It's 4am, and I have woken in a panic. I am in a bubble of disbelief. How did I get here? I was full of life before. Excited for life, and energised. Suddenly I am 22 and it has all fallen apart. I am isolated, sick and I have lost control. I have to pick up so many pieces, but I don't know where to start.
I am so far from where I want to be. But the thing is, I'm tired. I don't want to be fighting anymore, and that makes it so hard for me to move forward.
I'm 22, but I'm not excited for life or my future. I'm just scared. I miss the person I used to be. I think she is long gone.
What will we do when we get old? Will we walk down the same road? Will you be there, by my side standing strong as the waves roll over
I have been meaning to post here for a while, but so much has happened I honestly haven't known where to start or what to say. So here is an update on the everything that has been happening over the last few months...
1) I officially became on occupational therapist which feels amazing after years of working towards my goal. I graduated in June a few weeks after starting my job.
2) I became quite unwell again, my endo got out of control. I was doing really well on the mirena, and then I literally woke up one day in February or March and the pain was back, really bad again. As much as I tried to carry on and focus on my new job, I lost control and the constant pain, along with the stress got so bad that it just didn't work. I have been on sick leave for a while now.
3) I had surgery. I saw my consultant in July, who straight away agreed for me to finally have a laparoscopy to look for endometriosis, and remove it with laser treatment. I had my coil removed as it was no longer working, started having the depo-provera injection instead, and had my surgery three weeks ago. During the surgery they diagnosed me with endometriosis on my ovaries and on the outside of my uterus. I was also diagnosed with adenomyosis, which is endometriosis in the muscle of the uterus.
I've shown these pictures to a few people to help them understand both conditions (the first one shows endometriosis, the second one adenomyosis):
During my surgery, they were able to treat the endo, however could not treat the adenomyosis as this would involve a separate procedure. Both conditions are very painful and can cause infertility. There is no cure. To be diagnosed after having such severe pain for over two years was such a relief, but I'm now having to come to terms with a lot of difficult things, which I will write about in another post.
Three weeks on, I am feeling stronger and I'm proud of myself. The last few months have easily been some of the hardest of my life. For a while, I felt depressed and lost, which is why I didn't post here. I have reached my long-term goal of becoming an OT, but haven't really been able to enjoy it because every day has been so hard. In the past, the one thing that has really helped me during difficult times was having a goal to work towards. I am trying to use this now. One of my goals now is to raise awareness of endometriosis and help other people who are struggling as much as possible. My blog is going to become much more endo orientated so I can put my story out there and help others. The picture below is of myself the day after my surgery. You cannot see it very clearly here, but my stomach is very swollen and I look a bit pregnant. My stomach is back to a more normal size now and my scars are healing well.
1) I officially became on occupational therapist which feels amazing after years of working towards my goal. I graduated in June a few weeks after starting my job.
2) I became quite unwell again, my endo got out of control. I was doing really well on the mirena, and then I literally woke up one day in February or March and the pain was back, really bad again. As much as I tried to carry on and focus on my new job, I lost control and the constant pain, along with the stress got so bad that it just didn't work. I have been on sick leave for a while now.
3) I had surgery. I saw my consultant in July, who straight away agreed for me to finally have a laparoscopy to look for endometriosis, and remove it with laser treatment. I had my coil removed as it was no longer working, started having the depo-provera injection instead, and had my surgery three weeks ago. During the surgery they diagnosed me with endometriosis on my ovaries and on the outside of my uterus. I was also diagnosed with adenomyosis, which is endometriosis in the muscle of the uterus.
I've shown these pictures to a few people to help them understand both conditions (the first one shows endometriosis, the second one adenomyosis):
During my surgery, they were able to treat the endo, however could not treat the adenomyosis as this would involve a separate procedure. Both conditions are very painful and can cause infertility. There is no cure. To be diagnosed after having such severe pain for over two years was such a relief, but I'm now having to come to terms with a lot of difficult things, which I will write about in another post.
Three weeks on, I am feeling stronger and I'm proud of myself. The last few months have easily been some of the hardest of my life. For a while, I felt depressed and lost, which is why I didn't post here. I have reached my long-term goal of becoming an OT, but haven't really been able to enjoy it because every day has been so hard. In the past, the one thing that has really helped me during difficult times was having a goal to work towards. I am trying to use this now. One of my goals now is to raise awareness of endometriosis and help other people who are struggling as much as possible. My blog is going to become much more endo orientated so I can put my story out there and help others. The picture below is of myself the day after my surgery. You cannot see it very clearly here, but my stomach is very swollen and I look a bit pregnant. My stomach is back to a more normal size now and my scars are healing well.
I don't want to wait anymore I'm tired of looking for answers, take me some place where there's music and there's laughter
A little update...
The really exciting news is that in a month I'm going to be an OT! I have a job (a rotation, not sure where I'm starting yet) but its perfect, my ideal first job. Uni has been insane... They weren't lying when they said third year was hard! All I have left is one exam now, in 2 weeks then I have a couple of weeks off until I start my job.
I have been having acupuncture for my endo. I have hope for my treatment, and although I have not had a significant reduction in my pain yet, I am pretty sure that without it I would be much worse off because I seem to be having a bad episode anyway. Also, its helping me sleep and I tend to feel really nice and relaxed straight after treatment. So my endo has become a bit viscious recently, and I do believe that without acupuncture I would be a lot worse.
I have managed to keep up with all my work and deadlines, but it hasn't been easy. My endo has stirred things up quite a bit. I wasn't that happy with some of the work I have handed in, but it could have been a lot worse and I hope I have done enough to get the results that I want, because I have been working hard!
My coil seems to be losing it's effectiveness. My pain has been very inflammatory and everything is very tender, as if I'm covered in bruises. This is a bit worrying because this shouldn't really be happening a year post-coil. I have also had an increase in nerve pain, to the extent that I have it pretty much all day every day. It feels like electricity. It makes me wonder if the coil is hurting me. I'm chasing up my specialist to try and get another appointment to discuss everything.
I am coping quite well though. I have my strategies, and I have a little TENS machine that I can stick to my stomach and no one knows its there, which is perfect for when I'm at uni or out somewhere, in pain and can't curl up in a ball with a hot water bottle! I'm scared about how its going to be when I start working, because I have always struggled on placement even when things were pretty good. Its just exhausting working full time whilst trying to manage severe chronic pain, but the rewards of the job are worth it.
The really exciting news is that in a month I'm going to be an OT! I have a job (a rotation, not sure where I'm starting yet) but its perfect, my ideal first job. Uni has been insane... They weren't lying when they said third year was hard! All I have left is one exam now, in 2 weeks then I have a couple of weeks off until I start my job.
I have been having acupuncture for my endo. I have hope for my treatment, and although I have not had a significant reduction in my pain yet, I am pretty sure that without it I would be much worse off because I seem to be having a bad episode anyway. Also, its helping me sleep and I tend to feel really nice and relaxed straight after treatment. So my endo has become a bit viscious recently, and I do believe that without acupuncture I would be a lot worse.
I have managed to keep up with all my work and deadlines, but it hasn't been easy. My endo has stirred things up quite a bit. I wasn't that happy with some of the work I have handed in, but it could have been a lot worse and I hope I have done enough to get the results that I want, because I have been working hard!
My coil seems to be losing it's effectiveness. My pain has been very inflammatory and everything is very tender, as if I'm covered in bruises. This is a bit worrying because this shouldn't really be happening a year post-coil. I have also had an increase in nerve pain, to the extent that I have it pretty much all day every day. It feels like electricity. It makes me wonder if the coil is hurting me. I'm chasing up my specialist to try and get another appointment to discuss everything.
I am coping quite well though. I have my strategies, and I have a little TENS machine that I can stick to my stomach and no one knows its there, which is perfect for when I'm at uni or out somewhere, in pain and can't curl up in a ball with a hot water bottle! I'm scared about how its going to be when I start working, because I have always struggled on placement even when things were pretty good. Its just exhausting working full time whilst trying to manage severe chronic pain, but the rewards of the job are worth it.
They've clipped my wings again, tore them apart and then left me. No use to fly away to my yesterday of freedom. My eyes died back that day, seeing the hurt I may have done. Beat me instead of them, pain is my only zen of fun. I'll go where secrets are sold, where roses unfold, I'll sleep as time goes by. So hurting here is where I belong, dreaming a song, blood on my hands to stay strong. The flowers in the graveyard are all gone, I don't belong, there is no right to heal the wrong soups on hot feeling like I'll do or die. I can't throw up, I don't think I even want to try. You still can't make me cry, you've pinned this butterfly down. My fire's burning out, kill my flame without a frown. And starving hurts the soul when you're hungry for some love. So if I close my eyes, I can really fly above. I'll go where secrets are sold, where roses unfold, I'll sleep as time goes by. So hurting here is where I belong, dreaming a song blood on my hands to stay strong. The flowers in the graveyard are all gone, I don't belond, there is no right to heal the wrong, soups on hot feeling like I'll do or die. I can't throw up, I don't think I even want to try. So hurting here is where I belong, dreaming a song blood on my hands to stay strong. The flowers in the graveyard are all gone, I don't belong, there is no right to heal the wrong, soups on hot feeling like I'll do or die. I can't throw up, I don't think I even want to try.
Pain
My pain has gradually improved. I now take less Tramadol, although a day without any painkillers at all is quite rare. I haven't had any A&E admissions or morphine since May/June, which is amazing considering I was there at least once a month for a while. At times, when it is nearly unbearable, I am close to going, but I desperately try not to. On the very bad days, the difficult thing is having to hide the pain I am in. As soon as I am alone in the office, or when I can't cope with hiding it anymore and go to a different room, I curl up in a ball or stretch in a way that feels good, and just completely stop hiding it. Even when I am walking along one of the corridors and no one is near me, I allow the pain I am in to show on my face because hiding it is a lot of effort. As soon as someone is there, the mask goes back on, although some of those who do know about my endo can still tell (the thing about OTs is that they are observant, they notice things like that. The others must suspect that somethings not quite right but it really doesn't matter). Oli is also one who can tell when I'm in pain (he is also observant and he obviously knows me well).
When I am with a patient, it's easier because I am so focused on them and what I am doing that even though the pain is impossible to ignore, it's easier to get on with it. Also because generally when I'm with a patient I'm moving a bit more, which seems to help when it's nerve pain (rather than endo pain). Sitting still is horrible to be honest, because it feels a bit like i'm being electrocuted from the inside. I'm not even exaggerating.
Anyway, I go home reasonably happy when I finish my day at work despite being in a lot of pain. I feel kind of like i've achieved something, like I'm not letting it stop me. It helps to tell someone about it, share the burden of it. I go home, feeling so relieved that I don't have to hide it anymore. Sometimes, on the really bad days, I go home and the only way I can cope is by lying on my bed with my headphones in, and try to detach myself from my body as much as possible. Music helps me cope with it; it helps me get away from my body. I just listen to the music, and breathe, and take it one song at a time until it starts to ease. If I can, I do yoga. The gentle movement helps me cope with the pain, even though it doesn't make it go away. Yoga can feel so good and it's very soothing.
I didn't intend to make this post so long, but it feels good to get the truth out. I'm not going to sugar coat it; this is the reality and sometimes it's really, really shit but I really am okay. I have my coping strategies, and I always get through it, with or without morphine.
When I am with a patient, it's easier because I am so focused on them and what I am doing that even though the pain is impossible to ignore, it's easier to get on with it. Also because generally when I'm with a patient I'm moving a bit more, which seems to help when it's nerve pain (rather than endo pain). Sitting still is horrible to be honest, because it feels a bit like i'm being electrocuted from the inside. I'm not even exaggerating.
Anyway, I go home reasonably happy when I finish my day at work despite being in a lot of pain. I feel kind of like i've achieved something, like I'm not letting it stop me. It helps to tell someone about it, share the burden of it. I go home, feeling so relieved that I don't have to hide it anymore. Sometimes, on the really bad days, I go home and the only way I can cope is by lying on my bed with my headphones in, and try to detach myself from my body as much as possible. Music helps me cope with it; it helps me get away from my body. I just listen to the music, and breathe, and take it one song at a time until it starts to ease. If I can, I do yoga. The gentle movement helps me cope with the pain, even though it doesn't make it go away. Yoga can feel so good and it's very soothing.
I didn't intend to make this post so long, but it feels good to get the truth out. I'm not going to sugar coat it; this is the reality and sometimes it's really, really shit but I really am okay. I have my coping strategies, and I always get through it, with or without morphine.
So hurting here is where I belong, dreaming a song, blood on my hands to stay strong
They've clipped my wings again
Tore them apart and then
Left me
No use to fly away
To my yesterday
Of freedom
Lemon by Katy Rose. The lyrics to this song float into my head when the pain gets very bad. I think of this song because there isn't any others I have heard which quite capture how it feels. This song is the truth. It captures perfectly that shit, horrible feeling of knowing that you have no option but to resign to the pain and feel it, even though you desperately want to escape from the feeling. You can't get rid of it, so you have the feel the almost unbearable reality of it.
I'll go where secrets are sold, where roses unfold, I'll sleep as time goes by.
Tore them apart and then
Left me
No use to fly away
To my yesterday
Of freedom
Lemon by Katy Rose. The lyrics to this song float into my head when the pain gets very bad. I think of this song because there isn't any others I have heard which quite capture how it feels. This song is the truth. It captures perfectly that shit, horrible feeling of knowing that you have no option but to resign to the pain and feel it, even though you desperately want to escape from the feeling. You can't get rid of it, so you have the feel the almost unbearable reality of it.
I'll go where secrets are sold, where roses unfold, I'll sleep as time goes by.
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