Getting no where.
I came to England for better psychiatric treatment. But so far it’s been rubbish and isn’t even helping. I now see a psychiatric nurse once every two weeks and he doesn’t help at all. I’m having less psychiatric care than I did in Dubai. My school counsellor who I FaceTime every week said she is quite concerned I’m not getting regular treatment. And I am too. And the treatment in getting isn’t even helping. I haven’t told anyone but I’m still feeling pretty bad. Might have to start private treatment soon. Seeing as the NHS treatment seems to be pretty rubbish.
Saw my neurologist last week. Went in expecting him to say there was nothing more he can do. But he came up with two medications I can try. One an Alzheimer’s drug with off label use of migraine and the other I can’t remember the name. But he first has to check with my mental health team cause they can make depression worse and suicide ideation worse. So am waiting on that at the minute and am finally coming off gabapentin over the next month, hopefully I won’t go into withdrawal again. Then my neurologist proceeded to say that funding for my surgery could take a year to get. Because of the new system of funding for NHS surgeries is new and not sorted out fully yet. He said they don’t even know if they are going to approve anyone for this type of surgery yet. I’m hoping they can get my application in as soon as possible. And that hopefully they will approve it. I guess it’s just a waiting game now, more like suffering till I can get surgery.
So much pain.
My head is killing me and has been really bad most of the time for over a week now. Next Friday I am having my final MRI scan before apply for nerve stimulation surgery. Then the Tuesday after I am seeing my neurologist, who is probably going to tell me there is nothing more he can do for me. I have tried all the available medications that could of potentially worked…but didn’t. I’ve tried the more aggressive treatments, numerous nerve blocks, botox several times and DHE infusions. The only thing left is nerve stimulation surgery, but once my funding is approved the wait for surgery is 6 months. So do I have to suffer the whole of this 6 months is my question. Can’t he finally treat my pain with some strong pain killers that might work a bit so I no longer have to suffer so much. But I don’t want to sound like a drug seeker, which is a common problem for those with chronic pain. All I know is that I can’t continue to suffer like this.
I’ve been in England over a month now, and in that month only two of my friends in Dubai have spoken to me. My best friend I speak to pretty much every day and she has been really great. Since my announcement message I sent to my closest friends explaining why I left and why I won’t be coming back. I know all of my friends saw it, and two of them sent me a message saying they hoped I was okay. But two of people I considered my closest friends didn’t reply and haven’t spoken to me since I left. And yes they are boys so really what should I expect. But these are boys who know everything that I have been through and one of them even visited me in hospital after my overdose. So I know they aren’t scared off that I am suicidal again. But still they haven’t said a word to me. Not even to see if I’m okay. This has made things worse, I feel so miserable about it, and it’s obvious they couldn’t give two shits about me or how I am. It’s like now I have left Dubai they don’t want to know me. Why does this always happen to me. Every group of friends I make ditches me at some point. My England friends; ditched me shortly after I left. My original Dubai friends from my original year; ditched me shortly after I got sick. And now the new friends I made in Dubai; now that I have left nearly all of them have ditched me. I guess I should be use to it by now, but it still hurts. Maybe I am better off alone.
So miserable, I just want to go home. Sometimes I wish I had just suffered in silence then I would never have had to leave. I see all my friends out in Dubai having a great time and I just want to be there. Plus there is the fact that only 2 of my friends in Dubai are talking to me. Two of my closest friends in Dubai haven’t even contacted me to see if I’m alright, even with me sending out a mass message to all of my friends explaining why I left and why I’m not coming back. Still not a word. This has made me even more miserable. And I really want to talk to my school counsellor but she is really busy and hasn’t got back to me with a time that we can facetime. But she is the only person that understands. My psychiatric nurses that I see every day are alright but Jo is better and really understands. I know it’s not going to be a quick fix but I see these people every day and I feel no better. Everything is rubbish and I just want to go home. Everything seems so bleak, my future seems bleak. Even with the possibilty of sugery it still seems bleak. What if the surgery doesn’t help, then I am completely out of options. There is nothing more anyone can do for me and I don’t know what to do anymore. All I know is that I can’t live like this forever or for who knows how long, I just can’t.
I saw the neurosurgeon up in London this week. He thinks surgery is now my best option. My only option. Says it helps 2/3 people with my condition so that is good odds. We are doing another MRI to rule out chari malformation as I fit quite a lot of the symptoms. And then if that is ruled out we will go ahead with nerve stimulation surgery. However I will need to get funding from my primary care trust which could take a while. And then if that is approved I go onto the waiting list which is 6 months long. On one hand I have been given some hope and feel a bit better for it. Yet on the other hand I feel miserable that this is my last and only option so if this doesn’t work I am fucked. So I don’t really know how to feel.
Only one of them has the rest I have heard nothing from. I know
Staying in England
I’m not going back to Dubai. At least for 18 months they said it would take that long for me to be mentally well enough to return. I am distraught I want to go back so badly. As if I haven’t got enough going on right now none of my so called friends have even spoken to me since announcing I’m not going back. Which is making me even more miserable. Seeing a psychologist on Monday and taking things from there. I have psychiatric nurses come round to see me every day at the minute. And then I have my neurosurgeon appointment on Tuesday.
Sorry to hear you are suffering too. Headache conditions suck :(
Went to see my psychiatrist today for a repeat prescription instead of giving me a prescription he gave me a full bottle of clonazapam, he gave that to a suicidal person who has already tried to kill herself once before. I was so tempted to take the whole bottle, but then instead I drove to school and gave them to my school counselor who then gave them to my mum. And between us it was decided that I need to go back to England to get some inpatient treatment in hospital. So on Wednesday I am flying back to England and then will eventually be admitted to hospital not sure when or where yet though, waiting to hear back from my psychiatrist there.
Saw my school counselor today, which was okay. We made an agreement though that if I start feeling worse like I’m thinking about doing something then I have to tell her. Also talked about the possibility of me going somewhere to get inpatient treatment for my depression if it gets worse. That was all fine, and then I got a call from effectively my boss and told that I’m not allowed to come to work till I get a letter from my psychiatrist saying that I am fit to work and one from my doctor also saying my heart is fine. So that’s fucking great. Work was the one thing keeping me going and now I don’t have that at the minute. Feel so low and miserable.
I feel an overwhelming sense of misery and helplessness. No one can help me, I am helpless. My new meds aren’t going to help and then other than the surgery which is possibly years away and not guaranteed to work I will be completely helpless and there is nothing more anyone can do for me. So I just have to live with the pain for possibly the rest of my life as there is little help that I will ever get better on my own. So why should I live? I just had a good cutting session, cut quite deep blood went absolutely everywhere it was beautiful and made me feel better for a brief period of time. Probably cut again later. I never want to stop.
I reached out to my school counselor because I am feeling so low and suicidal. She of course had the obligation to tell my mum. So I am on suicide watch and now my parents know and are worried. About me. I think about it a lot but I don’t actually have any plans to do anything, plus there is the threat of being shipped off back to England if I try anything again and I don’t want that. So I think I’m okay; well I’m not I’m suicidal but you know what I mean. Saw my psychiatrist in Dubai who put me back on antidepressants along with staying on my anti psychotics, also gave me clonazapam for my anxiety. Doubt any of it will help nothing ever does. Plus I don’t like my psychiatrist in Dubai he always wants to treat my headache and that’s not his job. I also feel that he doesn’t take me seriously enough, and I just genuinely think he is rubbish, much prefer my one in England but she is away and I needed to see/speak to someone about getting me put back on antidepressants asap, according to my GP and school counselor. So I had little choice, though I will be seeing my psychiatrist in England at the end of April, no doubt she won’t be happy with what my one here has put me on but oh well.
Thank you anon.