I'm trying to make a list of things that could be helpful to a Lyme Patient. Or-how to support your Lyme Patient. I'm thinking about adding a section to my book directed towards family members.
So I'm looking for things like
-Asking how I am feeling -Doing the dishes -Laundry
Things like that. I also want to show the list to my family as I don't have much myself. Thanks
Posted by littlebit27 (Member # 24477) on :
Yeah definitely no money needed for that.
I tell my husband I just wish you'd support me. And he says how am I supposed to do that? So I saw this paphlet about fibromyalgia at the doctor's office. It says about how even simple tasks can be painful and yada yada. I said I realize I don't have fibro but some of the symptoms are the same and the things they say about pain is true. Sometimes walking the 20 feet to the kitchen is a difficult thing to do.
So I just wanted opinions for other Lymies to make him a list.
I will never have my mom's support. RN who use to work at the NIH but doesn't believe the studies on Lyme, ha!
Posted by Wonko (Member # 18318) on :
Offering to run simple errands could be a big help. If the well person is out running their own errands, why not call the sick person and ask if they need anything picked up, too? I know it can be stressful if you run out of a supp, or fresh produce, or other small comforts like bath salts.
Sometimes such little creature comforts can mean a lot, so it's very thoughtful to make sure the sick person has what they need.
And as noted above, just doing things that obviously need to be done, without being prompted or wanting praise in return, is a great kindness.
We all hate asking for help with simple things, so I think that it is truly compassionate to help out without needing to be asked or excessively thanked.
Posted by sapphire101 (Member # 6638) on :
This is all good but what about a section on caregivers. They need support also.
I'm in a really bad situation right now and I feel so bad for my family. I had 6 really bad seizures yesterday and to just see what they go through is heartbreaking. It took hubby, son, and daughter all to take care of me yesterday. That is the worst thing for me is seeing them have to go through this with me.
They need breaks from caregiving whenever possible. If they can't leave just go outside for a little while. Pick a night and go out with friends if possible.
Ask for help from friends or family when it gets to be too much.
I'm sure others can come up with other ideas as I'm kinda brain dead right now.
It just seems we focus on "us" most of the time. I try to focus more on my family and what they are going through. I make sure I always thank them for whatever they do for me as I appreciate them being here for me so much.
I wish you all had a supportive family like I do. I know some of you don't and I really feel for you. I think that goes a long way toward healing.
Sapphire
Posted by LightAtTheEnd (Member # 24065) on :
I have a really supportive family, but I live alone and work full time.
I am embarrassed to ask them for daily practical help, but what I could really use is anything that saves me a car trip to do an errand, which often takes all or more than the energy I have left at the end of a work day.
I would love it if somebody would make some food for me and bring it over. Unfortunately, to be helpful, they would have to find out about and respect my dietary restrictions, so they can't just make anything.
If I had somebody to clean my house, do my laundry and wash dishes, and run to the store for me for food and meds/supps, that would be really great. Then I could get more rest when I'm not working.
I think people don't understand how from one day to the next a person can have energy and then not have any. On top of that, even when we have some energy, we need to save it and only use up about half of it, and have some rest and some down time to do nothing.
I don't really get support in those ways, but my relatives do give me some money to pay for meds and doctor visits, and most important of all, they believe I am sick, and that I am doing the best I can to get well.
It helps so much to have someone to talk to--the disease is so inherently isolating. It is really great to know that even if my relatives don't really understand what it's like for me to live with Lyme, they are behind me all the way.
If I had to pick one thing someone could do for me that would help the most, I would say, listen. Don't give me advice or criticize my choices. Just listen to me tell you how I'm feeling, and accept me and give me a hug. Sometimes all I need is some company and not to feel alone.
Then if you want to help further, ask "What do you need?" or "How can I help?"
Oh yeah, and try not to cause the sick person any extra stress--that will make them sicker.
My relatives have previously made the mistake of trying to tell me how they wanted to help, without knowing if that was what I wanted or needed, and then got resentful when I explained to them why I couldn't take their suggestions.
For instance, when I was first looking for an LLMD, they would tell me I ought to contact all the infectious disease specialists in the area and ask if any of them treat Lyme disease. I already knew from months of research and other people's experience that I was not going to find a doctor to help me get well that way.
Accept that the person you want to help and care for knows their own experience better than anyone, and has probably been studying all about Lyme for a long time, and knows more about it than you. Ask the sick person to explain things to you, rather than presuming you know already. Read and research about it yourself, so they don't have to teach you everything.
Don't pressure the sick person to engage in greater activity than they feel up to. Don't say, "If you just got out more" or "You need some exercise" or "I bet you could do thus-and-so if you put your mind to it," and don't lay on the guilt trip if they can't make food and attend the family potluck.
If you live with somebody who has fatigue and needs daytime naps and early bedtimes, for goodness' sake, be quiet so they can sleep. If they were an infant or a cancer patient, you would turn down the TV and talk more quietly. Refusing to change anything about your usual routine lets the person know that you think their illness is unimportant or nonexistent.
I don't have neuro problems now, but for those who do, I'm sure they could use practical help with organizing their meds and remembering to take them at the right times. I think I am on 15 different things right now, and they all have to be taken together with or apart from other things, and with or without certain food. I can barely keep it straight myself. If I were confused or having memory issues, I don't think I could manage it.
A good show of support is to offer to drive someone out of state to their LLMD appointment, and meet their doctor with them.
Doing whatever you can to make somebody laugh is always helpful.
If a person is isolated at home, then make an effort to contact them and/or visit in whatever way they prefer and feel up to. We all feel forgotten sometimes.
If you live with someone or care about them a lot and are in frequent contact, see if they want you to help them keep track of whether they are doing what they need to do to take care of themselves, and nag them to do it if they don't. Lyme treatment is a complicated job.
I have a friend who offered to do this for me, and it's been wonderful. Just be aware that you can't make such an offer lightly--you have to follow through and be responsible about it, and stick around for the person. This is a good kind of help for somebody who always takes care of everyone else before themselves.
Oh yeah--a really supportive thing my family did for me was to agree to watch the DVD "Under Our Skin" with me, and one relative read "Cure Unknown" too. If your sick person asks you to do this, agree, and if not, propose it yourself.
Posted by Keebler (Member # 12673) on :
- I have one request and suggestion that may help lyme patients get a little more respect. When you write your book, I think it would hold more respect to be sure not to use the nickname common here, "Lymies" as - to those who don't know the severity - it can sound like a club comprised of teenagers or college kids sharing a dorm.
Like "Yuppie Flu" for CFS, nicknames can do a lot of damage in terms of others understanding the realities.
Those with lyme do not receive the same respect as others with difficult infections. I do hope that changes. -
Posted by AlanaSuzanne (Member # 25882) on :
Keebler I totally agree. The term "lymies" makes my skin crawl.
In my opinion that word implies that one belongs to some kind of innocuous club, not someone who is battling difficult and chronic infections.
I would prefer that people who are fighting TBD refer to themselves as just that. So rather than saying "I'm a lymie" one should say "I am fighting tick-borne disease" or "I have Lyme Disease" or something along those lines.
Posted by Andie333 (Member # 7370) on :
I'd suggest being patient. When I was at my worst, I struggled to find words, to find my car, to even walk down the street.
I know I was redundant and physically as well as conversationally clumsy. I was literally shaking, and most of the time, I was pretty terrified.
I wasn't the person my friends had known, and being with me then was taxing and required a LOT of care and especially patience.
I'm no longer that acute, but I do have to stop myself sometimes from giving the very long answer when someone politely asks me how I am.
Posted by littlebit27 (Member # 24477) on :
Keebler-I'm not using that term. I'm using Lyme Patients mainly. Or like the previous poster said, people fighing Lyme Disease. I only use it here or on facebook. The book will be more forum than that
Patience is so important.
I realize caregivers are important-I do. And there is going to be a section on patients families' stories-if I get any in. I know it's hard for the caregivers I do. But I guess I still think it's harder for the patient. I mean how hard is it for someone who doesn't have Lyme, and doesn't have extreme pain while walking, to go the store? I don't know. The book will mainly focus on patients-and that's because I want people to see what we go through.
I want people to understand that this disease it not the disease that their mainstrem doctor tells them it is. I want people who are living with some condition with no relief to say, oh wait a min-what if this is Lyme. I want people to see how hard it is to walk to the end of the driveway to check the mail somedays.
I will give caregivers their praise in the book.
Lightattheend-great post-thank you!
Posted by Joyful (Member # 25620) on :
I think the biggest thing my family has done to support me is to believe me %100 about my illness. Most of them live so far that they can't do much in a practical day to day way.
My husband is super supportive. He's very good about taking over with the kids and letting me rest without making me feel bad about it. He cleans, he cooks (ok, he makes mac and cheese) and he even takes the kids to burger king to give me some quite time in the house when it's needed.
We're a team in every way. He gives me my shots, hand feeds me my meds when I can't remember on my own and just does an awesome job of taking care of me Posted by lou (Member # 81) on :
I think you can't really expect very much from other people. They have their own lives and problems. And sometimes you get "help" that isn't helpful, and have to pretend to be grateful. Like suggesting quack remedies and doctors that don't have a clue.
If they just show that they care, that might be enough to expect.
Posted by carly (Member # 14810) on :
I hate the term "lymie". Good feedback here.
Posted by LightAtTheEnd (Member # 24065) on :
Personally I like to use the nickname "Lymie buggers" for Borrelia burgdorferi. When I tell them how they're going to DIE. Posted by littlebit27 (Member # 24477) on :
I would love for my mother to believe in my illness. But alas she is an RN, but worked at the NIH-and thinks there studies are crap. She keeps telling me to find another doctor because my PCP is worthless. I keep telling her it WON'T MATTER. But again she doesn't listen.
Lou-yes other people may have their own lives and problems but I don't think asking support (even moral/emotional support) is too much to ask from your family (parent, spouse).
It's like I read the other day in a story someone sent me. They don't "get" it until they GET it. So true...but I hope they never have to experience this...I really do.
Posted by kam (Member # 3410) on :
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