Fibro patient, me, always letting family members down when flair ups happen alot

Support
#1

I would love to know how to talk to my mom about when I have made plans with her and I have a flair up when that time arrives. I'm constantly letting her down and I don't know how to explain it to her anymore. She gets very angry at me when I call her to cancel our plans due to my pain level being very high. I also have the syndrome where you are afraid to leave your house for fear something will happen to me. I also suffer from depression and now with the weather in Nebraska getting colder, all I want to do is sleep on my comfy bed with a heated bed mattress, where I know I will be safe.

It seems like every time I make plans with my mom I let her down by canceling and she is getting impatient with me and very upset because she just doesn't understand how difficult it is for me to live each day with all the obstacles I have to over come.

Such as:

1. The excruciating pain when you first get out of bed and try and walk to the bathroom.

2. The feeling of being helpless and that no one understands and they think I'm just faking my symptoms because I don't want to do something, which is not the truth.

3. Dealing with brain fog and trying to understand what people are saying. I feel like I'm retarded because I just can't understand what people are trying to tell me.

4. The pain never goes away. It gets to be so exhausting suffering day after day with the all over body pain especially in my neck, shoulders, hips, lower back, knees and hands.

5. I have suffered like this since 2007 and I haven't been able to work since then.

6. I've been denied Disability Insurance even when going in front of a judge with a disability attorney. I'm considering reapplying for disability but with the brain fog I can't fill out the application. Would a disability lawyer do that for me? I know I will be denied the first time around because that is what the Federal Government does to everyone, they deny you so you will give up.

I have gotten off track from my original posting of me always disappointing my mom and the rest of my family.

I wish people would understand that I'm not playing a game and making up these symptoms. You'd think they would get the picture since I'm currently on Oxycodone for my pain, which doesn't really help that much.

What can I do to not let my mom down all the time? She is 89 and has arthritis so she understands the pain but she doesn't understand the depression behind the pain and the not wanting to leave my home part either. I've gotten to the point where I don't even want to talk to her on the phone because I know I'll the same song and dance of why don't you go see a therapist and a doctor that can fix your pain. If it was that easy I would have done it a long time ago.

Thanks for listening. I would love to hear any advise anyone has to offer.

#2

FP, I know exactly where you're coming from.

I keep having to cancel on people because you just don't know when it will strike next. My anxiety is a real problem and it sounds like yours is too. We worry so much about feeling "ok" when it comes to the time to meet up with someone we have a really crappy night's sleep and the pain gets worse. I suffer with the depression you have too and I will start seeing a therapist for this soon. I don't think it wll help but thats the way my mind can be at times. We love our beds too especially when they're warm and cosy.

It's hard when people get frustrated with you and I only have a couple of good friends now. When I am feeling better I will ask them if they are free rather than making definite plans now because I feel awful for letting them down. Maybe this will work better with your mum? If she will understand. It's hard for people with arthritis to understand us sometimes because they feel that they are worse off than us. Not saying if anyone is, but a lot of people compare illnesses.

I would definitely apply for disability and definitely get a lawyer. I live in England but have heard about the bs system you have over there. It's pretty much the same here now. We have to stay strong and get through this together. It's a very hard life but we will make it!!

Gentle hugs and sisterly support

Jo

#3

Hi,

I also have fibro and I have previously suffered from severe depression. They can create a vicious cycle: you have pain, you feel depressed, the depression makes the pain worse, etc.

Perhaps a pain clinic is the place to start if you have not tried it yet.

A therapist can also help by giving you support and setting some goals with you to improve things as much as you can.

Your mom is quite elderly and won't be with you forever. I lost my mom 3 yrs ago at 94 and miss her every day. Perhaps you can have a standing lunch date or movie afternoon, pick a weekday which seems to work. Mae the movies great feel-good oldies that you can rent or stream to your TV, something she will really enjoy. (You can even order lunch in and make it a little fancy without putting yourself through too much. Or have a tea date: tea and those nice English biscuits, and spend an hour or two just chatting about good memeories. As your Mom about her life story, and things she recalls from her childhood. It will eep the conversation off your situation.) If you have a flare that week you already have a coming appointment you can probably keep. Get extra rest before your appointment to ward off flares. Keep hydrated, take your meds and supplements... Oxycodone can make people feel very lethargic and depressed. I think if you could find another med combination you well might feel much better and have more energy.

Then send your mom a card or a letter telling hr how much she means to you and how sorry you are that your illness is robbing your time together. Tell her you are doing all you can to feel better and get more control over your symptoms and ask her for her understanding.

Yes, a disability attorney can help with the forms. I practiced as a lawyer for 15 yrs and did them all the time.

Lastly, keep fighting, don't give up, give yourself credit for your strength and courage through this horrible illness, and know that you still have a good life ahead and good days coming.

Good luck and better health! We here understand and we send you good thoughts and all best wishes. We have to keep fighting and take back our lives as much as we can. Life is so presious and beautiful and we have a right to it! Fibro be damned, we will keep on

the battle!

Judy in Newport

#4

Get a laywer! I just won my case. Most lawyers can only charge 250.00 by law for SS.disability counsel -all the way to the judge! Tell your mom it is what it is! This pain sucks the life right out of you! I had a talk with my family and friends and found out that they don’t understand but can be supportive…I found myself so sick of this pain this morning that my heart was jumping from the anxiety of this pain never ending.I wish you the best. But its you that has the pain…so if people don’t understand…too bad.

#5

Dear Flowerpower: I have experienced your nos. 1 thru 4. First and foremost you must believe that this illness is not your fault. That you should not have to apologize for being ill and in pain. I find that people will only respond compassionately to an illness they can see. We all go through the emotion of guilt and we must stop that! I was hating myself because I always had to cancel family social events especially when it involved my children. I made up my mind that I would not be so hard on myself and accept the fact that I would not be attending social events or make arrangements with people. I put out the word that I am not a sociable person - period. With or without having fibro. And I am like you - I hate leaving my safe home for any reason.

In order to cut down some of our frustration, I think it best not to expect people to understand. Even our mothers. Maybe your mom does understand, but there may be an underlying reason why she doesn't want to? And it is very hard for one to understand another's depression. And about that - I think a lot of the fibro medication causes us to be depressed - and in my opinion - they make us lethargic which can be mistaken for laziness by others.

In order for others to understand this I always say something like "yes, I will go but only if I am not in pain" and make sure I say it every time. I never, ever make a definite date for anything. So, if I end up not being able to go, they have been warned and won't feel so let down - and more importantly - I won't feel that I've disappointed them. I've even told others that if they are coming to my house for a visit, they must give me a day's notice because I won't know if I will be in pain that day or not (and I can plan to take a Percocette). If you keep consistently repeating this to your mom each time, hopefully she will understand how much your pain limits your choices in life. At the very least, it will have alerted her to the fact that it is only a "maybe". My mom is 88 yrs. old and it is only since she started living with me did she realize the seriousness of my illness. She now ends any requests of me with "but only if you feel like it". Finally, she gets it!

No. 1 and 2: I too cannot get out of bed in the mornings. I too take the same pain pill and have had it lying on my night stand so I can take it right away when I wake because my feet hurt so bad I can't put them on the floor. I have recently done some research and have found out that the pain in my heels is not the fibro but something called planatar faciitis. I have been doing the foot exercises offered and it has helped a lot. Monday I am off to the orthopaedic. At least that takes care of the back part of my foot pain. Every little bit helps! It might be a good idea to be checked out by a doctor for every individual pain area in your body to make sure it is fibro and not something else. Have your body checked out piece by piece!

No 3: I am lucky not to have much brain fog. It used to be very bad and I am not sure why it cleared up. I know I repeat everything in my head when people are talking to me with the hope that some of it sticks. Also, I have a habit of jotting things down quickly in a note pad while people are talking to me. Especially when on the phone where they can't see me doing it. My friends and family have gotten used to see me jotting things down during conversations.

No 4: As I am typing this my knees are killing me! Are you taking anything other than the oxyc? I have found that the Lyrica and Cymbalta help with the overall pain, but I still have to take Percocette to get rid of the pain all together for a few hours. I am so sorry to hear that the oxyc doesn't help you much.

Flowerpower: My heart is with you and I hope you can resolve the problem with feeling you are disappointing your mom. Keep in mind that we all have choices and it seems that she chooses not to understand. Maybe you can print out some of the messages on this site and show her what fibro does to all of us? As far as the disability goes, there are a number of members on this site that have gone through this so I am sure they will be sending you some good advice.

Are you seeing a good doctor(s)? Do you live alone? Your mom might be right in that it may not hurt to see a therapist to help you through this. Maybe take your mom with you so she can understand better. It took me a long time to get to this - but you have to think of yourself first and do what is best for you. You will only stress yourself out if you try to get people to understand. It is important that we at least keep our mental health as much as possible. Maybe there are others on this site who have succeeded in this though, and can let you know how they did it.

Well, those are my thoughts. I hope some of it is somewhat helpful. Please feel free to vent to us anytime and I wish you all the best.

JoJo

#6

Hi FlowerPower. I wrote a response to you earlier this morning and managed to lose it while finishing it. I hate when that happens. And fingers hurt a lot today so didn't rewrite it immediately.

First off, the government has finally acknowledged that fibro is a disability so if you file another claim, hopefully it will be accepted this time. Working with a lawyer is probably the best way to go about it because they would probably handle all of the paperwork and present the case in a manner that's more likely to get it through.

I wanted to stress that moderation is always the clue for us. Obviously you cannot do the things your mom expects of you, so what about finding a middle ground? Can she come and sit with you, instead of you going out with her? Is she in good enough shape to do that?

If not that, then what about skpying with each other if she can get on a computer? Someone else could set it up for her and probably help her Skype you once a week.

If not that, then the good old phone is another resource.

What your mom doesn't or won't understand is that you have a forever illness, one that brings forever pain and fatigue. You apparently are not able to get out of your house anymore, so you both should try to work around that obstacle. I would suggest making no more plans that you seriously think you are no longer capable of carrying out. Like I said, her visiting you while you sit or lie down should be enough. Any more than that sounds like it's beyond your resources to do and should be nixed, whether or not your mother agrees with your decision.

Trying to get family members to believe that we're chronically ill is another matter entirely. My mother and sister try but they have a hard time with it. My mother keeps talking about a time when I will be "better" or "fixed." She seems to get angry when I tell her it's a chronic illness and keeps insisting that my doctor isn't competent because she cannot change my illness status. They should realize how fortunate they are to be well enough to feel that someone else's illness is an inconvenience!

The fogginess is normal with fibro, as is the fatigue. I'm getting to the point where I feel pretty woo woo on a regular basis. It may well be the medicine I'm on to treat the pain, but I prefer the woo wooness to the full onset of pain.

The pain never does seem to end. Medicines help to dull it a bit but that's it. And it's very draining to feel this way.

Like you, I hurt a lot when first getting up. At least a lot of it goes away once I move around a bit.

You're not imagining ANY of it. It's all part of fibro, I'm sorry to say.

You might want to consider going back to your doctor and discussing anti-depressants and maybe anti anxiety meds to help you with the grief and loss and anger you must feel over this illness and your losses from it.

Please come back. There's plenty to learn here and it helps you to manage the illness better.

#7

Dear Flowerpower: My heart goes out to you. I also have severe bouts of agoraphobia. As for the depression, I feel that this is a chicken and egg question. Does the severe pain cause the depression or is the depression an illness in itself. The truth is that in the end it doesn't matter. Your depression is very real and you deserve no less consideration and respect than anyone else suffering from this illness, even if you didn't have fibro to contend with also. I also 'let others down', if that is the term that they prefer to use. And I now realise that the anxiety that builds up prior to family get togethers or invitations to meet up with friends only makes everything much worse. It took me quite a while to admit to my doctor just how depressed I was getting but once I did he prescribed a mild antidepressant in a small doseage that is generally enough to lift my mood a little so that I can begin to think of coping tactics. Inviting your mother to go with you to the therapist sounds possibility. She may appreciate the idea that you would like her support. But I'm sure that there will still be situations where people don't try to understand. What you have to realise is that their lack understanding is their problem and not yours. My husband and I were recently invited to a neighbours wedding aniversary party. We received the invitations a month month prior and my told them that we would be going. As it turned out, I was in too much pain and just too exhausted to go. My husband went and took a note of apology and a bunch of flowers from me. My neighbour Margaret phoned me to thank me and to say that she understood. A week later I met another neighbour in the doctor's waiting room. She said, "It's a pity that you didn't come to Margaret's party. She made a real effort with everything. You were the only one that didn't turn up." I replied, " I was sorry to miss it to. I would have liked to see Margaret and John enjoying themselves but I know that they understand." She sniffed and walked off. What I really wanted to say was "Thank you for making me feel worse than I already do."

I know that I cope some days better than others. I am trying to accept and value each day for what it is. Yesterday it was all I could do to get out of bed, get showered and dressed. The thought of meeting anyone was a real torment. But that was yesterday. Today I was able to walk around the garden and when the postman walked up to the door I chatted with him for several minutes. It may not seem much of an achievement to anyone else but I I feel good about it. I don't know what I will be able to do tomorrow. It may be much more or it may be less but that's all right too. At the moment I only need to deal with today. Try to live in the now, the moment. But most of all try to celebrate your achievements no matter how small they are. Try to work out 'coping strategies' for yourself. And remember, you can always find a welcome and someone to listen to you here.

#8

Great advice, all of it! Especially the part about living for the moment and enjoying the small things you can do. How true!

Your neighbor really set out to chastise you, didn't she? I would have been so tempted to say, "Yes, because I'm chronically ill with never ending pain, I missed a wonderful event that I would have loved to have attend. Aren't you lucky that you aren't in my position?" Stupid neighbor!

#9

Sky fish, do they now get a portion of your monthly payment, though? I'm curious to know that for future reference.

And again --- CONGRATULATIONS for your win!!! We're all so astonished and happy for you! Now you can finally take care of yourself without worrying about having no money or losing your job or going to work feeling terrible.

How I WISH my rheumy would change my dx from "I think it's probably fibro," to "it's definitely fibro." Stop being wishy washy, doctor!!! I hurt all of the time and am exhausted and want to be able to retire and not have to drag to work thru all of these pain filled days anymore.

#10

Another great letter of advice! i love how you ask to get together when you are feeling well, and ask if a friend is free. Doesn't that make more sense than planning an outing and missing it because you're in pain that day? Yes, it does. I hope that FlowerPower's mother is receptive to this approach because it's much more humane to the sufferer.

#11

Yes that is good advice like Pet says. And yes, stupid neighbour!

#12

Oh man, you guys have such wonderful advice. I love every letter here. I hope they help FlowerPower in her situation.

I know what you mean about losing your mom. Mine is 83 and getting frailer. I know that the time between us is limited, and thus, more special. Hmmm, but she still saw a lot of my behind due to my falling asleep on the couch when she visited. HOWEVER...I did spend as much awake time with her as I could and took her out when I could. Pacing yourself to your good days and bad days is so important with this illness.

In fact, this seems a good time to pull out the spoon theory again for FlowerPower and others who may not have read it:

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

#13

Yes, its only taken 7 years to work that out lol. I still feel guilty but at least I haven't broken any "promises". It's really hard to have a social life of any kind with fibro isnt it? It's hard to keep everyone happy.

#14

What a good point, JoJo, people only do tend to believe in illnesses that they can see, unless those silent illnesses are firmly established, like depression or Autism. And some people still believe the sufferers of them for being ill.

Maybe it's tied in with our lifestyle from thousands of years ago, when one had to hide that one was ill in order to keep from being done in by others. Like dogs do when they're sick. They hide it so the pack doesn't turn on them. In fact, believe it or not, people hid illnesses right up through the 1970's. They didn't talk openly about cancer - it wsa greatly feared and a secret "shame" if you had it. People also kind of hid away mentally disabled people. Being ill was not something you spoke about. So I'm guessing maybe the inability to accept silent illnesses is something rooted from deep within our past.

#15

Yes you're spot on there Petunia. I have to pretend to be "normal" when I go out because I feel like a leper or something if I "look ill". I thought people would be caring when I first got fibro and try to help me, but they look at you like you've done something to deserve it!! They think you are either a drug addict or you have something contagious. Or your drink driving... lol. Whats wrong with this world?! I thought we got over this crap when they stopped the asylums for disabled kids and mentally ill adults etc. Obviously not.

Anywho, we have each other now and we can find support here. Sod the "real world"! lol.

#16

Know what ya mean. I have lost several friends due to them not beleiving me, or having to cancel at last minute. I got my disability when I was infront of the judge. I have fibro, bad back, major depressive disorder. You have to have your doctor list multiple causes, not just fibro. The atty can fill all of the paper work out. I would go with a big national firm like Bender & Bender. They should be able to win it for ya. This summer killed me with the heat and humidity. I live in SW IN, its a sweat box in the summer. Take your Mom to the DR with you so she can hear the DR say things. She might beleive you then. It took about 3 fibro fogs for my inlaws to beleive me.

#17

http://www.butyoudontlooksick.com/category/the-spoon-theory/

#18

By law, the attorney handling your disability case can be awarded no more than 25% (not $250) of any back payment you receive. They do not get Any payments from your future SSD earnings.

#19

You are so accurate with your answer. It took me 2 years of being in a funk feeling sorry for my self to finally accept all my disabilities. Over it now, taking anti-depresants and xanax for when the pain is super bad, i can get pretty hateful. Moderation is the key. I got new hunting and fishing buddies and they all understand that I am sick and what goes along with it. Went hunting this AM for tree rats ie squirrels, had fun, came home took meds and am done for the day. Figure if i can do something I love 1-2 times a week it beats not doing anything at all. I pay for it, but have to do it. I dont want a repeat of my 2 year funk.

#20

Petunia,
Great advice. I am still working and I find little support in the workplace for my illness, even tho I work in a healthcare setting!!!! Our supervisors expect us at work no matter how ill we are. I did get Family Medical Leave Act designation for my chronic illness so now my absences cannot, in theory, be held against me if I have a flare up. But I have to make 2 phone calls at least the day I am out and then file paperwork when I do come back to work. Just reaching the people I need to reach by phone when I am in the midst of a flare is so difficult and I get really annoyed that I have to jump thru those hoops, but hopefully it is protecting my job. Still, I feel guilty when I am out sick, so I know where Flowergirl is coming from. And I get so anxious about going back to work and facing my boss and her judgmental attitude. I feel as if I never want to leave my bed, face the world, or deal with work again. Then it passes and I am grateful that I can still do work I find rewarding, still help people and contribute. I wonder how much longer I will be able to do this. My husband had to retire early and he gets just a very small pension so I am the breadwinner, and trying to keep going as much as I can so we can have a decent retirment. But every month seems harder.....
I am a big believer in supplements: fish oil helps my joint and rib pain; green drinks help my mental fog; caffeine helps me feel less tired; probiotics, esp. kefir, help my IBS issues; resveratrol seems to give me a little more energy as do B-12 tablets. My dr has signed off on all of these altho she warned me that scientific research is lacking for many. However, I don't care if it is the placebo effect, they do seem to help me cope.
I also horseback ride once or twice a week. Nothing too strenuous, but being with the horses and
feeling their strength helps me so much. I recommend it to everyone as a way to enjoy exercise
and do something different. When you are riding a horse you have to focus. It is a mini-vacation. I leave my worries behind and connect with another being, and I always feel better. I cannot ride as much as I would like. Some days I am in too much pain or too fatigued, but I do try to do it as regularly as possible and it has made a huge difference. And I am not a young person. I am definitely in late middle age. I went back to riding 2 years ago after being away for decades,. I have joint and back problems, but riding has strengthened my muscles, helped me lose weight, given me an outlet and new friends.Perhaps some of you would like to check out a therapeutic riding center if you have ever wished you could ride but not sure if it was possible. I am telling you it is an amazing benefit, and therapeutic riding is covered by some insurers. The people that work in those places are great, and would be very understanding of your limitations. Just a suggestion. I don't ride at that kind of center, but they do great work for all kinds of patients.
It is pouring rain here and my knees are kiling me. Time for more fish oil and an aleve! I wish everyone less pain, more energy, sunny days, and caring friends and family.
Bless you all,
Judy in Newport