New physical limitations

[swingingwillow]

I've been trying to figure out my new physical limitations whether they be permanent or hopefully temporary.

I've missed spending time out of the home with my daughter.

So today I think I've solved that issue. I'm driving us to the movies. Then I can sit and watch the show with her. Afterwards, I'll come back home and lie down for a while.

I'm hopeful that this will work well for me and that we will have a wonderful time.

Are there any things that you do to work around your limitations when you don't even know what's wrong with your body because you're in limbo?

[Jordan Ross]

Hi from Jordan.
I am New to MS.
Read your posting: re you, your condition, your posting,
your daughter, the movies etc. My children live in Pitts with my 2 granddaughters.
Good luck with All.
Jordan

I've been trying to figure out my new physical limitations whether they be permanent or hopefully temporary.

I've missed spending time out of the home with my daughter.

So today I think I've solved that issue. I'm driving us to the movies. Then I can sit and watch the show with her. Afterwards, I'll come back home and lie down for a while.

I'm hopeful that this will work well for me and that we will have a wonderful time.

Are there any things that you do to work around your limitations when you don't even know what's wrong with your body because you're in limbo?

[swingingwillow]

I am back home and have rested after the movie and although my gait was a bit off and I have pain which is only 1/10 in my feet I consider my trip out of my home giving me some hope.

I have had poor gait etc since October and have been bedridden and mostly housebound so I'm quite pleased at the mo.

I am anxious as I still have to wait until Feb to see another neuro with my MRIs. I really don't want to have MS.

In addition to my new lifestyle diet, my outing today has made me want to try and walk down the street and back a bit tomorrow.

This "trouble" may seem boring to some people but it was an important day for me. It allowed me to connect again with my young daughter who has a mom who can't do the things that she used to be able to do with her.

[FourPaws]

It's awkward when you're in limbo because it's hard to explain it to others (I spent 9 years in limbo) and it's also hard to sometimes self validate. It took me years to finally use a cane and it made my life so much easier when I was in flares or too hot or walking long distances. But everyone you know stops and asks you why you're using it. It can be draining. Remember that what you're going through is just as valid as someone who has a label to put to it.

I think you're doing good in getting out of the house. It's good for your mood and body to be doing that. You have to work around your abilities, as you've been doing, but if you can find small manageable trips, you're good.

When it gets warmer, depending on her age, it's easier to get a comfy lawn/camping chair and perch in the shade on it when you go to a lake/playground/beach. For now, if there is a family friend that you can go to with her and play board games or do other more sedentary activities that's good.

It's an adjustment for you both. No it's not fair, but this is the reality for both of you. My father had a major head injury when I was 10 and things changed very dramatically for us then. I didn't resent the fact that he couldn't play like he used to. I was sad about it sometimes, but it also taught me a lot of things. As bad as I feel for my dad, I'm glad that I had that experience because it taught me that my kids can get through this just fine.

[Hope13]

I am a fellow limbo lander with fatigue and walking difficulty. I struggle with the same issues with my 6 year old son and trying to still do things with him. Although I do have a lot of physical limitations, I am currently coming to realize that some of my limitations are from my own pride also. I don't want people to see my weakness or look at me and wonder what's wrong. I am also searching for answers on how to participate in my sons life and life in general, especially while still trying to work full time. Just know that you are not alone.

[swingingwillow]

It's awkward when you're in limbo because it's hard to explain it to others (I spent 9 years in limbo) and it's also hard to sometimes self validate. It took me years to finally use a cane and it made my life so much easier when I was in flares or too hot or walking long distances. But everyone you know stops and asks you why you're using it. It can be draining. Remember that what you're going through is just as valid as someone who has a label to put to it.

I think you're doing good in getting out of the house. It's good for your mood and body to be doing that. You have to work around your abilities, as you've been doing, but if you can find small manageable trips, you're good.

When it gets warmer, depending on her age, it's easier to get a comfy lawn/camping chair and perch in the shade on it when you go to a lake/playground/beach. For now, if there is a family friend that you can go to with her and play board games or do other more sedentary activities that's good.

It's an adjustment for you both. No it's not fair, but this is the reality for both of you. My father had a major head injury when I was 10 and things changed very dramatically for us then. I didn't resent the fact that he couldn't play like he used to. I was sad about it sometimes, but it also taught me a lot of things. As bad as I feel for my dad, I'm glad that I had that experience because it taught me that my kids can get through this just fine.

Thank you for the perspective from your childhood. My guilt over some of this stuff is strong at times.

I went out with my family last week to do a couple of sedentary activities but I didn't have to drink, however, at one point I had to go for a walk. After that walk I was so grateful that I had put my cane into our vehicle because I got it out and although my gait was off the cane helped me motor along much better and allowed me to continue with my day.

I hear you about people asking about the cane...ugh. I need it sometimes though.

Thanks for your encouraging comments and for sharing your story.

[swingingwillow]

I am a fellow limbo lander with fatigue and walking difficulty. I struggle with the same issues with my 6 year old son and trying to still do things with him. Although I do have a lot of physical limitations, I am currently coming to realize that some of my limitations are from my own pride also. I don't want people to see my weakness or look at me and wonder what's wrong. I am also searching for answers on how to participate in my sons life and life in general, especially while still trying to work full time. Just know that you are not alone.

Thanks Hope! Maybe we can trade somewhat sedentary activity ideas.

I found that the movies worked really well. Also, going out for dinner as a family works well too.

At your son's age maybe there's one of those indoor play places where he can run around and play in while you mostly sit and watch? We have one around us but my daughter is nine and has outgrown it, but I used to take her there when she was younger and I didn't really have to do anything and she thought I was the best mom for taking her there. Plus the seating was cushy - it was like a big rubber room!

My daughter's birthday is coming up and I will order as much as I can online but if I need to go out I will take my cane with me and just do one store a day.

When I was working I had a day on the weekend that I had to rest and have low activity in the house and then one day on the weekend that I could do more out of the house. Maybe there's one day on the weekend that would work for you?

As for activities in the home I'm thinking board games, renting movies on the TV, and having one of their friends over and they can entertain themselves.

[FourPaws]

Also, when shopping (and this is where having the cane helps) don't hesitate to ask for help loading it into the vehicle. Then when you get home, kids unload and put away. This allows you to save that precious small bit of energy to use in another way.

Fatigue by and far is my worst and most debilitating symptom. But then I've likely got chronic fatigue along with the MS and fibro so it kinda all puppy piles.

Hang in there. Remember you are doing everything you can and that is all anyone could ask for. Us moms try and claim responsibility for everything, but you didn't ask to be sick and you didn't ask to have a hard time with this. Ergo, it's not your fault in the slightest. Try to cut yourself some slack (which is easier said than done, I know).

[swingingwillow]

Also, when shopping (and this is where having the cane helps) don't hesitate to ask for help loading it into the vehicle. Then when you get home, kids unload and put away. This allows you to save that precious small bit of energy to use in another way.

Fatigue by and far is my worst and most debilitating symptom. But then I've likely got chronic fatigue along with the MS and fibro so it kinda all puppy piles.

Hang in there. Remember you are doing everything you can and that is all anyone could ask for. Us moms try and claim responsibility for everything, but you didn't ask to be sick and you didn't ask to have a hard time with this. Ergo, it's not your fault in the slightest. Try to cut yourself some slack (which is easier said than done, I know).

Thanks FourPaws

And as for my above post please insert "drink" with "drive" - instead. What happened there? It gives it a totally different context lol!