in that. Then you plant it just like a potato. What a bumper crop of both he had. They both fed off the other.

Doydie,

No fair!
Planting such an idea in an avid gardener's mind in the midst of a northern Canadian winter borders on cruelty .

Of course you realize that I will be hollowing out a potato, putting a tomato seed in it and planting it in a large pot...just to see what happens before it eventually either gets leggy and dies from lack of light in my living room, or needs to be dealt with in some way because it has outgrown its pot or its vines have taken over the living room.

Erin,

The fatigue as well as the ever changing symptoms is a great concern. Please see your doctor (I know what a drag that can be), but you need to make sure that you don't have an infection or that something else is going on that should be treated.

I think that some fatigue is a part of the MS for most of us, but what you are describing in your latest post seems extreme. Having to deal with ongoing symptoms and a few new ones entering the picture as well, can be a cause of the fatigue all by itself. But from what you have posted over the last few months, you and your family has had to cope with some major stresses and health situations as well. Maybe it is the cumulative effect of all of that over time that is causing the degree of fatigue that you experienced, but it really is important to make sure that something else isn't causing it.

Please be kind to yourself and your body, even when family members seem to not understand or fail to be empathetic. For sure your Dad and Mom have their own issues to contend with, so they may not realize what you are going through, so you need to decide what you can and can not do, through being honest with yourself first and foremost.
What is, and has been on your plate is a lot to deal with for anyone, never mind also having the emotional frustration of being young and physically disabled; and having a family’s health & mental/emotional issues added to it.

I worry about you feeling like you are stuck at home and also that you are spending so much time on your own, alone in your room. That’s probably similar to your parent’s concerns, and why they want to get you out for dinners etc. It does sound like some of their motivation might be for your mother’s benefit, but I do think that they have your best interests at heart, as most parents will.
Maybe you can satisfy them as well as your need to get some socialization and time away from home by making plans for a meal or an event with them in advance, so you have time to prepare for it and rest before actually engaing in it.

All of us need to get some socialization in, besides going to doctors and PT. That socialization might not include going out because of physical limitations, but it can still be satisfied by having others come in to visit, or even by spending some quality time with family at home.
Perhaps you can plan to have a meal delivered like Chinese food, and then you can all share that while watching a movie together and/or doing something together that you can all enjoy. Something like playing scrabble or another board game might do the trick. Anything like that might help to reconnect with family and friends in a more positive way, especially if you decide not to discuss health issues during that time, while still allowing for the needs that your body demands in the comfort of your own home.

Over the holidays I spent some time with shut-ins in my community. While some were expecting family & friends to visit, there were a few that had no one. Their disabilities had made it virtually impossible for them to go out on their own, so other than hired health care support services, like homecare, coming in a few days a week, they spend their time alone.

I can’t describe what a joy it was to be invited in to visit with them. My goodness, the stories that they told and the laughs that we shared…even poking fun at those able bodied individuals who were out and about, going full tilt, hair straight back in preparations for the Holiday Season, while we sat peacefully sipping tea, sharing stories and stroking their pets.
Although it was a bit of a struggle for me with this body to do that, I wouldn’t have missed it for the world.

To know that just a short visit like that brightened someone else’s day, and let them know that they mattered; that someone cared and loved them brightened mine as well. I found two new friends doing that over the holidays and although we may not see each other physically very often, I’ve been connecting on the phone and via email with them.

This Sunday we’ve planned on all getting together for a short visit at one of their houses so we can go over the “mysteries of how to send and receive emails”. I’ll be picking up the one lady and taking her over to the other’s house (the one that has a internet but doesn’t know how to use it very well), and then will deliver her back home again afterwards. Hopefully those two will connect as friends after that as well.

I know that this may sound pretty insignificant, but for these two women, and the potentials it has for reducing their isolation, it is very significant. It is also very significant for me because it has given me a greater perspective on my own situation.
Yes, I love my privacy and also very much enjoy living alone, but I now see the need to remain connected to others, and to expand my horizons beyond the walls of my home and mind.
There is a huge difference between living alone and being alone.

I hope that you will see that too and will maybe try to get some quality social time with your family and/or friends. It really does take the edge off of the physical symptoms and elevates mood, opens the heart, and puts some freshness of thought into the mind.
If not for them, do it for you .

With love, Erika

Sorry E rika

Erin can you Skype or face time any friends and have time with them. Anything to interact with people. Do you belong to a church that you could have a Bible study in your home. Let some one else host it so they could be responsible for treats. Any craft club?

Erin,

I second the idea of a craft club. I bet you would have fun getting together with others who knit, it is such a relaxing art, and not just anybody can do it.

I knitted my sock monkey that's my avatar...been making them since before they were cool..even though it kind of defeats the purpose of recycling old socks.

But wiz is right, that doing something with other people is a good thing.

I'm a member of an online knitting/crocheting group that's also a group of fans for my favorite tv show.

I just spent all afternoon online with about a dozen of them in a chatroom, talking about knitting, the new episode that was aired today in England of the show we watch, and just life. I wish we all lived in the same area. They're from all over. Some are here in the states, but at least two of the people I was talking are in New Zealand, and several in England. I really do wish we all lived near each other. I have a feeling we might all have a lot of fun together.

There's a whole group of us that are writing fan fiction together, (I'm not a writer, but I can think up scenes for someone else to write. But, I have written a couple of extremely short stories)

This group has been the most fun I've had online. They've been really helpful with my knitting. They've given me more help with things, just looking at pictures of stuff that I've knitted. I've been crocheting for most of my life. (since I was five, and I'm 44 now) So, at least I can help sometimes with crocheting stuff.

This group has basically helped keep me sane the past two years. Yeah, they might all be in other parts of the planet, but I've had tons of fun with them all online. I never would have even attempted writing the couple of short stories that I wrote if one of them hadn't actually challenged me to do it.

I might attempt knitting a sock monkey, or at least some sort of amigurumi (Japanese name for crocheted/knitted stuffed toy) I'll probably just end up crocheting a teddy bear or something later tho.

Erin the neat thing about having on line group from around the world means that you get exposed to so many cultures and experiences that you wouldn't if it was just local. I love my online groups. I love it that we are online. I find that I am much freer to speak and interact than I would be if they were here with me. Good luck with your monkey and stories.

I was taking Modafinil (Provigil) for the narcoleptic type fatigue, but stopped taking all meds except for LDN and Ibuprofen for a while in an attempt to give this body a rest from the medication trials and side effects that I've been going through over the past couple of months.
The body has been experiencing pain and spasms (especially at night and in the morning) as a result.

I started back on the Baclofen to control the spasms so I could get some sleep and that seemed to be OK. Then I began taking Modafinil when the extreme day time sleep episode-fatigue thing kicked back in last week. Hmmmm....a "rare" side effect of that drug is joint and muscle pain, and I've certainly got that going on over the past few days.

It has left me with quite a problem because I've been needing to use my cane to take the pressure of my back and hip spasms, as well as to help me walk because my left ankle is swollen, stiff and painful. But I haven't been able to use it very well in the last few days because both of my wrists are screwed and pressing down on the cane is just too painful. Sitting makes the back and hip spasms worse, as does laying down for too long.
Looks like I may need to go to my crutches because I need to move around more, and the crutches will put some of the body's weight onto the arm pits.

Speaking of which, this is definitely the pits because I'm now off the Modafinil again to see if that was causing the increased joint and muscle pain; so I'm nodding off in the middle of things again. In addition to that, my left leg and hip spasms & pain have become down right nasty, so its back to the PCP if it doesn't settle by tomorrow...and that probably means trying yet another drug. Can't live like this without some sort of medication, at least to control the pain; yet I'm loathe to try something new .

Passing the cheese...

With love, Erika

Sheesh Erika.. Enough is enough already!!

I hope the Doc can find something to help take your pain away
or at least, get it down to a gentle roar. Feel better soon..

I'm seeing him on Friday, as things seem to be getting progressively worse today. Urgh...you are right, enough already.

With love, Erika