where did my energy go?: I was diagnosed... - My MSAA Community

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where did my energy go?

LissaH profile image

I was diagnosed about 9 yrs ago. I believe I've had MS much longer but was diagnosed with Lymes. For years that is what I was treated for. Until 9 yrs ago I was at work and was having trouble walking and my arms was losing power just limp. I went to the doctor they ordered MRI and it came back with spots on my brain in spine. I found this site and started to read peoples post, and what all they were going through. I've learned so much and it helped me to understand what I was going through because I've never heard of MS.

Needless to say I would read how people disliked the spring/summer time. I couldn't understand why because I would bask in the sun as much as I could. I couldn't get enough of it. That was before, now I TOTALLY UNDERSTAND NOW. I feel as if I'm floating up to the sun and start to over heat, and it is just sucking the energy/life out of me. I'm like what is going on. I want to do things but my body is like NOT TODAY!!! I'm always over heating and I cant' do anything but lay around. I feel like I need to wear my ice vest just to go to my car which is right outside my house. Now I can say I am one of you who can speak about the heat and no ENERGY. it is so crazy, I can literally feel the life being suck out. It just started getting hot here in Jersey. I'm afraid of summer heat. I just want to stand in the back of the refrigerator section at the store and soak up the cold. Until the raynaurds step in lol. When I go to the stores I look for the fan section and pray they have some on so I could just stand in front of them. lol Even though I carry a battery hand held fan. Sometimes that just isn't enough. Well family try to stay cool, we will get through this warm/hot season. I still love this season for all of Gods natural beauties. All the trees are dress, some have perfumes on them, some are dressed fancy with their flowers on them. Everything is green and lively, birds are chirping loud as if in the jungle every early morning. lol Butterflies are flying around. So much more but i won't name everything you get the picture 😁 Have a great, blessed day all.

38 Replies

Hi LissaH sorry the heat melts you too. I get that. so far the spring has been more like March weather here so we've had it easier without the humidity. I enjoyed your poetry about the trees being dressed as fancy ladies with perfume. Never thought of that so thanks. Have a good day. This weekend is supposed to be hot (I'm in NY)

LissaH profile image
LissaH in reply to Sandydemop

thank you, yes jersey is suppose to be in the 90's yikes. did you get those bad storms they called for last night. It just missed where I lived. the sky looked crazy for a few one side was sunny the other side looked like dooms day. Im thankful it passed us because they said it was suppose to be bad. Hopefully it broke before it got to NY.

Sandydemop profile image
Sandydemop in reply to LissaH

I didn't notice the storms but even so, we didn't have any damage. i'm loving this Spring weather today. Take Care. Enjoy some a/c this weekend.

LissaH profile image
LissaH in reply to Sandydemop

thank you. you are well

i'm sorry. i used to love tanning, but no more! even indoors the heat enervates. cold water and ice are my friends.

LissaH profile image
LissaH in reply to BlanketTime1

Im at work right now and they have the air on artic lo but not I'm wearing gloves because my raynaurds is acting up. I have a blanket wrapped across my legs so my feet dont get cold and start to spams like my fingers are. Ughh as long as they are cold they hurt like ughhhh I have not words. I cant win 😂

Sandydemop profile image
Sandydemop in reply to LissaH


yup, i used to freeze myself, didn't even turn on the heat in winter, but 2 years ago, i noticed my hands going numb, my fingernails blanching and my fingertips turning purple. i'd dreamed of moving northeast to escape the heat, but now i'm scared. we just can't win.

LissaH profile image
LissaH in reply to BlanketTime1

That is the truth. That's how I feel. I feel foolish at work wearing gloves to type with and foot warmer under my desk to warm my feet. What are sandles, i only wish i could were them. If i know i will. Be outside i can but inside closed shoes every time or i wont be able to walk. 🙄🙄😟

I'm sorry you're having heat issues also. I call it brain melt, but in addition to being able to think or see clearly, my legs are also affected. I still love a good long walk in the hottest part of the day, but last week was ridiculous and I wasn't prepared for having brain melt in my own house 🥵

Thank God for air conditioning

LissaH profile image
LissaH in reply to Tazmanian


103 today..no humidity and lots of ac..grateful. Love spring from a distance.

LissaH profile image
LissaH in reply to CynthiaS

wow I can't imagine temps like that. Its going to be in the 90's here this weekend and I'm already dreading it. my future thinking is laying across the bed with the air and fan blowing on me. haha

Hi LissaH, I am sorry you are experiencing heat issues as well. I also have exacerbations of Uhthoff Phenomenon and it can be overwhelming because my inner body feels as though it is boiling. Unfortunately, saunas and going to the beach are very relaxing but not my friend anymore. Time to reassess summer outings 🤔

LissaH profile image
LissaH in reply to SuperSleepy

I totally agree with you. I have to figure out some action plans now for the hot months here. I had a talk with my boyfriend last night about how the heat is affecting me now. I needed him to understand I may not be able to do the things we use to during the day when its the hottest. Plus i can't move as fast when the energy is sucked out of me. I need more rest. He was very understanding and I'm grateful for that. I'm sure you will find what works for you. 🙂

Beautiful. Totally understand with the heat. We’re in the 100’s in AZ. Definitely have to monitor my time out🙏🏾

LissaH profile image
LissaH in reply to JSSimp

oh wow 100 but you don't have the humidity right? We have the heat and humidity when its 80 it feels like 90 sometimes. Stay cool and thanks for your response.

JSSimp profile image
JSSimp in reply to LissaH

That’s correct. I will and you do the same🙏🏾

LissaH profile image
LissaH in reply to JSSimp

thank you

Hi LissaH.. I try to limit my exposure to the heat.. small intervals to start with.. then longer as your body permits.. I know the feeling of wanting to have "life like it was before", but alas that is not the way it is now.. we have to adapt, and do what we enjoy or can, when we can.. never loose your love of spring and summer because of MS.. Just modify your life... We all can modify something!

LissaH profile image
LissaH in reply to MsBoo

thank you everything you said is very true. I will always enjoy the warmer months because of the greenish. Winter depresses me because I hurt very much and everything here is so blah. lol I do enjoy the snow on the trees, when I'm looking outside. As long as I don't have to go out in it I do enjoy looking at it. and the snow people children make. I do partake in a fake snowball fight we have in school with the children. They love getting the teachers without getting into trouble. Boy is that a work out trying not to get hit, pick up the snowballs and throw them at the children. 😵 It is very enjoyable. I recover faster because its not hot.

My decade+ long "journey" also started with Lyme in northern Wisconsin and then morphed into everything else like MS, POTS, Dysautonomia, small nerve fiber Nueropathy....Lyme is no joke....the great imbalance-er....

Hi, Lissa! Sorry the heat is getting you down already. It's going to be a long summer, isn't it? I live in the southern US, and we could write a book on humidity! So, I feel your pain. Check out all the cooling products on Amazon. I have a few neck wraps that you store in the freezer. Before walking out the door, I grab 1 from the freezer. Some people recommend keeping a spare in a small cooler, so that you can "swap them out" when the one you are using becomes warm.

LissaH profile image
LissaH in reply to Mollyabigail

Mollyabigail thanks for feeling and understanding our weather lol I do have the neck wrap that I freeze, and a cooler to swap it out. I even wrap ice up in it and that really helps, plus a Milwaukee fan, and the ice vest. sometimes the vest feels to heavy to wear and it wears me out more, because it feels like a weighted blanket lol. But we do what we can do to support our families and friends. thanks for your response. Please stay cool this weekend, its to soon for this kind of whether. I feel like with 90 degree weather now our summers may be mostly in the 100 🔥. yikes lol

Looking back pre diagnosis when my boys were younger & played hockey, I didn’t mind spending all my time at ice rinks-duh! It was cool which meant my body was comfortable!! I still have one who plays but now I start to get too cold & stiffen up so I watch from home (a + change from Covid world)

I'm sorry you don't get to go and enjoy your sons games in person. I'm happy to hear that you can still watch him play. Yes the cold for me feels like every bone in my body is brittle and will snap at anytime. I still take the heat over the winter because that cold weather pain is different and worst, than me just being drained. Being drained isn't no walk in the park but I don't hurt nowhere near what I do in winter. Best of luck to you.

I’ll be going to destin, florida for my daughter’s soccer game this weekend. I remember i went to thiis tournament for her last year at this time and i could barely walk without holding on to someone/something because it was SO hot! I hate that I can’t enjoy the heat like i used to :(

I agree, please be careful and safe. Do whatever you can to stay as cool as you can. Now whenever I have to go to an outside event my boyfriend bought a battery operated fan from Milwaukee. It's the perfect size and it does help.. Good luck to your daughter, I hope they win Hehe..

Thank you! A fan is a great idea!

it has been a lifesaver. Since my boyfriend is an electrician he has the batteries needed for the fan.

I bought a small fan earlier today! Thanks for the idea!

nice I hope it brings you relief when you need it. Its a life saver for me.

Amen 🙏

heart goes out with a lack of energy etc.it works on body mind spirit.find things you do enjoy and can do that bring the sun in but aircondition for those days....or weeks. i live on you tube and nature...i sit out when the sun is at the right place and yes,cooling vest etc do help.best wishes.

we all know where you are coming from for we all ,well not all have the heat problem ..use to live for summer to see how dark i could get ....now it is caring the fan with the spritzer on it and stay in the shade ...or in a moving vehicle ....like at the beach ...hahhaha...we all have different ways to deal with it ....just still enjoy life to the fullest....love and happiness...

you have plenty of company!and remember in the old days,the wealthy women were pastey white because they never worked in the fields or outside in the sun.no wonder they carried hand held fans !watch gone with the wind....tee-hee

LissaH profile image
LissaH in reply to pamgarner

good one and true. 😂😂

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