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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:
My husband is another person, he's more introverted, selfish and stubborn, he gets into tantrums and angry outbursts due to
confusion. Most of the time his perception is so distorted he really hasn't a clue what I'm trying to say.
Gogs
It's so sad to see what dementia does. My Mum suffered for years - had no idea who we were. It was almost as if the Mum we had known had died, 15 years before she actually did. You end up grieving for the person you are losing as they slip away from you. It's hard and another burden for you at an already bad time How are you today Gogs? Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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BTW, it's great to see that despite your troubles you have time to post replies to others.  Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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I agree Paul - as one who appreciates Gogs' replies and encouragement. I so understand your resentment as I am like that with Dad - moreso as his distress, depression and anxiety are so wilfully made worse by a bottle of neat vodka each day.
Would you feel guilty if your husband went to respite care maybe once in a while? He won't like it much, but it won't do any harm and it might just do you some good to have a break and something to look forward to. Wish we could all chip in and help you out so you could find a chance to catch your breath. Thinking of you x Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Thinking of you Gogs,
You are such a lovely, open honest lady.
Xxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Thanks for your helpful sentiments, they are appreciated.
I am now beginning to get snowed under with all these 'help the carers' people. This mornings, lovely and sweet as she was,
she just seemed to 'enjoy' talking to me so much that I had to make the move for her to go. In a very weird way this is just as
stressful. I've got someone else coming tomorrow and I don't really want any more.
I'm now waiting to hear from the hospital but am unaware what urgent constitutes.
Thanks again,
Gogs
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hopefully things will even out re the care help, reminds me in the "old days" when we had milk bottles delivered every morning, well probably some of you still do, anyway the saying was when someone had outstayed their welcome you made your move and put the milk bottle's out .. lol,
hope you hear from the hospital soon and that you are coping with day to day at the moment.
take care
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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I had a phone call from my consultant today, she is to speak with a neurosurgeon about my neck - so I'm hopeful, and hopeful it won't be too long a wait because I would have preferred it yesterday!  My mood is still very labile, it can go ferociously low very quickly. She asked me to try and eat more which I did at lunchtime, but that final third was so difficult to eat it's put me off eating anything now. I can eat only so much then I am overwhelmed. I did plateau for a while and thought it had stabilised, but even though it's slowed down it is still reducing. I phoned physio and discussed what I should now do, they said if there was no further improvement then I might as well wait until after I've seen the specialist. Gogs I've just read what I've written - golly what a chirpy chappie I am!!!
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Hi Gogs If you are having trouble eating might I suggest (if you are not already doing so) setting aside any healthy eating ideas and spoil yourself. There's a lot to be said for treating yourself to some naughty stuff! Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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agree with Paul here,
if you are unable to finish a meal, can you indulge yourself. something i can't do for fear of putting on weight which i can do quickly.
any extra calories you fancy just might get your weight up without feeling you have to try and finish a meal to do it.
have a bowl with things you like in, could be fruit, choccies, the list is endless .. you may feel more tempted to eat than being confronted with a bigger meal.
just a thought,
sorry the low point is still hitting you hard, i really do applaud you for carrying on as you are, others would have fallen at the first fence. you have some spirit in you .. try and be kind to yourself.
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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suzanne_p wrote:agree with Paul here,
if you are unable to finish a meal, can you indulge yourself. something i can't do for fear of putting on weight which i can do quickly.
any extra calories you fancy just might get your weight up without feeling you have to try and finish a meal to do it.
have a bowl with things you like in, could be fruit, choccies, the list is endless .. you may feel more tempted to eat than being confronted with a bigger meal.
just a thought,
sorry the low point is still hitting you hard, i really do applaud you for carrying on as you are, others would have fallen at the first fence. you have some spirit in you .. try and be kind to yourself.
Suzanne x Or how about a tub of premium ice-cream?  Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Suzanne and Paul you are like my two monster angels  I do have a large pot of olives in the fridge which I graze on most of the day - heavenly and yes, there are many vegan treats about but I've never really been keen on sweet stuff although I do have a fetish for dark chocolate  . I know there are a lot of people about who would love to have my relationship to food - but they wouldn't like what they would see  I kept passing mirrors while shopping in Kendals yesterday, I would look at this tiny emaciated women as if she were the third person, it was strange, I really felt so sorry for this woman who was really me!!! That's the start of insanity  Thanks Suzanne for recognising that somewhere inside of me there is still a strong fighting spirit, that problem with that is it can turn in on itself and start trying to destroy itself. The pains in my wrists and fingers are quite bad tonight so much so that I am finally wearing the gloves OT gave me, and surprise, surprise, they are helping  Gogs xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/15/2013 Posts: 125
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Hi Gogs
You are as everyone has said, an amazing woman!
I feel so sad at your situation and then suddenly you can make me laugh out-loud at your sense of humour! You may not feel like you have a sense of humour but it is still buried in there somewhere!
Mirrors in shopping centres should definitely be BANNED. I have seen a very strange looking woman looking back at me sometimes too and wondered who she is !
I hope your pain is not too bad today and that you are not feeling too low. We are all still with you!
Love Julie x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 185 Location: Lowestoft, Suffolk
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Hi Gogs My current weakness is Pistachio Nuts which would be great for you (bad for me)! They have them loose in Lidl and are just glorious. I just mention it as I believe olives are quite salty as are these nuts. I smirked at your comment about the carer going on and on. They're supposed to be there to help you but can go over the top thinking that's what you need when inside you're screaming 'bog off', or words to that effect. Now, the OT gloves. I'm pretty sure they're supposed to be worn to prevent the pain and not just for when it's out of hand. I can't talk though, only wear my resting splints (in bed) when my hands are really bad. Not the easist thing to sleep in. Keep fighting, keep the humour and finally, 'Keep Calm and Carry On Posting' - we need to get you a mug with that on. Angie. x Be yourself - everyone else is taken. XX
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Good Lord, I thought I'd been hit by a sledge hammer this morning - talk about flare. I thought they used flares to summon help but when I have one there's nobody ever around to help me! Well having ridden the steroid escalator for so long I didn't need any advice, I just tripled the steroid dose and now, 15.30hrs it's all manageable again - not pain free! I had also been given to understand that Tesco will help you if you ask - I did and I did (eventually) get some help this morning, most were very helpful in trying to locate someone for me but it was like looking for hens teeth! The lady I got was very pleasant but made sure I knew she was on steroids for Fibromyalgia and that while she was helping me she had to leave her own job and it would mean she would have to work harder when she restarted - hey ho! I just loved the 'bog off' that's exactly what I was feeling. Of interest - my mood is fairly up beat today - just thought, it must be the effects of steroids - that's the answer I'll take a bucket full each morning and be as high as a kite Gogs xx
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Sounds like you're having a sort of 'all four seasons in one day' kind of day. Glad to hear you're feeling a bit more upbeat today, even if it is steroid induced. I hope you can sleep OK tonight (high doses give me nightmares). Are you taking lanzoprazole or something similar to protect your stomach? Steroids can cause gastritis but you're an old hand so I guess you know that..... Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi Paul, I'm still 'high' and definitely not really for sleep yet! Gastritis!!!! bring it on I can't get enough problems Gogs x
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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gogs wrote:Hi Paul, I'm still 'high' and definitely not really for sleep yet! Gastritis!!!! bring it on I can't get enough problems Gogs x Ah yes ...... The insomnia..... the next great side effect of steroids Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member  Groups: Registered
Joined: 3/29/2013 Posts: 106 Location: Surrey
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Hi Gogs, I've been following your post and are pleased your starting to get the help your truly need. I feel a little inexperienced to offer advise but sending you hugs I know before I was diagnosed I was at rock bottom but didn't realise until I had medication, help and support which dug me out of my hole I was in. A little T.L.C and I'm sure your be in a better place soon Louise.
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Thanks Louise, I really appreciate your input.The past couple of days I've been on 20mg Prednisolone daily for my mega flare to add insult to injury, the up side of this is steroids can make you 'high' and that's what they have done for me Hope your holiday(s) are a great success. Gogs x
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Rank: Advanced Member Groups: Registered
Joined: 3/29/2013 Posts: 106 Location: Surrey
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