Hey Everyone,
I am writing to tell you my story and how i am really struggling.
I was diagnosed with Crohn's disease around 4 years ago when I was 19. Over that time I have tried a number of medications, but started with steroids, which did ease symptoms on a high dose but when the dosage was lowered, I had another flair.
So I had to come out of work and I was out of work for around 2 years, While I tried many courses of steroids (12 week course), then tried Azathioprine, that didn't work either. Then I proceeded onto Infliximab (infusion) which I had every 8 weeks, the infliximab worked and I was able to go back to work.
Although treatment began to be less effective and symptoms started to come back around the 6 weeks mark, so in every 8 week period I had around 3-4 weeks of symptoms, which made working very difficult.
My consultant decided to put me on a drug trial, which I started just recently (around 2 weeks ago) The drugs haven't started to work yet, I don't know if they will. I have had to have the past few weeks off work as I feel terrible. Horrible pains, aching all over, no energy, loss of appetite and going toilet around 8-15 times a day (I am also taking prescription Co-Codamol).
Last time when I could not work I did not claim any benefits, I did apply and was asked to come for an interview, but after looking around forums, it seems very difficult to get any help, so I had to struggle and my mam had to struggle.
Also since going back to work, I have had to use at least half of my days holiday on hospital appointments and when I feel to ill, I have had to use my holidays otherwise I would not be paid, which would be at least 10-15 days of the year loss of earnings, at least.
I have been off work for the last few weeks, so by now I have eaten through all of my holidays, plus I don't know when I will be able to go back. If this drug does not work and I resort back to Infliximab, then I still feel terrible for 3-4 weeks every 8 weeks.
I am just so tired now and sometimes just thing what is the point, In a world of pain most of the time, feeling rubbish, don't really get to go out anymore, can't have a holidays as I have to use most of them, probably won't get any help/benefits while being off work.
On top of that I hate my job, I started an apprentice in Engineering, as I didn't know what I wanted to do when I was 16, the collage had trouble finding placements, so they just stuck me in a hell hole, which has no Health and Safety at all, which is hard to believe that the college would put you in a place like that, especially when the majority of the Engineering course wad about Health and Safety. My boss even jokes about if the Health and Safety officer comes to check the place would be shut down on the spot.
I have struggled finding job, within Engineering due to I was already in a placement and not many people was hiring, plus because of the Crohn's, the amount of time I had off work ect..
I did want to go on another course, open university, maybe even work in the Health sector for supporting Crohn's patients, as I do love helping people or IT based/SEO as I love tech, But after I was on the road to recovery (Sort of) with the Infliximab, I was 22, which makes it hard to find any funding.
I am just stuck here in this rubbish place, I feel like a spider trapped in a bath and I just can't seem to clime out. I am just so tired, in pain, feeling rubbish and top it off with a job that I hate. I have also considered a business of my own, something which a could run from home, which would be amazing as I feel rubbish and don't feel like leaving the house most of the time anyway. or maybe even a job which is a lot less labour intensive, in a office, so at least when there is pain I don't have to be moving around all the time, but it requires training, and money.
So once again I am the spider, I have squirmed, tried to climb, tried to get out so many times that I am just on the verge of giving up.
Right now I am taking the study drug and Co-Codamol (30/500) to try and ease the pain.
My symptoms right now are what I mentioned earlier in the story, plus a fever (feeling hot/sweaty and sick), I also feel quite dizzy as well. Just wondering has anyone got any advice on Sepsis, as this fever and dizziness are not that normal for me.
Anyway that's my story,
Cameron
I am writing to tell you my story and how i am really struggling.
I was diagnosed with Crohn's disease around 4 years ago when I was 19. Over that time I have tried a number of medications, but started with steroids, which did ease symptoms on a high dose but when the dosage was lowered, I had another flair.
So I had to come out of work and I was out of work for around 2 years, While I tried many courses of steroids (12 week course), then tried Azathioprine, that didn't work either. Then I proceeded onto Infliximab (infusion) which I had every 8 weeks, the infliximab worked and I was able to go back to work.
Although treatment began to be less effective and symptoms started to come back around the 6 weeks mark, so in every 8 week period I had around 3-4 weeks of symptoms, which made working very difficult.
My consultant decided to put me on a drug trial, which I started just recently (around 2 weeks ago) The drugs haven't started to work yet, I don't know if they will. I have had to have the past few weeks off work as I feel terrible. Horrible pains, aching all over, no energy, loss of appetite and going toilet around 8-15 times a day (I am also taking prescription Co-Codamol).
Last time when I could not work I did not claim any benefits, I did apply and was asked to come for an interview, but after looking around forums, it seems very difficult to get any help, so I had to struggle and my mam had to struggle.
Also since going back to work, I have had to use at least half of my days holiday on hospital appointments and when I feel to ill, I have had to use my holidays otherwise I would not be paid, which would be at least 10-15 days of the year loss of earnings, at least.
I have been off work for the last few weeks, so by now I have eaten through all of my holidays, plus I don't know when I will be able to go back. If this drug does not work and I resort back to Infliximab, then I still feel terrible for 3-4 weeks every 8 weeks.
I am just so tired now and sometimes just thing what is the point, In a world of pain most of the time, feeling rubbish, don't really get to go out anymore, can't have a holidays as I have to use most of them, probably won't get any help/benefits while being off work.
On top of that I hate my job, I started an apprentice in Engineering, as I didn't know what I wanted to do when I was 16, the collage had trouble finding placements, so they just stuck me in a hell hole, which has no Health and Safety at all, which is hard to believe that the college would put you in a place like that, especially when the majority of the Engineering course wad about Health and Safety. My boss even jokes about if the Health and Safety officer comes to check the place would be shut down on the spot.
I have struggled finding job, within Engineering due to I was already in a placement and not many people was hiring, plus because of the Crohn's, the amount of time I had off work ect..
I did want to go on another course, open university, maybe even work in the Health sector for supporting Crohn's patients, as I do love helping people or IT based/SEO as I love tech, But after I was on the road to recovery (Sort of) with the Infliximab, I was 22, which makes it hard to find any funding.
I am just stuck here in this rubbish place, I feel like a spider trapped in a bath and I just can't seem to clime out. I am just so tired, in pain, feeling rubbish and top it off with a job that I hate. I have also considered a business of my own, something which a could run from home, which would be amazing as I feel rubbish and don't feel like leaving the house most of the time anyway. or maybe even a job which is a lot less labour intensive, in a office, so at least when there is pain I don't have to be moving around all the time, but it requires training, and money.
So once again I am the spider, I have squirmed, tried to climb, tried to get out so many times that I am just on the verge of giving up.
Right now I am taking the study drug and Co-Codamol (30/500) to try and ease the pain.
My symptoms right now are what I mentioned earlier in the story, plus a fever (feeling hot/sweaty and sick), I also feel quite dizzy as well. Just wondering has anyone got any advice on Sepsis, as this fever and dizziness are not that normal for me.
Anyway that's my story,
Cameron