Hello my lovely Fibromite Family. Gentle hugs to one and all.
I've been really going through it lately. Mr Fibro - as always - never lets up on me and I spend most of my days - morning, afternoons and evenings zzzzing. Mostly to escape the pain - and to escape my life as it is.
I've been a strong woman all my adult life - I've had to be - I've always helped others but I've never asked for - nor accepted offers of - help from anyone at all. But desperate times call for desperate measures as they say - and finally - as I said on another Fibromites blog - it came up in a roundabout way - that I was going to get in touch with, and ask, the Social Services for help in getting back to where I used to live to be nearer my daughter so that she will be able to help me should I need her too - I explained the reasons why I need to move back home, after moving here a tad over 3 years ago and that it was a waste of time - as I mentioned to everyone here before - I'm just so unhappy and stressed out day in day out being here by myself -I just want to go back home. Well, I rang the SS, and as they answered I broke down and told them my predicament - and about my health issues and why the need to get away from here. The lady was really nice - but apart from giving me the number for Housing Advice Office and then she told me to get my GP to write a letter - She then told me that she was unable to help me unless I was unable to wash and dress myself - which I still am able to do - Just!
I know what will happen if I ring the Housing Advice people - I'll be fobbed off and passed from one section of the council to another - just as has been done to me before. As for getting my GP to write a letter? That's a laugh! There are many, many GP's in the surgery and not one of them gives a hoot am just part of their pay-cheque each month - just as we all are with our individual GP's.
As I type I feel more lost and alone and so depressed - and the tears just will not stop. Am not one for self pity usually, but I no longer care about myself "keeping up appearances" any more - I hurt and ache all over 24/7 and even though I sleep plenty - I wake up as unrefreshed and more tired than I did when I went to bed! And I can be awake just a half hour, before I crash and burn - and I can no longer keep my eyes open - and half hour/hour later I awake just to go through my day nodding off and sleeping half hour/hourly and being awake just an hour before it all starts over again. That's NOT living a life - it's EXISTING one! And even if I could - I cannot live my life as I could or as I should. As I'm typing the tears slowly dry and my eyes are drifting shut - In a few minutes I'll fall asleep with a "thunk" on my key board. I nod off anywhere any time - I've been like this a good year or so now - and the GP blames my meds, yet apart from having Pregabalin and Ropinirole added this past 2 months, my meds have been the same for years - I can only think the Vertigo I keep getting is part of the problem also - Oh, Lawdy! Even washing the dishes at the kitchen sink! I once fell asleep stood showering in the bathroom.
Well, those zzzz's are really gripping me hard so I'll leave it there at the moment - and give in to them. Thanks for listening to my moans. Am so glad you are all here - take care my lovelies,
Just out of Interest Carol , have you ever been tested for narcolepsy ?
Having said that , my H was prescribed Ropinirole for RSL and he stopped it because he found it was making him sleepy during the day , so it may be that causing it ( not sure if that's a listed side effect as he doesn't have them now ).
Other than that, it IS depressing having this damned illness . I think the majority of us feel the same way , and being away from family must be awful for you.
I think it is worth contacting social housing near your daughter , you can be put on any waiting list ( and more than one if necessary ) so you won't know til you try . Some authorities have application forms online which you can print off , so it doesn't necessarily mean a phone call.
Hugs
Helen xx
in reply to
Hey Helen, Gentle hugs and thanks for responding.
My daughter and I joke about my having Narcolepsy - but you are supposed to wake refreshed after a Narcoleptic sleep apparently - but with Mr Fibro being the pain he is - no doubt he's messing with me more!. Having said that I will check with one of the idiots at the surgery. I was like this before being put on the Ropinirole and before the Pregabalin. So worth looking into it. And tomorrow is another day for those phone calls and looking online for any sheets of forms to print off. This morning totally threw me and wiped me out. Thanks for caring so. We Fibromites must stand/double over in agony together!
Love,
Carol xx
in reply to
I have a cousin with narcolepsy and when he wakes from " naps " he's really groggy Carol. I'm not saying this is what you have, but may be worth a mention.
I'm really sorry your relationship with your daughter has been caused by housing difficulties. I think you know we are in a similar situation, 3 adults in a one bed bungalow , and with my husband working from home and having to use the lounge ( where my son sleeps at night ) , it puts a lot of strain on all of us . We are all always under each other's feet and nobody really has any space to call their own ....... apparently that isn't overcrowded in the eyes of the council though !
We're stuck in this ( hugely expensive ) area because my husband is also a part time carer for his disabled dad and his brother ( who is his dad's full time carer ) wouldn't be able to manage if we weren't just down the road.
Stress levels are rising rapidly here !
Hugs
xx
in reply to
I'll definitely check it out with my GP - and ask if it's Narcolepsy or sleep apnoea - which reminds me, is another thing my daughter said - I stop breathing sometimes whilst sleeping as well. Then choke myself awake.
We are all in such a pickle with the housing situation - pity you live so far - we could have swapped - you have my 3 bed semi and me your 1 bed bungalow!
Mind you living NEARER me I meant! Too expensive out your way!
i filled a housing form in so i could get a council bungalow , my gp sent a letter as well . But guess what i cant have a bungalow till i am 60 i am now 56 . i knoe someone who is in one who is 40 and they play 5 a side football . its wrong xx
Hey rosehip, gentle hugs.
I was told I didn't stand a chance at sheltered accommodation or a bungalow as like you, I'm not 60. I'm 50 and feel I'm fighting a losing battle with Cardiff City Council. From petitioning them about different things on behalf of my old neighbours - to nagging for years to rehouse me and my girls - we were still waiting almost 11 years - and too late to salvage my relationship with my eldest girl. I blame the council for the breakdown by leaving us cramped in a tiny 2 bed flat - things fell apart completely before I moved here as we then became 3 adults and not a single parent with 2 young children living in the flat - It became harder to get along and I lost my eldest completely - she walked out just before I was given the keys to this stupid house - and although I know where she is - we've not spoken - nor seen each other - in almost 3 and a half years.
There are too many on DLA etc. who are not deserving of the benefits yet get away scot free defrauding the benefits AND housing benefits - I know a few doing just that. Makes my blood boil!
hello cadee I am so sorry to hear you are so low I hope something will turn up for you it must be so hard for you I feel awful to day my hubby is on hoildays he cleaned all the windows in & out and something silly happen and I lost my temper said things I now regert like that normaly but in so much pain any way enough bout me please take care and good luck love beth xx
Hey Beth, gentle hugs. Thanks for your response. I've been lower than this and in a much darker place - but the fighter in me lately just has not the energy to fight on.
Despite your "something silly" that happened (I believe your frustration at not being as able bodied as you used to be - let the green-eye monster called jealousy rear it's head maybe?) - you are very lucky to have a hubby to do the windows etc. My whole house is a mess - windows too - Before Mr Fibro I kept a spotless home - With the state the place is in? Apart from my daughter, her hubby and their son, I won't let anyone visit me - I'm too ashamed of the place.
Am away to hide under my duvet now - I'm absolutely wiped out. I hope and pray all will be well with you and your husband Beth. Take care sweetie.
Hi cadie sorry to hear you are suffering so much. I am on pregablin and it doesn't make me tired any more than I already was I wonder are you on anti depressants they may help to lift your mood I know you will still have the same problems but you may feel more able to search out some help. Love to you sue x
I am on Venlafaxine - 150mg in the morning and 75mg at night. But for the first few years of taking Venlafaxine, I was only on 75mg at night - then a about 2 years ago asked to have them upped and that's the dosage I now take. To be honest Sue, I don't feel they are doing a full job of keeping the depression under any semblance of control. All in all, I've been on antidepressants of one kind or another for about 20 years now. I think of suicide on a daily basis - but I know I'll not act on those thoughts - my daughter and her hubby and their son keep me going. So I think I'll be getting them reviewed. Though I'm sick of seeing GP's who do not really give a toss about how the depression is - one would only see me for one "complaint" when I asked for a change of dosage - "let's get this Pregabalin sorted first" is what he said. I never get to see the same GP when I next need to go - and the ones I do say either turn a deaf ear to my request or talk over me as I'm making the request. It's like they are rushing me along so they can get their quota of patients seen that day to assure they'll be paid.
Dear Carol I feel sorry that you do not have a sympathetic gp mine is wonderful and helps me anyway he can and that makes such a diffence. I used to be on venlafaxin but it got changed a few years ago to citalopram I am like you suicidal thoughts a lot of the time but having my wonderful family stops me take good care of yourself sue xx
Before I moved to this awful house, I had a brilliant GP - she knew me well and like yours - would do anything for me. I miss her!
I was on Citalopram before the Venlafaxine - but instead of upping them I was put on the Vens instead. Though that was NOT my lovely GP as she was on 2 weeks holiday - it was a locum - and as we do - we accept what a doctor says or does for our health and benefit.
Am glad you have a great family to keep you from opting out of this horrid illness.
Be kind to yourself,
Love and gentle hugs,
Carol xx
I often have the same thoughts ( have had 2 attempts ) , sadly I've been unable to tolerate any of the anti depressants I've tried, so at present my depression is untreated .
Thankfully I don't spend much time alone these days as that's when I normally get the dark thoughts .
Anyone going through the horrible illness of depression has my deepest empathy .
xx
in reply to
I too have had 2 attempts - BEFORE becoming a mama. And a good reason for me getting away from here and the loneliness that is slowly eating away at me - is so that being nearer my Daughter and her Family - is so that I can not dwell constantly on the misery these thoughts cause - I am scared that the "loving thoughts" of my Daughter, SIL and my Grandson, evoke, whilst I am still in this house - will NOT be strong enough to prevent me from giving in to the darkness and the release it will bring me.
It must be hard for you, whether your family are around you or not, to keep the depression from drowning you as you cannot tolerate antidepressants. I'm so glad you aren't by yourself very much.
Am away to watch TV - as sitting in my room when I'm not sleepy will only get my mind running wild and unable to turn off. Night night Helen. Gentle hugs - I hope your aches and pains are few and you do manage to sleep some.
i know there isnt anything i can say to help you, but just wanted to send you loads of love and a gentle cuddle, i really hope things can improve for you soon, god bless, xxx
Thank you for your kind words and support. You cuddles and love are very welcome.
Love,
Carol xx
Carol, bless your heart! I could relate to a lot of what you said in your message. I think we have all felt really low at some time or other with Fibro because it seems so relentless doesn't it. Had it not been for my hubby and children I think I would've thrown the towel in during the first year. I still get times where I silently scream to myself with frustration, but it's at those times that I try to think of my blessings.
I am lucky, I don't suffer from depression, but I can imagine how hard that is to cope with on top of everything else. I am so pleased you felt you could pour your heart out in our forum, we are all here for you, as we are for each other. Rest assured we all understand, we're all in the same boat.
Please feel free to private message me any time if you feel the need, I am happy to hear from you any time at all.
Take care and keep counting those blessings! Hugs from me to you!
Hey Libby, gentle hugs.
I truly appreciate your comment and support. And I am especially appreciative of having this forum and all my Fibromite family here, so that I can pour my heart out to like minded - and like bodied - persons. Having everyone here "24/7" as it were, is a great help too. The kind words and support from everyone thus far, has been a great boost.
And after 3 hours of very broken, pain filled, self-pitying, tearful sleep - I'll be searching online about housing advice centres and any forms I can print off - Before I pluck up the courage to ring them and get into the nitty gritty of why I'm desperate for their help in moving back "home".
Awwww Thankees Bonnie Lass - I sincerely appreciate the offer - but I have to warn you - I've been known to talk the hind legs off a donkey! You might just regret making the offer of listening if I took you up on it!
I understand so much of what you have said and feel and send lots of gentle healing hugs your way. Like you said, many times wrong thoughts come into our heads, sometimes as we see it as the only way to cope withexactly what you say - isn't a life but an existance, and a pretty poor one at that.
As others have said, I am more than happy to listen if you ever need an understanding ear - I find that my jack russells don't really have much in the way of good advice to offer me but they offer the one thing I really have always missed in my life, unconditional love.
Take great care of your good self, muchly dottii x
Thankees for your comment and support - much appreciated. Am just going through the motions each day - not that there is much movement in this half century bag o' bones any more! I'm muddling through at present - with the aid of my very loyal Kitt, Cadee (KD) and the "get-it-any-way-I-can" Kitt, Cariad - like you and your Jack Russell's - their unconditional love, will get me by - as will that of my Daughter, Grandson and S-I-L.
Cadee is all black and my constant shadow, only leaves me alone to eat, drink and go to the bathroom - she is very quietly spoken, and will pat my shoulder when she wants her ears, throat, head and back scratched. She's not one for sharing me with my Daughter and her Family and will hide away until they leave after visiting. Cariad is very, very, vociferous and always wants attention - for a good scratch and rub all over - and talks all the while she's getting a good rub-down! She has no qualms about who gets to fuss her - except my soon-to-be year old Grandson. Without my Kitts daily in my life? I'd be very, very lost in that dark place for sure. Although, having said that, and apart from having my Daughter, S-I-L and gorgeous Grandson keeping me from that place too? Having you and the rest of my Fibromite Family here - I Think I'll do okay and get through this lapse - I usually do, as I always tell my Daughter that things always have a way of sorting out somehow, eventually.
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You might just regret making the offer of listening if I took you up on it! 
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Sleeping more and more
Rough day on the planet
As if my Fibro is'nt enough...
Just too much pain :(
