This is my first post here, as I'm new to this. Feeling quite stressed and somewhat confused, (despite being reasonably well informed re: my conditio). Emotionally, not doing great even though I know lots of people have far more difficult situations to deal with.
Just a bit of background to my situation. Over the past few years I have experienced on going skin issues i.e. Abcesses and cold sore/ recurring and shingles. Predominately on my face. Very painful and debilitating - not to mention unsightly at times. Despite being recalled for repeated blood test and investigation at Dermatology dept. etc I was eventually referred to a heamotologist, ( about 12 months ago). I do not have JAK2 or CALR mutation and naively thought I'm okay then.
I declined bone marrow aspiration, as was advised this was quite painful and unpleasant. Wasn't actually given a diagnosis. Just that my blood was a bit thick and too many platelets and that I needed to take 75mg aspirin.
I had been feeling very tried and run down for the past couple of years and experiencing ongoing infections.
I had been on 3 month checkups at hospital and recently went in December. The consultant I usually saw was off- but the one I saw advised that my platelet level had dropped but it was still higher than it should be. She then gave me an appt. for 6 months time with Clinical Nurse Specialist and a year with the consultant. I was feeling quite good, but then she gave me a leaflet and I went off. In the car reading it the leaflet was titled - Essential Thrombocythemia. I was quite taken a back when I saw blood and lymphatic cancer.
I rang back and the Consultant returned my call. I asked if I had the condition and her reply was 'you're being treated for essential thrombocythemia'. My platelets were 468 and I'm having B12 injections which have helped with the tiredness, but still feel exhausted. Now having palpitations and having to gave ECG, ( as pulse rate too fast). Think this is possibly down to anxiety!!
Feeling a bit fed up that despite knowing I have this condition there doesn't seem much I can do to help myself, apart from taking aspirin.
Every time I do much physical activity my hands and feet seem to go very red and I feel trembly and so fatigued.
Does anyone have any ideas to improve my resilience and get more energy.
I did take anti viral s for a while to help stave off ongoing cold sores, but they soon return. Have tried lysine too, but not sure if I can take this.
Any ideas to help me physically and emotionally would be very much appreciated. Sorry to have gone on. I know people have so much worse situations.
Thank you in anticipation. Xx