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Rank: Advanced Member  Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Thanks Julie. The tank full of drugs are taking their toll, my mouth feels like the bottom of a bird cage - all taste completely destroyed  Today my wrists have started misbehaving, I know I should wear my splints - but I do forget and regret it later. The OT was giving me tips on how to get further help with my husband, I do appreciate her caring, she is lovely women whom I enjoy immensely meeting with. What she doesn't realise is that my husband following his stroke and his dementia can be very, very difficult, and like most of us wont be 'pushed' around. She is correct though when she says that he should be persuaded because really it's for me, I need the help. I've managed to get him on a weekly communication group, they are even providing the transport ( that is fantastic) meaning for once I wont have to drive him there and back - sadly his reaction was very negative. I am becoming aware just how energy he is draining out of me, that is probably one of the reasons I'm slowly disappearing physically. The part of the brain that is damaged (frontal lobe) is associated with motivation among other actions, he is therefore just not interested in doing anything. Some days I just wish I wouldn't wake up, even friends with all their good intentions take what little energy I have. Gogs xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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Gogs i feel so upset when i read your posts,
i wish there was more we could offer in the way of support,
it's awful to think you're having such a battle and it must be heartbreaking to see your husband decline. no wonder you are mentally and physically drained and losing weight.
i know you said you have good neighbours, do you have family near you? feel you are in need of some close support, or a close friend? i know exactly who to phone in my time's of troubles ( Hubby is fantastic for me fortunately ) but my best friends are worth so much to me and it's so good to be able to pick up the phone and not have to explain yourself cos they know exactly how you.
do post and let us know how things are going on, i know we can't offer much but it's good to offload and know someone's about here.
take care,
Suzanne x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Totally agree Susanne.
Lots of love Anne
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Gogs - just wanted to say thinking of you and hope things improve to give you a break soon.
I know it;s not the same with a parents as a spouse, but I rang Social Services in October and said I simply couldn't cope any more with my Dad, who is 85 and had been drinking continuously for weeks and was moving house too. The combination of RA, stress with sorting his move, exhaustion from dealing with him and sadness and the loss of my Mum and their home was too much. I didn't think I would ever have the nerve to say " I cannot cope" but when I did, there were people to support, both short term to give me a break and long term to help him get better.
I hope you have good friends who can help you Gogs. Don't feel bad about saying what you need too. So sorry you are having such a bad time xx Ailsa
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Thank you Ailsa, your comments are really helpful and supportive.
I have today decided to stop all medication except for the steroids which will have to be slowly tailed off.
I have also written to both consultants (RA and Chest) and advised them of my decision to stop all treatment.
When I looked at the amount of treatment I was on this morning, some are even to protect me from the drugs themselves!!! What nonsense,
I couldn't go on with this farce, it's like a pantomime.
Today I asked my husband though feeble and very shuffling, to help me with a box I had collected from M&S. I had no idea of the weight of it as
they had put it in the car for me. It was a large floor lamp with a marble base and it weighed a ton. In the process of getting up the steps - we have three at the front
of our house, he slipped pushing the box into my stomach which then knocked me off the steps and into the car once again giving me a bruise.
We struggled into the house, after much difficulty I assembled it (he couldn't), then I found out it was broken - I cried, I don't have this kind of energy and there's no one
else. I just couldn't cope as I don't have the physical capacity for these things. I did later phone M&S and they have agreed to collect it later this week.
Driving to collect it and bring it home, then all the effort of assembling it, it took the best part of five hours -and that is just because of trying to purchase a new floor lamp.
Gogs
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Rank: Advanced Member  Groups: Registered
Joined: 7/2/2013 Posts: 41
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I am so sorry for what you are going through, as said before it would be great to be able to offer our support in the practical ways you need.
I hope you find some relief and peace and send you big gentle hugs xxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Dear Gogs,
I don't know what drugs you are on but I would caution stopping or reducing doses without medical advice.
Coming off drugs can cause even more trouble . I understand totally your reasons and they have to respect wishes.your .Please talk to your pharmacist at least.
Some of us (me included) have tried with disasterous results.
Love Anne
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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[color=blue][/colo
Dear Gogs,
I was so sorry to read abut your lovely lamp!
Do you have any strong neighbours who could help out with tasks
like carrying heavy items from the car, assembling them, etc?
Because I know just what you mean about physical weakness,
I experience it too and it is so frustrating!
Thank goodness you did not get more hurt than you did when
you fell off the step.
I am reasonably fortunate that I have two sons in their 30's who
can help, when I see them, with emptying the bin, etc or washing up.
They even cook which is great.
I ask them to stay overnight quite a bit and recently the eldest one cleaned
the bathroom sink for me and I had not asked him to. I felt amazed because
it was so thougtful of him.
I have a daughter in her 30's too, but she only lives 5 minutes away and never
calls over anymore.
She always hated it if I ever got sick when she was a child and that does not
seem to have changed.
I hope that you do manage to find people in your neighbourhood to help out.
Is there a local Volunteer service near you?
Becase I have been wondering about that where I live.
I could do with a volunteer too!
I have had R.A for about 18 years or so and I am now nearly 57 and I definately
need more help around the house etc. now than I did years ago.
My right hand has developed quite bad ulnar drift and is not really up to much now and the
more I use it the worse the drifting and the nodules get!
I usually feel better in the Summer months but the Winter is not my friend in Britain.
Also does your husband have any friends living neaby who would have him over for an hour or so to
give you a break? My Mum did this for the wife of a neighbour for a couple of years to help out
the husband.
Anway, best of wishes to you and please keep posting.
Fiona
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Thanks Fiona and Anne, your support is appreciated.
I know I'm not really rational now but I've reached a very low point. I don't want any more drugs, hospitals, bloods, doctors,
nurses, therapists of any kind. I don't want any more appointments to go anywhere, I think I would rather just slowly fade away
because I can't live this life I have been given. I hate it with a passion, I want it destroyed, I want the life I had.
I don't know or really care what will happen to me, what I have is not worth having, who's knows, whats to come might be better.
Gogs
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2013 Posts: 144 Location: Dumfries
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Dearest gogs
l am so sorry to hear you feeling like this as you sound in such a low frame of mind.
l wonder if you can get pick up the phone to get some friendly voice who will tell you to hang on in there. Of course it is your choice to stop taking the meds but you need to find some respite for yourself. Please check back in with us all tomorrow as l am sure i speak for us all when l say we rely on each other here and care about each other
we are all here to.listen and help.
Lisa x
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Rank: Member  Groups: Registered
Joined: 12/4/2009 Posts: 28
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Gogs, You sound severely depressed, and when I read your posts my heart aches for you. There is an NHS website devoted to carers, with lots of links and information and a telephone helpline which will put you in touch with help for carers in your area. There are many organisations which provide this. Be frank with them about how you are feeling. The "you are not alone" page with the helpline number is here: http://www.nhs.uk/Carers...ges/Youarenotalone.aspx
The home page for NHS Carers help is this: http://www.nhs.uk/Carers...es/Carersliveshome.aspx
The helpline number is: Call Carers Direct on 0300 123 1053
Confidential information and advice for carers.
Lines are open 9am to 8pm Monday to Friday (except bank holidays), 11am to 4pm at weekends. There are forums and support groups for people trying to cope with caring which you can access from the pages above. This may be a start, for help with your husband, which you desperately need, as your own health is clearly being profoundly affected. Helen
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Dear Helen and everyone,
Thank you so much for all the help and advice you have given me. The links I will look at tomorrow when I have a little more energy again.
I'm not sure who contacted the NRAS help desk about me - THANK YOU SO MUCH!!! I did phone and spoke for a very long
time with someone who was really lovely (sadly I cannot remember her name), she too has given me plenty of advice about getting support.
I have already contacted one carer's group in my area and left a message for them to get back to me. This all takes so much energy, the
very thing I'm grossly short of.
I have this morning restarted my medication, it was the act of a desperate women, I just wanted to run away from it all, but the illness is
like a Leech - it wont let go regardless.
I'm still not in a good place, I've hit rock bottom, but I will act on the advice I'm being given and will continue to keep you posted.
Much love to all of you
Gogs xxx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Thinking of you today Gogs and hoping you have had some quieter moments to yourself. I know how much energy it takes up sorting out support and I really hope there is something out there for you to make the days a little easier to bear. x Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Dear Gogs, Everyone here is thinking of you and pulling for you - and will continue to do so. When you hit rock bottom the only way is up. I couldn't stop thinking about you last night, so I'm glad there are some avenues for you to explore when you have a bit more energy. One day at a time. Thoughts and prayers, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 9/15/2013 Posts: 125
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hi Gogs
As Kathleen says the only way is up from where you are at the moment and I know I am not alone in saying you have been so much on my mind and we all feel so desperate for you Hopefully you will have that little bit more energy tomorrow to enable you to check out those links and get some more support sorted out for both you and your husband You both desperately need a lot of help and TLC at the moment
I'm so glad you have started back on your medication again - that was worrying though I can understand where you were coming from on that score.
take care Gogs
Sending hugs
Julie x
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Gogs,
another one here who has been thinking of you, am so pleased you have been able to talk to someone, i posted that above somewhere i felt that would help.
and so pleased to hear you are back on your meds .. Kathleen is so right the only way is up, and there is life with RA.
we are all here to listen, so please look in and tell us day to day how things are,
take care
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Oh Gogs. We all feel for you. Your story of the lamp resonates with many of us I suspect - they way that things that were so normal become unattainable. I have little to offer other than moral support, I do hope though that you have taken others' advice about stopping meds without your doctor's knowledge. Some of them may require staged withdrawal. But it's your decision, 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: Newbie
Groups: Registered
Joined: 12/10/2009
Posts: 2
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Dear Gogs, Just to say I am thinking of you, I have recently rejoined again and so glad I have as there is always support and advise and a good place to let things out. I know at times you feel as though the world is against you and you feel you have nothing left BUT YOU HAVE, you may not feel like it now but your days will brighten , there are people who care and I certainly do, hope you get the help with your husband, take care xxx 
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Rank: Newbie
Groups: Registered
Joined: 12/10/2009
Posts: 2
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Dear Gogs, Just to say I am thinking of you, I have recently rejoined again and so glad I have as there is always support and advise and a good place to let things out. I know at times you feel as though the world is against you and you feel you have nothing left BUT YOU HAVE, you may not feel like it now but your days will brighten , there are people who care and I certainly do, hope you get the help with your husband, take care xxx
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi everyone,
Thanks again Helen for the links which I looked at this morning. There's a of information there but it
will take me some time to read and understand what might be helpful for me.
I did a questionnaire asking about my needs and printed off the assessment as it had interpreted it to take to my GP on 24th of this month.
I also spoke with someone yesterday, but I can't remember who, where or what we talked about. I think she's going to contact people for me
but I don't know who they might be.
I feel as if I've fallen a very long way down somewhere and I'm overwhelmed. Strangely when a doggie walker friend called yesterday to
tell me her husband had just died, my reaction was of someone I knew well yet it didn't feel like me. I offered my help and services to her,
to look after her dog, invited her in, please stay and eat with us etc. She told me I was the kindest most generous person she'd ever met, I've
had that said twice this week when another person wrote to me and said I was the kindest person ever - I don't know that person - is it me?
How can I be so wonderful and be in such a mess. How stupid can you be to write and tell your con/doc that you don't want their services any more?
How will they respond to that?
Gogs xx
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