R U OK Today?

No, not really.
Have just realised that my main support person doesn't get my CP after all this time and what they have seen me go through, this has left me shocked and bewildered that I could be so wrong about what they understand. I feel so alone with CP again. I am so very thankful I always have the support and understanding of this forum to help me get through the bad times and share the smile moments.
Wendles

Hi Wendles,
I'm so very sorry you feel so hurt and upset by what you found out. BIG hugs coming your way xx

I'm afraid time has made me a bit cynical as I really believe that no-one understands chronic pain unless they live with it too!! They try to and think they get it but honestly unless you've travelled the same path as us you don't and will never truely understand 🙁

You will always have support and understanding here 🙂 Please don't feel alone xx

I hope you still find a smile in your day xx

Jo

Oh Wendles. I'm so sorry.

I got another kick in the guts this morning from my husband as well. Whenever my conditions interfere too much with things and he's cranky I get the comments 'oh, that's right, you're always in pain and can't do things even tho no one can find any cause for your pain'. My mother also recently told me that she thinks it's all emotional and psychological, even tho I have a significantly herniated disc in my lower back, and she has decided I need to go and have hypnotherapy to shake myself out of it.

Oh, and I have had to call in sick for the 100th time this year cause I can't walk due to my back and sciatic pain and I'm probably going to lose my job soon.

So I'm not doing very well today, either.

Hi Wendles & Ange
Try this on those who don't know .

Understanding Chronic Pain and supporting the people who suffer chronic pain,walk a mile in our shoes! And

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
Found on CPA web site

hi, thought I will give a little update, no bed is available at present for the mental health unit, so I am being admitted on Monday morning, funny, but I kinda feel better for just making the decision to go into hospital, AND my gp has increased my Norspan patch and given me additional meds to take to help in short term until I see pain specialist on 17th August

so - medically I am getting there, financially - it is a shit heap (can I say that?) although my mother inlaw was approved as my carer today, so she will be getting the carers pension/payment - 1 step in right direction but I cant do much in my current mental and pain state, so I will try to get that stuff sorted when I am feeling better

I seriously cant thank everyone here enough, seems funny that a forum has helped me so much.. I don't know any of you in real life.. xxx
Pam

Hi pamcarr, so glad you are feeling a bit better knowing you have taken that first step and that your gp is helping you with the pain. I don't know where you are but I should imagine that all states with mental health units should have some kind of social worker. They might be able to help you out as far as getting the DSP for you.
hugs
Gayl

Hi Wendles and ange
Thinking of you both and hang in there. Take care
Hugs
Gayl

So glad we have been of some assistance , now get your arse better and back on line telling us all about the help you have received.
Seriously though take care and get better soon.
Johnno

Hi Jo
Your comment helped take some of the sting out of the situation, really i am probably expecting too much out of the relationship for them to really "get it". As you said it is only other CP people that really understand so i should not have expected my friend to have such a deep knowledge of my condition. Now I dont feel so badly treated.
Wendles

Lots and lots of hugs Ange
I have had CP for around 30 years and my Mother still tells me that there is nothing wrong with me even though my specialists disagree and so do the scans. It is hard to understand and live with the disbelief of others especially when it is your family. I really feel for you. I did end up showing the letter that Johnno post about life with CP to my family and that did help a bit. I hope you can find some way for your family to understand just a little so that it isnt such a stressful situation for you.
i finally had to leave work as the days missed finally out numbered those there and when I was there it was just too painful for me to do my best. I still miss it but my health did improve after i left. But my brain does get bored. 🙂 I havent worked out what next.......
lots of hugs
Wendles

hi Pam
So glad that things are at least partly working out for you. i am sure some time in the hospital will help stabilize things and get you to a level that is manageable. We will be thinking of you. sending lots of hugs and wishes.
Wendles

I find Utube full of goodies ,free courses ,lots of music etc etc ,and libraries are my constant survival mechanisms.and gentle exercise plus lots of reading and a little bit of gardening or on the other hand doing nothing !!

Hi Guys
Has anybody ever taken Palexia before. I'm taking this at the moment but some days I'm finding that if I go for a nanna nap, say at about 2pm, I can sleep right through until 4pm the next day. This is happening about once a week, sometimes twice, and is really p...off. I spoke to my GP about it and told her that in that time I'm completely out, I don't wake up at all. I told my pain specialist at my last appointment about everything going on and that I wanted to stop Palexia and start something else. His response was to put me on Norspan 5mg patches and organise surgery for my frozen shoulder.
My fatigue the way it is started with the Palexia and it's definitely not like me to sleep like that, especially when I know there are things to be done.
I'd just like to know if anybody else who's ever taken Palexia has ever suffered these kind of affects.

Thanks Guys 🙂
Jacquie

Hi Jacqui,

Sorry just went through my walk in pill room and sorry to say no Palexia in the store .
I can't help hopefully someone will see your question and reply

Johnno

🙁 no
another migraine from the pain in my neck and shoulder. i have now woken in the early hours with the aftermaths, massive headache, dehydrated and the fact that i didnt take any of last nights tablets. Today just feels too hard. I know i will get through it and then the days will be better but for now i just dont have any fight left.
Wendles