Isolation, no overall communication with medical professionals, recurring infections, who to off load to.

[Garden987]

I was diagnosed with ET in2014 after having had a very bout of (we don't know) of pneumonia whilst in Canada in2000. Repeated visits to my GP for 4years resulted in suggesting antidepressants. I knew I wasn't depressed. Just felt very unwell. Eventually and reluctantly, one of the GPs in my surgery agreed to a blood test when it was discovered I had ET ?JAK2. Haemo. Said this is what you have, take the meds. Or don't.Since then I have felt unwell, repeated chest infections and in2015 a Dr who had "an interest" in CFS finally confirmed that I have it. "You have a double whammy".I live in Wales and there are no CFS consultants here and because I live in Wales am not allowed to go to England. I have lost my family other than my two daughters and all my close friends, mostly because they have died or have just walked awayand abecause where I live there is very little on offer (unless you like bingo and scrabble). I have tried every agency for support but there is none. Age Concern looked into what w was available and said "it's appalling" my quality of life is nil and I feel unwell most of the time but keep trying to find answers. GP surgery is becoming more tick boxing, although my GP helps as much as she can, having little or no knowledge of ET or CFS. Because of my continuing infections I am beginning to feel guilty having to go to the surgery so often. I do have a neighbour who is very sweet and kind and helps when she can but she works and has two small children. Other than that there is no one. A prolonged episode at the Chest Clinic has resulted in confusion and bewilderment. The practice nurse was very antagonistic and aggressive when I went to see her re a spider bite 6 weeks ago (which resulted in my having to go to A & E because I couldn't breath). I have just started to use a cleaner which is not on the list of my priorities but it helps. I still don't know whether I have Bronchiectasis but am very breathless most of the time which means I can't walk far. Have had to stop driving because of brain fog - I could go on but what's the point.

The

[Dubba61]

Oh dear, you are having a tough time, Garden. I have COPD including chronic Asthma n I don't know much about your mentioned illness. But, it seems we are both pretty breathless. I live in a rural area too n there are few facilities. There is a day centre but, the people who go are very much older than me. I've tried Clubs locally but people seem hostile to Newcomers. What does help me us I do a bit of volunteer work when I can. Just sitting at the counter and answering customers questions,about local history. I also, find Crafting helps take my mind away from things. And reading helps me too. I wish you well. 😊🌻✌️