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so tired and so tired of the pain

hurtingallthetimet

Senior Member
Messages
612
i have to vent im so exhuasted and so much pain...i konw alot are going thgrough the same...ive and responded to threads...my eyes are so blurry i cant see to type...i went with hubby today to do a few a things but im worn out..i hated not to go because hes done so much for me all the time i feel like such a burden...

im just so tired of being sick...in constant pain and constanlty exhhausted....ive taken my pain medications and anxiety medications thats helped some..but im freaking out because i have to take kids to a few appointments because they are out of school so its best time but im dreaded having to be out in the crowds having to drive in the traffic cant take anything to help with anxiety when driving...i just hope and pray the appointments go by quick...im so ashamed that i am in so much fear of leaving the house..then i dread if i see someone that i havent in awhile...i dont feel like getting dressed up like i use to...the ton of weight bothers me so much...

i broke down last night after taking a bath...i took as hot as i could to help with the pain..its getting harder to get in out of tub but cant stand a shower...after i got out i went to closet and closed the door and cried and cried on the floor...i prayed and prayed for things to get better..i hurt to the bone and the fatigue is so bad...the sore throat..swollen lymphnodes...etc. .etc...im so tired of being sick...

if it wasnt for my kids i really dont think i would want to live another day..that may sound crazy but i cant help how i feel...i feel useless...im tired of it all repeating my self over and over with the memory loss...not being able to work...not being able to do anything...i have no life really...i might smile and try to look normal when i have to go out...but inside i am constantly praying no one sees me and how fat and ugly ive gotten...that i dont dress well....that my stomach is so swellon i look preganant.....but its worse when i have to go out by myself im having a panic atttack thinking of the appointments..

im just so sad and depressed and aggravated becasue i cant see much of what im tyuping and i hurt so bad...everylthing seems so dark and so fearful right now...i hate it..i hate that i cant stop crying...i pray for good dreams..thats crazy..that i pray for good dreams so i can at least have some peace and happiness for a little bit while im dreaming something good...

i feel like ive died already...
 
Messages
55
Location
River Falls, WI - USA
There is a lot of pain, angst and frustration in your post... So much so that it is difficult to respond and feel like we're addressing the topic adequately. However, not replying to such pain - it's turning a blind eye and I can't do that.

I just wanted to make a post acknowledging your pain and to let you know that I hurt that you are suffering so. Please... Feel free to continue writing to us as we're likely the only ones that really understand what you're going through. We're your comrades-in-arms in this war against an invisible foe. When one of us suffers, we all suffer with them. Take care and best wishes (and gentle hugs) to you.
 

Nielk

Senior Member
Messages
6,970
i have to vent im so exhuasted and so much pain...i konw alot are going thgrough the same...ive and responded to threads...my eyes are so blurry i cant see to type...i went with hubby today to do a few a things but im worn out..i hated not to go because hes done so much for me all the time i feel like such a burden...

im just so tired of being sick...in constant pain and constanlty exhhausted....ive taken my pain medications and anxiety medications thats helped some..but im freaking out because i have to take kids to a few appointments because they are out of school so its best time but im dreaded having to be out in the crowds having to drive in the traffic cant take anything to help with anxiety when driving...i just hope and pray the appointments go by quick...im so ashamed that i am in so much fear of leaving the house..then i dread if i see someone that i havent in awhile...i dont feel like getting dressed up like i use to...the ton of weight bothers me so much...

i broke down last night after taking a bath...i took as hot as i could to help with the pain..its getting harder to get in out of tub but cant stand a shower...after i got out i went to closet and closed the door and cried and cried on the floor...i prayed and prayed for things to get better..i hurt to the bone and the fatigue is so bad...the sore throat..swollen lymphnodes...etc. .etc...im so tired of being sick...

if it wasnt for my kids i really dont think i would want to live another day..that may sound crazy but i cant help how i feel...i feel useless...im tired of it all repeating my self over and over with the memory loss...not being able to work...not being able to do anything...i have no life really...i might smile and try to look normal when i have to go out...but inside i am constantly praying no one sees me and how fat and ugly ive gotten...that i dont dress well....that my stomach is so swellon i look preganant.....but its worse when i have to go out by myself im having a panic atttack thinking of the appointments..

im just so sad and depressed and aggravated becasue i cant see much of what im tyuping and i hurt so bad...everylthing seems so dark and so fearful right now...i hate it..i hate that i cant stop crying...i pray for good dreams..thats crazy..that i pray for good dreams so i can at least have some peace and happiness for a little bit while im dreaming something good...

i feel like ive died already...

I am so sorry, you found yourself in such a painful state! I can empathise because I too am almost always in pain, sometimes it seems unbearable.
Your describtion of going in the closet and just crying on the floor is not a strange occurence with me. Except that my children don't live at home anymore and when my husband is at work, I don't need to hide it. I just cry away - pray, appeal to God. It is a very hard test to go through. I'm sure the time of the year with all the holidays, makes it even harder. Crying, in my opinion is a good thing. It's a natural response that our bodies have and is a good release.

I know that at time like these, it's very hard to think clearly. It's important that you realize (as you mention) that your children are the prize that keeps you going. Everyone needs "a reason" to fight for. Your children love you and need your love back.

I also nknow that at times like these, we throw in every other reason too of why we are so unfortunate. You mention; "fat and ugly", "don't dress well", "stomach swollen".
I think it's important to differentiate what is crucial to getting better and what comes as a byway.

If you can just pick one thing of your list of negative thoughts and try to work on that one thing, I feel that you will regain some type of control again. You say; "I feel like I'm dead already...", but you are not and you can chose to take back some control back. I know you feel like your life has been hijacked from you, yet even in the darkest hour, there are reasons to go on and try to resolve whatever is in your power to do.

You mention the kids being home and you having to take them to doctor's appointments. Are these well visits? Could they be delayed for another time when you are not stressed out? I know at these times when the kids are off, the doctor's offices are crazy busy. Maybe you can just take them out of school one day when you feel stronger and take them then.

Fat & Ugly: I'm sure you are not ugly! come on - don't be so hard on yourself. Many of us gain weight with this illness (some lose a lot). Maybe, if you can afford it, buy yourself a new outfit that is slimming or you love the colors, it will give you a pick me up. I too have a swollen belly and have gained a lot of weight these past 10 years. I finally forced myself to go on a diet and am losing..very slowly. It's a big struggle, but it does make me feel a little better about myself.

I pray for good dreams all the time. A good movie on the TV can also transport me for a little while.

I feel such desperation in you words that my heart aches for you. I hope that better days lay ahead and that you start getting stronger in every way.
 

hurtingallthetimet

Senior Member
Messages
612
thank you both for your kind replies....i think im very overwhelmed by what use to be and is to most normal people the littlest of things now days...everything overwhelms me...the kids appointments are yearly checks, dentist, eye glasses etc...things they need..they are very hard workers and ifeel guilty for not being able to do more for them...i try to act happy as much as possible i dont want them to feel sad becaues they love me and it would make them upset to know how ill i am...

the holidays do make it harder i think..ive seen post by others who ive tried to let knw they arent alone either...its so hard while im very happy for my extended family to be together...im very sad that me and my family cant be with them because i cant take the drive...because i cant work to buy the tickets to fly etc...

i am so upset over how i look becasuse i use to be very very active and exercised so much...i was so fit and thin....and i wasnt a beauty queen by any means but i use to fix hair keep it cut colored and wear makeup and try to dress nice...i cant fit into any of my old clothes...i dont feel like fixing hair or makeup...i have run into people ive not seen for awhile and they have actually given me a shocked look up and down look...you could see on their faces that they couldnt believe how much i changed...and i hate it..i hate these illness that we all have to go through..i hate the pain the exhuastion...ive lost so much from being ill...it helps to vent and it helps to know that others understand and i really do appriciate both of you replying...im just in a very sad place right now...
 

anniekim

Senior Member
Messages
779
Location
U.K
I am so sorry for all the pain you are going through. I think if I'm right you have not been ill for that long and so it sounds like you are grieving for your old healthy life, a completely natural thing to do

You mention guilt a lot. This might be something you can look at. It's not your fault you are ill and can't do the things you would like to do with the children etc. if you have the energy, which I realise you might not, and the resources, I wonder whether seeing a counsellor who understands how debilitating m.e/cfs is would be helpful in giving you some tools to cope with a life changing illness?

M.e/cfs can be incredibly disabling and there are so many adjustments you need to go through. Would talking to your husband about all you are feeling help? He might be able to reassure you that you are not a burden and perhaps you can together brainstorm how you can find ways to manage your very limited energy and pain better? Perhaps even counselling together?

Personal experience and many people's stories of living with this illness show that keeping within one's energy envelope (and that includes emotional energy which is also very draining), keeping as calm as possible, pre emptive resting can give the body the best chance to heal and improve. Also I believe in America you do have some docs that can run more tests than here in the uk (I'm a Brit) and they might identify areas that would respond to treatment. I appreciate though that this may cost a lot of money if you don't have the insurance so it might not be possible to do which is hard

As for weight, I put on a lot of weight when I was bedridden five years ago and though improved I am still housebound and still very inactive so I've been unable to lose the weight, especially as I seem constantly hungry too. I don't like it but there is little I can do. I too can fall in the trap of thinking what is the point of doing my hair, wearing make up, nice clothes, but this is not helpful. It's saying only slim people can be attractive. My mum had always been overweight but she always dresses nicely and looks lovely so this is my inspiration. Being overweight and not putting any effort into your appearance you are going to look worse. It might be worth investing in new stylish clothes in a bigger size and looking at pictures of larger women who dress nice and look great.

Finally, and I hope this doesn't come across as insensitive. There are people with m.e who are very severe, bedridden for years, unable to talk, read, write, even tube fed. These people would love to just have some functioning and it helps me to remind myself that as hard at it is it could be worse. I was very severe for sixteen months and though I am still so limited (I have been too ill to leave my flat now for 18 months) I try and appreciate the things I can do, like read, watch tv, conversation. This is not to undermine the suffering and loss you are going through, m.e that is not very severe is still very hard, but just to try and cherish what you can still do

Be gentle on yourself and remember people can improve with careful management.

Edit:

I've just read your profile and see you've been ill since 2005 so apologies for mistakenly thinking you have only recently become ill.
 
Messages
1,082
Location
UK
I'm so sorry for what you're going through right now. Reading your post was almost like reading my own thoughts; the exhaustion and frustration pouring from your words. Sorry i'm too ill to write more today, but just wanted to tell you you're not alone. Your post made me cry as there are way too many of us who also feel like you do and its soul destroying but we completely understand what you're going through. Just wanted to send you a hug :hug:
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Your story made me think of this article:

http://www.prohealth.com/library/showarticle.cfm?libid=16458

I would try not to be hard on yourself. Just because you gained weight, does not mean that you are ugly! Reminds me of an old wise ass remark if someone call's you fat. "I may be fat, but your ugly, and I can lose weight".

GG

PS So has a Dr been able to address any of your issues to give you some relief? Perhaps pain should be first on your list?
 
Messages
15,786
Being overweight is very hard emotionally. Most people see it as a reflection of willpower, etc ... and in some cases, that's true. But for a lot of people, being fat is simply a result of being sick. I wish we had an easy way to deal with it. I could just eat very little, but then I'd feel really crappy all the time, and be worried about making myself sicker by not eating enough.

Even with unbreakable willpower, the unfortunate reality is that we just don't know how we should be eating to stay as healthy as we can without gaining weight.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
I really understand. I used be in top physical shape. I spent years at the gym literally sculpting my body the way I wanted to look, and I was real happy with it. Till I got sick and couldn't do it anymore. Between meds, thyroid problems with the Hashimotos, and not being able to exercise, I am more than twice the size I used to be. And I have had relatives call me that "fat, lazy relative who doesn't want to work". Everyone forgets how we used to be and how we used to look. I, too, would never have gone out without my makeup on. I always had the latest makeup colors. And my hair was always done. I wasn't the couch potato slob this illness has turned me into.

All I can say is, there are many of us going through this. We just have to pray things get better.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Sending :hug: to you, everyone else has said it so well already. I have been there too, and probably will again someday, i understand your pain as i share it with you.
Take care, Justy xx
 

anniekim

Senior Member
Messages
779
Location
U.K
Gg, that was a good link, very interesting

GG, made a good point. Have you got a doc who is able to try out different pain meds? I hope you will find something that could help
 

hurtingallthetimet

Senior Member
Messages
612
thank you all for the kind replies and advice and info...the doctors think the huge amount of weight gain came from mix of not being able to exercise like i use to and seroquel..im trying to wean off seroquel the generic but its been hard...

the thing the doctor did do that has brought me some releif the most relief ive had since being ill actually was the moriphine..its very low dose but it takes edge off better than anything else...the depression just seems to get worse...tried so many medications...had talked with doctor about intreatment center and id love to try it for some help but cant afford it..

its sad that so many of us are in so much pain and exhuastion...these illness get so little {not sure word} ive ranted about it before...these illness get so little sympathy and understanding guess best way to put it...its like people dont even acknowledge it is real and debilitating...i hate the fat remarks...family are the people who should love and treat you with most respect...but several of mine say the cruelist things...i am hopeing to loose some weight..

anyone got any good ideas on howto loose weight? maybe i should post a thread and ask...
just so easily overwhelmed...so tired of living like this...so badly want things to get better...good things to happen...just so much stress with everything...but it does help to talk and i konw everyone is in pain and exhausted and its exhuasting reading and posting...so thnak you all again for taking the time to use what little energy you have to try to help me and others on here...