CFS/ME diary 2 – Initial Assessment

My next stage in my CFS/ME journey was to be referred to the hospital.  I would recommend reading my previous post first to ensure you know the back story toe ensure this part makes sense.

My hospital appointment was on the 20th September 2018 and at this time I was in my second week of my full-time business apprenticeship.  It was in the Infectious Diseases Clinic (which terrified me when I saw it on the letter!!) but turns out that was the only free room!

Initially, she asked for a full medical history outline in my words.  I told her about my coeliac diagnosis and all of the tests I received as well as when I first started experiencing symptoms for ME/CFS.  She wanted it all to be on a rough timeline – it might be useful to have things noted down to ensure you don’t forget anything.

Next, she asked about my symptoms.  I had made a list on a separate piece of paper as I didn’t want to forget any as mine are quite varied!  This proved useful too as she actually took my copy as it ensured they didn’t miss anything/saved her writing down everything!

Then, she asked about activity I currently do and activities I had to give up.  She was shocked that I was working a full-time job, but little did she know that was I going to crash a day later and have to give it up!!

After this, she asked about family health issues.  I found this the hardest as I wasn’t prepared and my parents weren’t there to answer the questions!  Make sure you go in knowing any health issues for immediate family members or illnesses that run in the family, including mental health.

Finally, she filled in a tick questionnaire which was to answer if I had the correct diagnosis and was eligible for ‘treatment’ (as she called it).  This was nothing to worry about as she could answer most of the questions from our previous discussions.

She then told me that she suspected my CFS/ME came about as a result of my prolonged diagnosis of coeliac disease, especially as my symptoms were quite severe and physical.

Overall, I was in the appointment for about 1 hour.  Although I didn’t get any medical advise or help this appointment, it was essential to go to get the ball rolling.  A fault I did have was that she kept calling it treatment, however, there is no real cure for CFS/ME, only management.  At the time, I also felt frustrated as I didn’t receive any actual help from this meeting, it was only a diagnosis discussion.

I hope this was useful.  It is quite a brief post as most of the time was spent talking by me explaining my health issues.  Don’t worry about taking notes in, if it helps you, definitley do it – it helped me!  Also, they weren’t asking highly difficult or personal questions so I might have brought one of my parents in to help answer the family history questions.

My next post in this series will be up soon – my first meeting with the physio!

For support, visit the ME Association.  If you think you may have CFS/ME, here is the NHS page.  I urge you to contact your GP.

Have you read my previous post? Diary 1 My GP Experience and the next post in the series can be found at Diary 3 First Physio Appointment


Leave a Reply