"ME (myalegic encephalopathy) a nurses story."

I am a staff nurse who worked in the NHS since 1999. I was diagnosed with ME 4 years ago and was able to continue to work. I changed jobs to a less stressful and reduced manual job in the community. I loved work, but continued to 'push through' my symptoms as society expects it and often it does no harm. Unfortunately nobody told me that this is severely wrong to do with ME. I pushed my ME from mild / moderate to moderate/ severe. I developed fibromyalgia and POTS symptoms and if I had not been informed by the charity Hope for ME and fibro NI, I could have ended up bedbound! 

My work colleagues and medical professionals often told me "you're ok, just keep going, nothing a good nights sleep would cure.....". There needs to be more training for medical professionals regarding ME. I am one of the 'lucky' patients who had a GP who is ME aware, there as so many others who are being harmed daily by incorrect treatment. The charity also has educated and provided lots of awareness to not just myself, but has ran sessions for medical professionals. 

I am really thankful for the charity who stopped me in my tracks and prevented further decline in my chronic illness. I have been out of work long term since March 2019, and after a long and thoroughly enjoyable career my employment contract with the South Eastern Trust will be terminated due to ill health. I have had no improvement since pushing myself too far 18 months ago. It is heartbreaking to not only lose my career, but I was the bread winner and a carer for both my husband and my mum, now I have plunged my household below the poverty line and struggle financially, I am mostly housebound and have no real quality of life now and may never be able to work again. 

Trying to get benefits is an awful system that is too exhausting for those who are chronically ill. 

More awareness and understanding of hidden illnesses is needed, especially autoimmune illnesses. The stereotypes and outdated research needs to be stopped! Many post Covid patients (I think it is about 1 in 10) are complaining of ME related symptoms and could be treated with care, rest and understanding and prevent the exacerbation of illness. 

My opinions of care are that the hospital consultation for specialists are ridiculously long. I have been under investigations by cardiology at Lahan Valley for over a year now, yet I have only seen them twice and had 3 tests, all of which could have been completed within 2 weeks. I am still awaiting to be seen by rheumatology at Lagan Valley the past 4 or 5 years now, and am still on the waiting list. 

Overall care is sufficient when you are an inpatient, but the outpatient care I recieve is severely lacking. I am fully aware the nhs is short staffed with both nurses and DRs, but in my opinion there are too many managerial staff and too little many frontline staff!

GP care is varied across the board and there are some excellent GPs and some who cause more harm than care. 

I believe the whole system needs to be reviewed and brought up to date and remove bonuses for staff and pay those on the front line a lot more as they put themselves and their families at risk daily, work more hours than they are paid to do, forget to eat / drink / go to the toilet as there is often no time to do these.  

I would be happy to answer any further questions if required.