pippamc1

Hi everyone, its been a long time since i posted on here, but i read it regularly. This thread really got me going! I've been this way for 8 yrs and still get the 'you don't look sick' comments. Or 'you look fine to me', or 'yes i get tired too'. I try hard to work 18 hrs a week and had 4 months off last year and the same this year so far. i don't know how I drag myself around most of the time and often cry with even the thought of the effort involved in the simplest tasks. Even the thought of standing up makes me weep as I know how dreadful I will feel. I get back to my desk and realise I have forgotten a file and need to go back to the filing cabinet, meaning I have to stand up again. If only the fog would go then maybe i wouldn't have to stand so often! I have to walk with a walking stick an often get sideways looks obviously wondering why such a young healthy looking individual is using a stick. I have been questioned whether i actually need it. Obviously this is from people who have not seen my frequent falls. I have been questioned about my use of a disabled badge in my car as i look like i could walk for miles. I too put on a bright smile and try hard to look on the positive side of life, then people say i cant be that bad or i wouldn't be so happy!!! can't win. There are very few people who really understand the impact of this awful condition, except you guys. You all understand how hard it is to get through each day, to have to consider each thing you eat in case it makes you worse or wont digest, to have to think hard if you really have to get up and go to the loo yet again, to have to consider if you can make it from the chair to the nearest thing to hold on to without falling over. I think we are all b####y marvellous. Heres to us.

Thankyou all so much for your kind words and encouragement. As you all know this is such a lonely condition, and those associated with it. I do not have any doctors helping who are familiar with POTS - I live in england and it seems to be fairly unknown here. Its very frustrating. A great doctor diagnosed the condition and gave the first support I'd ever had with the CFS, but there does not seem to be any help now. I will keep an eye on the goings on in the forum, I'm hoping to gain alot from it. Thanks again Pippa

Hi everyone, this is my first time posting on here - hope it all makes sense! I have had CFS/M.E and IBS since pregnancy in 2006 and recently been told I developed POTS soon after. This whole thing is really confusing. I have a gorgeous six year old girl, though it has been hard going bringing her up. I got pregnant last year and was so ill and bed bound with hypermesis, CFS relapse and awful POTS symptom. No one helped and I ended up having a termination, which I still can't believe I did. ANyone else had simular experiences? ANy advice for future? It seems the standard advice for POTS is no pregnancy - is this true? I have been quite stable for a while and work a few hours a week, which is great. I don't do the crawling thing very often, haven't fallen over so often, although my blood pressure is all over the place and balance can be terrible. My heart races at various times during the day and night, nausea can be frustrating, and I don;t really have a socail life cos I'm just too exhausted. But I do care for my little girl, so I'm really lucky. Does any of this sound familiar to anyone? My list of symptoms is too big for here - as I'm sure are most peoples, I would just like some reasurance I'm not going mad and am not as alone as I feel. Any comments would be welcome Thanks for reading all this