I saw the newest member of my team today. Neena is her name. My dad calls her 'nee naw' because he's the most juvenile person I've ever come across! She's the pediatric psychologist at Addenbrookes- well the current one anyway, she's standing in for the one on maternity leave. She's really nice and she's helping me try and see over my pile of 'what if' questions.
Over the last couple of years I've tended to ask myself a heck of a lot of questions about my future and where I want to go in life. If I'm being completely honest, I have no idea, but what I do know is, I have to chose my A Level subjects and that's confusing me as well as the exam stress from my current GCSEs.
All of these little stresses cause a major hole in my universe. The rip my mind to shreds and I have no idea how to sew it back together. There are days that I just want to scream but then I also know that I don't really have a valid reason to, people have it so much worse than me and anyway, I hate being centre of attention. I hate being judged by people who are utterly clueless and people who think you're worthless are even worse.
These are all of the things Neena and myself talk about and we're slowly but surely gathering up all of the torn fabric of my brain and sewing it together piece by tiny piece.
20 March 2016
Neena
Hiya, thankyou for wanting to read my story. I hope this will help other people dealing with similar situations, or just give people a little insight to my life. Enjoy.
12 March 2016
Inflectra
The year was 2015 and my Crohn's went tits up essentially. I was really ill and being sick almost every other day (the other end was far less pleasant) so I went for a consultant meeting. That is where the decision was made to put me on the infusion drug Infliximab in the form of Inflectra™.
I'm not going to lie, it sucks. They push this through me currently: every eight weeks but I have an extremely strong feeling that will get reduced to every six weeks. The infusion it's self is two hours but I normally end up on wars for about 5 maybe 5 and a half, depending how quick the nursing staff are to put the canula in!
I recently learnt that the hospital that I go to is one of very few places that let children use this form on infliximab which I thought was pretty awesome. The more people taking this drug, the better everyone feels... or so I thought. Inflecta isn't doing me any favours. I'm still throwing everything I eat back up, I'm still consistently tired and my sleeping pattern is utterly shot. It's gotten to the point that I sleep for an average of 10 hours every 3 days which is horrendous. (I'm a HUGE fan of sleep, so this fact is very upsetting.)
I started Inflectra in December and the first time I had it done, I physically couldn't get out if my bed. The cramps were over whelming and the headaches were out of this world. It got better the second time around but the spring in my step only lasted for 10 days and it gradually went down hill. I started going dizzy every time I stood up, I felt sick all of the time, I didn't enjoy that time of my life.
I've had the Inflectra infusion four times now and it seems to be controlling my crohn's but everything else such as: the sickening feeling, headaches, cramps and dizziness are still recurring factors in my life and I have no idea if I will every get my old life back.
I'm not going to lie, it sucks. They push this through me currently: every eight weeks but I have an extremely strong feeling that will get reduced to every six weeks. The infusion it's self is two hours but I normally end up on wars for about 5 maybe 5 and a half, depending how quick the nursing staff are to put the canula in!
I recently learnt that the hospital that I go to is one of very few places that let children use this form on infliximab which I thought was pretty awesome. The more people taking this drug, the better everyone feels... or so I thought. Inflecta isn't doing me any favours. I'm still throwing everything I eat back up, I'm still consistently tired and my sleeping pattern is utterly shot. It's gotten to the point that I sleep for an average of 10 hours every 3 days which is horrendous. (I'm a HUGE fan of sleep, so this fact is very upsetting.)
I started Inflectra in December and the first time I had it done, I physically couldn't get out if my bed. The cramps were over whelming and the headaches were out of this world. It got better the second time around but the spring in my step only lasted for 10 days and it gradually went down hill. I started going dizzy every time I stood up, I felt sick all of the time, I didn't enjoy that time of my life.
I've had the Inflectra infusion four times now and it seems to be controlling my crohn's but everything else such as: the sickening feeling, headaches, cramps and dizziness are still recurring factors in my life and I have no idea if I will every get my old life back.
Hiya, thankyou for wanting to read my story. I hope this will help other people dealing with similar situations, or just give people a little insight to my life. Enjoy.
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