Migraine
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Master |
Not sure how to start really - this week has been another hellish one.
...The 'friend' who 'Louise Hay'd' me on Monday, telling me that I am thinking all wrong about my migraines and stroke and that I am too negative. She's a Hay teacher and so that qualifies her to tell me that I don't really have the neurological conditions that have now been expertly diagnosed so I should just buck up etc etc .... I was so upset by her unkind interpretations of me. I know that all this Louise Hay stuff is complete claptrap (how can anyone 'positive affirmation' their migraines away?? how can you Louise Hay a harasser/stalker away?? ) but it was yet another blow. Another friend gone - i could really get into thinking that i'm the most obnoxious human being in the world. Yet I know I'm not - I was the one to whom all these fairweather friends turned for love and support before i got ill. Then I had a visit from the Social Services assessment people this afternoon. It was far far more about how they couldn't support me than looking at how they could even minimally help. So they've referred me to yet another department for another assessment for which there is a waiting list of many weeks. They also tried to give me yet more phone numbers of yet more agencies to call, more websites to visit - I told them, I've had 3 whole years of calling all and sundry for treatment/help/support to no avail. I'm completely done with calling 'caring/helping' agencies and getting referred on and on and on and ultimately being fobbed off and humiliated. Of course, this is all because they failed to diagnose the stroke three years ago. If I'd had the dx there and then I would have got at least some proper treatment and help. Now I'm old news, i've somehow managed for 3 years and so they somehow delude themselves that i'm ok really. Well, clearly I'm not. My life over these three years has degenerated into one huge, massive chaotic mess. And I STILL have no treatment for migraines ....I'm typing now having had a moderate (6/10) one all day, I still have to cope with these on top of everything else... I simply don't know how else to get the NHS/Social Services to actually do anything... There's a lady from the Stroke Foundation coming to see me tomorrow...if she can't offer any practical help urgently then I shall give up. I know it's hard to read but, you know, I just can't go on any longer. I've lost so much over this last 3 years in just about every way you could imagine. There comes a time when you have to draw a line and refuse to take any more abuse (I mean that I count the NHS and Social Services' lack of treatment and support as abuse because they always seem to make my illnesses into my fault somehow...it's bizarre and callous and I can't take any more). Thanks for listening samxx |
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Community Manager Guru  |
Hi Sammy
I really would like to come over there and make things all better for you. With friends like that who needs enemies. You are better off without folks who don't understand what you are going through. Sometimes my own family, who is very supportive, doesn't get it all the time. Telling you to hang in there doesn't seem enough. Having suffered chronic daily debilitating pain for over 10 years along with depression I can hear your frustration. I would never say I understand everything you are going through, because that just wouldn't be true. One of the things that helped me was just being able to say ok, I made it through today. That is enough. I tried not to look to tomorrow when it got too rough - just lived for, or better stated through, the day. Then I would try and do it again the next day, and next and next. Be assured your conditions are not your fault. We know that, deep down you know that. NHS and Social Services are doing a horrible disservice to you. I can see where you may want to draw a line, but then wouldn't they win so to speak? Even though you life is unbearable right now, maybe the lady from the Stroke Found. can be of some help. I hope these words of encouragement help a bit. We wish we could be more help. Please hang in there and we WILL talk tomorrow. |
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Wizard |
Sammy, hang in there. You have friends, us. We may be an ocean away, but you can pretty well find any of us online any time.
Look to whatever higher power you believe in, I believe it works and I hope you can find some peace. Deb [url=http://www.TickerFactory.com/]  |
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MMC Lead Expert Supreme Guru  |
{{{{{{Sammy}}}}}}
I'm sitting here absolutely believing that the Stroke Foundation is going to come through for you. You already know what I think about the Louise Hay philosophy. Gave that book 1/2 star, and that was just for having a pretty cover! Like Nancy, I wish I could be there to give you a hug and loads of support. Wish I had a magic wand I could wave to make things all better. We're here. Just keep talking with us, please? love and hugs,  Teri Robert Lead Expert, MyMigraineConnection terimmc@helpforheadaches.com
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Fledgling |
Hi Sammy -
I can completely understand how you feel. I'm going through hell just trying to get my LTD insurance to pay - after paying in for "extra" insurance for years! It's like no one can understand the suffering that we go through. I too will try to "endure" 6ers and 7ers as much as I can - I just don't want to let the migraines "win". What I am trying to do now is be a little more gentler to myself. My husband asked me the other day if I had a friend in my condition what advise would I give them - I would be all over them to take care of themselves much more considerate than what I tell myself. I sometimes have to take a task and break it down into tiny tasks so I don't feel overwhelmed. Also sometimes I have to just try to make it thru the next 5 minutes. I have a white board to do this because my mind just gets so jumbled. I am on year 8 of this - and just feel so jaded sometimes! All I can tell you is you have people here who have been there and support you! Hang in there! Liz |
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Master |
Hello you lovely women....and thank you so much for letting me cry on your shoulders.
 Nancy - I'm so sorry to read of your chronic pain. You do know what this is like, you know, (even if the circs are not the same exactly). So thank you for being here for me. Your encouraging words were a beacon of light in a very stormy, dark sea.... Teri - I really feel very hugged! It really is good to know that you are really there for me. Isn't it amazing what genuine words of care and support can do, and how you can actually feel them across the miles? Am still exchanging emails with my friend the Louise Hay teacher, and we're dialoguing seriously, so perhaps all is not lost. I truly hate losing friends. But we may have to find drastic ways of getting Ms Hay right out of the picture! Lizzardo - your insurance debacle sounds like an exact parallel of what goes on here - NHS is not free: we pay a hefty National Insurance fee each month (it's taken out of our salary so we don't have any choice). So, in theory, we are entitled to all the medical aid we need. In practice, well, here you see the reality. As you say, what is it with those who gatekeep the aid? Do they never get ill? Do they never have elderly parents who need care? Do they have to have their empathy neurons taken out before they get the job?? That was a good question your husband posed. I hope you're taking your 'friend-self' very seriously! I also liked your white board solution. I think this is ace - I will definitely get one and put it in my hall. (Did you have a stroke - you mentioned yr8 of this?) The NHS and Social Services are simply bizarre - isn't it gaslighting when someone so thoroughly denies your reality? They're actually causing MORE illness. Here's what I did after the SS left after barely half an hour - I called a voluntary sector advocacy service for disabled people that deals with this SS bunch regularly. Turns out that the SS woman was actually really doing her best to fob me off, I am entitled to a care package and the advocate is going to take up my case with them and come and see me sometime. Does anyone else think that it's beyond weird that you have to involve a charity sector service to help you get what you are entitled to from public services? Who are these social workers actually working for?? In comparison, this afternoon the lady from the Stroke Foundation was a stunner! She immediately and totally knew precisely what I was saying about my residual sx...she didn't doubt me for one instant, she actually pre-empted me on many things and knew what I was going to say because she's seen it all before. What's more, she's going to come and give me a series of counselling sessions, help me to deal with SS jerks, get me in contact with other people who have the same sorts of cognitive deficits, and support me through the process of getting back on my feet (and with dealing with the NHS)! Isn't that BRILLIANT?? (OK, I'm trying not to get too excited - I hope she doesn't let me down...) But her offer of help was entirely freely given, she certainly appeared to want to follow through. Her organisation has far fewer resources than the SS but she had no qualms, no ifs and buts, she was right there immediately. (Again, what is it with 'public' 'services'? That's what THEY are there for...). More than that, she made me feel like a valuable, intelligent human being. The SS people just made me feel like a snivelling turd to be honest. So thank you one and all for helping me hang on... Maybe we should rename this little corner 'The Lifesaver Team'... much love to you all  samxxx PS - next up is 3rd visit to new GP next Thursda. Maybe by then she'll have had chance to actually read my notes and the letter from Good Doctor. Here's where the fight begins...if she goes with GD's dx and treats me accordingly then she's setting up more supporting evidence for my litigation, on behalf of the NHS she's admitting that they made mistakes...She may feel a bit iffy about that. Will keep you posted. |
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Master |
Thank you to you too, Deb...an ocean is but a droplet when it separates friends who really care....I feel your support. Bless you. Samxx |
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MMC Lead Expert Supreme Guru |
Sammy,
I'm glad the hugs travel well! The lady from the Stroke Foundation sounds wonderful. Now, just KNOW that she's going to come through for you. Call it "self-fulfilling prophecy," "law of attraction," whatever you want, but BELIEVE it. OK? Keep your spirits up, my friend. You will not let this disease or the jerks in the NHS beat you! Hear me? LOL! with much love and many hugs,
Teri Robert Lead Expert, MyMigraineConnection terimmc@helpforheadaches.com
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Master |
Oh Sammy! Thank God things are looking up a bit! I just saw the first post a few minutes ago and my heart was breaking. Then you made me smile with your stroke foundation lady. An angel in human form? I've always personally found that certain people are sent into your life for the specific purpose of helping you through a tough time. They are called human angels :-)
I'll echo Teri's last sentiment about not letting this bleepin disease win :-) love you bim Migraine is a potentially debilitating genetic neurological disease that affects 36 million Americans. Migraine is underdiagnosed and undertreated. There is no known cure. The American Headache Society supports research and education. Please help us? Please specify that donations be made to headache on the hill http://www.networkforgood.org/pca/Badge.aspx?badgeId=102755 |
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Maven |
I am so glad to hear that your stroke foundation support is coming through.
I'll keep you in my thoughts in the coming days and I truly hope that things are beginning to look up. Don't give up--I'm sure that you will have more bumps to hurdle but Teri's right, don't let the disease win. Sometimes it seems so senseless that we have to go through so much to survive and when we begin to crumble, people just don't make anything of it..."Buck up, get on with it...". Giving in to a day of weakness is not letting the disease win, but letting people telling you it's nothing and then believing them is allowing that disease to control you. I like to think sometimes that our current suffering will be of benefit to someone else in the future, us being the guinea pigs to the refinement of medication and policies that may help us live life to the fullest...even if it is down the road a ways. Take care of yourself! We're pulling for you! aloofelf.blogspot.com myspace.com/leelood5e My disabling chronic illness is more real than your imaginary medical expertise. |
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Wizard |
You're very welcome, Sammy. I was very happy to see you posting today.
Deb [url=http://www.TickerFactory.com/] |
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Master |
Thank you team!
You want to hear the latest? I heard third hand that SS have refused me help - I need too much apparently and I have 'mental health issues'. From what I understand, they have shunted me off to some charitable organisation or other where I have to go through all the application hoops again which will take many more months. Does anyone else wonder what exactly these Social Services people do? or what the rationale for their existence is? No wonder I have 'mental health issues' with the massive runaround I continue to experience? sam - trying hard not to be deflated again xx |
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Forum Moderator Supreme Guru  |
Unfortunately, I think Social Services exists pretty much to create and perpetuate red tape.
You've still got the stroke foundation lady pulling for you, right? And hasn't she promised to go to bat with these SS people? Like the others said, she's likely to be your best bet here, and we've got all the hope in the world pinned on her coming through for you. It's easy to get bogged down in the runaround, but you've still got this to hang onto, along with us. ((((( massively huge droolie hugs for Sam )))))  Dragondrool Forum Moderator ~~8=:>>>> |
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MMC Lead Expert Supreme Guru |
OK, girl. No negative thoughts here to poison things. You still have hope through the Stroke Foundation. Right? I know this is hard, but I truly believe this will all work out to provide what you need.
with love and prayers,
Teri Robert Lead Expert, MyMigraineConnection terimmc@helpforheadaches.com
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