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hensor

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About hensor

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    Oxfordshire, UK

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  1. My books "You know you have PoTS when..." are bright green
  2. I'm not an expert compared to most on here I'm afraid, but I do get a heavy/full feeling in my abdomen which I reckon is blood pooling. I haven't noticed vasoconstrictors changing this much - I am on midodrine. However, I do think midodrine improved my levels of brain fog/exhaustion. They haven't disappeared, but I can now hold a conversation most days so they have definitely helped me. Infact the first day after I started on them I went from complete continuous exhaustion to fully alert and I wrote a poem there and then! My Dr told me not to be silly because the meds I'm on "don't help wit
  3. Is there anything you can do to achieve something for yourself? develope in your own ways? creative writing, art-y stuff, something internet based, crafts, design? Since getting badly affected by PoTS I started drawing cartoons, which I then showed to a few people and now I have done 2 cartoon books (one on HMS/EDS and one on PoTS) which I sell to raise awareness and funds for relevant charities. (sold more than 200 in just over 1 year) So other 28 yr olds might have kids or careers, and their own homes (I live with older sister), but I have written 2 books! Your life might run differently, b
  4. And nowwhat, your diagnosing psych seems almost as bad as mine - I had been told 10 minutes before that I had PoTS. She says "do you know if EDS and PoTS cause slurred speech?" Me: I'm not sure. Her: In that case it must be psychological." - yuh! that sounds like a good diagnostic criteria! Muppet.
  5. (NOTE: I am in the UK, so I got all this 'on the NHS' so finance wasn't an issue) Just wanted to add that I have been in almost exactly the same situation. Got diagnosed as psycho - then they realised it was EDS/HMS. Got more symptoms and diagnosed as psychosomatic (on the basis that I wasn't depressed by my EDS/HMS and was still working????) then they realised it was PoTS...but by then the psych had already decided I needed an inpatient stay in a psych ward of about 6-8 weeks. I really didn't know whether to go or not. To put myself through something so hideous just to please Drs, or to walk
  6. How about a spray-bottle of water? I find that can really cool me down.
  7. I'm another with PoTS and EDS/HMS. and yes, fatigue is one of my major symptoms. I reduced working hours down to 15 hours per week and am now off sick entirely and loosing my job. And yes, the 'get so far then have to lie down and 'shut off' from everything' is very familiar. I will get so exhausted that I can't talk and can barely lift a finger. Like my whole body switches off and I can't even run off stubborness anymore. I have good days and bad days. One thing that is actually really helping me is learning what the little early warning signs are and taking mild evasive action at that stage.
  8. I have a pair of compression stockings which I got prescribed by the NHS - local nurses should be able to prescribe them and a pair of 'skins' footless compression tights designed for runners/athletes. Have you tried asking your GP for some?
  9. Have you looked at the 'cool vests' thread? Some people have had great results with using them in hot weather - I have one on order and hope it will make the difference between me being a useless flollop for the next 6 months, and actually feeling like a human being! Hopefully...
  10. Well, I live near a main-line station, get the train into London using 'assisted travel' so nice men come and wheel me on and off the train using portable ramps, then I get a Taxi (ignoring the queue cos I'm disabled and can do that!) to the hospital - I don't do buses and my arms aren't good enough, and the underground looks a complete nightmare for wheels. So I guess you could say I cheat! However there is a assisted travel thing for London where you can get people who will actually help you right across London, and who know where is wheelie friendly and where isn't. And it is free! Haven't
  11. I'm a wheelie too - but I also have EDS which has made my knees a reliable as a string-puppets'. Even with robot style knee braces. For bad PoTS days my wheelchair is amazing, but I also have to be disciplined and not automatically use it whenever I feel bad - I am determined to be as fit as I possibly can with my conditions. So I have a 'no wheels inside the house' rule to I make sure I walk as much as I can - even though I sometimes end up crawling, and then when I have a massivley wobbly day (like, incidentally, today!) I will use it inside the house but then I have to do more than norma
  12. I too have to take snacks with me every time I'm out - to the point that when I'm at church I go out during a hymn half way through and eat a pack of crisps/peanuts then go back in feels really childish, but it's necessary so they can like it or lump it
  13. Sorry work is being so insensitive. It really is hard to get people to understand without them switching off and thinking you are just complaining. My direct colleagues have been amazing - but I think it is partly cos over half the people I work with have close relatives with big medical issues, so they are used to the reality of complex medical conditions. The facilities team however kicked up a massive issue about my department being 'demanding' in asking for a cool office, and even in an official investigation said how I was being 'unreasonable' - it really hurt when all I was asking was t
  14. I'm another with both, and I don't know what type of PoTS I have, just told that I have it and it is linked to my EDS.
  15. I agree with thankful - take it as meaning you need to make sure you are hydrated enough etc, but don't let it put you off your plans! Everyone has random 'bad days' but it doesn't mean you will stay like it forever and you have to stay at home. Infact even non-pots people can get tachy or faint if dehydrated in warm weather. I was still working when I had quite severe PoTS even though I was practically always what ramakentesh brilliantly calls 'droppy'. Perhaps in your job you will benefit from standing and wiggling frequently, and having a cooling spray incase you get too hot. Look at wheth
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