Introduce Yourself Here.....

Hi Mel,

Welcome to the CPA Forum!

Sorry to hear you are having such a bad time of it. I too have fibromyalgia and have had it for decades. And you don't have to explain to us about the suicidal thoughts or about just wanting to die and leave this pain. We all know you don't mean it, but the problem is, death seems to all of us at some point to be the only escape. That is until we realise there is always another way.

You should try to go back into another multidisciplinary pain clinic again, because they know more than they did 10 years ago and it will help you so much more. Try if you can to educate your husband. It is very frustrating for spouses. And believe me, it isn't a 'man' thing. Many men who suffer chronic pain end up abused and dumped by their wives and family also. Suffering a chronic illness and not being able to contribute in the family, is one of the leading causes of divorce. And I don't say this to put a bigger downer on you. I just want you to know that it is common to have this sort of confusion and anxiety among families and in marriages, but there are things you can do to help them.

Whatever you do, do not cause them undue stress. Too many of us do too many stupid things. We have a good day, then we go like the clappers and do a whole bunch of work and our spouses think we are well again, but then boom! Down we go and we don't get out of bed for days. That is enough to try the patience of a Saint!
I know I would be angry over that kind of behaviour too and rightly so!

Sometimes we are our own worse enemies. And I am not saying you are dong this, I am just thinking aloud so that other readers can see what we and our families go through.

If I were you, I would try to enlist the help of your GP to help your husband understand. See if you can find a psychologist who has been trained to treat people who suffer chronic pain, because they are very helpful when dealing with family.

Anyway, you will be supported here, so please, take the time to read as much as you can. We have lots of material.

Peter

hi Mel,
welcome, I have found great support through this forum, and I hope you do also

I am feeling pretty much like you lately, wanting to die, and escape the pain... and the forum members are wondering at supporting and providing info
my husband is struggling with coping with me at present - so we have so much in common

where abouts do you live? I am in Sydney

Thank you Peter. I do understand what you're saying about going hard one day only to pay for it for the next day or two (or a few). The Pain specialist I saw for the injections has suggested I visit with their Psych and Phsio to revisit aspects of the program as it so easy to fall back in to old habits (especially when you're the type who's not good at taking it easy). Also my life has changed dramatically (add two kids and a couple of other health complaints) so I have more demands than I had back when I previously did the course. I had my husband come to my last appointment with me and I think he understands a little better what I'm dealing with but it's so frustrating for him as he has no health complaints (except mild asthma). He's also not capable of empathy at all (ever, with anyone) so that makes things tricky.

Hi Pam, I'm in Geelong in Vic.

Thanks for both making me feel so welcome and not so alone xxx

Hello Mel glad your joined the members.

LIke you at present I am on Lexapro, Quetiapine(seroquel). Vitamin D ,omega 3 tabletsl plus low dose asprin,ramapril, Glicazide Insulin and occasionally Prednisolone when I feel as though Im about to collapse in a heap.

I find the Seroquel side effects great for sleeping except currently 10 -13 hours is a bit too much,anyway that my excuse for not doing a great deal. Though restful sleep makes a lot of difference to chronic pain, reduces the amount of brain fog. and a fair bit of the symptoms.

A Friend of mine has Ibs and a search of the literature a few days ago mentioned peppermint oil as a possible use with Ibs and I will mention it to Her tomorrow you may also like to look up it yourself. As to male sympathy only observed among barackers of the same footy team when it looses.

Anyway I hope you find the site and members a great help

Arjay 🙂 :cheer:

Hi Arjay, thanks for your encouragement.

I've heard that peppermint oil works well too but I forgot to mention I have gastric reflux and it makes that worse so that's a no go for me. I'm on Nexium for that. Anti-inflammatories also make me feel sick so that reduces me to paracetamol and opiods (which also make my bowels worse!!!). I took an extra seroquel today to rest for a while, I just needed a break from it all. I used to take two a night but reduced to one because I was too tired to function during the day; If I didn't have to get up for kids it wouldn't be such a big deal.

I think I'll book an appointment for my Myotherapist this week and see if I can get some relief.

Thanks for introducing yourself, it helps top talk about it with people who understand.

Hi Mel
Welcome hun! I too suffer pain in my neck and shoulders causing headaches and migraines, but it also travels down my entire back as well. All from a car accident 3 1/2 years ago. It is hard when you don't have a solid support group and you think that the people around you keep treating you like there's nothing wrong. I had the same problem as you whereas my girls were 15 & 18 and my husband was a little more compassionate. My husband works shift work and at the time my eldest was doing her VCE. I was doing the best I could with the house (considering I can't even put on my own socks Lol) still trying to cook dinner and helping the youngest daughter, who was going through some troubles. I was in a lot of pain as the various pain mends the Dr's put me on weren't working, suffering depression and fighting an un-named government car department. I finished up sitting them all down and telling them how I felt about the way they were treating me and what they could do to help me. I also told them that if things didn't improve I was going to go stay with my parents for a while 1. so I could have a break and 2. they could look after themselves. I know that it was harsh but I had to do something.
Maybe you could try this with your husband, dad and brother. Sit them down and tell them how your feeling. One thing I've learnt is that people aren't mind readers. They don't know unless you speak up hun. I also agree with Peter about looking into a psychologist. It might take time for you to find the right one but when you do you'll start to release everything that's bottled up inside and feel like a weights been lifted. You can also take hubby to a session for him to see how you've really been coping.
Anyway I think I've talked enough.

Cheers
Jacquie

Hi Mel,
Welcome and please ask for help whenever you need it we will try and lead you down a less painful path if you can handle cyber hugs and bunches of flowers we will send them through the Internet ,I don't have this new dangled four square thingy yet so they may be a bit tattered.
So please enjoy our forum I sometimes put pictures up in funny photos

If you can print this off and ask your family to read it ,push them if you have to because once they have read it they will know and understand your pain .
It is long but it tells our story.
Johnno

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
AUTHOR UNKNOWN
**********************************
TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.
AUTHOR UNKNOWN
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Hi Mel and welcome to this wonderful group
You sure have had a lot going on but I know you will find plenty of support here and plenty of cyber hugs to help.

Hugs

Gayl

Hi Jacquie, Hopefully I can offer you some support. After my accident I also had sciatica for 6 years until I did the Pain Management course and now I barely get it and when I do I'm able to get rid of it pretty quickly. Hopefully that can be the case for you too. It makes life a little easier.

Not a bad idea sitting my family down for a chat, especially my Dad as he's been leaning on me very heavily since we lost Mum as she did everything. He's also had a workplace accident about 2.5 years ago and now has permanent vertigo so between the depression of Mums death (which he won't admit to or get medication for) and him getting this condition it's all about him. I get it but it's frustrating. Anytime I complain to him I get the 'there's always someone worse off than you' or he turns it around so he's complaining about his own stuff. My Brother will support me if I lay it all on the line but he's heavily medicated for bipolar and finds it hard to be compassionate with the drugs he's on because they make him numb.

I definitely need to find a psych, the last one I saw didn't work out at all.

Johnno, Thank you for the resources, it's really hard to explain to someone who's never experienced pain so I'm sure that info will help, thank you xxx

Gayl, Thanks for reaching out, it means a lot that you guys are all struggling too and can be there for each other.

Feeling a bit better mentally today (despite a crappy nights sleep) and I give that credit to you guys for helping me get it out without judging me.

Thank you, thank, thank you xxx

Hi everyone.....well my story is such that 24 years ago radiation therapy after a partial masectomy left me with chronic pain that for some time I was told "it's all in your head. ". Many surgeries later, a Medtronic spinal cord stimulator, thoracic nerves cut, a C/5 neck fusion, etc, and to top it off.... a very bad car accident that left me with chronic pain down my left arm after a rotator cuff surgery has made me feel.....that is enough!!

I have had to work al through these bad times to support my 2 children......now fully grown men......and I am trying to convince myself to take an early retirement.

I have just had surgery again and the anaesthetist decided not to give me a pca and once agin the pain has reared it's ugly head.

He was most apologetic.....and advised he would tear up his bill.......nice.....but doesn't help when I now need to see a pain specialist to get things under control.

Life is once again stopped.....any wonder my favourite saying is "Never tell me never".

I currently work as a records and information manager but feel it is time to rest and start socialising and enjoying what is left of my life.

Has anyone ever been in this dilemma? The cost of medications alone indicate that I should work until I drop.

Hi Jeannette,

I'm so sorry for what you've been through; it sounds awful.

I've had to give up work because of my pain and some other health conditions I have. I was away more than I was there because of so many bad days. I have a husband who supports me financially and you've not mentioned one so I'm thinking you might be doing it alone? I guess you need to weigh up if you can afford to leave work financially and whether you can afford to stay at work physically. It's such a personal decision but it really helps me knowing I'm no longer letting down my employer and co-workers by not being all I should be.

Sorry I've not been much help but I wish you well and trust you'll make the right decision for you,

Mel xxx

Johnno
By reading your posts over the last few weeks and getting an idea on what kind of person you are your wife and boys must be so proud of you.:)

Cheers

Hey Dancer,

Thanks I think ,but in all seriousness it's my wife who deserves the credit she has brought four boys into this world and we together have turned them into men / nice men , they put the toilet seat lid down and complain when someone leaves it up ,they say please and thank you ,they love their wives/partners without fear,they accept gays and lesbians as friends, they hold doors open for others,they let people in at the supermarket/highway,they help people who need it without being asked so I seriously am damned proud of my wife and I love my sons .
Johnno

Johnno
By reading your posts over the last few weeks and getting an idea on what kind of person you are your wife and boys must be so proud of you.:)

Cheers

We all love him!

Why I am not special I just love waking up alive every morning