Reflections after my first ever specialist CFS nurse appointment

Blog entry posted by lior, Nov 30, 2017.

I went to my first specialist appointment yesterday, and got my diagnosis confirmed. It was at Sutton Hospital, which is one of the few CFS clinics in the UK.

It's about an hour's journey from my house by public transport, which I had to break up with rests. I heard that people have to travel from further away to get there than I do. I don't know how they do it. I can't drive and don't have people to drive me, except Uber, and that could get expensive quickly.

It feels anticlimactic. I'm not surprised I have ME/CFS. I already knew it. I didn't have an emotional reaction to that confirmation, though it looked like the nurse expected it.

I'm not totally convinced by their theory of why I have the symptoms I have. I don't think I have been deconditioned or doing prolonged rest. I've been doing the maximum I can, every day. Sometimes beyond maximum. During crashes I still do the maximum possible on that day according to the symptoms. So I don't get it.

I can believe that I'm stuck in fight-or-flight mode. But I don't understand why I'd develop CFS AFTER coming out of depression and anxiety? I didn't feel depressed and anxious any more, and then I developed CFS very soon afterwards. Why?! When then? Surely my fight-or-flight mode would have been reduced because I wasn't depressed/anxious any more?

They say that being frustrated about symptoms make it worse. But I did a stellar job of adjusting and accepting the symptoms, and I still had them. Honestly I have got stressed again recently because of preparing for this appointment within 2 weeks, and having to research the benefits system to this deadline. I have been fighting with my symptoms and pushing myself to concentrate and move even though it was difficult and made me feel more tired.

I have to wait 3-4 months to start a 6-week lifestyle management group therapy. In the meantime, I have breathing exercises and an activity diary, with guidance to find a baseline and do more active rest (rather than reactive).

They believe that all the symptoms are caused by breathing slightly too fast and having this fight-or-flight reaction, as far as I understand. The fatigue is caused by those factors, then resting too much causes the physical symptoms. Hypersensitivity is caused by breathing too fast, and that's where the light sensitivity comes from, and the body sensitivity. It does sound plausible.

I'm feeling mistrusting. There's a contraction in their handout sheet. It says that there is no confirmed reason for CFS, and lists a few possible options including diseases of various kinds. Then it goes on to say that since there is no confirmed disease, it's not a disease that's causing physical problems, so it must be deconditioning. It doesn't make sense to say it could be a disease and then say it's not a disease in the next section. I don't want them to pretend to know if they don't know. I'm not convinced I'm deconditioned. Maybe I'll change my mind through doing their worksheets.

I'm also mistrusting about benefits. In my Citizen's Advice appointment months ago, the lady didn't seem to be on my side. She only told me about PIP. I underplayed my symptoms because I want to focus on the positive - it's depressing to think about all the things I can't do. I was seriously struggling to talk during the meeting with her. But she wasn't convinced I was ill enough for PIP. And said that nothing could be done before a specialist appointment - I'd need a letter from a specialist as evidence.

Well, I'll have that nurse's letter soon. Hopefully. I gave her a print out of my symptoms against the PIP and ESA criteria that I think is relevant.

I've been keeping a bloody activity diary against the PIP criteria. But the nurse yesterday said PIP is difficult to get, and she doesn't think I'm severe enough, she thinks I'm moderate. I did a bad job of articulating my symptoms accurately in the appointment - underplaying, again. It was easier for me to write the real extent of the symptoms, and so I really hope she reads what I gave her. So now I'm not sure if I am moderate or severe. I'm severe some days, I think. Is that enough for PIP? I don't know.

Why didn't the Citizen's Advice lady tell me about ESA back then if that was a more realistic option?

Other people I've met who have ME have said that ESA is easier to get than PIP.

So I've spent months and months keeping an activity log for PIP, and it's been a waste of time. And I have to start again with ESA, I guess.

I'm SO BORED of all this benefits stuff. It's not what I want to spend my limited amount of brainpower on. I feel angry. Why didn't I get the right information to begin with? I don't know who to believe. I don't believe anyone. Everyone has their own angle on benefits.

Everyone has their own theory on ME/CFS too. I don't know what to believe. I don't believe anyone. I don't trust anyone. I'm not going to be giving my money to the Lighting Process or things like that.

I wish there was something concrete that I could trust. In the absence of that, I'm only going to trust myself. I wish that I had more brainpower to do my own research, and think how I used to - I used to be a good researcher, and able to analyse. I haven't been able to do that, so I've just trusted what I've been told.

This is a rambling post rather than a beautifully structured one, like I used to be able to write. But it will have to do.

The nurse said to go back to Citizens' Advice. Yet she and the CA lady told me different things. So I reckon the best course of action would be to do my own research before going back to CA, and ask for support for my way of doing things. I don't want to be spending time researching benefits - I'd rather be doing other things. But I want to lead in my own life, rather than be at the mercy of other people's limited knowledge of how to help me.

A time I need help from others - nobody is able to help me well enough. There are people who are more ill than me. They must be just languishing. I know I'm unusually disadvantaged by not having family support. There is nobody who is going to lead on my health and support, only me. If I stop fighting, nobody will fight for me. I need help but I have to stay independent. What happens to the people who are more unwell than me? The ones who don't have the energy to fight? Well... I don't have the energy to fight fast enough.

I need a break from thinking about my health and benefits. For the next few days, I am going to focus on friends, hobbies, and if possible, work.

I'm disappointed at how unmotivating the specialist appointment was. I came out of it believing that I will be ill for years, that treatments aren't going to make a big difference and that I'll have to wait a long time for help, that it's very difficult to get benefits, and feeling doubtful and mistrusting about their theories about ME/CFS. I'm not hopeful and excited for the adventure ahead - which is what I want to feel.
lior

About the Author

ME/CFS since Sept 16. Eccentric. Designer. Writes and draws in cafes when possible.
  1. Chocolove
    Have you heard of Salus Fatigue Foundation?
    https://www.salus.org.uk/
    Salus Fatigue Foundation is a charity, not for profit organisation, that provides support, advice, education and helps in the long term to inspire people living with ME, CFS and Fibromyalgia to improve their health and wellbeing.
    info@salus.org.uk
    telephone us on 07809 246 674
    https://www.salus.org.uk/how-can-salus-help-me/
    https://www.facebook.com/groups/100737409967627/

    I'm in the U. S. so I have not utilized the group. Hope they may be of some benefit to you especially in figuring out the ways to reduce costs and being able to contact others in similar circumstances. We'll all work on this together.