CFS specialist clinic admin staff let me down

Blog entry posted by lior, Nov 13, 2017.

I'm doubting myself. Am I keeping myself ill on purpose?
Am I doing enough to try to make myself better? Am I doing the right things?
The Lighting Process has made all of the difference to people that I have met offline, and yet it's so ridiculed here. I don't know what to think. It's so expensive and I'm not sure if I believe it will make the difference to me.
If I don't do it, does that mean that I haven't tried hard enough to get better?


The CFS clinic that I was waiting to get an appointment for messed up. They had told me I was about to get a letter with the appointment date on it. Now, they told me on the phone that they made a mistake and they actually have no idea when I'll have an appointment.

I felt incredibly let down. I properly sobbed for about an hour. I was pinning my hopes on that appointment because I want to talk to a doctor who really knows their stuff about CFS. And I can't get benefits without having this appointment first. I'm not earning. And getting well enough to earn again is taking a very long time.

I don't ask for help unless I really, really need it. I haven't got the help I've needed. I'm having times occasionally where I eat terribly because I don't have support at home - nobody is going to cook for me if I don't cook for myself. I need help.

I've been in their system for months. Months. I have been ill for 14 months, and got a diagnosis 8 months in, and it took about a month to get my GP to make a referral. It's not clear what the process is from the outset. I've had blood tests they've recommended. I heard today that when I have an appointment, it will be with a nurse rather than a doctor, and I'm not clear on what they're going to do. I'm wondering if they will be any good at all when I finally do have the appointment, which I'm guessing will be in several months from now.

I'm not sure if crying is helping. If I cry, I will be extra tired tomorrow. If I don't cry, I will get an anxiety symptom which is a lump in my throat that won't go away until I cry it out.

I'm not sure what to do without help. I'm not sure how to act independently in this situation... I'm asking for help because I'm not able to be independent.

I keep working on managing my problems. I thought that this specialist appointment could be the key to sorting out bigger problems. I'm losing hope. The later it is, the more time I'm spending without financial support and probably feeling more ill than I could be. I know the appointment won't cure me, but surely it could make me 10% better. Or, maybe it won't. Maybe I should just give up hope. I wasn't seeing this appointment as an extra bonus, I was seeing it as essential. I feel too powerless to see it as essential now, it's too painful to be denied help I really need. How can I plan my life so I don't need the help?

I thought I was doing well with managing my health. I want to get better. How can I do better than I'm doing at making myself better? What should I do to cope without help from a specialist? Can I plan my way out of this?

How can I be independent, when I am dependent? And why should I even have to be forced into this situation?
Pen2 and wonderoushope like this.
lior

About the Author

ME/CFS since Sept 16. Eccentric. Designer. Writes and draws in cafes when possible.
  1. lior
    Thanks @pen2! I'm in the UK and they haven't said anything like that to me - it could be a regional thing? I don't know how far they're going to able to help anyway... but for sure, I will be posting about what happens :)
  2. Pen2
    Dear @lior, I do wish and hope for the best at your appointment! I hope you will share your experience with us.

    I have not seen a specialist. My doctor said they only treat kids or teenagers. I don't know how true that is.

    I do hope you can get that at least, 10% help.

    Hugs,
    Pen2
    lior likes this.
  3. lior
    I got a letter today saying I've got an appointment for 29 nov!! Big surprise.
    Pen2 likes this.