posted
Hi. This is my first post here. This is the best forum I have found. Thanks for all the great posts and information! I have been reading your posts and finding a lot of helpful information. Really, I am greatful this source is available and that I came across it.
I have been noticably ill for 12ish years.. I don't really remember anymore exactly how long it's been. Was diagnosed with cfs/fibro for years but finally found out not too long ago that it is actually lyme. My symptoms are quite severe. I am unable to work. You all know the drill, I won't bore ya with more details..
I have lost friends along the way due to people not understanding and it has been painful but I just accepted it. I have a friend who I don't want to lose but it seems it is/has happened. I would like to send her some brief(so she doesnt lose interest) information to show her what it is like to deal wtih lyme, the severity and how it affects our lives.
Before I say anything else, I have to say that I have some amazing supportive people in my life.. I do not wnat to seem ingrateful for the blessings that I have in these people. But, I can't help wondering who's going to go next. My family arn't there for me because "they can't deal with me not being able to do what I use to". I was very physically active and a college student before all of this. They want to see me and talk to me, but they don't want to talk about the lyme. They want to participate in my life as a healthy me. They are for all intense & purposes in denial, and they know it. They want me well but contribute nothing towards that goal in any supportive manner to my well being in emotional support, treatment research or anything. Again, I don't wnat to sound pathetic & ingrateful, I have to mention that I am blessed by God and Thankful to have great doctors and am being treated aggressively.
The friend I mentioned in the beginning of this post has not understood why I just couldn't do things she thought I should be able to do. Things she can do, though even she has trouble doing it all. You know, normal everyday things, tasks. By the time I take care of my personal needs, get to the doctor to get my treatments and do a few other things.. I have nothing left, many things are left undone and it's usually the end of the day and my brain hurts from considering thinking about the things that are still on my to do list that I hardly even made a dent in to begin with.
I spend 3-4 days a week not even leaving my house because I can't handle the nausia from driving or the stimulation of getting out anymore not to mention the fact that I probably shouldn't be driving a lot to begin with for cns issues. Though I'm busy doing treatments, research and stuff the days I'm home. The days normally disappear without getting very much needed rest. Most of the time I feel overwhelmed and forget so many things that need to be done that many things go undone and hang over my head worrying me. I'm not sure how I stay so busy, and don't have much to show for it. And then knowing that someone I love is disappearing from my life.. It's just really hard.
Anyway. I kind of wanted to explain where I'm coming from so that you might have a better idea of what I'm looking for.. As I know most of you can unfortunately relate... I hope someone has a resource available that would help my friend and maybe even family understand better what this disease does to ones life.
Sorry if this is jumbled.. It's only 10:30 and I'm already having trouble putting my thoughts together... This is a lot longer than I intended it to be.
Thanks for taking the time to read.. Looking forward to getting to know you, and sharing information in our victories and struggles.
you can do a "search" here for topics you think would relate to what you want to express to your friend.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
I used to have CFS & FMS and now I have nothing but good days and good life, for years and years. I have NO pain and NO symptoms. I hope you do as well as I have!!!!!!!!!!!!!!!!
That was a great intro letter*)!*!! Glad you are here, Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Hi I'm just new to but my heart went out to you in what you mentioned about your family and friends. I'm there with you. I Havent started any real treatment yet but a couple low doses of doxy. Mine all started in June, and now its October and most of my family stopped calling to find out how Im feeling they call also but if I'm really down that day the phone call wont last long. I have two really good friends and they are great if I call and say I need help they help. They have both cooked supper for me a few times in the past months. I aslo have a list of things to do in a day and each day I dont feel well the list gets shorter. But then I have a good day and I work slow and steady it may take me all day and into the night but I do it. I think the key at least for me is I work on something and if I need a break I take it, sit down relax then when Im ok I get back up and do a little more. SSSSLLLLOOOOWWW and steady.
Dont feel bad about what you wrote I feel the same way! God Bless Beth
Posts: 33 | From Clearfield, Pa | Registered: Oct 2007
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I've been disabled since 1999. I can get to my Dr's appts and try to get groceries in the house every week for my husband and I and that's about it. My world is extremely small. When you can't participate in life family and friends seem to go by the wayside. Mine did anyway. Chronic illness is very isolating. Things I have to consider in a day that may rob what little energy I have or may make me feel worse were never thoughts when I had better health.
A good site to read that may give you some ideas to explain your limitations to your friend/family is butyoudontlooksick.com. Liz
Posts: 383 | From Ar | Registered: May 2007
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posted
Hi Minnie -- Welcome! I've been through similar experiences you're describing, and it hurts.
Couple things: am wondering if there's a Lyme support group in your area. You could find out by checking the Support Groups section to the left.
2nd, am wondering if it might be helpful to get some publications to show folks. There are brochures available through the national lyme association(www.lymediseaseassociation.org) and through the doctor organization, ILADS(www.ILADS.org) Some states' Lyme groups have materials too. And there is the national magazine quarterly, Lyme Times, that will have some helpful back issues. I suggest you get in touch with them and ask which issues would help your family and friends understand better.(www.lymetimes.org)
There are also some people on Lymenet who have written letters to their family and to families about what is going on. I'm hoping people will come on here and tell you who they are and how to access the letters here. lymedad is one of them.
And I've found that some people really don't want to know. In our healing process, I think sometimes it's better to learn to let them go for now and spend time with the people who will be there for us.
This is a good place to be! -- Robin
Posts: 13117 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
welcome minnie to the board; glad you found us!!
i'll send you my private message with 79 pages of newbie links, advise, symptoms, tests, disability, much more including treepatrol's archive of over 1000 links of good lyme info!!!
in what i'm sending you, are these wonderful links, the ACTUAL STORIES MENTIONED ABOVE FROM LYMEDAD AND DAR'S TOY STORY, are there in full length not a link; plus 2-3 others along those lines! so you will have this shortly to refer to, or copy/paste and email to others!
i'll send this now before i forget!
private messages are found on left hand side below HELLO by flashing light and in my profile!
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posted
Thanks all of you so much for the warm welcome, encouragment and the great information. I am afraid I don't remember your names right now but I will learn them as I go back over this post several times to get the information you all have put in here for me.
Thanks bunches! Posts: 59 | From U.S. | Registered: Oct 2007
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posted
Been through much of the same too. Due to my illness, my family and I have received threats of violence from some neighbors, support from others. Discrimination against the disabled is very much alive and well.
Chronic illness is a difficult situation, but if there's a silver lining, it's that you get to see people's true colors. Those that reject you were probably not worth knowing from the start. Those that support you can probably be counted on through thick and thin in the future.
Then there are people in that middle ground. In my interpretation, such people are probably supportive but are uncomfortable for one reason or another. Maybe their capacity to talk about illness is simply not compatible with yours. You might want to talk lots about it, while they don't. The reverse is also possible.
In general, some of the best conversations I've had are those which look forward to what we'll be doing when we get well. In this way, you can express your limitations to another person, but put a positive outlook on it. Change "I'm too sick to go to the annual reunion" to "I can't wait til I'll be able to get out and go again."
Posts: 727 | From USA | Registered: Mar 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Minnie,
Welcome to a group of very special people who either have or are dealing
With many of the same issues as you.
This is my favorite place to be with my friends.
No one knows your pain, frustration and journey better than the people here.
In order to really understand Lyme you first have to want to.
Then it is so incredibly encompassing that it sometimes still blows me away.
My family doesn't even ask me how I am doing anymore (except my Mom).
I have been in treatment for just over one year now and am currently treating two small
Children also. I have a husband who also has Lyme, but is not treating at this time.
Hang in there. Know that everyone here is there for you.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Minnie,
sorry to hear about all this. I can only read about two lines to a paragraph, but the driving challenge caught my attn. so that's all I'll speak to, but good luck with all of this.
You are wise to realize the driving concerns w/ CNS issues.
A few hints that might help:
Learn the BACK ROADS. They are quieter than the freeway - although more stops, so sometimes it's a toss-up.
Learn where the fire stations are and avoid if you are sensitive to sudden noises.
If you have your VENT on for fresh air, before you approach any vehicle in front of you, close your vent to the recirculate mode. It's usually a little button with a circle/arrow.
If you are one of the lucky ones not clobblered by exhaust, it is still a good thing to limit the exhaust exposure.
Even closing the vent off, try to stop with EXTRA SPACE between the car in front of you at stops. that way, you are getting less exhaust - and even with a closed vent, exhaust may get in.
I also find the extra space is less dizzying and gives you a little feeling of personal space. As I don't drive this is one thing I just can't get across to most, but some get it.
For many, diesel really affects them. What might help is to get some lemon essential oil and put a drop or two on a handerchief or tissue. Don't let the oil directly touch your skin, but just inhale a whiff or two.
Making sure your interior stimuli is just right, instruct anyone who rides with you exactly what you need in the way of conversation or silence. Know exactly what kind of music may help. Mozart is especially helpful for creating the kind of brain waves we need for calm attention.
Also, if you are sensitive to perfumes or scents, be sure to ask whoever comes into your care not to used scented products (and that's another entire thread right there). This will help with brain clarity.
Pull over anytime you feel the need. Do try to push it. Take a walk - or rest - in a park - get the know the ones along your routes.
I don't know where you live, but even in winter, the sun on our dashboards can off-gas fumes. You might put an old towel over your dash if you park in the sun . . . and frequently wash your inside windows with a natural cleaner.
I find the Seventh Generation "Natural Glass & Surface Cleaner" (free & clear of perfumes and dyes) to be my favorite for everything. Others with citrus products may work, but some are perfumed up, so read the label.
Also, having good protein, fats and carbs balance before and along the way and water is important.
Some find the "READY RESCUE" homepathic remedy to really help them when they are out and overstimulation or adrenal fatigue pops up.
If lights in nighttime are a bother, I had my glasses tinted slightly blue as a -- word choice here - uh, from the person at the eyeglass place. You might ask your eye doc about that.
And, always, remember to breathe and enjoy your surroundings as much as you can.
Hope you feel good enough for some nice autumn drives.
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Wow, you have all encouraged me and given me so many ideas that I will definately put to use.
Thanks so much...
There were so many things I wanted to reply to but I just can't remember most of them now that I'm actually replying.
Bettyg: I received the information you sent. I have not been able to look at the newbie stuff "yet", but I did see your tips for posting here. I appreciate it.
Keebler: Great car tips. Wow, stuff I have never thought of before. Like not pulling up behind others cars due to fumes.
Now I don't usually like getting too close to other cars in general but the car behind me gets impatient a lot for me to fill up that 1-2 car space i like to leave..
dguy: death threats? Thats aweful.. I'm sorry.
I will probably check your chatroom out sometime.. IF you have a voice over ip I may do that too.
Posts: 59 | From U.S. | Registered: Oct 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi MM,
Love your name!
I had great family support during my illness and I can only share with you my experience about that.
During the worst of my illness, I became incredibly disabled. I couldn't be left alone because I couldn't stand long, I could get trapped behind doors, I was unable to drive or prepare food.
During those very frightening days, I was so grateful for my husband, mother and daughter. My illness consumed me and I spent endless hours at this computer researching and learning everything I could about all that was wrong with me.
Obviously, the only thing on my mind was my illness and since I had no life outside of being sick, it was all I could talk about.
There are two things I believe kept my family close by my side.
1-My inherent nature is very independent. Even during the worst of my illness, I attempted things on my own before asking for help. My family would jump to my aid (they were as frightened as me) but I explained to them how important it was to let me try first. Every tiny, tiny accomplishment was such a victory. Then, when I could not accomplish a task, I did not give in to anguish. I humbly asked for and graciously accepted their help.
2-Not so inherent....actually, this took a great deal of effort on my part. I worked at talking about things other than my illness. I did talk plenty about my illness, but whenever I saw that distant (I'm going to fall over dead if she doesn't shut up) look come into their eyes, I strove to find a topic they could be interested in. This kept the family from running away and it was helpful to me to divert my mind occassionally.
No one in my family ever got fed up or gave up or dissed me. That is partly because I have a great family, but it is also partly because I tried to be great family.
It took a year for my health to recover to the extent I am fully self sufficient and again enjoying everything in life. Lyme is a seldom mentioned topic in my family now. I can't say I have forgotten it, but it is seldom in the forefront of my thoughts.
I can only give you the benefit of my experience and hope there is something in my experience that will be helpful to you.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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