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Discussion Starter · #1 ·
I don't know if the onset of winter is making me feel more miserable, but right now I feel so lonely
I go through periods with my CFS/ME where I just feel like no-one understands and I'm alone to struggle on with it...day in day out. I guess having no close family doesn't help.Also I find it a problem picking up the phone and calling someone because I just can't think what to say and I'm concerned I will be a bore to them. I know alot of that comes from what I went through with my ex partner making me feel worthless. How do you tell people your afraid to call them? they'd think you were mad or something! Anyway thats my five minutes of self-pity over with for now, thanks for reading
 

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((((((((((((((((((( Clair )))))))))))))))))))))
Might be something about winter...But I do know how you feel. Saying how you're feeling is never self-pity. Because you don't gripe, you share, and sharing is a good thing!! Especially when you have lots of things to deal with.Asking for help or support is always so hard. But, at least while you're here, you don't have to ask. It's always here for you! (As are we)
 

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Hi Clair,I know how you feel - I've been feeling alot like this myself lately. I particularly feel that it stops me having relationships cos - whilst I am mostly able pretend for most people that I'm not in all kinds of pain - I find it very hard to hide it from someone I feel close too - and who wants to date someone who is sick and in pain all the time.I don't mind the physical pain so much - but the effect on my mood and the distance that puts between me and people -that kills me.And yes you are right - most people cannot understand this type of thing unless they have been through it.
 

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Sorry to hear you feel lonely, Clair. I'd give you my phone but you're in the UK and if you called you'd then feel not only lonely but depressed by the tolls.Just hang in there. Have gotten to a place with my M.E. that's beyond loneliness. I know that sounds kind of extreme, but there are times when other people are hard to handle. I get jealous of my energy because there isn't enough of it that's useful and at day's end I don't have all accomplished I'd needed to. Am also prone to going off on tangents because M.E. kind of leaves the mind blotto.Anyway, I'm sure you're not boring your callers. And perhaps you could meet more like-minded people if you have a local support group. Though I kind of got beyond support groups too. This thing has just lasted tooooo long.Do you ever have times when the M.E. is so bad that you really can't do anything--not even read or listen to music or phone anyone? This might sound odd but one of the best things I've done for myself recently is buy a DVD player, the whole deal, with 5.1 sound so it's like you're at the movies. (I usually can't go to the movies because my M.E. has caused some profound sleep disturbances.) When I can do nothing else I can sometimes put in a DVD and mollify myself by getting lost in the 5.1 speaker world of the film. Just remember that during your better times stockpile a variety of DVDs to suit your various moods--sometimes you'll want a comedy, sometimes a drama. Also, I got mine refurbished or remanufactured. A big savings for an M.E.-strapped budget.Anyway, I've tended to prefer winter to summer, much. I live near a park and--I don't resent them--but when I see all those healthy people out bicycling and throwing frisbees I feel sort of embarrassed to be dragging along in a haze of M.E. I think it's an emotional thing because, pysically, cold seems to have a worse effect on me than heat, though either in excess tends to worsen the condition.You're right--even the smallest person can change the future. And with M.E. you've hit the lottery on having the right to bouts of self-pity. But I find it's like a movie of walking through the desert--there's pain, dismay, self-pity, depression, and then you still just keep putting one foot in front of the other. I don't know what to call this anymore. It's like being someplace few have ever been.That alone would make you worthwhile. You're like an Edmund Hillary back with news of what's at the peak of Everest. Keep going!All the best for health and perseverence,gijoe88
 

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Haven't heard from you, Clair. Be sure to give a shout out if you need anything. Just got my latest issue of a national ME quarterly, and it always makes me worry about all the ME-sufferers out there having trouble getting medical attention and getting isolated. Not sure how I became an ME gorilla who slogged through the ME emotional jungle to the other side and managed to keep going. If I had that formula I'd give it out freely. But--please take this to heart--no matter WHAT happens just keep going, even if at times "going" just means being in your bed staring at the ceiling. You're NOT alone.Very best wishes,gijoe88
 

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Discussion Starter · #7 ·
Hello
sorry I am here, but I have been busy busy busy at work so not as much time to wallow in self pity this week
thanks all for the love and hugs much appreciated
I think its the weather and time of year because a few people who I work with have mentioned feeling the same, oh if only I lived in the carribean!
 

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Hi Clair,I know its a bit early but if you start to feel worse during the onset of winter you may have the same as a lot of people including myself . Its called SAD. (Seasonal affective disorder.) It can be hell with deep depression, sleep disorders, social problems,lethargy,joint aches, & Chronic fatigue. For those who suffer from it it is the inability to adjust to reduced light by a gland near the brain that is sensitive to light through the retina of the eye. Being in Melbourne I am fortunate to be able to sit outside some winter days & enjoy a little sunshine which really makes a difference. Even so it is not enough to stop it completely. According to experts SAD is very uncommon north of 30 degrees so I would need to go to Queensland to be cured.Through Dr Mercolas site there are now special light bulbs available that produce enough U.V to reduce symptoms , but they are screw fittings, not bayonet. If you type SAD into your search bar you will find plenty of listings.good luck.
 

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Hi Clair,
Glad to see you're back on top!Sorry to have to disagree, but I've sent my mind on wintertime. Oh, if only I lived in Iceland with the natural thermal effect wafting up through the house, and all that snow and bracing cold outside.Anyhoo, you are changing the future.How about getting a tray of cactuses (cacti?) for that warm desert feeling?Best.gijoe88
 

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Hi snakeoil,I'm interested in your blog tag.Does "snakeoil" indicate that you've tried a lot of alternative treatments to no avail? If so, would you mind sharing details? Or are they already out there somewhere on this blog?Think I have anti-Sad. I'm happier in winter, as Clair knows, and on bright days I tend to wear sunglasses, even indoors. So at least "SAD" is one complication I can take off my list, though I wish all the best to those of you afflicted with it & I'm glad you have a treatment that works.I'm dragging the net for any anecdotal info from any ME patient experience with either cytokine blockers or chelation therapy, the Ian Solley method or any other. Got anything on these? Would much appreciate.Best wishes. No matter what, one day they're going to being putting another Klaus on the Barbie--or is it a new Mengele? The wheels of justice may turn slowly but turn they do.And then a treatment and a cure.G'day!gijoe88
 

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Discussion Starter · #11 ·
Hi Snakeoil,Thanks for the post, yes I know about SAD because my endocrinologist has said he thinks I have it before...his suggestion was not to move any further north, and since I'm not keen on anti-depressants and can't afford a lightbox he suggested plenty of banana's and potatoes and to try if I wanted St John's Wort.I go through the same every year september til march I want to curl up into a ball and hide in a warm cosy environment...think maybe next time I come back I shall come back as a tortoise or something
Once I hit January though it starts to ease off, so I guess you will just have to put up with me being a grump until then
LOL - gijoe - I wear sunglasses indoor too and all year round so your not alone there
 

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Clair!You definitely do not want to live in the Caribbean or in S. Florida for that matter. Look at all the horrible tropical storms and hurricanes that have “blown” through this year. When you see your home and yard turned into something resembling Sarajevo during the ethnic cleansing that is really depressive. I’m living through it right now.Maybe surrounding yourself with some bright and sunny artwork could cheer you up a bit.Here, of course, the sun and heat is a big problem and I find that if I look at my big painting of a snow landscape for a little while it does make me feel cooler.Cheer up!
 

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I'm with you on this one, Nanette.Excess heat and excess cold can both be bad, but heat seems worse. Also, I'm happy for the people who can be out running around in the summer, but to have to see them doing so is kind of like having my nose rubbed in the fact that I'm unable to do so, and this can be a psychological downer though I try not to let it. (Same with watching sporting events, etc. Don't want to be grumpy, but I'd rather just hear the end result on the news.) Could be if our disease were more "official" and recognized I wouldn't feel this bad about it, but you tend to draw a blank if you tell people you have "ME" or even "chronic fatigue syndrome." You feel you're wearing an unjustly given "scarlet M" for "malingerer" when in fact there isn't anything you can do about it, and sometimes those closest to you just don't understand. The burden on top of the burden.Yes, happy artwork helps. I like some of Jean-Michel Basquiat's stuff because it has a wild energy that I can often feed off of. By the way, your train is a great visual tag. Nice touch. Reminder to just keep going.All the best!gijoe88
 

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instead of saying you have ME or chronic fatigue syndrome say you have myalgic encephalomyelitis. they will be blinded by the technical term and automatically take you more seriously. doctors use this trick the whole time !!
 

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stillhere!I like your idea of using the correct medical term myalgic encephalomyelitis. 9 out of 10 wouldn't have a clue what you're talking about, and as the old saying goes: "If you can't impress them with genious, baffle them with BS" - or should I say IBS for some of us?
 

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Right on, stillhere. For technical reasons I say myalgic "encephalopathy" instead of "encephalomyelitis"--don't know if I'm right about that. Anyway, either one gets it done. It's great when doctors give you that blank look and you can say "what, you don't know what myalgic encephalopathy is?" Levels the playing field right quick. But unfortunately we're still sick and they've still got our money. Phyric (sp.?) victory but still a victory. I'll take it.I was thinking about you and your totally understandble issues around letting people know you have this. Wish I had saved it but I'm kind of sure I taped over it. There was a great local program out of Boston about a surgeon and a lawyer who had both contracted ME. The surgeon performed her last operation with tears running down into her mask--she'd trained her whole life and she was good at it, but there was no way she was able to hide her increasing debility on the job. The lawyer was able to go independent and he's still extremely cautious about who he tells for fear of being shut out. Possibly it's a way you could go if what you do can be done on a contract basis. Part of the reason I lost my job is that I couldn't hide it anymore. The big sticking point was the sleep disturbance aspect had become increasingly worse, and even if I put in a 70-hour week, a killer, they still weren't happy because I couldn't get there at exactly 8:17 a.m. or whatever Kafkaesque time they were demanding. My sleep had kind of split into two halves. One time I told them I could be there at about 5:28 in the a.m. or 10:15 in the a.m., take their choice, and this only made them madder.It's also a male deal. We're more reluctant to show illness because it tends to seem like weakness, but I've gotten to the point where if other people feel that way it's their problem. Yet it still doesn't help if they're down on you for being "sick" when you don't look sick them. It's a tough one.For women there's another kind of gender problem, with paternalism and stuff. Women are "emotional" are so of course you're "a little tired"--it's not that you're being savaged by the monster from the "Alien" movies. Also the ME demographic seems to be much like MS--about 2 to 1 ration of women to men, and MS, so obviously organic, was long dismissed as "female hysteria" and "all in the mind." Makes you want to spit.And, nanette, thanks for the well wishes. I thought "full steam ahead" was for ships, but if Laura Hillenbrand can use "macaroni" for "shoes" then whatever. "Total health ahead"--? By the way, still unable to find out, how are getting those cool parallel bars around your quotes?Best to y'all,Total vindication ahead,gijoe88
 

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Oh yeah . . . I forgot, a spot of good news.Found out that a person at NIH who was the top government guy for ME (why do we have to have this in the age of alphabet soup?) has finally been traded to another team--God help them. He really had it in for us. I mean, this was the government's point man and he actually used to refer to us as "those xxxxing patients"--!I still believe that for whatever reason there's some kind of giant conspiracy to squash the facts about ME, to stop it from taking its rightful place in the big medical picture. Apparently when scientists get close to it, those who know say it appears to be something that could only be cooked up in a lab. Spooky. But this trade might help some.Also, I should have said before, I kind of couldn't do my job anymore anyway. Couldn't even do it now on a contractual basis. This makes yet one more reason that it's important to put this disease on the map.Well, gotta run. The men in black are here to take me to one those secret prisons.Been swell chatting with y'all.The "disappeared" guy formerly know as,gijoe88
 
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