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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 31
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Hi Cazza here i have not been on for ages as have been very poorly.I have now been diagnosed with Fibromyalgia as well as RA and i am in so much pain i dont know what to do with myself such as tonight every part of my body is sore to touch i have even got pressure points all over my scalp.My fibro affects my brain ad causes me to have blackouts it also affects my bladder so i have to be cathherterised thats not nice.I am waiting to see the pain team hopefully next month,i have got an appointment with the urology team and they are going to show me how to self catherterise myself.My main problem is my Husband he has had to take over my role childcare etc as i cant do anything somedays i am bedridden due to the pain but he thinks i am being lazy and now my 13 yr old daughter is calling me lazy and get out of bed and be a proper mum this makes me feel awful and useless i also have a 3 yr old he just climbs on my bed for cuddles but he is also rejecting me in favour or daddy because i cant do anything for him.I JUST DONT KNOW WHAT TO DO HELP 
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 176
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Oh Cazza. You sound in so much pain and discomfort. Hang on in there. As to hubby and teenager - they are probably both very scared for you, and saying all the wrong things rather than seeing how bad you feel. I do hope that the Pain Team mean the early part of the month - let them know how bad you are feeling.
Little story - I was recovering from a serious back operation, and asked my 13 yr old to load the washing machine with the clothes in the basket. 10 mins later, I waddled out there to see R sitting in front of the machine, and using my 'grabber', loading the machine with the clothes. I asked what the heck he was doing, and his reply was "Proving you could do it if you really wanted to" He would not, and did not, think that perhaps I would not recover. We all react in different ways.
I do hope you did get some sleep - keep writing on here.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Morning Cazza
I do think you need some physical medical support but also I think that you MUST get some care in.
I have direct payments through social services, it does NOT depend on getting DLA or anything else, just a genuine need, even if you work it does not count savings do count though but only after £6000 and then it doesnt count for much.
Anyway, I get 24 hrs a wk and have just asked for another 15 and I now employ 3 people to help me be an independant mum. they wash me, help me around the house, set me up with Bernice to do play dough at the table and help pick up the bits and chase a jubilant 2 yr old as she scuttles about.
I do "hold court" from my bed sometimes and my son and other daughter really like it as the sit beside me and just chat through their days etc. When they were small we had reading time together there etc.
Your daughter and Husband need to be booked in to see your rheumatology nurse and they need it explained in words of one syllable that you need their total support. I dont know if you have come across the spoon theory but it is here spoon theory print it off and sit hubby and daughter down and read it to them.
pain relief- there is ALOT that can be done. I take zomorph which is slow release morphine and also nortryptalin and gabapentin at night. i have oramorph if I am in agony.
much love to you. see a gp today and get some decent pain relief.
love
jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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As always, Jenni is spot on. Please take her advice on board.
I am so very sorry you are having such a tough time and pray that things will soon improve for you.
We're always here for you.
Much love,
Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Morning Cazza
I have be wondering how life has been for you, since your posts the other week. Jenni has given you all the advice you need, and thank goodness for that. Hope you can get the ball rolling straight away, you can not carry on in this situation for a moment longer, hope things improve very very soon.
Sending my love Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Cazza,
So sorry to hear how things are for you.
PLEASE take Jenni's advice and get some care in. It doesn't all have to fall on your husband and daughter.
Jenni is also right that things need to be explained to them so that they know how to help you.
Hope you can get some help with this soon.
Love and hugs, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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hello Cazza good see you posting not good see your in suc awful pain do see gp asap,also care plan to help so your able do a bit jenis advice top notch. i have no exp of getting care n only that it would take some load off hubby,i have had to sit my spouse down couple times to explain things when he sees it as lazy. work in progress. gentle hugsmy love take care. lv melly  cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello , So sorry to hear that you have been is such awful pain and your Husband is not the best at not understanding how
you feel. A lot of men are like this but as you have young children you certainly need 'back up'
Good advice ny Jenni please see you GP, take care
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Cazza, Sorry to hear you are so poorly, like Jenni says there is so much you can get to help you, definitely look into it get a doctor out if you can't get out to one. Your family need educated on your condition, there is nothing worse than looking good and feeling like your in agony on the inside. My daughter played up more when I was ill, now I think it was her way of dealing with it. They understand more now and help when I ask them. Hope this finds you a little better today, Lorna xx
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Cazza,
I feel so dreadful for you. It sounds like the fibro is really taking a hold on you and the cathertising and pain must be very unpleasant. I think it sometimes takes those around us the longest time to come around to the realities of our RA. If they realised what you were actually going through and how severe the problem is, I suspect they may react differently. I agree that a talk for the family with the Rheummy nurse is an excellent idea.
Please don't see yourself as less of a mother ... you are doing the best you can. You've spent many years caring for and nurturing your family .... and families are there to support each other .... don't feel guilty that it's your turn for a bit now.
You're in my thoughts x x x
Joanna
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Hello Cazza, I hope that you are able to take Jenni's advice and get the help that you need and that you can get some better pain relief. I think the only ones to truly understand how it feels to have RA are the people that have it. Glenys.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Cazza So sorry to hear about the additional problems you are having. Hope things go well with the pain team and you are able to get suitable relief. It really zaps your physical strength and mental abilities when you lose sleep. It also leaves you vulnerable to situations that normally you would be able to handle. Sleep, we all need it! Jenni has fab advice so do consider the options that may be available. Try not to worry about family, much as it hurts at the time, they will be confused and frightened about what's happening to you. Things will improve, they really will. Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi There
My heart really goes out to you
Sendng you lots of hugs and love
Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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How utterley heart wrenching that kids don't understand on top of all the pain you have anyway. Sorry to repeat but please take Jenni's advice and seek extra help. It would mean that what little energy you do have on good days can be spent with your children. Will be thinking of you.
Julie
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Rank: Member
Groups: Registered
Joined: 6/14/2010
Posts: 23
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Hi Cazza
I'm new to all this, but have been thinking about your situation. I hope you/someone on your behalf (if no one else will, I will) has been on the phone getting you support as outlined by Jenni. You need it now and should get it.
As for your family: you are a team and one of you needs help, love and support right now - you probably have given it in bucket loads to the rest when they've needed it. It's your turn. It can be frustrating for everyone, but they have got to realise you need your strength for calming down your conditions - which would takes ALL that you can muster - right now, it doesn't leave much energy for dealing with anything other than positive things.
This can be done in a heartbeat. I hope it is.
very best wishes
John
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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HI Cazza
I'm sorry you're still feeling so poorly. i can't really add anything, but wanted to show my support, and hope you're able to take up some of the advice given.
Don't hesitate to post on here any time.
Lyn
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Cazza
How have you been, I haven t noticed you posting and remember you going through a very difficult time earlier this year.
I really hope their has been improvement for you in recent months, be good to hear from you.
Love Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 327
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Julia, it looks as though Cazza hasn't posted since this one. I do hope she's okay, she was really going through it, wasn't she?
Anthea x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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I've often wondered about her, she was suffering so much when she posted last, thought when I saw this thread that she was posting again but obviously she isn't. I do wonder about people that use to come on here and then suddenly stop posting, hoping that everything is OK for them and that they don't feel the need to come on here anymore. I do hope that thats the reason with Cazza.
If I remember she was having such terrible problems with everything and was really feeling down. Last time when she stopped posting, I'm sure that someone contacted NRAS and they phoned her just to see how she was. Wonder if we asked them they would do it again, just to let her know that we are all still thinking of her.
Paula
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Thanks Anthea and Paula for your messages.
If we are still in the dark about Cazza over the weekend I ll give NRAS a call on Monday, thanks for that thought Paula.
Hope you both have a nice weekend.
Julia x
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