Every time I stand up, perhaps walk to bathroom and back, sit down - oh heck here we go again! Spasm starts at the bottom of my back and builds and spreads up as far as my neck and will gradually subside. Last week gp started me back on to prednisolone (steroids) 'cause arthritis flair back in hands/feet., quite severe. On permanent oxygen, but feel a bit chesty, 1st time in 18 months.
My imagination is running wild, feel exhausted all the time. I get so scared sometimes.On the 1 hand, dont want to worry anyone not least because will turn out to be nothing. Would feel a fool, a nuisance. At the same time I just want someone to come and see me, read what is on my mind, but then I'm feeling resentful 'cause of course they cant!
I wish I could work this out.
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tulips123
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That's powerful, but involves honesty. My family dont have any idea just how bad things are. Mainly because I try to portray someone who has problems, but I'm a coper. I am here to help them, listen to their worries and try to advise. Makes me feel valued, needed. Reason to be alive.
Tulips my GP put me on predisnolone for arthritis flare it was horrible for me I had palpatations every time I stood up and eventually that led to panic attacks..... If you don't feel right and you know your body .. Get your GP to come out or get to see then if they won't ...
If you are on permanent oxygen and still feel chesty, your oxygen levels might be a bit low, and that will make you feel anxious, irritable and frightened.
The pain is a separate issue, but if you felt more comfortable with your breathing I'm sure you would cope a lot better.
I understand how you feel, I suffer spasms throughout my body and i have terrible Fibro pain that hits me all over . My family have no idea about how bad it is for me , and i often feel angry at them because i feel if it was the other way around i would be there for my daughter . My husband is my full time carer but he has no-one to fall back on to give him a rest, i feel this should be up to my daughter but hey-ho
I wish you well and hope that you find a solution to help you
my gp has been - she is the best - changed some meds and talking to consultant about urgent appointment. cant ask for more than that!
I think families are one huge emotional minefield of trouble. My name is Mum. I do the caring. Trouble with that? My health is so unpredictable, yesterday I may have seemed on good form, but I could feel things beginning to slide. Then I get a call looking for help, advice etc. which is something i encourage, it makes me feel good, useful. Only I cant do it! Wiped out, horrendous pain. Leave me alone! I keep quiet. They know something has gone wrong. We do this pointless little dance, are we ok? Yes of course! No of course not!
If this rings a bell with you and your family, I wonder if your nearest and dearest have given up trying to work it out. It's wrong that everything is falling on your hubby, and you should not be left feeling guilty and resentful when daughter doesn't seem to care enough to help out from time to time. This is a complex conumdrum and I'm not even sure there is an answer. 1 day at a time.
Kira 1 of my daughters says im lying won't accept it at all I even lost all my hair to alapecia she said I shaved it all because im not fit enough to watch my 15month grandson it kills me kids can be so selfish U do everything for them n now im I'll were are they my fella is my full time carer who also has just had 2 heart attacks , I hope U av great friends like I do xx
Hi Donna, I got my husband to shave off all my hair too, its was black and way down my back ( my pride and joy) I now own 5 human hair wigs which when i'm up to it , i wear . My husband is my full time carer too. He is a Hatta yoga instructor, has dedicated over 17yrs to yoga and now has had to give up to look after me , i feel very guilty, even although he says it was his choice . I have given up with my daughter . Even carers services can't really help as all they suggest is that i go into a home for respite so to give him a break , he won't do that .
Families eh , especially daughters !! but we get on somehow , and we manage pretty well with only the occasional break down, when i am really bad and poor Colin feels he isn't doing enough for me and he feels helpless. I tell him he is better than any paid carer and try to reassure him .
Take care , life isn't easy but as Tulip123 says 'one day at a time'
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Give me a break. 
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