Health Profiles - New Addition Your Help Needed
We thought it might be useful to create a new wiki database of people’s experiences of illnesses, conditions and medical problems they have been through. We think it would be a great opportunity for people to share experiences and know that there are other people in the same position as them.
So we need your help in this, if you have an illness or have had one and are currently recovering we would like to hear about your experiences. You can post as anonymous or you can leave your username. All you have to do is post on the thread and a mod will move it over to a wiki page for others to see. The wiki will be accessible via the helpful links in the health forum.
Using the following format would be helpful:
Name of condition:
Experience:
Personal advice to anyone (remember to keep this away from medical advice):
Remember if you do not want to reveal yourself then you can always post anonymous If you do leave your name but would rather not be contacted please mention this in your post.
Please leave this thread for people that are posting experiences and any chat or other posts will be removed and dealt with accordingly.
All experiences of people are their own and are in no way medically sound advice or a diagnosis.
So we need your help in this, if you have an illness or have had one and are currently recovering we would like to hear about your experiences. You can post as anonymous or you can leave your username. All you have to do is post on the thread and a mod will move it over to a wiki page for others to see. The wiki will be accessible via the helpful links in the health forum.
Using the following format would be helpful:
Name of condition:
Experience:
Personal advice to anyone (remember to keep this away from medical advice):
Remember if you do not want to reveal yourself then you can always post anonymous If you do leave your name but would rather not be contacted please mention this in your post.
Please leave this thread for people that are posting experiences and any chat or other posts will be removed and dealt with accordingly.
All experiences of people are their own and are in no way medically sound advice or a diagnosis.
Scroll to see replies
Bulimia nervosa
I have suffered bulimia nervosa for three years now. I have had one period of recovery followed shortly after by a huge relapse. I went through a period of B/P 6 times daily, i lots quite a lot of weight and just obsessed about my appearence. It exhausting! I am currently trying to recover and support is very precious. I have my own website about eating diorders where people can join gain information and support, check it out...its so cool! www.bravespace.co.uk
My personal advice to help prepare for recovery would be to have a look back at what you think the causes of your problem are, eg family dysfunction, trauma, abuse anything you think has been stressful or contributed in some way. knowing where it stems from really helps. it helps you uncover the real you and become self evaluative. Also i would say knowing your weaknesses and triggars to your ilness espcecially in the case of eating disorders....i truly beleiove strength is in the knowledge of your weakness. Dont beat yourself up about slips, use them to learn.
I have suffered bulimia nervosa for three years now. I have had one period of recovery followed shortly after by a huge relapse. I went through a period of B/P 6 times daily, i lots quite a lot of weight and just obsessed about my appearence. It exhausting! I am currently trying to recover and support is very precious. I have my own website about eating diorders where people can join gain information and support, check it out...its so cool! www.bravespace.co.uk
My personal advice to help prepare for recovery would be to have a look back at what you think the causes of your problem are, eg family dysfunction, trauma, abuse anything you think has been stressful or contributed in some way. knowing where it stems from really helps. it helps you uncover the real you and become self evaluative. Also i would say knowing your weaknesses and triggars to your ilness espcecially in the case of eating disorders....i truly beleiove strength is in the knowledge of your weakness. Dont beat yourself up about slips, use them to learn.
Craniopharyngioma
On the 10th January 2005 i was diagnosed with a brain tumour after i started going blind in my left eye. On the 16th, i had very successful surgery in which most of the tumour was removed. Later that year i had radiotherapy to remove the rest of the tumour. To this day since then everything has been A OK, with regular MRI scans and meeting with my surgeon.
Dealing with being told all this at 15 wasnt easy, as you could imagine. But i just stayed positive, all the time i thought positively, i suppose in some small way i hoped being positive would make me a little better again, sounds crazy but when i had been told what i had, it was something to grasp onto. My process was quite quick, going from being diagnosed to having a successful surgeory, which helped, soon as you know its been a success you can see the light at the end of the tunnel, to recovery.
I think i was very lucky, but for anyone in this suituation, dont let it control you, just stay positive all the time, think positive act positive.
I read a horrible fact the other day..........Only 12% of males who are diagnosed with a brain tumour survive beyond 5 years. Just made me realise how lucky i am and that i need to make the most of it, and if i can do it, anyone can do it, BELIEVE! And i wish you good luck
On the 10th January 2005 i was diagnosed with a brain tumour after i started going blind in my left eye. On the 16th, i had very successful surgery in which most of the tumour was removed. Later that year i had radiotherapy to remove the rest of the tumour. To this day since then everything has been A OK, with regular MRI scans and meeting with my surgeon.
Dealing with being told all this at 15 wasnt easy, as you could imagine. But i just stayed positive, all the time i thought positively, i suppose in some small way i hoped being positive would make me a little better again, sounds crazy but when i had been told what i had, it was something to grasp onto. My process was quite quick, going from being diagnosed to having a successful surgeory, which helped, soon as you know its been a success you can see the light at the end of the tunnel, to recovery.
I think i was very lucky, but for anyone in this suituation, dont let it control you, just stay positive all the time, think positive act positive.
I read a horrible fact the other day..........Only 12% of males who are diagnosed with a brain tumour survive beyond 5 years. Just made me realise how lucky i am and that i need to make the most of it, and if i can do it, anyone can do it, BELIEVE! And i wish you good luck
Anonymous
Craniopharyngioma
On the 10th January 2005 i was diagnosed with a brain tumour after i started going blind in my left eye. On the 16th, i had very successful surgery in which most of the tumour was removed. Later that year i had radiotherapy to remove the rest of the tumour. To this day since then everything has been A OK, with regular MRI scans and meeting with my surgeon.
Dealing with being told all this at 15 wasnt easy, as you could imagine. But i just stayed positive, all the time i thought positively, i suppose in some small way i hoped being positive would make me a little better again, sounds crazy but when i had been told what i had, it was something to grasp onto. My process was quite quick, going from being diagnosed to having a successful surgeory, which helped, soon as you know its been a success you can see the light at the end of the tunnel, to recovery.
I think i was very lucky, but for anyone in this suituation, dont let it control you, just stay positive all the time, think positive act positive.
I read a horrible fact the other day..........Only 12% of males who are diagnosed with a brain tumour survive beyond 5 years. Just made me realise how lucky i am and that i need to make the most of it, and if i can do it, anyone can do it, BELIEVE! And i wish you good luck
On the 10th January 2005 i was diagnosed with a brain tumour after i started going blind in my left eye. On the 16th, i had very successful surgery in which most of the tumour was removed. Later that year i had radiotherapy to remove the rest of the tumour. To this day since then everything has been A OK, with regular MRI scans and meeting with my surgeon.
Dealing with being told all this at 15 wasnt easy, as you could imagine. But i just stayed positive, all the time i thought positively, i suppose in some small way i hoped being positive would make me a little better again, sounds crazy but when i had been told what i had, it was something to grasp onto. My process was quite quick, going from being diagnosed to having a successful surgeory, which helped, soon as you know its been a success you can see the light at the end of the tunnel, to recovery.
I think i was very lucky, but for anyone in this suituation, dont let it control you, just stay positive all the time, think positive act positive.
I read a horrible fact the other day..........Only 12% of males who are diagnosed with a brain tumour survive beyond 5 years. Just made me realise how lucky i am and that i need to make the most of it, and if i can do it, anyone can do it, BELIEVE! And i wish you good luck
That was me by the way and if any wants to contact me about something like this then feel free.
I guess ive gone so long without really telling anyone it was easy to do it anonymous, but that wouldnt be fair on people who are going through it now and need contact with someone.
Feel free to message me and i wish aardy20 all the best with her recovery, lots of love
bulimia and anorexia
i suffered from bulimia and anorexia for 7 years. i had alway been in a bad routine with food and but suffered when i move away to uni because i had to take full responsibility of my eating. i though that everyone at uni would like me more if i was thinner and that i would get on better in my course. i went to my gp in my first year of uni to seek help but three years of therapy later and i had not been able to gain control of my eating disorder even though i felt like i had tried everything. by the time i was in my third year of uni i was vomiting up to 50 times a day and not being able to make it to classes. during these three years my weight never fell below 9st7llb. i stayed pretty much around 10st and a bmi of 22. i could not see any hope for me. i believed that if i was really ill i would be at least in the underweight catagory. i went back to my doctor and he told me to go and see the practice nurse who is younger and understood the illness better. i told her what was going on and she did some blood tests and said that i should never have left it this long to tell people how bad it was getting. she requested to see me everyday for the next week or so while she arranged a refferal to the hospital. she was concerned that i would die within the next few months.
i was sent to a near by city which had a unit for people with eating disorders. i spent 6 months in hospital where we were taught good nutrition and were supported during and after meal times to establish a normal eating patteren. it has been a year since i was discharged from the hospital and i have never felt stronger or happier in my life. i consider myself to be fully recovered and would hope i never go down that road again.
personal advice:
because an eating disorder is a mental health problem you need to make an extra effot to get better. it is not something you can take a pill for or have surgary to correct. you need to be mature and willing to take on the full responsibility that comes with recovering. if you are not too keen on the thought of recovery then you will find it very hard.
my advice:
1. be self motivated and willing to take it all the way.
2. to believe what the professionals tell you, even though your mind is telling you that they are being rediculas.
3. 2000cals is a normal amount for an adult to eat. this was something that took me 7 years to believe but i now know (from experiance) that it is completly true. if you fear you may have a motabolizum problem your gp can provide tests for this, but if thoes test show no abnomalities with you motablizum then it is your mind that is convinsing you that you are eating too much not your body. at the start of recovery you will gain weight because your body in confused however within a few months this will balance out to a healthy weight.
4. if you are underweight (under bmi 18.5) be willing to reach and maintain a bmi over 19. i have never personally been underweight but when i was in hospital some girls i met said that being at a normal weight stopped them thinking about food all the time because their body was not in starvation mode anymore.
5. consider any other mental health problem or past problem that could have led to or is still effecting your eating disorder. knowing where the problem lie is half way to solving the problems.
6. finally, always believe that recovery is possible. if you dont you will stop trying. recovery is possible i know, i did it.
i dont mind being contacted about any of these issues. i am happy to help others get better.
i suffered from bulimia and anorexia for 7 years. i had alway been in a bad routine with food and but suffered when i move away to uni because i had to take full responsibility of my eating. i though that everyone at uni would like me more if i was thinner and that i would get on better in my course. i went to my gp in my first year of uni to seek help but three years of therapy later and i had not been able to gain control of my eating disorder even though i felt like i had tried everything. by the time i was in my third year of uni i was vomiting up to 50 times a day and not being able to make it to classes. during these three years my weight never fell below 9st7llb. i stayed pretty much around 10st and a bmi of 22. i could not see any hope for me. i believed that if i was really ill i would be at least in the underweight catagory. i went back to my doctor and he told me to go and see the practice nurse who is younger and understood the illness better. i told her what was going on and she did some blood tests and said that i should never have left it this long to tell people how bad it was getting. she requested to see me everyday for the next week or so while she arranged a refferal to the hospital. she was concerned that i would die within the next few months.
i was sent to a near by city which had a unit for people with eating disorders. i spent 6 months in hospital where we were taught good nutrition and were supported during and after meal times to establish a normal eating patteren. it has been a year since i was discharged from the hospital and i have never felt stronger or happier in my life. i consider myself to be fully recovered and would hope i never go down that road again.
personal advice:
because an eating disorder is a mental health problem you need to make an extra effot to get better. it is not something you can take a pill for or have surgary to correct. you need to be mature and willing to take on the full responsibility that comes with recovering. if you are not too keen on the thought of recovery then you will find it very hard.
my advice:
1. be self motivated and willing to take it all the way.
2. to believe what the professionals tell you, even though your mind is telling you that they are being rediculas.
3. 2000cals is a normal amount for an adult to eat. this was something that took me 7 years to believe but i now know (from experiance) that it is completly true. if you fear you may have a motabolizum problem your gp can provide tests for this, but if thoes test show no abnomalities with you motablizum then it is your mind that is convinsing you that you are eating too much not your body. at the start of recovery you will gain weight because your body in confused however within a few months this will balance out to a healthy weight.
4. if you are underweight (under bmi 18.5) be willing to reach and maintain a bmi over 19. i have never personally been underweight but when i was in hospital some girls i met said that being at a normal weight stopped them thinking about food all the time because their body was not in starvation mode anymore.
5. consider any other mental health problem or past problem that could have led to or is still effecting your eating disorder. knowing where the problem lie is half way to solving the problems.
6. finally, always believe that recovery is possible. if you dont you will stop trying. recovery is possible i know, i did it.
i dont mind being contacted about any of these issues. i am happy to help others get better.
Name of condition: Major Depressive Disorder
Experience: I have always been a depressive person, which possibly stems from the negativity in our household as a child. It was actually the doctor who suggested I was depressed the summer I was 16, after I had been feeling bad and my blood tests came back fine. I denied it (because at that time I was ignorant about the condition) and avoided my doctor until the January next year. At that point a diagnosis was made and I was referred to CAMHS. I was also prescribed an antidepressant called Citalopram, the dosage of which was titrated upwards. Things weren't going well and I overdosed during my exam period.
Following treatment I discharged myself from the hospital and started seeing my doctor more regularly. Since then I have been on Sertraline, and more recently, Escitalopram.
Personal advice to anyone: Don't be scared to see a doctor. Depression is surprisingly common!
Name of condition: Temporomandibular Joint Dysfunction Syndrome
Experience: I started experiencing pain in my left jaw, particularly in the mornings. I ignored it but it got much worse and I found it hard to eat. I saw my dentist and he gave me some exercises and a bite guard to wear at night because I was grinding and clamping my teeth, which was damaging my teeth and jaw joint. I was also put on a soft diet and referred to the hospital for further examination and an X-ray to check for conditions such as arthritis.
Personal advice to anyone: TMJ takes a long time to treat, but stick with it and take the doctors' advice.
Experience: I have always been a depressive person, which possibly stems from the negativity in our household as a child. It was actually the doctor who suggested I was depressed the summer I was 16, after I had been feeling bad and my blood tests came back fine. I denied it (because at that time I was ignorant about the condition) and avoided my doctor until the January next year. At that point a diagnosis was made and I was referred to CAMHS. I was also prescribed an antidepressant called Citalopram, the dosage of which was titrated upwards. Things weren't going well and I overdosed during my exam period.
Following treatment I discharged myself from the hospital and started seeing my doctor more regularly. Since then I have been on Sertraline, and more recently, Escitalopram.
Personal advice to anyone: Don't be scared to see a doctor. Depression is surprisingly common!
Name of condition: Temporomandibular Joint Dysfunction Syndrome
Experience: I started experiencing pain in my left jaw, particularly in the mornings. I ignored it but it got much worse and I found it hard to eat. I saw my dentist and he gave me some exercises and a bite guard to wear at night because I was grinding and clamping my teeth, which was damaging my teeth and jaw joint. I was also put on a soft diet and referred to the hospital for further examination and an X-ray to check for conditions such as arthritis.
Personal advice to anyone: TMJ takes a long time to treat, but stick with it and take the doctors' advice.
How different is this to the wiki article about disabled students experiences with their paticular disability?
Irritable bowel syndrome (IBS):
I've had problems on & off with my stomach, bowel and digestive system since I was at least 7. All my problems were put down to being lactose intolrant. (I've had this at least 4 times since the age of 1!)
This all started when I turned 18. Mum put it down to me being lactose intolerant. I stayed off milk and still had problems and she said I need to keep a food diary. After a few weeks of doing the food diary, there was no pattern that I could see.
After losing a lot of weight and feeling rubish all the time, I finally went to the doctors and got told to try a wheat free diet and got told I have IBS. (the name they give if they can't find out what's wrong) I was also given some medication, which I was intolerant to.
I had a blood test done and got told they couldn't find anything wrong with me. I was put on various types of medication and none of them did anything for me. I was then sent to a stomach specialist who tested me for coeliacs.
Again, the blood test came back negative. I was put on another medication, which was no good for me. (I had the opposite issue of what it was meant to help with)
2.5 years later, I am still having problems. I have finally managed to gain and maintain a healthy weight for my height. (i was imldly underweight for a bit)
Don't have much advice; but don't be surprised if you find that nothing works - I have this issue. And if you can't get an answer, keep on.
Irritable bowel syndrome (IBS):
I've had problems on & off with my stomach, bowel and digestive system since I was at least 7. All my problems were put down to being lactose intolrant. (I've had this at least 4 times since the age of 1!)
This all started when I turned 18. Mum put it down to me being lactose intolerant. I stayed off milk and still had problems and she said I need to keep a food diary. After a few weeks of doing the food diary, there was no pattern that I could see.
After losing a lot of weight and feeling rubish all the time, I finally went to the doctors and got told to try a wheat free diet and got told I have IBS. (the name they give if they can't find out what's wrong) I was also given some medication, which I was intolerant to.
I had a blood test done and got told they couldn't find anything wrong with me. I was put on various types of medication and none of them did anything for me. I was then sent to a stomach specialist who tested me for coeliacs.
Again, the blood test came back negative. I was put on another medication, which was no good for me. (I had the opposite issue of what it was meant to help with)
2.5 years later, I am still having problems. I have finally managed to gain and maintain a healthy weight for my height. (i was imldly underweight for a bit)
Don't have much advice; but don't be surprised if you find that nothing works - I have this issue. And if you can't get an answer, keep on.
Fail Whale
Name of condition: Major Depressive Disorder
Experience: I have always been a depressive person, which possibly stems from the negativity in our household as a child. It was actually the doctor who suggested I was depressed the summer I was 16, after I had been feeling bad and my blood tests came back fine. I denied it (because at that time I was ignorant about the condition) and avoided my doctor until the January next year. At that point a diagnosis was made and I was referred to CAMHS. I was also prescribed an antidepressant called Citalopram, the dosage of which was titrated upwards. Things weren't going well and I overdosed during my exam period.
Following treatment I discharged myself from the hospital and started seeing my doctor more regularly. Since then I have been on Sertraline, and more recently, Escitalopram.
Personal advice to anyone: Don't be scared to see a doctor. Depression is surprisingly common!
Experience: I have always been a depressive person, which possibly stems from the negativity in our household as a child. It was actually the doctor who suggested I was depressed the summer I was 16, after I had been feeling bad and my blood tests came back fine. I denied it (because at that time I was ignorant about the condition) and avoided my doctor until the January next year. At that point a diagnosis was made and I was referred to CAMHS. I was also prescribed an antidepressant called Citalopram, the dosage of which was titrated upwards. Things weren't going well and I overdosed during my exam period.
Following treatment I discharged myself from the hospital and started seeing my doctor more regularly. Since then I have been on Sertraline, and more recently, Escitalopram.
Personal advice to anyone: Don't be scared to see a doctor. Depression is surprisingly common!
1 in every 3 people a gp sees, every day, is there because of a mental health problem. so it is technically the most common complaint.
Name of condition: Borderline Personality Disorder (and Post Traumatic Stress Disorder).
Experience: always suffered from severe depression which would last a few months at a time. Never been able to sustain a stable relationship. Started drinking and smoking (cannabis) a lot, and a range of other "self-destructive" behaviours. Overdose attempts/self harm etc. There's a reason behind all this which I don't really want to go into but with mood-stabilising meds and anti-depressants, alongside therapy and counselling, I'm getting better, slowly.
Personal advice to anyone (remember to keep this away from medical advice): please see a doctor for a professional diagnosis. You might also want to check yourself into a psych unit voluntarily if you feel "unsafe" (i.e. prone to suicidal ideation) because being admitted (sectioned) involuntarily is honestly not a nice experience.
If anybody wants to ask anything about BPD, then please feel free.
Experience: always suffered from severe depression which would last a few months at a time. Never been able to sustain a stable relationship. Started drinking and smoking (cannabis) a lot, and a range of other "self-destructive" behaviours. Overdose attempts/self harm etc. There's a reason behind all this which I don't really want to go into but with mood-stabilising meds and anti-depressants, alongside therapy and counselling, I'm getting better, slowly.
Personal advice to anyone (remember to keep this away from medical advice): please see a doctor for a professional diagnosis. You might also want to check yourself into a psych unit voluntarily if you feel "unsafe" (i.e. prone to suicidal ideation) because being admitted (sectioned) involuntarily is honestly not a nice experience.
If anybody wants to ask anything about BPD, then please feel free.
Name of condition: Underactive thyroid
Experience: Was really, really tired constantly even though at some points I couldn't go to college and was sleeping 20 hours a day.Hair and skin both became dry and my voice sounded as if I had a sore throat. Throat swelled up massivley.Always cold. Went to doctors and was tested for both underactive thyroid and glandular fever as they have similar symptoms. Test came back positive for underactive thyroid (hypothyroidim). Had to go to the hospital for test every 3 months for a year. Now have to have a blood test every three months and have to take tablets everyday for the rest of my life.Also massive weight gain. I gained about 3 stone even though I was sleeping all the time and therefore not eating, it also became much more difficult to lose weight until I was on a much higher dosage.
Personal advice to anyone (remember to keep this away from medical advice):
Go see a doctor as soon as you get any of these symptoms, the longer you leave it the more damage can be done. If you are positive for underactive thyroid try not to worry its only a case of tablets and blood tests not too bad. Remember that if you are on thyroxine and you start to feel symptoms again go back to the doctors and ask for another test, be insistent as they can be very dismissive, especially if your young. Once your on a steady dose try and keep your self awake as sometimes you just fall into a sleeping pattern and mistake it as a symptom. Useful website :http://www.btf-thyroid.org/
Experience: Was really, really tired constantly even though at some points I couldn't go to college and was sleeping 20 hours a day.Hair and skin both became dry and my voice sounded as if I had a sore throat. Throat swelled up massivley.Always cold. Went to doctors and was tested for both underactive thyroid and glandular fever as they have similar symptoms. Test came back positive for underactive thyroid (hypothyroidim). Had to go to the hospital for test every 3 months for a year. Now have to have a blood test every three months and have to take tablets everyday for the rest of my life.Also massive weight gain. I gained about 3 stone even though I was sleeping all the time and therefore not eating, it also became much more difficult to lose weight until I was on a much higher dosage.
Personal advice to anyone (remember to keep this away from medical advice):
Go see a doctor as soon as you get any of these symptoms, the longer you leave it the more damage can be done. If you are positive for underactive thyroid try not to worry its only a case of tablets and blood tests not too bad. Remember that if you are on thyroxine and you start to feel symptoms again go back to the doctors and ask for another test, be insistent as they can be very dismissive, especially if your young. Once your on a steady dose try and keep your self awake as sometimes you just fall into a sleeping pattern and mistake it as a symptom. Useful website :http://www.btf-thyroid.org/
Name of condition: Cholinergic Urticaria/Chronic Urticaria
Experience: Constantly itchy, when Exercise, Hot baths/showers, Fever, Occlusive dressings, Eating spicy foods, Emotional stress, Nervous/embarrassed more about it here or here(personal site so take with a pinch of salt!). Had it for 2 years now no signs of it dieing down
Personal advice to anyone (remember to keep this away from medical advice): Go and see a GP, they don't know much about this condition (well the 3 GP's I saw didn't) so best to ask to be referred to a dermatologist. Its hard to live with I know, and I would love to say it will get better soon but doctors tell me its unlikely to go for me. A good site for it is here lots of good information there
Experience: Constantly itchy, when Exercise, Hot baths/showers, Fever, Occlusive dressings, Eating spicy foods, Emotional stress, Nervous/embarrassed more about it here or here(personal site so take with a pinch of salt!). Had it for 2 years now no signs of it dieing down
Personal advice to anyone (remember to keep this away from medical advice): Go and see a GP, they don't know much about this condition (well the 3 GP's I saw didn't) so best to ask to be referred to a dermatologist. Its hard to live with I know, and I would love to say it will get better soon but doctors tell me its unlikely to go for me. A good site for it is here lots of good information there
Name of condition: Epilepsy, bi-polar disorder, farsightedness/astigmatism
Experience:
Epilepsy: Started having petit mal seizures at the age of 10 (lack of concentration, forgetting lots of things, missing sentences), started having grand mal episodes fairly recently.
Bi-polar disorder: Started suffering regular mood changes during college, became depressed and angry one week, high as a kite the next. Hard work!
Eyesight: Started having headaches and blurred vision after using the computer for long periods while at uni.
Personal advice to anyone (remember to keep this away from medical advice):
Experience:
Epilepsy: Started having petit mal seizures at the age of 10 (lack of concentration, forgetting lots of things, missing sentences), started having grand mal episodes fairly recently.
Bi-polar disorder: Started suffering regular mood changes during college, became depressed and angry one week, high as a kite the next. Hard work!
Eyesight: Started having headaches and blurred vision after using the computer for long periods while at uni.
Personal advice to anyone (remember to keep this away from medical advice):
•
If you're worried, see a doctor, that's what they're there for! You don't have to suffer. I'd also recommend eye checks regularly (definitely have one before you start uni), as I went a long time without one and it caused a shed load of problems for me that I now know I didn't have to have!
•
If you're unsure about a treatment, ask! Doctors don't know everything, and they don't know everything about your body. I was taken off my epilepsy meds because they thought I'd grown out of it, though I knew I hadn't. Soon after, I was put back on them!
•
Make sure you have a good support network. I couldn't have made it through without my friends and, most especially, my boyfriend.
35mm_
Name of condition: Borderline Personality Disorder (and Post Traumatic Stress Disorder).
Experience: always suffered from severe depression which would last a few months at a time. Never been able to sustain a stable relationship. Started drinking and smoking (cannabis) a lot, and a range of other "self-destructive" behaviours. Overdose attempts/self harm etc. There's a reason behind all this which I don't really want to go into but with mood-stabilising meds and anti-depressants, alongside therapy and counselling, I'm getting better, slowly.
Personal advice to anyone (remember to keep this away from medical advice): please see a doctor for a professional diagnosis. You might also want to check yourself into a psych unit voluntarily if you feel "unsafe" (i.e. prone to suicidal ideation) because being admitted (sectioned) involuntarily is honestly not a nice experience.
If anybody wants to ask anything about BPD, then please feel free.
Experience: always suffered from severe depression which would last a few months at a time. Never been able to sustain a stable relationship. Started drinking and smoking (cannabis) a lot, and a range of other "self-destructive" behaviours. Overdose attempts/self harm etc. There's a reason behind all this which I don't really want to go into but with mood-stabilising meds and anti-depressants, alongside therapy and counselling, I'm getting better, slowly.
Personal advice to anyone (remember to keep this away from medical advice): please see a doctor for a professional diagnosis. You might also want to check yourself into a psych unit voluntarily if you feel "unsafe" (i.e. prone to suicidal ideation) because being admitted (sectioned) involuntarily is honestly not a nice experience.
If anybody wants to ask anything about BPD, then please feel free.
gosh i felt like id wrote that. scarily similar :P
Ice_Queen
Eyesight: Started having headaches and blurred vision after using the computer for long periods while at uni.
If you're worried, see a doctor, that's what they're there for! You don't have to suffer. I'd also recommend eye checks regularly (definitely have one before you start uni), as I went a long time without one and it caused a shed load of problems for me that I now know I didn't have to have!
If you're worried, see a doctor, that's what they're there for! You don't have to suffer. I'd also recommend eye checks regularly (definitely have one before you start uni), as I went a long time without one and it caused a shed load of problems for me that I now know I didn't have to have!
I'm not sure if I can say this, but:
It's recommended that you have an eye test at least every 2 years. Due to my rather complex issues, (the simple version being, I was born with nerve damage to both eyes and have problems which mean my eyes wobble, plus loads of other rubbish stuff) I have to be tested more often. You'll get told if you need it done more often.
According to my opthamologist, (eye doctor) it's recommended that you take a 15 minute break from the computer every hour.
Titch89
I'm not sure if I can say this, but:
It's recommended that you have an eye test at least every 2 years. Due to my rather complex issues, (the simple version being, I was born with nerve damage to both eyes and have problems which mean my eyes wobble, plus loads of other rubbish stuff) I have to be tested more often. You'll get told if you need it done more often.
According to my opthamologist, (eye doctor) it's recommended that you take a 15 minute break from the computer every hour.
It's recommended that you have an eye test at least every 2 years. Due to my rather complex issues, (the simple version being, I was born with nerve damage to both eyes and have problems which mean my eyes wobble, plus loads of other rubbish stuff) I have to be tested more often. You'll get told if you need it done more often.
According to my opthamologist, (eye doctor) it's recommended that you take a 15 minute break from the computer every hour.
Why wouldn't you be able to say it?
Definitely every two years, but a lot of people don't, especially if they are not aware of any eye problems like in my case.
It's not possible for me to take a 15min break every hour, and I think most eye people are cottoning on to the fact that most bosses would be extremely annoyed if a quarter of the working day was spent at the water cooler
Name of condition:Acute Disseminated Encephalomyelitis (ADEM) with visual problems (difficulty with accommodation/ convergence - brain not recognising signal)
My Symptoms: Dizziness (some vertigo), Visual problems, muscle weakness, tingling, numbness in certain areas sporadically, headaches, extreme fatigue.
Experience: It took a while to get diagnosed as I had to undergo lots of tests to check it wasn't MS (Multiple Sclerosis), especially as I had a number of set backs, which could indicate further inflamation. Basically, I had a viral infection a few weeks before and I'd also just had the MMR (which also causes this). I had a week break from being ill (quite typical) and then I suddenly was incredibly dizzy and my vision was slightly blurred (but I wasn't reading so didn't pay attention to it at the time, thinking it was just an ear infection). The following morning I woke up very dizzy still and noticed that I couldn't read- my eyes wouldn't focus, which led to a trip to the emergency doc who gave me prochlorperazine for the dizziness, but was useless about the eyes ('that shouldn't happen' was about all he said, although advised me to go to eye casualty the following day if I still couldn't see). I went to eye casualty, who thought it was a migraine, but I was getting worse to a point I could barely walk. Being at uni, I asked my parents to come get me, which they did. I saw my GP at home who thought I had nystagmus as an effect of Labrynthitis and was prescribed steroids (as luck would have it, the usual treatment for ADEM). When I still hadn't recovered after a month (could barely walk- it took me ages to just get from one room to another), I was referred to Ear Nose and Throat who ran lots of tests (found that my eyes weren't tracking properly) and referred me for an MRI, just as a precaution. When the MRI showed up some white matter damage (very scary phonecall!), I was placed under a neurologist who did lots more tests (evoked potentials, lunbar puncture, 17 diff blood tests, chest xray) and also referred me to an orthoptist (the first time anyone had actually addressed my eye problems!!). My tests all came back fine, apart from a few bloods, which when re-tested were ok, so the only problem was the MRI, which led to the ADEM tentative diagnosis.
I did have a big set back about a year later in the October, when my left leg went numb and I was very dizzy again, which took me about three weeks to recover from. I had another MRI (brain and spine) which showed no change so I avoided the MS diagnosis, although the neuro did think it was an episode of spinal chord inflammation. I also have had other set backs (dizzy episodes, legs giving way, severe headaches), which initially there was no explanation for- apparently they weren't severe enough to indicate MS, and so I was/ am playing a waiting game for it to either go away or for something to happen again (but I don't think it is MS).
Eye problems: Lots of difficulty getting this diagnosed or recognised! At my local eye hospital they diagnosed me (after lots of people coming to see me because I'm an 'interesting' case and apparently my symptoms are v v rare) with paralysis of accommodation, but didn't know how to help me, so I was referred on and am now under Moorfields, who at least have some experience with people with my post-viral sort of visual difficulties.
Personal advice to anyone (remember to keep this away from medical advice):
MRI SCAN- What to Expect:
If you're claustaphobic ask for a sedative, but I didn't find them that bad. If it's a brain scan, you don't go in too far into the tube and can still see out a bit, but for the spine you have a board strapped to you (as well as the cage bit over your head), which is a bit more claustaphobic. The radiologist can talk to you though at times and ask if you are ok. You're given an alarm you can squeeze. They also put music on for you (although as the machine is loud you can't hear much of this). It's worth taking your own CD with you if you can!
Also, don't wear anything mettle- it interferes with the machine. Girls, wear a support top if you can instead of a bra, as it saves you having to change into a gown. A long top with leggings as well as this had always been what I've worn!
LUNBAR PUNCTURE- What to Expect:
The proceedure itself is ok, albeit slightly uncomfortable. You're laying on your side when they put the needle in. Afterwards my back was a bit sore and boy did I get the master of headaches! Definitely stay lying down for as long as you can! I think that was a mistake I made!
Other Advice:
Coping with fatigue can be horrible and incredibly frustrating! Try to keep in contact with your friends, although you've obviously got to limit the time so you don't exhaust yourself. Try to get into a routine. Take vitamins (I don't know how much they help but worth a try). Try to stay positive. Try alternative therapies (I've tried hypno, cranial osteopathy, pilates, etc). The big don't is: DON'T DO TOO MUCH. Also, look up THE SPOON THEORY. Incredibly useful thing to help you to explain how you feel to other people.
Join a support group. Having a rare condition can be frustrating as there are few people who have experienced it, but can join a group close to it (I've joined an MS forum, for example), and create one on Facebook. I was able to talk to a few people about our experiences, which has been very useful, even if it's just to rant.
Okay, so being ill for a long time might change your life and it might be completely different from what you expected, but realise that there are positives. With me, for example, I was going away for uni but I had to come home. After a year of rest, I went to my local university. I may not be able to have the same social life as other people, but I do have a lot of friends from home originally, who have really helped me through this difficult time. I also think the uni I'm at now is better for me (in terms of courses) than the one I was at. As I'm living at home, I'm also able to have more money than I would otherwise have.
If you need to, use the Disabled Student Allowance- this has been amazing and helped me so much! The university disability people have also been incredibly supportive.
KNOW YOUR LIMITS. This is something I'm still learning, especially with my eyes and headaches. But stop when you need to (easier said than done, I know!)
If anyone wants to chat about this or a condition similar or anything, please feel free to PM me. I know that sometimes just having someone to listen to can help.
Take care :-)
My Symptoms: Dizziness (some vertigo), Visual problems, muscle weakness, tingling, numbness in certain areas sporadically, headaches, extreme fatigue.
Experience: It took a while to get diagnosed as I had to undergo lots of tests to check it wasn't MS (Multiple Sclerosis), especially as I had a number of set backs, which could indicate further inflamation. Basically, I had a viral infection a few weeks before and I'd also just had the MMR (which also causes this). I had a week break from being ill (quite typical) and then I suddenly was incredibly dizzy and my vision was slightly blurred (but I wasn't reading so didn't pay attention to it at the time, thinking it was just an ear infection). The following morning I woke up very dizzy still and noticed that I couldn't read- my eyes wouldn't focus, which led to a trip to the emergency doc who gave me prochlorperazine for the dizziness, but was useless about the eyes ('that shouldn't happen' was about all he said, although advised me to go to eye casualty the following day if I still couldn't see). I went to eye casualty, who thought it was a migraine, but I was getting worse to a point I could barely walk. Being at uni, I asked my parents to come get me, which they did. I saw my GP at home who thought I had nystagmus as an effect of Labrynthitis and was prescribed steroids (as luck would have it, the usual treatment for ADEM). When I still hadn't recovered after a month (could barely walk- it took me ages to just get from one room to another), I was referred to Ear Nose and Throat who ran lots of tests (found that my eyes weren't tracking properly) and referred me for an MRI, just as a precaution. When the MRI showed up some white matter damage (very scary phonecall!), I was placed under a neurologist who did lots more tests (evoked potentials, lunbar puncture, 17 diff blood tests, chest xray) and also referred me to an orthoptist (the first time anyone had actually addressed my eye problems!!). My tests all came back fine, apart from a few bloods, which when re-tested were ok, so the only problem was the MRI, which led to the ADEM tentative diagnosis.
I did have a big set back about a year later in the October, when my left leg went numb and I was very dizzy again, which took me about three weeks to recover from. I had another MRI (brain and spine) which showed no change so I avoided the MS diagnosis, although the neuro did think it was an episode of spinal chord inflammation. I also have had other set backs (dizzy episodes, legs giving way, severe headaches), which initially there was no explanation for- apparently they weren't severe enough to indicate MS, and so I was/ am playing a waiting game for it to either go away or for something to happen again (but I don't think it is MS).
Eye problems: Lots of difficulty getting this diagnosed or recognised! At my local eye hospital they diagnosed me (after lots of people coming to see me because I'm an 'interesting' case and apparently my symptoms are v v rare) with paralysis of accommodation, but didn't know how to help me, so I was referred on and am now under Moorfields, who at least have some experience with people with my post-viral sort of visual difficulties.
Personal advice to anyone (remember to keep this away from medical advice):
MRI SCAN- What to Expect:
If you're claustaphobic ask for a sedative, but I didn't find them that bad. If it's a brain scan, you don't go in too far into the tube and can still see out a bit, but for the spine you have a board strapped to you (as well as the cage bit over your head), which is a bit more claustaphobic. The radiologist can talk to you though at times and ask if you are ok. You're given an alarm you can squeeze. They also put music on for you (although as the machine is loud you can't hear much of this). It's worth taking your own CD with you if you can!
Also, don't wear anything mettle- it interferes with the machine. Girls, wear a support top if you can instead of a bra, as it saves you having to change into a gown. A long top with leggings as well as this had always been what I've worn!
LUNBAR PUNCTURE- What to Expect:
The proceedure itself is ok, albeit slightly uncomfortable. You're laying on your side when they put the needle in. Afterwards my back was a bit sore and boy did I get the master of headaches! Definitely stay lying down for as long as you can! I think that was a mistake I made!
Other Advice:
Coping with fatigue can be horrible and incredibly frustrating! Try to keep in contact with your friends, although you've obviously got to limit the time so you don't exhaust yourself. Try to get into a routine. Take vitamins (I don't know how much they help but worth a try). Try to stay positive. Try alternative therapies (I've tried hypno, cranial osteopathy, pilates, etc). The big don't is: DON'T DO TOO MUCH. Also, look up THE SPOON THEORY. Incredibly useful thing to help you to explain how you feel to other people.
Join a support group. Having a rare condition can be frustrating as there are few people who have experienced it, but can join a group close to it (I've joined an MS forum, for example), and create one on Facebook. I was able to talk to a few people about our experiences, which has been very useful, even if it's just to rant.
Okay, so being ill for a long time might change your life and it might be completely different from what you expected, but realise that there are positives. With me, for example, I was going away for uni but I had to come home. After a year of rest, I went to my local university. I may not be able to have the same social life as other people, but I do have a lot of friends from home originally, who have really helped me through this difficult time. I also think the uni I'm at now is better for me (in terms of courses) than the one I was at. As I'm living at home, I'm also able to have more money than I would otherwise have.
If you need to, use the Disabled Student Allowance- this has been amazing and helped me so much! The university disability people have also been incredibly supportive.
KNOW YOUR LIMITS. This is something I'm still learning, especially with my eyes and headaches. But stop when you need to (easier said than done, I know!)
If anyone wants to chat about this or a condition similar or anything, please feel free to PM me. I know that sometimes just having someone to listen to can help.
Take care :-)
Name of condition: Celiac disease (Gluten allergy)
Celiac disease is an allergy to gluten - not an intolerance. It can develop at any time, and it's nearly always random - but there can sometimes be a genetic link. There is no cure, but if you remove gluten from your diet, all of the symptoms disappear and you can lead a perfectly normal, pain-free life.
Experience: 2 years ago, I'd been having really bad stomach pains (and other symptoms - see below) for several months and there didn't seem to be any specific pattern to it. I went to the doctors several times, had blood tests etc. and eventually they suggested keeping a food diary to see if I could find a trigger. I tried cutting out milk, then wheat, then gluten, and finally my stomach pains stopped.
Symptoms: Whenever I ate something containing gluten, 1-2 hours later, I would get extremely bad stomach pains. They are kind of like very strong stomach cramps, that come and go, but with constant background pain. It was really quite debilitating. All I could do was to rock myself gently back and forwards to try to ease the pain. This would last for several hours, and then I'd be left with a very sore and tender stomach for a few days. Also, I tended to get quite bad diarrhea aswell and was sometimes sick.
You can still eat normally, but I didn't ever really want to after a 'gluten attack' since my stomach hurt too much.
If you have been having these problems for a long time, then your intestine could be damaged, and you might lose weight, but this isn't always a guarenteed symptom.
Since excluding gluten from my diet, my symptoms have improved completely. I now have no stomach pains at all, unless I accidently eat something containing gluten e.g. in a restaurant.
It took a few weeks to recover fully at the beginning, but now I feel perfectly fine. It's a little hard adjusting to a gluten free diet at first, but after time, you will find new things that you can eat, and substitutes for your normal foods. And one positive has come out of it - now I am cooking more and trying to create new dishes for myself!
Personal advice to anyone (remember to keep this away from medical advice): It can take a long time to get diagnosed with celiac disease, and so keep going back to the doctors if you think you might have it. They might give you blood tests, or test your intestine to diagnose you, or you might be referred to a specialist at a hospital, but don't worry, your doctor will tell you everything you need to know.
However a lot of the symptoms are very similar to other illnesses/allergies/intolerances, so if you exclude gluten from your diet and it doesn't make a difference, try something else. Don't give up - you don't have to live with the pain!
It's difficult to know what you can and can't eat, but make sure you check the packaging of everything before you put it in your mouth, because even things you wouldn't expect to have gluten sometimes do. E.g. some brands or crisps and sweets, some drinks etc. You cannot eat wheat, rye, barley and oats - and this includes things made from these grains, such as pasta, pizza, cakes, pastries, malt etc. Most supermarkets now stock a good range of 'free from' items, and although some of them taste disgusting, some are pretty good. (Check out 'Dietary specials' pizza, and 'Genius' bread.) Keloggs cereals are a no go, but quite a few supermarket own brand cereals are safe to eat (and much tastier than the 'free from' ones.)
It can be very difficult eating out, because quite a lot of restaurants don't know about it. You should explain to them exactly what you can't have and make sure the waiter tells the chef. I would recommend printing (free) cards off this site: http://www.celiactravel.com/restaurant-cards.html
This way, you can make sure that you're not relying on anyone to relay your information, and they are perfect for when you're going abroad and are worried about food.
It can feel very daunting if you have been diagnosed with celiac disease, but try not to worry about all the foods you now cannot eat. There are lots of substitutes available, and the selections are becoming better all the time. Try instead to focus on the positives - you now know what the problem is, and although it cannot be cured, you don't have to live with the consequences of it anymore.
If anyone wants to ask me anything about this, then I'm more than happy for you to PM me. I hope this profile is of help to people.
Celiac disease is an allergy to gluten - not an intolerance. It can develop at any time, and it's nearly always random - but there can sometimes be a genetic link. There is no cure, but if you remove gluten from your diet, all of the symptoms disappear and you can lead a perfectly normal, pain-free life.
Experience: 2 years ago, I'd been having really bad stomach pains (and other symptoms - see below) for several months and there didn't seem to be any specific pattern to it. I went to the doctors several times, had blood tests etc. and eventually they suggested keeping a food diary to see if I could find a trigger. I tried cutting out milk, then wheat, then gluten, and finally my stomach pains stopped.
Symptoms: Whenever I ate something containing gluten, 1-2 hours later, I would get extremely bad stomach pains. They are kind of like very strong stomach cramps, that come and go, but with constant background pain. It was really quite debilitating. All I could do was to rock myself gently back and forwards to try to ease the pain. This would last for several hours, and then I'd be left with a very sore and tender stomach for a few days. Also, I tended to get quite bad diarrhea aswell and was sometimes sick.
You can still eat normally, but I didn't ever really want to after a 'gluten attack' since my stomach hurt too much.If you have been having these problems for a long time, then your intestine could be damaged, and you might lose weight, but this isn't always a guarenteed symptom.
Since excluding gluten from my diet, my symptoms have improved completely. I now have no stomach pains at all, unless I accidently eat something containing gluten e.g. in a restaurant.
It took a few weeks to recover fully at the beginning, but now I feel perfectly fine. It's a little hard adjusting to a gluten free diet at first, but after time, you will find new things that you can eat, and substitutes for your normal foods. And one positive has come out of it - now I am cooking more and trying to create new dishes for myself!Personal advice to anyone (remember to keep this away from medical advice): It can take a long time to get diagnosed with celiac disease, and so keep going back to the doctors if you think you might have it. They might give you blood tests, or test your intestine to diagnose you, or you might be referred to a specialist at a hospital, but don't worry, your doctor will tell you everything you need to know.
However a lot of the symptoms are very similar to other illnesses/allergies/intolerances, so if you exclude gluten from your diet and it doesn't make a difference, try something else. Don't give up - you don't have to live with the pain!
It's difficult to know what you can and can't eat, but make sure you check the packaging of everything before you put it in your mouth, because even things you wouldn't expect to have gluten sometimes do. E.g. some brands or crisps and sweets, some drinks etc. You cannot eat wheat, rye, barley and oats - and this includes things made from these grains, such as pasta, pizza, cakes, pastries, malt etc. Most supermarkets now stock a good range of 'free from' items, and although some of them taste disgusting, some are pretty good. (Check out 'Dietary specials' pizza, and 'Genius' bread.) Keloggs cereals are a no go, but quite a few supermarket own brand cereals are safe to eat (and much tastier than the 'free from' ones.)
It can be very difficult eating out, because quite a lot of restaurants don't know about it. You should explain to them exactly what you can't have and make sure the waiter tells the chef. I would recommend printing (free) cards off this site: http://www.celiactravel.com/restaurant-cards.html
This way, you can make sure that you're not relying on anyone to relay your information, and they are perfect for when you're going abroad and are worried about food.
It can feel very daunting if you have been diagnosed with celiac disease, but try not to worry about all the foods you now cannot eat. There are lots of substitutes available, and the selections are becoming better all the time. Try instead to focus on the positives - you now know what the problem is, and although it cannot be cured, you don't have to live with the consequences of it anymore.
If anyone wants to ask me anything about this, then I'm more than happy for you to PM me.
I hope this profile is of help to people.Name of condition: Depersonalization/Dissociation Dissorder, Anorexia/Bulimia... but I guess medically it count's as Eating Disorder Not Otherwise Specified, EDNOS) and Self Harm
Experience:
I've had Depersonalization Disorder since i was really little, only I never realised that it was a "problem" until a year or two ago. It got worse within a series of days. I don't feel real, and it's almost like I'm watching the world through someone elses eyes, like watching TV. Noises sounds tinny and I have trouble picking things up sometimes, or just keeping a hold of things (I'm also prone to misjudging distance and slamming half my body into a door jamb!) because I can't understand how I'm holding them or why, I don't feel like my body is connected to the thinky bit in my head
As a child I didn't feel "real" half the time, I was constantly being reminded to "pay attention" or just listen at school. I was quite too and hated loud noises or group games. The first time it really got to me was in assembly in primary school, I came out of an episode and everyone around me seemed to snap towards me, like I'd regained my focus, the voices got louder and I just sat and cried.
I really had no idea that what I was experiencing wasn't normal, I was prone to daydreaming and loved playing on my own. I have a really good imagination that I swear has developed from just being trapped in my own head for days. I was also considered pretty clever, despite teachers accusing me of not paying attention or contributing to lesson. I aced SATS and GCSE's, but at A Level I just crashed. I started having nightmares and flashbacks to events when I was little (I wont say what) and I just felt so self absorbed and disgusting that nothing would stay in. I had councelling with a lovely woman, Ann. She talked to me about anything and everything, something I realised no one had ever done before, with friend's and family it was always about work, fall outs or stuff like that
I developed an eating disorder because of the above, I find it hard to feel things emotionally when I dissociate, there literally is nothing. I was in the middle of a pretty bad episode when my Nana died, I felt nothing but anger because I couldn't cry or grieve but I knew that I should be like evryone else was. I was the only one out of my circle of friends who seemed to be unaffected by the abuse we received at school, it really didn't bother me at all the things they said or did to us... but I know it should have and I tried to make it affect me by forcing myself to cry and just acting depressive like my friends, because that's what I thought I should be doing
I would skip meals because I could feel hunger, as strange as that sounds it's what kept me "grounded" and in control. But then my Depersonalization episodes got worse and one particular one lasted for over a month. Starving barely chipped the ice, and so I started to self harm because I could feel that too, and the sick sensation in my stomach when I looked at my arms.
I somehow got it into my head when I was about 15 that the reason I kept having these episode was because i was fat... and ugly and that it was minds way of escaping having to deal with my pathetic self. I started throwing up everything I ate, and sometimes just downing water and throwing that back up. I went through a really destructive phase and tried to overdose but failed miserably.
My mum saw the cuts but ignored it, she once tried to speak to me about my depressive moods but called it teenage phase. Even when I sought out a psychiatrist on my own she didn't believe it was a problem.
Personal advice to anyone (remember to keep this away from medical advice):
I still struggle with my eating habits. I know that going to uni in a couple of days is going to be a challenge, but I don't really care at the moment.
The only thing that helps my Depersonalization disorder is music and reading. I have tried to focus on objects when people are talking to me and that works if I have the energy to do it, looking at people when they talk to me just makes it worse. I can't look people in the eye for long either.
I could listen to music forever, it really helps and the louder the better. Going out into town with friends is much better than meeting them at the cinema because I know I will be more grounded and socialble in town with all the loud music. Strangely loud noises (like people shouting or talking over things) still make me want to cry... but music can be as loud as anything
Writing helped me get my head together too, I write poetry and whatever else pours out late at night. I would die if anyone ever found the scrap books!!
Experience:
I've had Depersonalization Disorder since i was really little, only I never realised that it was a "problem" until a year or two ago. It got worse within a series of days. I don't feel real, and it's almost like I'm watching the world through someone elses eyes, like watching TV. Noises sounds tinny and I have trouble picking things up sometimes, or just keeping a hold of things (I'm also prone to misjudging distance and slamming half my body into a door jamb!) because I can't understand how I'm holding them or why, I don't feel like my body is connected to the thinky bit in my head
As a child I didn't feel "real" half the time, I was constantly being reminded to "pay attention" or just listen at school. I was quite too and hated loud noises or group games. The first time it really got to me was in assembly in primary school, I came out of an episode and everyone around me seemed to snap towards me, like I'd regained my focus, the voices got louder and I just sat and cried.
I really had no idea that what I was experiencing wasn't normal, I was prone to daydreaming and loved playing on my own. I have a really good imagination that I swear has developed from just being trapped in my own head for days. I was also considered pretty clever, despite teachers accusing me of not paying attention or contributing to lesson. I aced SATS and GCSE's, but at A Level I just crashed. I started having nightmares and flashbacks to events when I was little (I wont say what) and I just felt so self absorbed and disgusting that nothing would stay in. I had councelling with a lovely woman, Ann. She talked to me about anything and everything, something I realised no one had ever done before, with friend's and family it was always about work, fall outs or stuff like that
I developed an eating disorder because of the above, I find it hard to feel things emotionally when I dissociate, there literally is nothing. I was in the middle of a pretty bad episode when my Nana died, I felt nothing but anger because I couldn't cry or grieve but I knew that I should be like evryone else was. I was the only one out of my circle of friends who seemed to be unaffected by the abuse we received at school, it really didn't bother me at all the things they said or did to us... but I know it should have and I tried to make it affect me by forcing myself to cry and just acting depressive like my friends, because that's what I thought I should be doing
I would skip meals because I could feel hunger, as strange as that sounds it's what kept me "grounded" and in control. But then my Depersonalization episodes got worse and one particular one lasted for over a month. Starving barely chipped the ice, and so I started to self harm because I could feel that too, and the sick sensation in my stomach when I looked at my arms.
I somehow got it into my head when I was about 15 that the reason I kept having these episode was because i was fat... and ugly and that it was minds way of escaping having to deal with my pathetic self. I started throwing up everything I ate, and sometimes just downing water and throwing that back up. I went through a really destructive phase and tried to overdose but failed miserably.
My mum saw the cuts but ignored it, she once tried to speak to me about my depressive moods but called it teenage phase. Even when I sought out a psychiatrist on my own she didn't believe it was a problem.
Personal advice to anyone (remember to keep this away from medical advice):
I still struggle with my eating habits. I know that going to uni in a couple of days is going to be a challenge, but I don't really care at the moment.
The only thing that helps my Depersonalization disorder is music and reading. I have tried to focus on objects when people are talking to me and that works if I have the energy to do it, looking at people when they talk to me just makes it worse. I can't look people in the eye for long either.
I could listen to music forever, it really helps and the louder the better. Going out into town with friends is much better than meeting them at the cinema because I know I will be more grounded and socialble in town with all the loud music. Strangely loud noises (like people shouting or talking over things) still make me want to cry... but music can be as loud as anything
Writing helped me get my head together too, I write poetry and whatever else pours out late at night. I would die if anyone ever found the scrap books!!
Name of condition: Compulsive Skin Picking aka Dermatillomania / CSP
This condition causes you to pick at skin excessively (mostly during times of stress/boredom) It includes picking at scabs,blemishes,skin imperfections...
Experience: Couldn t stop picking at my skin (pimples,blackheads,whiteheads...) This was ruining my life & my skin.
Personal advice to anyone:
If you cannot stop it by will power I STRONGLY advise you to get free help here: http://stoppickingonme.com/bb/
This is a mental illness that can lead to complications due to repeated infection.
You can see if you have this problem: Dermatillomania / CSP Test: http://www.ocdla.com/dermatillomania-compulsive-skin-picking-test.html
This disorder falls under OCD & self harm.You don t have to suffer,you can get free help.
This condition causes you to pick at skin excessively (mostly during times of stress/boredom) It includes picking at scabs,blemishes,skin imperfections...
Experience: Couldn t stop picking at my skin (pimples,blackheads,whiteheads...) This was ruining my life & my skin.
Personal advice to anyone:
If you cannot stop it by will power I STRONGLY advise you to get free help here: http://stoppickingonme.com/bb/
This is a mental illness that can lead to complications due to repeated infection.
You can see if you have this problem: Dermatillomania / CSP Test: http://www.ocdla.com/dermatillomania-compulsive-skin-picking-test.html
This disorder falls under OCD & self harm.You don t have to suffer,you can get free help.
Original post by tom_tom_tom
Name of condition: Sinus Infection
Experience: Recently
Personal advice to anyone (remember to keep this away from medical advice): I have has a sinus infection for two months now. I have pain and pressure behind my nose and eye. My nose is blocked on the left side and my throat is very sore. When I lie down at night, I have a drip going down the back of my throat, which tastes very sweet. I have also had so many antibiotics and they don't seem to cure this infection. I am now going to see an ENT specialist. Other symptoms of this are headaches all around, neck and shoulder pain, nasal congestion, chest congestion, fever, sore eyes, irritated nasal passages, and a desire to sleep.
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