A bit of a set back.

It’s been a couple of weeks since my last post where I wrote that surgery was imminent. Unfortunately that hasn’t been the case and there has been a slight set back. I had my psych evaluation with a very nice psychologist, who although didn’t know an awful lot about headache conditions, he was willing to learn and was understanding. So he can go on my list of nice psychologists/doctors. The evaluation itself went okay and he said he is not a gatekeeper as to whether or not I get surgery, that that is mine and my doctors decision, but he just wants to make sure I have appropriate care throughout the process. He wanted to go away have a think and read some reports from my previous psychologists before seeing me again in two weeks time.

Two weeks time was Tuesday so I trekked up to London to see the psych and my neurologist, I saw them briefly and then they went to have a meeting with the head of the psychology department to see what support they can offer me. The result of that was they can offer me one session with the psychologist before surgery and four after surgery, in the hope that once four sessions are up the service for the surgery I am having will be completely sorted out and they will have their own psychologist specially for this. However they said before I have surgery they want me to see their psychiatrist, and this is a 2-3 month wait to see him; and there’s the set back. I don’t really understand why I have to see a psychiatrist, my thinking about it would be their concerns that I could be a risk due to my history of self harm and suicidal tendencies. I would be lying if I didn’t say I was annoyed about this slight set back. I feel that I was kind of led to believe surgery was much sooner than the current time schedule I am now on with having to wait to see this psychiatrist.

This week has not been good, I officially resigned from work, I had my hours cut because it was just triggering insane pain levels constantly. But that wasn’t enough and they couldn’t cut them anymore so I felt the right thing to do was to resign, working made the pain unbearably bad all the time and I just couldn’t continue to do it anymore. Naturally I am very upset, I cried most of the day which of course did not help my pain levels. It is hard I just feel like everything I ever try to do to move forward with my life gets crushed cause of the pain. I never manage to finish anything and it makes me feel like a complete failure. I am 22 years old, and there doesn’t seem to be anything I can do because of the pain, so what the hell am I meant to do with my life. Everyone my age is either studying or has a job and a life, then there’s me, next to no qualifications, unable to cope with studying, unable to cope with a job, so seriously what am I meant to do. I wish someone would just help me figure it all out and come up with a suggestion because I am really lost and alone.

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11 thoughts on “A bit of a set back.

  1. Hi Sian. I know what it’s like to have chronic pain. I’m going on 4 years now with chronic pain and it’s only getting worse. I know what it’s like to not be able to work as I was forced into early retirement because my employer could not meet the accommodations and restrictions from my doctor. Then disability denied my claim saying I can do less demanding work, based on my education and experience. This goes to show you that education experience and qualifications don’t add up to a hill of beans when one is disabled. I, too, am earnestly awaiting surgery; I have a few pre-op appointments in a couple of weeks and am scheduled for surgery about a week later. I’m just sharing this with you to let you know that you are not alone and don’t give up.

  2. It’s crazy that you have to see a psychiatrist. I know things are different in the UK. I would think they would want you to have the surgery right away because it’s the pain that is causing the depression and if you could get rid of the pain and have a life you might not be depressed. I had a neuro-stimulator implant almost 3 years ago and I haven’t been depressed since. Mine is not just an ONS. I have 4 leads. Gave me my life back and I wish everyone in your situation could do it. Good Luck! I hope you get better soon!

    • Yeah they’re putting me through the ringer to get this surgery. I’ve already been waiting 3 years for it. Glad it helped you and hopefully once I get it it will help me too.

  3. Hi! I’m sorry to hear you’re facing so many setbacks and disappointments 😦 I waited 16 months from my stim trial to get the permanent ONS surgery for NDPH. It hasn’t cured me (I still have 1-2 bad days a week) but it has helped tremendously. I hope the wait isn’t too bad for you and that the stim helps improve your quality of life 🙂

    • Hi Sian and Sam, I don’t just have an ONS and that is mine gave me my life back. I have 2 leads over the occipital nerves and 2 leads over my eyebrows. I can tell you that if I didn’t have the two over my eyebrows I would still have daily migraines. I wish more people could get the one I have. Check out my blog at amigraineurslife.wordpress.com I went to the Reed Migraine Center. I understand it’s different in other countries so going to Reed Might not work for everyone. I wish you all the best Sian!

  4. Sian, I don’t have any suggestions for you on what you can do for your pain. But I wanted to tell you that you still have a lot to offer. It can feel hopeless without qualifications to do anything useful in the world, but you can share your empathy and patience with the people around you. Leaving your job is a tough step. Take the next few weeks or months to work out a self care routine that helps you love yourself. Things will get better. Even if the pain doesn’t go away, you can push through and be happy again.

  5. I haven’t read everything on your blog yet, but was searching for cefaly and ndph and stumbled across your blog. I have had a constant headache for 6.5 years now, and similar to you, no treatment has helped the pain. It’s so emotionally, physically, and spiritually draining to be in pain all the time with no end in sight. And no one seems to understand how debilitating it is. Even though my normal headache stays around a 3-5 on the pain scale, it is so exhausting day in and day out. I look fine, and most days I act fine because I have fine tuned the act of trying to hide it from the world because I don’t like having to explain what I’m going through, and I feel so much pressure (from myself) to be a good wife, mom, friend, employee, etc. I just ordered the cefaly device, and like you, I’m not very optimistic but it’s like the last thing the neuro had to offer, then basically I think he has no idea what to do with me. Ugh.

    • Hi Kristen. Sorry you’ve been suffering with this for so long as well. I totally get you I struggle so much too. The cefaly device did not help me and I found it incredibly painful whilst it was on. But everyone’s different and it could help you. I’m having occipital nerve stimulation surgery at some point this year fingers crossed as a last effort to help my pain. Currently I’m unable to study or work or do pretty much anything productive. I hope you find something that helps and that my posts bring you some sort of comfort. All be it I don’t post very often anymore.
      Wishing you a low pain day!

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