For all those East Coasters with fibromyalgia and chronic fatigue syndrome, I hope you and your family are in a safe place as Hurricane Sandy moves in.
Watching the coverage has me thinking about how difficult it would be to evacuate quickly when you have health problems. If you're in a potential evacuation area now, it would be a good idea to get some things together - medications, clothing, toiletries, and anything else you'd need to get through a couple of days away from home. Get your pet carriers stocked with food. Do everything you can now, before the situation and your body conspire to put you in danger.
I know for me, evacuating would be tough. Ideally, I'd need to take my CPAP (for sleep apnea), my TENS unit, all my meds and supplements, an extra asthma inhaler and my good pillow. Getting two kids packed up, plus the dog and the cat, would be difficult and incredibly stressful.
I'm thinking, while this is still on my mind, I should make a list of evacuation necessities and store it somewhere safe that I'll be sure to remember it. That way, if my brain shorts out during a stressful time, I'd still be able to get done what I needed to.
Meanwhile, I'm using email and social media to monitor some good friends on the East Coast, not to mention many of my About.com co-workers in New York.
And for those who aren't directly impacted by the storm, my advice is to stay away from news coverage. It can be extremely stressful to sit and watch disaster unfold, and all it's going to do is put you into a flare. At most, check in now and then online, where you can read little bits of information rather than being immersed in TV images of destruction and devastation. It's not that we shouldn't care, it's that too much exposure generally makes us sicker, and that doesn't help anyone.
Take care of yourself, and for those in the path of the storm, know that we all feel for you and our thoughts are with you.
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ADRIENNE: could you write something about insterstitial cystitis? Just dealing with it, so painful!
Fibro really is a lousy disease.
I live in Long Island, NY. We had no damage to our home as many others did in our area, but we went three days with no electricity and no heat. Finally, at about 5:30 pm ET, both came back on and we could try to get back to normal living again.
But we will be much better prepared in the future for any natural disasters. Normally, we are lucky in this regard, so a hurricane of all things was such a freak disaster. But you can’t fool with Mother Nature!
It was hell without heat for those three days. You should have seen me all bundled up in layers and with so many covers on at night.
Thank God we’re all safe here. But please keep all of us here in the Northeast in your prayers. Please watch the telethon on TV tonight and give to the American Red Cross if you can. Thank you and God bless all of you who did help out.
I live in a small mobile home in the Phoenix area and am practically homebound with CFS. I’m always worried in the summer about electrical outages, for I would die quickly in the heat in this trailer. Also, the winds of our monsoon season (summers) terrify me. I have made a list for evacuation and hung it inside my pantry door, but I really don’t think I’d have the energy to put everything together. I have no friends nearby, and the neighbors in my trailer park all go back north for the summer. What to do?
To alpha
Several years ago I ran into a site that encouraged people to make a ‘grab and go’ binder. With my illness, it took several weeks to make it, but it was a good thing. I photocopied every card in my purse and my husband’s wallet(back and front), made copies of my husbands discharge papers from the military, copied our insurance policies and our dogs papers (with pictures of some of them) made lists of medications, lists of emergency contact info, made copies of car registrations and pink slips–you get the idea. The good thing was that as I copied these papers, the originals were placed in a fireproof safe.
The binder is currently on a bookshelf a few feet from the front door.
We don’t live in a flood area or a place that gets major storms, so I haven’t done much else. I have read that some people have a plastic tub with a change of clothes, a few days of meds, food like granola bars and beef jerky, a few water bottles, plus a few flashlights and extra batteries.
Some families make a box for each family member.
Maybe you could make a box like that to keep in your home in case you have to leave in a hurry.
I have extra food stored at my house and about 15 gallons of water. All of my pills are kept in a plastic box with a handle–including supplements.
We could survive most any disaster in our house, but would need to grab things in a hurry if threatened by fire.
Because we live on social security, we don’t have a lot of money, but I buy carefully and on sale and usually can buy a few things ahead every month. Not only is it a good thing to do for an emergency, it makes for a more varied diet and better eating over the long run.
I went through Katrina in 2005. It was the first major storm I had gone through since developing fibro. Strangely enough I found out then and have verified with a couple of tropical storms since then that although the leed up to the storm is very painful the weather afterward actually is benificial to me since most of the storms pull everything in the area to them and then move it all out with them. Of course changes in the weather is one of my big problems also I have come to realize even bigger than stress so given a period of a few weeks with no weather changes afterward it can be great. Of course if the storm hangs around for a while all bets are off. I also wonder if a build up of adrenilin where you do have to be somewhat physically active afterwards can play a part in it. In todays life so much of our fight or flight response reastions do not actually lead to anything physical and rather than exertion afterward we are left to just try to calm ourself down again. With something like this there is shopping for supplies, packing nessicities, moving items away from places that may be damaged and so on and so forth. After Katrina we had some piped water but could not drink it. There was no electricity. I washed a few clothes a couple of times by hand. I had to boil water to drink and to rinse dishes in. Any time I had to go somewhere if it were close enough to possibly walk there you did not take a vehicle because you did not know when you would be able to gas it up again. The electricity came back on at about three weeks and they lifted the boil water order soon after. If it had gone on much longer I would have started to wear down but it lasted just long enough to make me feel positive about my ability to survive adversity again. I read a little about what is going on in the northeast from time to time. I know I cannot afford to dwell on it because there is nothing I can physically do about it but donate money.
Alpha I you spoke to my heart and I am concerned about you. I am surrounded by family so I cannot do more than tell you what I think I might do in your situation. I would pack an overnight bag and keep it with my list. In it would go a change of comfortable clothes like maybe sweats, an unopen bottle, tube of all over the counter medications I might need, copies of perscriptions (Just photocopies I could give another doctor if I ended up in a shelter somewhere and my doctor was unavalible. Probably change them out ever six months to a year or in the case of a new perscription so they are not too terribly old.), insurance papers or copies and information and a copy of your birth certificate. Then your list in the pantry will just need to be the items you need to add things you cannot regularly keep in the bag such as your actual medications and your pillow. Every few month to a year you might want to pull out the clothes and try them on to see if they are still comfortable and wash them so the don’t get too musty. Also swap out over the counter meds every year or so with new ones and use them up. Maybe take time to do it when you have to set clocks back or forward so it will help you remember. If you have not done so contact you local disaster preparedness officials and see if there is a list for disabled/special needs people in case of a disaster and get on it. That way there will be people who know you may need some special assistance if something happens. I hesitate to add, but I am going to anyway please try to find an outside group you can be part of. At least one. It could be medically related, a religious group or something maybe at the library. I know it can be very difficult at times because people tend to want you to make every meeting and take part in activites and I would never want to see you overextend youself but at the same time there are instances when we need somewhere to turn for help and encouragement. Please try.
For Interstitial cystitis, my go to remedy is 1/2 tsp baking soda in water. And of course watch my diet. You can go to ICN website and get their dietary list.
I live in New Jersey and have been severely impacted by Superstorm Sandy. I have been through other storms and had damage, but this was life threatening. We were without power 11 days and it was terrible without heat. Being without lights was just annoying, but no heat when the temp was 22 degrees was rough on anyone ill. I pushed myself with CFS to such a degree that I finally almost collapsed. When the adrenaline surge drops off, it’s even worse. I felt vulnerable and helpless at times. If it weren’t for my family, I’m not sure where I’d be. I prepared or it all before, but never realized how severe and prolonged it would be. I had to toss most of my food out because of power. So, I wish to send my condolence and prayers to all in the areas hard hit. When I recover, I am going to try and do something to help others who now are homeless and overwhelmed. If you are out of the area, please help someway if able. I’ve been through 911 and other storms, but this was a doozy. It is such a high volume area and that creates a worse scene plus FEMA is not helping at all. They say they don’t give out trailers anymore for the homeless. People are burning their furniture for warmth while trying to live in severely damaged homes. It’s such a mess! Those people with CFS and Fibromyalgia are suffering so much just trying to survive. Well, thanks for allowing me to vent, since I love this web site. It is so helpful and gives practical advice.
You’re one tough, smart, compassionate dame, dear Adrienne. Thanks for all your helpful research.
peace,
mickey morgan