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Getting past the fear
Dear friends,
I have dealt with MS for 2 years now. I thought that by now I would gotten past some issues.
How does one finally let go of the fear this disease creates? I was very active before all of this began, but now I have this recurring fear that in getting out and doing things throughout the summer months I might get overheated, and become very ill. I have had this happen once, and it was terribly frightening.
I now carry what I call my emergency kit. It is a zippered pouch containing an instant cold pack, a neck scarf that, becomes cool for several hours when wetted, and a lightweight baseball-style cap. Most anyone I would be traveling with knows I have it, and where to find it. The fear, however continues to plague me.
How do I let it go? It has kept me from participating too many times. Any suggestions?
Most sincerely,
Beth
I have dealt with MS for 2 years now. I thought that by now I would gotten past some issues.
How does one finally let go of the fear this disease creates? I was very active before all of this began, but now I have this recurring fear that in getting out and doing things throughout the summer months I might get overheated, and become very ill. I have had this happen once, and it was terribly frightening.
I now carry what I call my emergency kit. It is a zippered pouch containing an instant cold pack, a neck scarf that, becomes cool for several hours when wetted, and a lightweight baseball-style cap. Most anyone I would be traveling with knows I have it, and where to find it. The fear, however continues to plague me.
How do I let it go? It has kept me from participating too many times. Any suggestions?
Most sincerely,
Beth
I applaud Alex and the inspiration she is to us all. I also applaud those who have identified different types of personal limitations and live their lives in a constantly challenged balance between conservation and expenditure of their bodily resources. We are all learning new things daily about living in general and living with diseases that alter our ability to participate as fully as we might desire. May each of us reach the star we hold in sight.
Be kind to yourself.
Fear is real. I not only deal with my MS but my Cancer every day. I do not let fear stop me. I acknowledge it, I make safe guards and I go forward. I started riding horses after my MS diagnosis which is risky but something I really wanted to do. I can't afford a horse or even much for lessons but I put and add for therapeutic riding on Craig's list. I was amazed at the response. Well when I was first diagnosed in 2009, June I went up in a hot air balloon and camped and hiked in a State Park for a week. It was pretty hot so I took lots of rests.
Now with the Cancer I am very weak but I still get out when I can. I have people go with me. I do not push it when I feel weak. I use a walker and cooling vest.
I have my bucket list. Another friend with MS who is having chemo went sky diving last week.
Each one of has different limitations and we have to honor those limitations. I found in my own case fear limits way more than disease does.
You have to look at energy as money in the bank with no credit. When the energy is gone it is gone. Once you get used to your energy and limitations you can adjust. Not everyone with MS can do what I do. I am fortunate because I have had MS since I was two years old and did not know it. No one gave me any allowance for my Neurological problems. I thought I was normal. I pushed myself because I did not know I was limited. I am not saying I should push beyond my limits. Especially now.
Today my limit was getting from the bed to the toilet in my hospital room. It was even sitting up to eat while I was having my transfusion. Even the act of eating is hard.
I am planning on a future of horseback riding and MS activism. I have two all day meetings planned for the MS Society in August so I am resting between chemos.
I am not worried about where my MS will take me or my stage III ovarian Cancer. Now they are talking about removing both my breasts as soon as I am through chemo since I have a 90% chance of breast cancer on top of the other two diseases. They are both chronic illnesses I will manage. I have a sense of humor and a lot of gratitude. I know there are a lot worse off than I am. I am not thrilled at the prospect but I can live with it.
These are the cards I am dealt. I can accept them and play my hand to the best of my ability and that is all that is asked of me. I have had a hard life but I have a very positive attitude about it.
I will keep playing whatever hand I get. The good days and today was a good day are the days I look my fear in the eye and say "I see you, but you do not own me." This is a scary disease but life is scary.
I hate being in. I have to be in now but it is not forever. I have a cooling vest and if I walk I walk either in the morning or go to the Mall when I have enough of an immune system. Now I just am happy to walk to the kitchen and back. I do what I can no more no less. I do not beat myself up over what I can't do it takes too much energy.
Alex
Fear is real. I not only deal with my MS but my Cancer every day. I do not let fear stop me. I acknowledge it, I make safe guards and I go forward. I started riding horses after my MS diagnosis which is risky but something I really wanted to do. I can't afford a horse or even much for lessons but I put and add for therapeutic riding on Craig's list. I was amazed at the response. Well when I was first diagnosed in 2009, June I went up in a hot air balloon and camped and hiked in a State Park for a week. It was pretty hot so I took lots of rests.
Now with the Cancer I am very weak but I still get out when I can. I have people go with me. I do not push it when I feel weak. I use a walker and cooling vest.
I have my bucket list. Another friend with MS who is having chemo went sky diving last week.
Each one of has different limitations and we have to honor those limitations. I found in my own case fear limits way more than disease does.
You have to look at energy as money in the bank with no credit. When the energy is gone it is gone. Once you get used to your energy and limitations you can adjust. Not everyone with MS can do what I do. I am fortunate because I have had MS since I was two years old and did not know it. No one gave me any allowance for my Neurological problems. I thought I was normal. I pushed myself because I did not know I was limited. I am not saying I should push beyond my limits. Especially now.
Today my limit was getting from the bed to the toilet in my hospital room. It was even sitting up to eat while I was having my transfusion. Even the act of eating is hard.
I am planning on a future of horseback riding and MS activism. I have two all day meetings planned for the MS Society in August so I am resting between chemos.
I am not worried about where my MS will take me or my stage III ovarian Cancer. Now they are talking about removing both my breasts as soon as I am through chemo since I have a 90% chance of breast cancer on top of the other two diseases. They are both chronic illnesses I will manage. I have a sense of humor and a lot of gratitude. I know there are a lot worse off than I am. I am not thrilled at the prospect but I can live with it.
These are the cards I am dealt. I can accept them and play my hand to the best of my ability and that is all that is asked of me. I have had a hard life but I have a very positive attitude about it.
I will keep playing whatever hand I get. The good days and today was a good day are the days I look my fear in the eye and say "I see you, but you do not own me." This is a scary disease but life is scary.
I hate being in. I have to be in now but it is not forever. I have a cooling vest and if I walk I walk either in the morning or go to the Mall when I have enough of an immune system. Now I just am happy to walk to the kitchen and back. I do what I can no more no less. I do not beat myself up over what I can't do it takes too much energy.
Alex
I love Mary's idea of pre-cooling. I read an article last night that mentioned the buddy system for hiking. It might help to lessen your fear if you start with a buddy, or take a buddy on especially long outdoor activity sessions. If you know the right person, they could not only provide extra safety, but they might help to motivate you and make everything a bit more fun as well.
I admire all of you so much! I am embarressed to admit that lately the fear of overheating has kept me home much more than I would like to be. I feel like my new normal has become very restrictive. I love the idea of an emergency kit. I hope I get the courage to participate in life a bit more now.
Xxxxx
Deb
Xxxxx
Deb
Beth,
I just went on a road trip to Montana where it was 100+ degrees and I found that traveling with a cooler ful of ice packs, water, and my neck cooler that sounds just like yours. Just having ice gave me a piece of mind since the ice packs are what help my banding pain. I hope you are able to over come your fears.
Cheers,
Belle
I just went on a road trip to Montana where it was 100+ degrees and I found that traveling with a cooler ful of ice packs, water, and my neck cooler that sounds just like yours. Just having ice gave me a piece of mind since the ice packs are what help my banding pain. I hope you are able to over come your fears.
Cheers,
Belle
Sounds like you've done the hardest part by recognizing and facing this fear head-on. I love your emergency kit idea. I have one in the car for winter trips but haven't planned as well for warm weather emergencies. Thanks for sharing Beth!
I’ve noticed the heat is taking a physical toll right now even when I stay indoors. It has just been too hot for too long. It’s scary to realize how much of our personal normal can be zapped in minutes or wicked away in a day, especially compared to how much longer it takes to recover strength and stamina. At the same time, I too recently came to realize that engaging in full heat protection mode was leaving me vulnerable to isolation on the social front.
I like Jane's suggestion to start out slow. It’s good to find out how your body is going to react in small doses of heat before tackling longer or more active periods of exposure. Try to pick your timing to avoid the worst of outside heat of course.
It also might be a good idea to pre-cool your core. Why wait for an overheating incident to occur to find your tolerance limit? A cooling vest put on 20-30 minutes before leaving your cool home is a great way to get a head start against the heat - even before that initial, short exposure trial. Pre-cooling also works to allow in-home exercise sessions any time of year. Active prevention can help put a variety of fears in their place.
I think I’ll concentrate more on this pre-cooling technique myself. I’ve noticed lately that I have to leave a much longer cool down period between a shower and my be-ready-and-out-the-door deadline (it isn't even a hot shower!). Then I usually need a short rest break to recharge my legs and breathing on the walk between the parking lot at work and my office. Fortunately, there's a spot about midway along where the building a/c begins to restore what the abandoned car a/c can’t maintain. Once in the office, I plan fewer exertions out of it than I really should (because I stick to my self-controlled, super-cooled space). It just could be I can function better and require less dramatic heat avoidance if I add a few well timed pre-cooling sessions.
Thanks for getting us thinking about this Beth. All of us with heat intolerance need to think smart and think ahead for warm weather. Sometimes it seems pretty natural. Sometimes it takes real planning. I hope people keep bringing ideas and stories about what works for them.
I think you just might be on your way to enjoying new adventures……
or revisiting a few familiar favorites from your past.
Hope you share some smiles when you get back home.
.
I’ve noticed the heat is taking a physical toll right now even when I stay indoors. It has just been too hot for too long. It’s scary to realize how much of our personal normal can be zapped in minutes or wicked away in a day, especially compared to how much longer it takes to recover strength and stamina. At the same time, I too recently came to realize that engaging in full heat protection mode was leaving me vulnerable to isolation on the social front.
I like Jane's suggestion to start out slow. It’s good to find out how your body is going to react in small doses of heat before tackling longer or more active periods of exposure. Try to pick your timing to avoid the worst of outside heat of course.
It also might be a good idea to pre-cool your core. Why wait for an overheating incident to occur to find your tolerance limit? A cooling vest put on 20-30 minutes before leaving your cool home is a great way to get a head start against the heat - even before that initial, short exposure trial. Pre-cooling also works to allow in-home exercise sessions any time of year. Active prevention can help put a variety of fears in their place.
I think I’ll concentrate more on this pre-cooling technique myself. I’ve noticed lately that I have to leave a much longer cool down period between a shower and my be-ready-and-out-the-door deadline (it isn't even a hot shower!). Then I usually need a short rest break to recharge my legs and breathing on the walk between the parking lot at work and my office. Fortunately, there's a spot about midway along where the building a/c begins to restore what the abandoned car a/c can’t maintain. Once in the office, I plan fewer exertions out of it than I really should (because I stick to my self-controlled, super-cooled space). It just could be I can function better and require less dramatic heat avoidance if I add a few well timed pre-cooling sessions.
Thanks for getting us thinking about this Beth. All of us with heat intolerance need to think smart and think ahead for warm weather. Sometimes it seems pretty natural. Sometimes it takes real planning. I hope people keep bringing ideas and stories about what works for them.
I think you just might be on your way to enjoying new adventures……
or revisiting a few familiar favorites from your past.
Hope you share some smiles when you get back home.
.
Hi Beth,
That incident must of been super frightening to still have a strangle hold on you. No wonder it's taking so long to get over.
I too think you've are already started. You are planning for when you go out, and you have your rescue kit with you. That's all you can do really.
The biggest step you already took girl! Now, take the next one, and go out, don't overdue it, but just do it none-the-less so you can begin to heal and trust your body again :)
Such an important topic - thank you for bring it up.
That incident must of been super frightening to still have a strangle hold on you. No wonder it's taking so long to get over.
I too think you've are already started. You are planning for when you go out, and you have your rescue kit with you. That's all you can do really.
The biggest step you already took girl! Now, take the next one, and go out, don't overdue it, but just do it none-the-less so you can begin to heal and trust your body again :)
Such an important topic - thank you for bring it up.
I recommend purchasing a cooling vest, and just going out to enjoy yourself. Do take appropriate precautions, don't put off your life. I use a vest with pockets for reusable ice packs. I wear a wide brimmed hat sometimes too. If you are worried you'll have trouble walking, make a "plan B"- like a cane, wheelchair, or a scooter.
Tammy
Tammy
I think you've already started, Beth. Creating that emergency pack was a great idea. Maybe your next step is to start slowly, planning increasingly longer exercise sessions. Pay special attention to your body to see how it is affecting you to find your new limits.
I totally understand the fear. I'm 36 and newly diagnosed, and I feel it as well. A couple weeks ago I was volunteering in a skilled nursing center and met a wonderful woman in a wheelchair who had no use of her arms or legs. When I found out it was due to MS, I was pretty sad. But I had to remind myself that not all of us will end up in a wheelchair. Even better, the woman I met was a funny, charming, sweet person who I could have spent hours talking to. The wheelchair didn't make her any less awesome than she would have been out of the wheelchair.
You're the one who posted the sensitive question a few days ago, right? It seems like you have a lot of courage. Keep it up.
- Jane
I totally understand the fear. I'm 36 and newly diagnosed, and I feel it as well. A couple weeks ago I was volunteering in a skilled nursing center and met a wonderful woman in a wheelchair who had no use of her arms or legs. When I found out it was due to MS, I was pretty sad. But I had to remind myself that not all of us will end up in a wheelchair. Even better, the woman I met was a funny, charming, sweet person who I could have spent hours talking to. The wheelchair didn't make her any less awesome than she would have been out of the wheelchair.
You're the one who posted the sensitive question a few days ago, right? It seems like you have a lot of courage. Keep it up.
- Jane
So glad u posted this and so sorry you feel this way I feel the same way. I Was dx last yr in May. I'm scared to go out in this heat. It was 107 today and I've been like a hermit inside my house in the air conditioning after work. I'm beside myself. It's hard.
I hope it gets better for u! Thanks for sharing!
Prayers, Diggie
I hope it gets better for u! Thanks for sharing!
Prayers, Diggie
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