Help – – I don't have a life I merely exist

Support
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I have five auto immune disease including lupus and Sjogren’s syndrome. I have been diagnosed with Crohn’s disease, dry eye macular degeneration in both of eyes and arthritis which I have in one finger, my neck, both knees, both feet, and my lower back. I moved to a 55+ community and last August made it one year since I’ve been living here. I joined three clubs and there are a lot of activities, however,i’ve only attended One due to being too sick to attend others and the everlasting exhaustion, which never goes away it just varies in degrees. Yesterday was my birthday and I had signed up to go on a trip to New York to see the holiday show at radio city music Hall and dinner afterwords.this trip fell on my birthday, yesterday, and it was going to be my birthday gift to myself. Unfortunately, I was too sick to go, forfeiting $130 and having the ladies that head the singles group annoyed with me. All my friends have moved out of state, I am single, I have one sister but she lives too far away. I have an appointment with a different rheumatologist, because I don’t like the one that I have which I only have seen twice. I have an appointment with the new rheumatologist on February 26, 2015. This is the earliest appointment I could get with him. I am currently not on any medication for the lupus or the Sjogren’s syndrome. I cannot take the medication that is normally prescribed for lupus and Sjögren’s syndrome because my ophthalmologist said that I could not take this medication because of my dry eye macular degeneration.

How do I get a life and how do I make friends by going to activities at my community when it seems I am always sick or too exhausted to go? I am tired of merely existing. I have no one to help me. I and so lonely and depressed. If I only had one autoimmune disease that would be hard enough but I have five of them to live with. If anyone can offer some suggestions/help for me to live a life instead of just existing, I would very much appreciate it.

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Treatment for depression should help you Many of us suffer from the fatigue Instead of foregoing all activities you should make an effort to go to the shorter ones Going out for just a couple of hours is something you could manage and it will help lift your spirits a bit

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Happy belated birthday. I'm sorry your plans fell through. Are you on medication for depression? I am, and it helps me focus. I'm all alone and I have one sister too, but she and the rest of my family live far away. I am alone all the time. I tried to join a singles group but I was always too sick to go to the activities. I have Lupus and kidney disease along with other diagnosis, and my Nephrologist said he has tried everything he know to get the protein out of my urine, so he is sending me to another Nephrologist in Atlanta at Emory Clinic. I feel like he has given up on me. But I haven't given up. I am my best advocate. You call that Rheumatologist office to keep checking for cancelations or call another Rheumatologist even if you have to go to another city for an appointment. I'm all I got. I'm 53, never married, no children, family out of town living their own lives. Even though we are all alone we have a place to come to meet and talk to good people such as the people on this site. I'm concern about you, so keep us posted.

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Thank you poobie and lupusRRJ for your posts. Yes. I am anti-depressants and Xanax but they’re just taking the edge off of things. I don’t want a stronger dosage or more medications as I already have a lot of medications for my various illnesses. I know that I have to go to an activity and meet people. I know that the socialization will help with the depression but it’s so hard to do when you’re exhausted. I am going to try my hardest to go to one activity a month.

Thank you lupusRRJ for your belated birthday wishes. I am sorry to hear about it all struggle with your illnesses and doctors. I pray that you will finally get the help that you need.in fact I pray for all of the people on this forum. I am on a wait list to see this particular rheumatologist and he is an hours drive away from me. I obtained a reference for him through my Crohn’s doctor which I completely trust. I am on a waiting list and I’m hoping that there will be a cancellation and I will get an earlier appointment.

I will keep posting as I know you know how it feels to have lupus. My friends and my sister they can’t really understand how I can be sick all the time and how at times I have deep debilating exhaustion.

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I'm sorry you're going through this. I think we've all atleast been in a similar position at some point. I agree with going to the ones you can and staying for just a short time. Don't beat yourself up when you miss something but don't give up going either. You might find it best to be upfront with people about you autoimmune conditions so they know you want to stay in touch and just aren't missing things to miss. There's light at the end of the tunnel. Your new rheumatologist may have some insight and better treatment option to offer. Happy Birthday. You made it this far through your many challenges and look how far you've come.

Things can get better!

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Thank you lilac83,

I have told a few people in my community about my autoimmune diseases, and they did not know how to react. Thank you for your feedback and the birthday wishes. I am going to do my best and try to go to some of the activities. I’m glad that I found this website, I already feel much better talking to people who understand what I am going through and giving me advice.

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If you could choose one meeting and try to go to that one. Take some of the pressure off with your expectations! I go to my quilting group, every 2 weeks, but I had to skip the last few because I was too sick. I’m on a medication that makes me sleep too much, waiting for that to wear off! Anyway, when I go, they are all really happy to see me, which is really great for my self esteem. I also go to lunch with a couple of friends, and rest the next few days. Sounds like you haven’t made any friends yet to do that with. Is there anything like a place people sit around in the afternoon, that isn’t as formal as a meeting. Something you could show up to for a short time with no structured time to come and go? It would be nice if someone could come and visit with you once a week, or come read to you. Ask if they have someone who does this kind of thing. I am sad for your loneliness. It takes forever to grt a new patient appointment! It is worth it to find a doctor who you like and trust to take care of you. Can you have a pet? I would be 10 times more lonely without my cats. The require food, water and a cleaned box in the bathroom, which I can handle.

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Happy birthday, Cleo.
I think we all some point feel this.
Like you, I have many overlapping diseases sle, Sjogren’s, fybro, Nephritis, etc.
One of the things I first heard when I was diagnosed 2 years ago after a stroke.
Because of my ANA negativity, Benlysta, the only truly new med for us not an option. As with Plaquenil, which I assume is causing the eye problems on top of Sjogren’s. It’s not a required medication and many members have found other medal that help, although very important to let doc know, as it will probably require titrating off some, higher doses of others, and perhaps even new meds.
Because we just recently moved to HI, getting meds filled is a monthly game of musical pharmacies. This made me look into other options. I found a wonderful Ayuvedic capsule named Ashwagandha root. It works very well on the joint pain and inflammation.
I also am trying help oil, which because it contains no thc is perfectly legal and available on line, which I use for pain, headache, nausea, etv.
Lastly, Serovital, which is supposed to assist the body to regenerate hgh cells.
Those are some of the non-prescription items I use, as I am never sure to be able to get my meds.
Also, many anti-depressants help with pain as well.
Although that adresses the physical aspect, being alone can be very lonely. On the island I know my husband and…nope that’s it and he travels for work.
Last week I started an aquatherapy regimen at our local ywca. Not only is it great on the body, it helps to make new friends. These are people who are doing much the same many times. Perhaps finding something like the ywca.
You do matter and “how” you choose to exist is not set in stone.
Again, happy birthday.

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Happy Birthday!
I have lupus, SS, a bad retina problem, bad facial nerve pain and other autoimmune diseases. I have an idea of what you are experiencing. You might want to also join the Sj, Syndrome site at Ben’s Friends (if you haven’t already) since many of those women have both and are over 55. I have joined both and it has been helpful for me. I know there is a really good prescription gel (starts with the letter “v”) that people have used with great success for arthritis that you could probably use for your finger. You were smart to change rheumatologists. You might want to consider seeing a therapist. That has helped me learn to cope. Ironically, my therapist retired and I switched to one who had had cancer. It was difficult, but eye opening. I only go once in a while now. It might be hard to believe, but I have found that getting on a strict diet helpful for my pain and energy levels. Sure, it’s not perfect, but it is noticeably helpful. I avoid flour, sugar and junk food. I eat lots of veggies both cooked and raw. I still eat meat, but smaller portions. I take my vitamins. I make a green juice with lots of veggies perhaps five mornings a week. And if it’s a special occasion, I’ll have a small portion of a dessert (I’m not radical). I also take a low dose of a Trycyclic Antidepressant for pain, but I think it helps me a little with depression. This might be good for you and might be something to ask your doctor about. Also, I have gotten A LOT of help with energy and depression by taking certain vitamins. I swear this is the truth as odd as this might sound. The vitamins that have helped me a lot with depression include: D3, B Complex, extra b12 and Fish Oil. Making plans is a rough / confusing one. Today is our son’s thirtieth birthday. We were suppose to go to Disney World with them today. I knew yesterday this would be a BAD idea. Tonight is a little party for him. If I went to Disney this morning there is NO WAY I would make it to the party. So, I had to decline and I’m in bed with my iPad and might very well be for most of the day. I know that pacing myself is crucial. Usually, I can semi plan for an upcoming event by laying low the days before it…but it doesn’t always work out. All you can do is try your best and not worry what others think.

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Sorry to hear of your suffering, Cleo. It is definitely difficult to cope with life when you feel abandoned or ostracized, due to the departure of friends and family members or the inability to commit to various activities because you suddenly become ill and can't attend an event or gathering.

I believe you are wise to seek activities you realistically are capable of that would involve interaction with others. What activities have you sought out or tried? If you like to read, maybe joining a book club would be helpful. You would have regular meetings with others to discuss a certain book you all read. This could lead to future strong friendships. If you have a strong religious faith, perhaps joining with church groups - either for recreational outlets or to aid the community in charitable causes - might appeal to you and give you something meaningful to do with your time.

Of course, anything you endeavor hinges upon your medical condition at the time. You unfortunately are battling a number of serious and troublesome conditions that can limit you enormously, with sometimes crippling symptoms that can ruin your plans for the day. But Lilac was right: don't beat yourself up for not keeping every single commitment you make. Just keep trying.

While I will not pretend to be suffering as seriously as you are, I can say that I also have more than my share of medical issues. I was diagnosed with lupus nearly five years ago and have battled this mysterious illness ever since. I won't go into a lot of detail, but I have spent much time in the hospital due to lupus.

Magnifying the problem have been the other diseases my doctors believe were brought about by the lupus. I had lung cancer for about eight months before chemo treatments thankfully rid me of the disease. But meanwhile, lupus was weaving another web of agony for me in the form of interstitial lung disease - a condition that hinders the flow of air to the lungs. This nightmarish disease has left me with only 30 percent of my lung capacity.

I also suffer from sleep apnea, and the large volumes of prednisone (which weakens the bones) I must take have left me with four fractured vertebrae. I have periods - sometimes long stretches - of intense back pain that causes me to sleep in a reclining chair to get comfortable enough to sleep.

Still, I try to keep a positive attitude and continue to engage in activities that my condition allows. You can't give up as long as you are alive. I am not suggesting you rush out and spend an inordinate amount of time on activities that are too demanding for you, but find some things you can do, hopefully that include a number of other people. This could lead to new friendships that could be valuable as you grow older.

My advice is to slowly see what you are capable of doing without tiring yourself out on a regular basis. As you continue with some of these activities, perhaps your condition will improve. I firmly believe your mental state and happiness are a big part of the recovery process. You will feel better physically if you are OK in the head, so to speak.

Any way, good luck and let us know how things work out.

P.S.: If you are able to travel, that could be a great help to your state of mind. I have planned a number of relatively cheap, close-to-home trips as well as possibly longer, more financially-involved vacations. Remember, we aren't getting any younger and must enjoy life in the present! Don't put it off until next year.

Thomas Franklin

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Hi Cleo ! , WoW! Am sorry to hear that you have so many things going on ! Am not going to say , but Life with SLE Lupus myself and arthritis , and Trust me ,“I had to make thing’s happen for myself !”. Yes I fought when I could on Good days that Lupus allowed me , Lupus is not fair and don’t care Nothing about Life or plans , it is hard to think of 5 dreadfully things such as what you are dealing with daily. So to say to you hang in there and keep fighting the best way that you possible can. Prayers go out for you…Beverly L.

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Hello Cleo,

You've gotten some wonderful advice from members, and I was going to suggest about a pet. The healing powers of a pet are really wonderful, especially for depression.

Take care of yourself, and don't let others lay a guilt trip on you. People without fatigue - just don't get it. Trisha

Jane S. said:

If you could choose one meeting and try to go to that one. Take some of the pressure off with your expectations! I go to my quilting group, every 2 weeks, but I had to skip the last few because I was too sick. I'm on a medication that makes me sleep too much, waiting for that to wear off! Anyway, when I go, they are all really happy to see me, which is really great for my self esteem. I also go to lunch with a couple of friends, and rest the next few days. Sounds like you haven't made any friends yet to do that with. Is there anything like a place people sit around in the afternoon, that isn't as formal as a meeting. Something you could show up to for a short time with no structured time to come and go? It would be nice if someone could come and visit with you once a week, or come read to you. Ask if they have someone who does this kind of thing. I am sad for your loneliness. It takes forever to grt a new patient appointment! It is worth it to find a doctor who you like and trust to take care of you. Can you have a pet? I would be 10 times more lonely without my cats. The require food, water and a cleaned box in the bathroom, which I can handle.
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Hey Cleo, I forgot to tell you of my experience on Saturday, which I highly recommend to anyone. I attended a re-enactment of the Civil War's Battle of Franklin in middle Tennessee. It was very interesting and realistic. It also offered an opportunity to meet some very friendly people. I met a kind woman who pushed me a long distance in a wheelchair to get to the viewing area of the re-enactment. She refused to be paid for pushing me a considerable distance, but I made a new friend.

Toward the end of the re-enactment I began struggling somewhat with my breathing, and the woman sought emergency staff members to come to my aid. They wanted to take me to hospital, but I convinced them that I would be OK with an albuterol treatment and was able to stay for the entirety.

My point is there are always compassionate people available to help you when you are a little hesitant to try an activity you are uncertain about. Get out there and see what you can do!

Thomas Franklin

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Hi Cleo....5am....yes...I have SLE...lol...Sjogrens, Addisons, Raynauds and AR.... oh I forgot IBS ...lets just say if there is something out there I may have a chance of getting it....LOL...

One thing I did learn ...see I have had Lupus for years some 36 years....you can not loose your sense of humor....

Right now I am down , really down....I think it has to do with the cold streak that is hitting the US...I really look at the weather patterns ...they have a lot to do with what is going on...my inflammation is sky high...and I am on Chemo ...does it work ...??? who knows ..I know the Dr's don't....I live in Vegas ...nice dry climate most of the time....

Now just like they said get a pet...lots of company ...such a gift...

Then on good days...you get up girl and you go..go ....go...and you have fun...cause you don't know when your next down day is...

These people who are upset with you....don't even give them another thought...they will get glad in same shoes they got mad in....

Well good luck my friend ...and remember you have sisters that care...

Hugs,

Bernice

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I have a “basket full” of autoimmune diseases, too. Each day presents it’s own challenges, but the exhaustion and pain are constant. I feel for you, with no family nearby. Without that, you will have to be your own advocate. Get a pet, as others have suggested. Do as much as possible, but explain to others that you have limitations. Join a real world support group. You may meet people who can relate to you and understand you. If you are in a +55 community now, plan for the future…best case and worse case scenarios… Consider assisted living. Make sure it’s a facility that will transition you to nursing home care, if you need it. Or, if you are on good terms with your sister, move near her.

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You are not alone, many of us here have multiple diagnoses. I stopped counting when I hit double digits…lol I would definitely look into a companion animal or a service dog who can help you do things. You have to become an advocate for yourself. No one else will step forward to do it for you. I know how difficult it is to even muster the energy to go to a doctor’s appt let alone demand that something be done but it is the only way to deal with doctors who don’t help.
You are paying them to provide you a service, it is up to you to get your moneys worth. Too many doctors forget that they work for us. As far as the medication to treat the diseases there are many medications available not just plaquenil (which is the one that can affect the eyes). It can take a while to find a drug regimen that works. Some meds cause side effects that are worse than the disease itself but don’t give up trying new ones out. Some need a month or more to adjust to.
If your insurance covers it, you may want to consider seeing a counselor to help with the depression. Depression alone can make you hurt and really exacerbates the pain we are already in. I currently take two different antidepressants and they really help. Does your community have buses to take you to the grocery store, doctors appointments, shopping etc…? As someone else suggested you might need an assisted living facility. My grandmother lived in one for years and they provide as much or as little assistance as you need.
I’m guessing you live within an hour or two of NYC judging by the cost of your birthday trip. Happy Birthday! My husband is from upstate (Albany) and most of his family is still there. If you live near that general area I can ask if they know of any good assisted living facilities or rheumatologists in the area. I live in CA or I would help. Please don’t give in to the diseases and go kick some doctor butt…lol
Gentle hugs, Annemarie

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Cleo, Church is always a good place to make friends and get help. The singles group I mentioned , I met at church and they do activities every week. I don't go every week, I pace myself and listen to my body. My church is nondenominational meaning all religions and people from different backgrounds are welcome. I went to this church for years before I became a member. They didn't require membership to participate. I also go to the Lupus support group in my city once a month. Look up lupus support groups in your city.

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Trisha said:

Hello Cleo,

You've gotten some wonderful advice from members, and I was going to suggest about a pet. The healing powers of a pet are really wonderful, especially for depression.

Take care of yourself, and don't let others lay a guilt trip on you. People without fatigue - just don't get it. Trisha

Jane S. said:

If you could choose one meeting and try to go to that one. Take some of the pressure off with your expectations! I go to my quilting group, every 2 weeks, but I had to skip the last few because I was too sick. I'm on a medication that makes me sleep too much, waiting for that to wear off! Anyway, when I go, they are all really happy to see me, which is really great for my self esteem. I also go to lunch with a couple of friends, and rest the next few days. Sounds like you haven't made any friends yet to do that with. Is there anything like a place people sit around in the afternoon, that isn't as formal as a meeting. Something you could show up to for a short time with no structured time to come and go? It would be nice if someone could come and visit with you once a week, or come read to you. Ask if they have someone who does this kind of thing. I am sad for your loneliness. It takes forever to grt a new patient appointment! It is worth it to find a doctor who you like and trust to take care of you. Can you have a pet? I would be 10 times more lonely without my cats. The require food, water and a cleaned box in the bathroom, which I can handle.
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Hello Cleo and happy birthday to you! I truly understand where you are, I have SLE,Fibro and failed back surgery. I only have a daughter who lives in my city and state. I have felt comfort in being home in my bed with my iPad and remote. I am on meds for depression and have tried ending my life. I started attending a local church, even on days that it took everything out on me to attend. Thank God it’s only 2 miles up the street. I would go and leave without speaking to anyone. One day a lady came to me and asked if I was interested in joining their prayer group. I agreed hesitantly. So far I have not been able to attend any of the meetings. There’s one tomorrow that I am going to put forth effort to attend. It’s informal small group and I don’t have to say anything if I don’t want. I am stepping out of my comfort zone. Your story inspired me. You want to go, you plan to go but health issues hold you back. You try to concur mountains I am afraid to walk over an anthill. You just have to take shorter steps for shorter times. Pets, seek out friends in your community and activities that will pamper you and add conversation. Get a manicure or pedicure or a haircut and have a conversation with them, they love to talk. I pray that you are able to have strength to do the things you desire and invite others into your life.

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Jane s

Thank you for your suggestions. I like the one where you said to go to an activity and only stay for part of the time if I can’t be there for the entire activity. I am going to do that so I can start to at least meet some people and hopefully at some point making some friends. I do have A cat and his name is Casanova because he is the most loving/affectionate cat I have ever had.

I live in a 55+ retirement community. There are no informal activities. There is a clubhouse that perhaps I could just go and sit there just to get out of the house. There is a gym
that I have been wanting to go to but because of one reason or another have not.