carrie's CVS Story
Hey peeps, I’m Carrie. I am 27, from Oxfordshire UK and have been battling this for 2 years.
It is really hard in the UK as most doctors do not seem to understand this illness. I have gone through every test going, (Barium, CT, X Ray, EEG, MRI, Gastroscopy, PH Monitoring) and more to come and still have no answers. I know it is CVS as I am me, but I guess they must go through the steps. I am currently with neurology and gastroenterology departments but seem to be getting nowhere. I live on my own and can't drive and the hospital is a long way away so it's even hard to get to appointments. I am unable to cope for myself a lot of the time now.
It started 2 years ago, Overnight I went from being able to eat a takeaway to literally being able to eat nothing and having random attacks of being sick even when I wasn't trying to eat. I was having an incredibly stressful time and I am fairly sure stress exacerbates this, but I know myself when I have an attack it is involuntary. I spend my life dehydrated and have obviously lost weight, struggle to keep any food down and it has had a colossal impact on my life. I am now on ESA and housing benefit and cannot work which I hate, but this thing has rendered me unable to get out of bed most days or be able to wash or do anything. I have diagnoses ongoing but the whole thing is taking ages and my situation is getting worse. I have Leukopenia and my immune system is none-existent, severe psoriasis to the point of bleeding, about 10 other things and I have basically no social life as a result of this as I never have any energy.
I have tried everything under the sun to make this illness better.
I am vegan. I have always been such a healthy eater and exercised so this seems so unfair.
Cut out soya gluten a million things
Nothing seems to work
I think what I find hardest about this illness is the loneliness
It has cost me my last 3 relationships
I just want to make people aware what a colossal impact this has on people's lives and how strong we all are for going through it.
Peace and hope everyone had a good weekend
❤
Update Feb 2018
I thought I would take the opportunity to revise this from my original account as I believe it shows that even though this illness is horrendous, we can have lives too and fight this. People I know who have this are some of the strongest people I have ever met.
I am now 28 and have had this over 3 years.
Overnight I went from being able to eat a takeaway to literally being able to eat nothing and having random attacks of being sick even when I wasn't trying to eat.
It took me over 2 years in the UK medical system to get diagnosed - most doctors do not seem to understand this illness. When I was finally diagnosed I lived in Oxford, UK. I went through every test going – Barium swallowing, CT, X Ray, EEG, MRI, Gastroscopy, PH Monitoring and was with neurology, gastroenterology and eventually dermatology departments as combined with my immune system disorder (I have Reynaud’s) being ill all the time compromised my health to the extent I developed 80% body psoriasis. I was miserable – in pain all the time, hated my skin, and couldn't eat at-all. Mine is particularly severe – it is daily, even without adding food into the equation. I was told liquids only and advised to have ensure supplements as my oesophagus was so damaged. (Later these were blacklisted). I went to ridiculous lengths to minimise the damage this was doing on my body – I went vegan (and still am as I find it is better for health) and to this day must skip eating regularly otherwise my ability to work is totally compromised.
In the UK I found it impossible to work. A liquid diet does not provide much energy – CVS has greatly affected my work history and lost me many jobs and relationships. I believe honestly that a bad relationship and the stress of it, combined with financial worries and work at the time and the fact that by nature I am a worrier – my CVS was largely brought on by stress and at this stage my digestive system is so damaged that I doubt it will work properly again realistically.
I lived on my own in the UK, couldn't drive and found it very hard to get to appointments and cope for myself. I was completely miserable and isolated. CVS can be a very lonely disease. I ended up claiming ESA, PIP (which I had to take to tribunal as CVS is not taken very seriously as a medical disorder by the UK benefits system) and housing benefit which I found difficult and highly damaging to my self-esteem as I felt I was worth so much more than being reduced to that. Even with a diagnosis nothing was working.
One day during Summer last year, having been off work for a long time and to be quite honest incredibly sick of living my life in hospitals (which seemed to help in no way whatsoever) I was offered a job – totally out of the blue – to work as a teacher in China.
At the time, I and a lot of people were sceptical of whether this was a good decision. CVS is incredibly hard to deal with – never mind being on the other side of the world and working as a teacher. However, I was sick of my situation. I felt in my heart it was the right decision. I had nothing to lose after all.
I have been living here in Shenzhen, China now since August 2017. CVS continues to make my life difficult – over here there is no awareness of the illness. I pretty much just cope with it by having a liquid diet and trying to keep positive. This sounds naive – but helping people has in some ways helped my confidence which has made me a lot happier, and the climate has improved my skin nearly totally. I have lost a job through illnesses related to CVS – but I believe my decision to move here was a good one. The severity of the acid is not as bad, and I am happier in myself. The weight loss through having this illness is a problem – even in China I am considered thin. However, I have learnt that you have to cope with what has been given to you and that life is here to test us – moving here is the best decision I have ever made. I now live with my boyfriend which is a long way from the pain and misery I was living in last year.
I thought I would share this to show people even though suffering with this illness is one of the hardest challenges we can go through – it is possible to have some shred of a life.
We are all warriors.
Peace and hope to everyone
I thought I would take the opportunity to revise this from my original account as I believe it shows that even though this illness is horrendous, we can have lives too and fight this. People I know who have this are some of the strongest people I have ever met.
I am now 28 and have had this over 3 years.
Overnight I went from being able to eat a takeaway to literally being able to eat nothing and having random attacks of being sick even when I wasn't trying to eat.
It took me over 2 years in the UK medical system to get diagnosed - most doctors do not seem to understand this illness. When I was finally diagnosed I lived in Oxford, UK. I went through every test going – Barium swallowing, CT, X Ray, EEG, MRI, Gastroscopy, PH Monitoring and was with neurology, gastroenterology and eventually dermatology departments as combined with my immune system disorder (I have Reynaud’s) being ill all the time compromised my health to the extent I developed 80% body psoriasis. I was miserable – in pain all the time, hated my skin, and couldn't eat at-all. Mine is particularly severe – it is daily, even without adding food into the equation. I was told liquids only and advised to have ensure supplements as my oesophagus was so damaged. (Later these were blacklisted). I went to ridiculous lengths to minimise the damage this was doing on my body – I went vegan (and still am as I find it is better for health) and to this day must skip eating regularly otherwise my ability to work is totally compromised.
In the UK I found it impossible to work. A liquid diet does not provide much energy – CVS has greatly affected my work history and lost me many jobs and relationships. I believe honestly that a bad relationship and the stress of it, combined with financial worries and work at the time and the fact that by nature I am a worrier – my CVS was largely brought on by stress and at this stage my digestive system is so damaged that I doubt it will work properly again realistically.
I lived on my own in the UK, couldn't drive and found it very hard to get to appointments and cope for myself. I was completely miserable and isolated. CVS can be a very lonely disease. I ended up claiming ESA, PIP (which I had to take to tribunal as CVS is not taken very seriously as a medical disorder by the UK benefits system) and housing benefit which I found difficult and highly damaging to my self-esteem as I felt I was worth so much more than being reduced to that. Even with a diagnosis nothing was working.
One day during Summer last year, having been off work for a long time and to be quite honest incredibly sick of living my life in hospitals (which seemed to help in no way whatsoever) I was offered a job – totally out of the blue – to work as a teacher in China.
At the time, I and a lot of people were sceptical of whether this was a good decision. CVS is incredibly hard to deal with – never mind being on the other side of the world and working as a teacher. However, I was sick of my situation. I felt in my heart it was the right decision. I had nothing to lose after all.
I have been living here in Shenzhen, China now since August 2017. CVS continues to make my life difficult – over here there is no awareness of the illness. I pretty much just cope with it by having a liquid diet and trying to keep positive. This sounds naive – but helping people has in some ways helped my confidence which has made me a lot happier, and the climate has improved my skin nearly totally. I have lost a job through illnesses related to CVS – but I believe my decision to move here was a good one. The severity of the acid is not as bad, and I am happier in myself. The weight loss through having this illness is a problem – even in China I am considered thin. However, I have learnt that you have to cope with what has been given to you and that life is here to test us – moving here is the best decision I have ever made. I now live with my boyfriend which is a long way from the pain and misery I was living in last year.
I thought I would share this to show people even though suffering with this illness is one of the hardest challenges we can go through – it is possible to have some shred of a life.
We are all warriors.
Peace and hope to everyone
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