Was trying to get an appointment with my own G.P so now i have to wait 2wks, which is too long as i am in too much pain, if i see another doctor they will be dismissive & say the usual "it's your Lupus, you have to put up with it"
So was having a moan to my partner about having to wait 2wks & his reply was "well at least it's not 2mths & sure you'll be better by the time you get to see your doctor anyway" needless to say i was speechless & now have a lot of resentment towards him.....Im totally fed up being asked "whats wrong with you now?" My family are no better, my sister told me im a bore & need to go out more. Its all my own fault because i try to get on with things never ask for help & always try to help others, so to everyone else i dont look sick so im not sick! im so peaved off right now, i dont even want to be around anyone !
sorry for the rant!
feel a bit better now lol
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pollywolly
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Hi Pollywolly
I'm hearing you, sweatie. Gosh it took me a long time to educate my dear ones and even years on, one or two of them can still throw me off my "usual zen like demenour" with an unwelcomed, but well meant comment. That's why I really appreciate being able to come on here to share my thoughts.
Two weeks IS a long time to wait for advice or treatment from the GP when you are suffering. Maybe you could ask the surgery if you can take a cancellation. I don't think any of us should feel "fobbed off" by the professionals who we rely on for our care and wellbeing. Good luck!
Thanks flutterby! i never go to my doctors unless to get my perscriptions, they are so bad that if i feel really ill i go to the out of hours GPs, im just feeling frustrated coz i always get fobbed off & hurried out the door & told wait & see your consultant lol thats every 3mths, think i'll go to emergency doctors.xx
Its such a shame that your partner dosent get it, have you tried getting him to read about how Lupus affect your life, the first thing you could try is "the spoon theory" its not gonna be a sudden realiseation (spelling?) of your condition but it might well sew some seeds & he may start wanting to read all about it, as you know, there are plenty of sites to go to
As for you GP, I would it be worth try to go to a different Dr in your practice, you've probably just groaned at the thought of starting again but you may well find the right one.
As for your rant - rant away hun, better to get it out of your system than let it fester & we all understand how your feeling.
Do you know the address of the website that explains "the spoon theory"? I had it printed on paper once, given to me by a friend who understood because she has fibromyalgia. She used it to explain her severe fatigue to her husband. It is a POWERFUL analogy that has really opened the eyes of several of my family members! I'm just wishing I could find it online to print out a new copy or two.
If any members of this forum have never read the "spoon theory", it is just a few paragraphs long and definitely worth reading! But its greatest value comes from sharing it with others. Reading "the spoon theory" has explained my severe fatigue to people who just didn't "get it" no matter how I struggled to explain my lack of energy.
Pollywolly, I share your frustration with physicians. I wonder if you have access to a doc who practices the specialty of chronic pain management? The CPM doc I see has attended a 4 year residency in a department of anesthesiology. You can find such a physician by contacting a medical school's Dept. of Anesthesiology. These doc's do understand the basis of many types of pain including the joint pain caused by lupus. They treat pain by prescribing powerful pain med's (including morphine) in tiny doses. The medicine has to be taken on a very strict time schedule. They screen potential patients very carefully. Occasionally, patients have to submit to drug testing to prove that they are not using any additional pain med's or street drugs. but it's worth it! The relief of constant, nagging, nauseating pain is worth the intensive screening, monthly office visits, picking up prescriptions in person and the occasional drug testing to feel like a human being again!
I hope that you will find a physician who cares and can help, Pollywolly!
Yes Lorelei ive got the spoon theory i think its great! But he just dosnt get it said its a load of bull.... im alleregic to morphine so i can only have it with an antedote when im having surgery, though its worth a try to get a pain doctor...Thankyou.xx
The CPM doctors have over 50 different drugs that they can prescribe for chronic pain. I think they will be able to find something that you can take that will work for you.
I can't describe how completely my life has been transformed by being treated by my CPM physician. Before I saw him, I lay in bed most of the time because of the severityof pain in my hips and knees. I would go through each day watching the clock, not knowing how I would be able to get through the next hour, the next half hour, the next fifteen minutes. I had completely lost hope that my life would ever be any different. With pain medication, I have returned to keeping a normal schedule. I am out of bed all day every day. I can drive myself places again. Now my major limitation is fatigue not pain.
I so hope that you will be able to get treatment from a chronic pain management physician.
Was just about to post www'butyoudontlooksick.com but you found it, I always say to friend to look it up, I also have paper copies for my technophobe friends!! I find it gives my friends a fraction of understanding especially when I say, its 8am & ive already run out of spoons.
I hope it is useful & helps your loved ones to think about it
Thanks Trace i really appreciate everyone on this site because everyone knows what its like to live with SLE, yes ive tried the spoon theory & even gave him leaflets about lupus but he seems to be ignorant & thinks because i dont work anymore im just plain lazy,im seriously reconsidering my relationship now because he either dosnt understand or just dosnt want to know, i have a fantastic GP but its very difficult to get an appointment with her, she is very popular.xx
Glad you can tell us how you feel hun, as for your relationship, all I can say is, get a piece of paper & write down the positives & negatives of it, if its gonna make your health worse is it worth it?
I was in Intensive care last year with Pneumonia when mine decided he'd had enuf & yeah, at first I missed him but now lifes much easier for me, if Im having a bad day, which are most days at the moment, I can stay in bed & rest & not have to worry about someone coming home with the hump
I wish you well hun & pray you make the right decision for you xx
Same here Trace. My partner left me about a year or so into my diagnosis when I was still desperately ill. I can truely say I was devistated, not least as I was left homeless with young children.
Like you say, it's easier to look after yourself without someone esle dragging you down. (boy, if he could see me now! lol)
Polly, maybe a bit of relationship counselling might help you decide what's right for you both.
Hi Pollywolly, its taken me 2 weeks to se my Gp, Ive stuck it out because she is the only ! I can talk to, I did try 1 of the other partners in the practice 3 weeks ago but he just sat there looking at me as if to say stop wasting my time, the pain is still as bad so I am pleased to say I see her today.
As for partners I get a little kinda laugh off mine when I reply to the question 'how you feeling now', it'sgetting me down and I have told him about it several times he just does the same again and says maybe I dont realise I am doing it, making me think along same lines as you and we had counselling 2 years ago. The house has been up for sale a year now so we will see what happens if its ever sold.
Thanks luupysue, the same thing happens to me all the time! I think its very frustating to carry on a reasonably normal relationship with someone who dosnt 'get it' I do hope things work out for you.xx
Im so sorry you are going through a rough patch, do you have emergency appoi tent at your surgery, ours is the same waiting time but you can call on the day to get an emergency appt , and you are in so much pain that you can definately see someone without waiting two weeks, my husband is far from understanding, he doesnt have a clue what luous is and i ve given up on trying to justify anything , anymore to him , if i am in pain , I don't get up and he will have to get on with the kids until the career comes in ... be strong hun xxxx
Girl-I hear this!!!! You do not look sick so you are not sick!!!! It all makes me sick to be honest!!!!!!!!! I refrain from having a moan about how I feel-it is only when I am nearly half dead that I may say anything and then you hear-why did you not say something before!!!! I feel your pain but to be honest others will never understand unless they have walked in your shoes and it is futile trying to make them. Come here and have a moan! We all wear the same shoes-well almost!!!!
Only we know how Lupus feels but it dosen't help when the ones who are supposed to try & understand, can't be arsked (R deliberate!), glad we've all got each other, at the moment I feel like men are seriously over rated lol.
Have a Lupie free day, well, as much as possible anyway
Thanks everyone.x I was married before & have been divorced 10yrs now, My partner at present does not live with me, i dont think i will ever live with anyone again, my Lupus makes it difficult for me to be around someone all the time, he knows what lupus is, i think he's just fed up with it, he comes round & stays over 4 nights a wk & does nothing to help out, he leaves his dirty washing & watches me make the dinner & clean the house, then takes the hump when i need to go to bed, he can see im in pain but just sits there like a big turnip getting waited on hand & foot, he wouldnt think of inviting me around to his place & make me & my daughter dinner for once, (by the way) I havnt seen him for the past 3 days coz i want to kick him up the ass..
Do not do his laundry-do not cook for him-let him take care of you for a change-if not then let him go-you have enough stress without man stress!!!!!!!!!!
That was me a year ago! I stopped saying anything so now most of my so called friends just think I am anti social or lazy when I can't join in at outings etc. Its easier than explaining.
Always get the same anyway..."you should exercise, go out more etc etc" ...and literally no point in telling them about why you can't do all the things you used to, the pain, the fatigue etc cause you could get branded as a moaner.
I keep myself busy with what I can do, just smile and do as you want and as your body allows, am much happier. Those who understand will remain around. Those who think you are make excuses get fed up and leave. Its better this way.
No one can really understand our conditions unless they have experienced it themselves...partners get affected too... stressed out, grown up children get annoyed.
The bottom line is we can still be positive, laugh at our own short comings and try to be the best of ourselves without involving any close ones emphathy. It should come from within ourselves without any self pity. And a rant here now and then helps immensely too! Lots of lovely people in this club!
Be strong mentally, psychologically, emtionally inside and out... your cells will follow suit
I watch a lot of funny cat videos and loving animal videos haha! Love the Lion Whisperer!
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Come here and have a moan! We all wear the same shoes-well almost!!!!
You know what no I’m sick of it 🤬
what did I do wrong?
Friday the 13th appointment. What could go wrong?
What medication works for you? 
What would you think of this?
