Recently I have become more and more concerned that painful moans, groans or screams tgat I let out are affecting my wife and kids. Unfortunately my pain has been increasing and am max doses of most meds, and the latest procedure seems not to be working.... my concern comew from seeing my kids start to panic if they see I am in pain. Of course I try to go away to another room and have always explained that I will be ok, what is wrong with daddy and that it is never ever any fault of theirs that I get sore (eg if it happens when playing a game with them). I tell them that if I am sore that means they can go on the xbox or have a nice drink until I feel ok (advice from psychologist). Nothing seems to help with me feeling awful that it is affecting them and my wife...
Any tips/advice on controling outbursts or coping with my guilty feelings? I know this may sound silly as a lot of it is uncontrollable but all my pain coping 'strategies' dont seem to help all the time. I will be seeing my clinical psychologist again i a couple of weeks but cant stop thinking about my burden on my family at the moment..... dont know what to do.
Thanks for any advice.
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stampede187
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Don't feel guilty, it's waste of energy. I used to worry a lot that my kids missed out because I was feeling too tired or in pain or was so foggy-headed on medication that I was always saying no to them having friends round for tea, or helping out with school things. I did what I could manage, I explained my pain to them in terms they could understand, and I really don't think it has affected them. )Of course they will probably tell me I'm the worst parent in the world when they become teenagers, but that's their job to do that and perfectly normal). Every now and again they will now actually ask if I'm OK and possibly even make me a cup of tea, and they are quite resiliant and matter of fact about illness, so I think that's a good thing that's come out of the pain.
Can you tell your wife how you feel? I rarely talked about the pain with my other half, and it wasn't until I started to discuss it that he began to realise just how bad it was sometimes, and started to be more helpful.
You are doing really well to be putting the psychologist's strategies into practise - it takes a lot of effort to make those changes. It's natural to find you can't keep it up all the time. Hang on in there, and talk to the psychologist about your worries at your next appointment.
Hello
BOB here
There is no point trying to hide what you are, children are more astute then many adults realize. The English stiff upper lip has long gone as far as i am concerned. You need not become a bore to all in sundry, After a while BE YOURSELF
Depending on how old the child is pain can be explained in may ways that a child will understand. The psychologist will help regarding this
To hide pain when really bad can in ways make it worse for you, then it becomes more of a trail for the rest of the family, you do not need to keep going on about it just if someone asks say I am feeling tired etc. To go into another room and hide away will just make you feel beholding to the condition this will make you look more of a slave to it,.
Remember your pain is in all intents and purposes YOU. it is no good hiding it.
Try and arrange for types of aid that is going to help you, make life easy so you can control you problems and make life easier. Treatments actions relaxation techniques will help you, Some techniques are better than others, for example the Maxwell Technique is more advantages then the Alexander Technique for life in a cluttered child environment, the phsycologist may be able to help here and may be able to arrange for you too see a Mental Health Phsio who will guide you through this alternative method that can be practiced in a cluttered children environment.
To make you feel good about yourself is the most important thing that needs to be brought out and they will help you do this by different methods and practices
Pain Clinics also may be able too help, I am not sure, have you been on one of these in the past
It is important that you be yourself and keep a hold of who you are DO NOT BECOME A SLAVE TO YOUR CONDITION
I can give the other side of being a CP sufferer as the wife and carer.
It is often hard for us to watch someone we love suffer so much and be able to do very little. I have always involved myself with all aspects of David's pain treatment - his choice and it has helped me understand so much more.
Anyone who has any disability finds adjustment hard and often family members do not understand. It is a huge adjustment for those you love as much as yourself.
Finding a fine between doing things for you to help ease your pain and wrapping you in coton wool and letting you do nothing.
Never be ashamed or walk away. You will feel guilty enough that you are unable to contribute as the 'mam' of the house without beating yourself up not wanting to upset your family.
Children are adults in smaller clothes and do understand far more than we reaslise. And they don#t have the fear that we experience.
Our children are grown up now and they take it for granted how david is.
And we still have rare times to get out to the seaside or somewhere special. We laugh, we cry and we share whatever we can together. Just like any other family really except we have an extra in out lives. Chronic Pain who insists are joining in everything whether asked or not.
Thanks all for your answers. Nice to hear others have been there too; I will sit down with them and have a chat to let them know how I am feeling and see how it goes. Have 3 kids all under 10 so was worried I may impact on them, but may be you are right and they are more resiliant than I give them credit for - they are amazing kids.
In response to a couple of points, I have been to several physios/therapies and pain clinics and have been advised my current excercises and techniques are appropriate as well as having balanced (although max dosage) medication. I have never heard of the Maxwell or Alexander techniques though so will read up on those and speak to my GP, thanks for that. I will also talk all this through with my chronic pain psychologist in a couple of weeks.
Had a really bad day yesterday so had felt the need to post.... although the tennis cheered me up a lot (come on Murray!!!). Thanks for your kind and frank help/advice/suggestions..... its nice to have people to turn to that understand
"Recently I have become more and more concerned that painful moans, groans or screams tgat I let out are affecting my wife and kids."
Which is causing what. Is the medication you are on causing the problem. If you have been on medication for high doses for a long period of time you cannot reduce anything without side effects. There is something known as painkiller addiction.
You have injured areas very sensitive to muscle pressure. Tightening your muscles and applying pressure to these areas will increase your suffering. Try working on tracking what your muscles are doing and then try and reduce the tightening muscles if this is what is happening.
Try practising medication under a trained medicator. There should be buddhist groups in your area who could teach you meditation and enable you to practise with them. Practice Mindfulness and study and observe what you are doing in the now and experiment with what makes things worse and what improves your situation. Mindfulness is a Buddhist practices with a 2500 year pedigree.
Regarding your meds, be aware of hyperalgesia. If you are not aware of it, its where you actually feel more pain on the meds. For example when I was on MST I got very bad muscle pain, different to my normal pain and felt like I'd been in a gym for 10 hours. Have you tried reducing your meds, slowly to see if it helps? My kids have been raised with me being in pain so include them in it, for example getting them to help pick things up. I also joke about it and sing, 'my back is killing me, I bloody hurt'! It's my way of cursing the pain without freaking the kids out.
My girls were very young 6 & 8 when my pain became constant. We developed a strategy of quite time when the pain was bad. we had special DVDs that they watched and special snacks for them. Sometimes they would say I wish you were sore so we can watch a DVD and have some cookies.
My husband would leave for work at 6am, so we had a breakfast reading club in my bed, designed to keep me awake long to get them off to school, but helped my younger daughter immensely with her reading. It meant I could rest my body a bit longer and we would all have different books and take turns reading wee bits from them.
I had happy helpers to help with the housework and we played games while doing it (pick up all the blue things, I spy something red etc).
They never thought they caused the pain and I'd take them to the alternative therapists so they could see what was happening to me and saw how it helped me. They called me grumpy mum. I gave my pains names so we weren't talking directly about the pain making it less scary for them.
My husband and our families did all the physical things I did all the home based things like baking, gardening, bug hunting, crafts.
They are now 17 & 19 and have well placed compassion and insight into others. They understand that when someone is grumpy its generally something going on in that persons life and nothing to do with them.
Maybe some breathing/meditation may help. Theres a good one you can involve them with. Breath in through your nose and out through your mouth, count the length of the in breath and match the out breath. Repeat a few times and keep increasing the in and out breaths by 1, waiting until you are comfortable until you increase again. This slowly makes you use all your lung and you will be breathing with your tummy too. Its a good way to relax and its a good skill to teach children.
May also be worth chatting to their teachers as many home issues pop up in school, as much detail as you want but enough so that the teachers can watch for any signs of anxiety/behaviour issues. They may be able to do some work around some of the problems in class.
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