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Old 23-01-2018, 10:38 PM   #1
yoyogirl
 
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Possible diagnosis

Hey
Do you think that being diagnosed with a chronic condition rather be awful negative would actually a positive?
My reasons are that once diagnosed I can access support groups in my area and make new friends that way
It will also be more black and white in terms of getting help from social services, NHS etc and if I ever work again future employers will be more understanding and I would havenít to feel like I am ok trial for a murder I havenít committed when I am at work or if I a, studying with the OU, I can access the disability help advice service and feel that I deserve the assistance whereas with my dyspraxia I feel people laugh at itíll yrest me as I am stupid/ thick/ useless/ not good enough and i get talked down to a lot
Plus the big positive is that I would feel as if am trial with my parents 24/7 and they will accept as it is rather constantly thinking ďitís in her head don t worry, thereís no blood test , thereís no scans
Whereas if itís explained in simpler terms to my family and they understand itís not in my mind and that itís not curable and thereís no specific cure out there will be more relaxed in terms of looking for a job and what I can and canít do. They also realise that a job would not cure the condition itself and neither would going on some exercise plan or just taking an Otc once would do anything.
And that there will be days when I wonít be able to get out of bed and offering me distractions to take my mind of the pain isnít always practical.
Especially as the cognitive impairment with the fog will affect what I can and canít do. As well as the pain, there will be no point in me typing if the pain hurts my hands too much so listening to music would be easier and may not be in the best place to get through full films. So watching something I have seen before would be more practical as it doesnít matter if I temporarily have to space out out if Iím in exhausted and cannot put words in sentence or understand what whatís going on or remember what happened three minutes ago.
They will have to understand that there will be days when the pain in my body is too high for me cope with or that I will not be able to go full on shopping days and that I will need to rest and recover for a few days after.

But I was watching 24 hours in a&e it also made me question my own quality of life and what will be in my best interests if the pain is high for me to manage and things like falling over and the stairs in my house plus the changes to my bedroom so that if my pain hurts too much i cannot damage myself further on the furniture or end up tripping over the dog in the middle of night. I will buy him a fluorescent dog collar so i spot the dog (I also call him the rat) in the dark.
Also I am going to take more notice of my personal belongings on the flooring my room and learn to plan ahead and make things easier for myself.



Have you ever confused a dream with life? Or stolen something when you have the cash? Have you ever been blue? Or thought your train moving while sitting still? Maybe I was just crazy. Maybe it was the 60's. Or maybe I was just a girl... interrupted.
I know what it's like to want to die. How it hurts to smile. How you try to fit in but you can't. How you hurt yourself on the outside to try to kill the thing on the inside. I tried groups, didn't work out just made my depression a lot worse.

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Old 23-01-2018, 10:55 PM   #2
Pomegranate
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It sounds like you feel a diagnosis would be a positive for you. Are you in the process of being diagnosed?





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Old 23-01-2018, 10:59 PM   #3
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I think I get what you mean. Getting a diagnosis for a physical condition can be helpful because it's something solid that explains your experiences. It's not all plain sailing though, even with a diagnosis. Even if you have a painful, chronic condition, treatment often involves you helping yourself in any way you can, including taking the advice of professionals and putting it into practice. It's not plain sailing or an easy get out. It's a lot of hard work.



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Old 24-01-2018, 03:11 AM   #4
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Getting a diagnosis doesn't necessarily make things easier all the time. For a long time, I got fobbed off with 'it's just your [pre-diagnosed condition], just take X and deal with it' when it was really something else that really needed attention and has lead to serious complications. Being diagnosed can give some sense of validation of your pain and experiences, but it's not a magic pathway to effective treatment or anything like that. It is very important that if you are diagnosed, you follow the treatment plan put in place by your doctors; your doctors can only work as hard for you as you do for yourself, be that taking meds, making diet changes if needed, attending physio etc.

Your pain and experiences do not mean any less or are any less valid with a diagnosis than without; you can call it a million different things, but if you're in pain, you're in pain.

Forgive me if I'm wrong, but your post sounds as though you are looking far into the future and expecting to have no hope of being in less pain. There are many effective ways to manage pain, I'm not saying that it's easy or that pain goes away, but there are ways of processing it and making it easier to live with. Don't give up hope, don't presume that you won't get any better or that you will get worse. I'm not in anyway saying that 'you'll get better', because chronic illness doesn't work like that, but don't give up hope of improving.




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Old 24-01-2018, 10:42 AM   #5
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I know it’s not plain sailing but it’s tiny step into the right medication and treatment and it’s been a long road of going backwards and forwards to the doctors, seeing ent specialists, neurologist etc and not being able to provide any answers to be told by one doctor it’s in my head it’s psychological. I just need to take a deep breath and face a problem. All those years of being in pain at my friends and needing s few a&e a few times to be told it’s pprbbaly in my head and the wasted journey and the disbelief of parents. to Be just told if I lost a few lbs, got a job and exercise exercised daily and I will feel better, and then exercising daily hoping it will make a difference to be told by dad that I need to do more my body is just warming up. F you dad, I was in agony the whole time I was walking all over, like I am going to walk a further six miles on top of what I have done. Where’s the magic pain relieving feeling that exercise gives you,that the nhs so positively promote. And the next day I’m stuck in the house and parents are like why aren’t you doing any sport, you are in pain because you neeed to move more it’s just anxiety remember from the previous doctor nothing to worry about just get a job and you will be cured. Exercise is good for low mood! Remember what the doctor said on “the truth about exercise”
“there’s no such thing as too much exercise” and you wonder why I don’t have some exercise disorder.



Have you ever confused a dream with life? Or stolen something when you have the cash? Have you ever been blue? Or thought your train moving while sitting still? Maybe I was just crazy. Maybe it was the 60's. Or maybe I was just a girl... interrupted.
I know what it's like to want to die. How it hurts to smile. How you try to fit in but you can't. How you hurt yourself on the outside to try to kill the thing on the inside. I tried groups, didn't work out just made my depression a lot worse.

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Old 24-01-2018, 05:02 PM   #6
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What condition do you suspect you have / are in the process of getting diagnosed?

Personally I feel more positive since getting my symptoms diagnosed. Like you, I always wanted to know if I had a condition because then it opened up possible treatment plans and clearer pathways of care. It also meant my family could understand a little more of what I was experiencing.

My chronic illness struggle has been going on now for about ten years. I saw a really unhelpful GP at the start who told me I was a hypochondriac and everything was down to anxiety. He refused to refer me to the hospital. I went back a second time and demanded the referral. He told me I was making a mistake. In actual fact he was very wrong, I was not a hypochondriac; years of tests and consultations have revealed there are things wrong with me and I am going to need a big operation this year.

My family used to be fairly unsympathetic in the beginning, telling me to just push through pain, exercise more, eat better etc and they got frustrated when I'd miss college/uni/work because of the symptoms. But now my conditions have actual names and the fact the hospital take me seriously, they are more understanding. My partner is also very understanding, though he knows when to push me to do more and not just give in.

Yes it can hurt to hear that if only we did more exercise/yoga/walking/tea drinking/meditation/ate less fat etc etc we'd feel better. None of that will cure us of being chronically ill, but it DOES have its place alongside medicine. Taking prescribed medication helps but you also have to treat your body with care, try to de-stress (mindfulness can help), make sure to have gentle exercise (as much as you can safely do), eat a balanced diet. I know it's hard, I'm far from perfect, but it can't be discounted completely.



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Old 25-01-2018, 10:14 AM   #7
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My gp suspects I have fibromyalgia and o have suspected it a long time. At the moment i can exercise a little i used to do quite a lot but it’s rather painful rarely pain free . But it’s also going to affect what kind of job I can do and wither I will be too exhausted to cope with it. But if I am diagnosed I am going to take a long time away from jobseeking and focus on getting the pain and other symptoms managed. As realistically, if I struggle with texting, using iPad,watching telly concentrating and typing how the heck am i gonna manage a part time when last year working at GHA was a struggle physically.



Have you ever confused a dream with life? Or stolen something when you have the cash? Have you ever been blue? Or thought your train moving while sitting still? Maybe I was just crazy. Maybe it was the 60's. Or maybe I was just a girl... interrupted.
I know what it's like to want to die. How it hurts to smile. How you try to fit in but you can't. How you hurt yourself on the outside to try to kill the thing on the inside. I tried groups, didn't work out just made my depression a lot worse.

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Old 26-01-2018, 10:52 PM   #8
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I have fibromyalgia too, among other conditions.

You have to bear in mind that your symptoms are the same whatever label you get given. So struggling to text, not being able to concentrate etc none of that will suddenly get better or worse if you get a diagnosis. So if you know what you struggle with you can start to think about how you can manage those symptoms day to day, or what jobs would be better than others.



Isnít it funny how day by day nothing changes but when you look back, everything is differentÖ

you once called your brain a hard drive, well say hello to the virus.


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