So I have POTS, Postural Orthostatic Tachycardia Syndrome. I don’t talk about it much because it doesn’t bother me so much anymore as long as I take my meds for it. I’ve had symptoms of it since I was 12 but was only diagnosed in 2011. I use to black out/faint and have seizure type things every time I stood up and it was awful and kind of scary as well. In 2011 when I was diagnosed I got put on lots of medication for it, Fludrocortisone, Midrodine and injecting a medication called Octreotide 3x a day which is very annoying to have to do but the combination keeps me stable. I do however still have a very high resting heart rate of about 120 bpm, so exercising can be difficult and I have to take a lot of breaks cause I get tired really quickly. But I still do taekwondo despite all of this.
Over the past few days I’ve been starting to black out again. In the morning first thing when I get up. I get up go downstairs, and I’m on the verge of fainting the entire time I’m stood up. I feel faint, my vision starts to blur my hearing goes funny and I have to sit back down to be able to control it and come out of it. I don’t know what’s going on. My meds have always kept me stable up until now. This happens for about an hour or so and then I start to feel okay again. It’s weird. I’m hoping it will settle back down soon, I hope!
Over the years I’ve had a lot of issues with friends.
Firstly I moved country moved from England to Dubai, stayed in touch with my friends in England for about a year. Went back to England the summer of ’09 and had a really amazing summer with my friends in England. Over the next year I tried to stay in touch with everyone a fair bit. The next summer I went back this was my first summer after getting ill. My friends in England didn’t really show any interest in wanting to see me, I was having a tough time as it was with adapting to my new reality of chronic pain. I remember texting my friends to see if they wanted to meet up several times but had next to no response. On my last day I text them saying it was my last day if they wanted to see me before I left then it would have to be today. They text back with ‘Sorry we are busy’. A bit disappointed and hurt but I got on with it and spent the day with my sister instead. I walked to the village shop with my sister and guess who I see, my two ‘best’ friends walking back from the shop clearly not busy. After that I gave up, they stopped speaking to me or showing any interest in wanting to still be my friend so I stopped speaking to them too.
I had friends in Dubai, but after I got sick they sort of left me, I put it down to them being fed up with the new me, in pain, depressed and miserable. I know its hard to be friends with someone who is chronically ill and in pain, but it hurt that they left me and didn’t try a bit harder to be there for me when I needed people the most. I went through a period of time, about a year where I had no friends, no one spoke to me, I didn’t go out, stayed in my room almost 24/7 when I wasn’t at school. And at school no one spoke to me and I didn’t speak to anyone either. I sat on my own in the common room at lunch because I had no friends and no one to talk to I would isolate myself in a corner reading to make myself look like I was choosing to be alone, whereas the reality of it was that I had no other choice.
The next school year I got moved down a year. It was hard at first but eventually I made some friends. I started to go out with them when I felt able to. And things started to get okay on the friends front. Two of my closest friends even visited me in hospital after my overdose.
In April of this year I moved back to England because of my health. And surprise surprise hardly any of my friends bothered to keep in touch or see if I was okay. I even sent out a mass message to my closest friends explaining why I left because I only told a couple of them I was leaving. I got replies from a couple of them saying they hoped I was okay, which was nice. But two of my closest friends didn’t even bother replying, even though they had seen the message and it was marked as read on Facebook. That hurt a lot to be honest. Three months later one of them started talking to me and said he was sorry for not talking to me sooner. I accepted his apology and we still talk occasionally now.
The problem is everyone has moved on with their lives, they are all at uni, being normal and having a good time. And I understand that. But my so called best friend hardly has time for me anymore. She will only speak to me if I speak to her first, and then after a while she just stops replying. I still have one really close friend though who has been amazing and is always there for me.
But it just seems like everyone always leaves me. Is there something wrong with me that causes this?!
I’m really struggling at the minute. After my appointment with my neuro who gave me the ultimate decision of pain meds or surgery, either or but I can’t have both. I can’t even have pain meds to get me through the wait till surgery, not allowed anything other than triptans, which do not work. But I’ve been struggling, I feel so miserable and helpless and I don’t know what to do. I’m not sure I can survive the wait till surgery with nothing for the pain. I’m struggling to keep my head above the water and I feel as if I’m drowning. Drowning in misery and helplessness.
My neurologist said there is nothing more he can do for me. And I’m struggling to accept the fact that I might be in pain for the rest of my life. I don’t want to accept it. Because to me accepting that means saying it’s okay. I know that’s not what acceptance is but it feels like it is. It’s not okay to live in pain for the rest of your life, but if there’s nothing more anyone can do for me, I guess that’s what it’s going to be.
I feel so miserable, defeated, helpless and even upset. And I don’t know what to do. I’m not strong enough to continue living like this forever. I just can’t do it and I shouldn’t have to. If I were a dog they would have put me down by now because no one should have to live in this much pain. So why is it okay for a human to have to live this way for who knows how long.
I’m expected just to suffer it out till I can get a surgery that may not even work, well not work because it’s not a cure but help even. In 8 weeks time my headache hit’s it’s 4th year anniversary, that’s 1461 days or 35063 hours spent in pain. Which is a long time. This illness has taken so much away from me, 4 years that I will never get back, my teenage years ruined, time spent being a happy teenager doing normal things with everything to live for taken away.
I have no future, a future without pain doesn’t exist for me, so what’s the point in a future at all. I have an agreement with my psychologist that I will not try to kill myself whilst I am still seeing her regularly. I tend to uphold my agreements so I don’t have any plans to do anything. But that doesn’t mean I don’t wish I was dead.
I just want it all to end.
So I went up to London to see my neurologist today. Had to wait 3 hours to be seen which was beyond annoying. But eventually I got to see my neuro.
He said that my GP had wrote to him, which I knew about and she had said that I wanted to go on opiates. He then said that if I went on opiates that I wouldn’t be able to have surgery. Surgery requirements are that you have to be opiate clean for 3 month prior to applying for surgery. He said I had to make a choice whether I wanted to go on opiates which he would fully understand why I would want that because I’m in pain. Or to suffer it out and wait for surgery without anything for the pain. Safe to say I have no idea what to do. He said that there is nothing more he can do for me. I’ve tried everything he has to offer with no success.
I’ve never felt so defeated and helpless and I honestly don’t know what to do. Do I suffer in pain for what could be a two year wait till surgery. Or do I go on opiates and finally get some relief that I so desperately need. I’m so upset on the train home it was hard to contain myself and hold back the tears. No one can help me anymore and I completely am helpless.
So I just threw away my razors, (I did just have a major cutting session) but after I decided to throw them away in the bin outside so I can’t get them again. It was really hard and I guess I should be proud of myself?!
I relapsed just under two weeks ago now and had been cutting every day since. But cutting came with a price, I can’t go to taekwondo if I’m cutting. I tried to go a couple of days after I relapsed but I was petrified of getting hit and blood on my white suit. Which could easily happen in a contact sport. So I haven’t been since. But I want to go back. So I cut for the last time tonight, it’s going to be hard to control the urges, but I’ve got clean a few times before so I know I can do it again. My theory is if I don’t have the razors then it’s not easy for me to cut. Yes I could find something else to cut with, but I’m a creature of habit, I only really like to cut with razors, so if I don’t have them I can’t cut. You may ask why didn’t I throw them away before now, well because I didn’t want to. In order to be able to stop self harming you have to want to. I had to get to the point where I wanted to stop and now I’m there, so it will be a bit easier, still hard but easier.
In a few days once my arms have healed a bit, and I’m less of a risk of bleeding if I get hit, I can cover them up and go back to taekwondo. It’s going to be a hard few days to get through without cutting, but I’ve coped without doing it before so I can do it again.
Today I had a doctors appointment with my GP. Only I didn’t actually get to see my GP as she wasn’t in for some reason or another, which frustrated me, cause it’s always hard having to see a new cover doctor who doesn’t know your case and what’s going on with you. But give her her due she had actually spoken to my GP about me.
The cover doctor told me that my GP has written to my neurologist about me as she doesn’t know what to do with me as my case is so complicated and she’s at the end of her expertise. Which is quite depressing when a doctor doesn’t know how to help you. I told her that the triptan nasal sprays my GP gave me don’t work. So she gave me another type of triptan nasal spray to try. I asked if I would be able to get a referral for pain management and she said she would speak to my GP about it and her know that I have asked for one. She said she was not comfortable taking me off of my preventative medication Memantine (Namenda/Ebixa) without first speaking to my neurologist. So I have to wait till next Wednesday when I see him to discuss that also.
But I know my neuro is basically going to say on Wednesday that there is nothing more he can do but wait for surgery. And he won’t give me anything stronger than triptans for the pain. What I really need is a referral to pain management. But it looks like I’m not going to be able to get one for quite a while, as I see my neuro on Wednesday and then on Friday I’m off to Dubai for 10 days. So I won’t be able to see my GP before I get back to discuss what to do next.
Sigh, this process is so long and frustrating, why can’t someone just treat me for my fucking pain already?!
So I’ve got a bit of a complicated problem, and would really appreciate some advice, if you can offer any.
So I’ve been seeing a neurologist up in London for 2 years now, I have now tried all the available methods he has wanted me to try, nerve blocks, botox, DHE and all the preventative medications on his list. But nothing has even touched the pain at all. So I’ve sort of come to the end and the only thing left to try is occipital nerve stimulation surgery, which I am looking at getting done, but unfortunately due to funding issues in the UK with the NHS it’s looking at being at least a two year wait. I’m seeing my neuro on the 20th November and I know he is probably going to say there is nothing more he can do but wait for surgery.
The only thing my neuro will give me for the pain is Triptans, but they don’t work. I’ve tried every single pill form of them with no luck, and I’ve just tried a nasal spray one which doesn’t help either. I need something for the pain when it gets bad, but my neuro won’t offer me anything stronger than triptans. I’ve been to my GP and she said she can’t go against what my neuro says, so she gave me the triptan nasal spay to try. But now that doesn’t work.
I know that I won’t survive the wait til surgery if I get nothing for the pain. My thinking is that I should go to a pain management specialist and ask for something for the pain. But I don’t want my neuro to find out and say he is not going to treat me anymore because I’ve gone on something stronger for the pain that he doesn’t agree with. Which if that happens will mess up me getting surgery through my neuro and the neurosurgeon he works with.
I’m the one in pain and I should be able to take something for the pain when it gets bad, it’s cruel for my neuro to just expect me to suffer for at least two years til surgery, if I get nothing for the pain I will most likely end up trying to kill myself again. I’m desperate for some relief, but I don’t know what to do and how to go about getting any.
Does anyone have any advice about what they think I should do?