Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

After a year and a half of waiting tomorrow I am being admitted into The Royal National  Orthopedic Hospital Stanmore for intensive rehabilitation for my Ehlers Danlos Syndrome Type Three. I am a mix bag of nervous and excitement. From talking to previous inpatients  of the program it sounds extremely positive and successful. There are many different components to the rehab, such as hydrotherapy, physiotherapy, pain management and sessions with psychologists. On the most part I am very optimistic, my consultants all feel that the treatment should offer significant improvement.

The only part of the program I am wary about is the psychology sessions. If I could opt out of these I would.  Now I shall be sensible and fully cooperate with them but I can’t help my reluctance. I have had years of sessions with varying types of psychologists. Since I have been ill I have had specific sessions with cognitive behavioral therapists to attempt to control my seizures, however out of the three therapists I have seen only one has looked at me holistically. Due to this my file now contains a note from my neurologist instructing therapists not to focus on my past and informing them it has no impact on my medical situation. Click on  VLOG and blog for more info. However, many therapists choose to ignore this. Whilst I am sure the psychologists I am going to be seeing over the next few weeks will be lovely, I worry that they will be like the many I have seen before.

I get admitted at 8:30am tomorrow morning, so it’s not long to go now. My neurologist is convinced it will make a huge difference to my jaw and I’m keeping my fingers crossed he is right.

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Comments on: "3 Weeks Rehabilition Program" (4)

  1. Good luck, will be thinking of you. The note in your file saying that your past should not be a focus is absolutely true and your requests to not discuss should be respected. I would hope that instead, the focus will been your experience of your condition and the impact of the pain, being dependant on others and the feelings of desperation and low mood that you have had but also to focus and build on your incredible strength and resilience xxx

  2. leejcaroll said:

    Good luck Rebecca. Sounds like it will be very rewarding.

  3. I hope it all goes well – but I’m sure you will take it all in your stride! Be careful not to upset the psychotherapists: tell them you have explored your past in detail many times before (they will probably want to know precisely when) and would prefer just to address the present (“holistically”). Although they will want to know a little about where you’ve come from, they don’t have to spend too long discussing it – so bear with them and be polite. You never know, you might enjoy talking to them!

  4. Good luck and careful Rebecca

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