fiona-jane

i struggle to eat in the morning too, but find that liquids are ok so now have ensure drinks (medical meal replacement drinks) cos my weight dropped a lot when i cut out breakfast completely cos i have gastroparesis and struggle to eat for the rest of the day too due to it (but when it lets me my PoTS doesnt flare up). i also struggle after i eat a relatively large meal cos more blood is diverted to the gut to digest it and so when blood pools in my legs etc there is even less available to oxygenate the brain, so i feel like poo and get very fainty and nauseous. so cut my meals down into smaller portions and eat 6 a day rather than 3. and due to gastroparesis i've learned to stick to soft or liquid meals, PoTS prefers these too.... and i've always been a fan of soup and custard so i'm happy! oh, and standing up after any meal is a big no no for me. usually hit the floor unconscious pretty quickly. or just get so nauseous that i bring everything back up. sometimes both. good excuse to relax at the table rather than doing whatever chore needs doing.... fi

the 3 symptoms that bug me the most tachycardia gastroparesis (that comes with a large amount of nausea) exhaustion that never seems to improve no matter how much rest i get (doesnt help that i have a sleep disorder......) get very dizzy and faint lots but since getting my chair it's not been quite as bad so left it off my list. its hard to pick only 3! fi xx

oops, forgot to add- exercising sat down (or laying down for when i do much of my physiotherapy) has helped with my tiredness and hit-by-a-truck-ness the next day, unless i get too carried away. simply walking across the road makes me feel awful the next day although sat down i can play badminton for an hour with little side effects the next day..... maybe cos my body doesnt have to work so hard to control my blood pressure, heart rate etc during the exercise session? frees up some energy for badminton fun! woo! fi xx

i've struggled to exercise while stood up for a while now and while it was getting better slowly, my progress was very slow. but now i have my wheelchair i find i can do proper actual sport now (i play badminton once a week, something i thought would be impossible).and i started playing 2 weeks after i got my chair so it was definately the chair that makes it possible....... been playing for a few months now and have noticed that my overall health has improved a little and i dont get as fainty as i used to do when i get up and walk around my flat so i think the cardio exercise is beneficial to my dysautonomia (just not when i'm stood up.....). maybe doing exercise sat down would help you too? some disabled sports clubs have chairs you can hire for the class, and you can cycle in gyms using semi-recumbent bikes etc. fi xx

hiya, i buy the vast majority of my grocery shopping online and get it delivered and just pop into my local store to buy things i've run out of etc. not sure if online shopping is available to you or not, but it's made my life soooo much easier. it was a task i used to find very difficult and i'd run the gauntlet of fainting in the store or once i got home so was quite risky, and totally exhausting. i now use a wheelchair, mainly due to walking and standing problems due to my ehlers-danlos syndrome but i find it also helps my dysautonomia loads as some of my main symptoms comes from being stood up- a few seconds and the dizzy starts and a few minutes i'm out cold on the floor so before i discovered online shopping i got really good about finding aisles in the store that had shelving at the right height to be sat on! i also used to queue up to pay on my knees (and shuffle along on my knees) so made sure i wore my old, tatty trousers so i wouldnt get upset when i got them dirty (although the queue area was always very clean after i'd paid. now i'm thinking i should have invoiced them for my services ). but the wheelchair means i dont have to stand up, and so my symptoms stay constant and i can be pretty sure that if i'm not at the point of fainting when i leave the house to go shopping (and in such cases i just dont go) i'll not faint when i'm out. as long as i dont stand up too often.... and its really helpful for conserving energy as its much easier to propel the chair round the store than it is to walk as the floor is usually all nice and smooth (feels like a racetrack- the smooth, lowered friction floor i hated so much on my crutches i now LOVE! ). is borrowing a chair or scooter an option when going round the store? maybe this may help if it's available? my local supermarket has a little cafe so i also used to factor in a sit down with a cup of tea or some food so i could have a rest, but this meant i needed to have someone with me to help me plan what to put in the trolley before our cafe stop (or i'd put in fresh or frozen stuff that would end up defrosting or going bad really quick after i got home). but it made me able to buy food for a long time so if the option of a cafe break is an option i'd take it i also freeze milk and other stuff and buy in bulk every few months and get my carer or mum to help me sort it all out once it arrives and help put it in freezer containers and into the freezer. you can freeze most foods and it makes life soooo much easier when i'm in a flare when all i need to do is get stuff from the freezer than order new stuff, and i also struggle to remember to buy groceries etc when i'm in a flare and so without freezing stuff my fridge would be bare! also freeze gluten free bread and get mum to make up pots of stir fried veg and lightly stewed fruit to freeze so i can have a pretty healthy diet even when i totally forget to shop- the carer knows to get stuff out of the freezer and put it in the fridge for me if i'm missing milk or bread and writes a note on my whiteboard notice board when my stocks are running low so mum can see and remind me to get more stuff (or buy it herself, which she does sometimes when i'm very bad). and tend to stock up on canned, long life milk and dried foods for just in case eventualities if i run out of freezer foods before i can get more. thats been really helpful too fi xx

hiya, i'm very variable too, with good and bad days although i always struggle during winter months. technically i can select all of them. i'm technically able to work but i'm only capable of working 3 hours a week. any more and i get really sick- unfortunately i realised this the hard way. i used to be able to work full time but since 2007 my health has been gradually deteriorating so i'm just glad i'm allowed to do a few hours a week work and stay on employment and support allowance benefit so with the 2 i manage to live on the breadline rather than under it. work are really good about me needing to change the day i work, the time etc even at very short notice, and i can take as many sick days as i need without any of them counting towards my 4 allowed incidences before we get disciplined (as they're disability related they're classed as one incidence no matter how many i take). these are the main reasons why i'm able to work (that and its very close in the car... only 10mins). otherwise i'd be totally unable to work. i was very lucky to get the job, it was through one of my church pals who also works there. she heard that the newly built office was looking for disabled staff as they didnt have any and they needed at least one to meet their company's criteria (huge company, but new office (inside a beautiful garden centre, its so nice! ). and the person had to also be experienced, good at their job etc so i was put forward for it. i'm technically able to exercise and particpate in sport, but only using my wheelchair and i need to take a lot of breaks. and needs to be a sport where the activity level isnt too high for more than a few mins at a time or i pass out. i play wheelchair badminton and it seems to be working so far. and it helps that the centre is literally round the corner from my flat! i experience symptoms when i exercise but as i also experience benefits (it seems the fitter i get the better my body is at coping with flare ups, especially those that come from viruses) so i just take it easy and make sure i listen to my symptoms and go lay down if i get too near to fainting. and take my salt with me and drink loads of water to pump up my blood pressure! as for going out- i dont go out that often, and actively try and stay indoors in summer cos i get heatstroke super quick (even living in the uk , dread to think how you guys in hotter parts of the world struggle with the heat!) so i cant go very far. i'm mostly housebound, even though every week i do go out for badminton round the corner and get a lift to church once a week. apart from that i dont go out and able to take my laptop home from work so i dont need to go into the office every week. go in every few weeks to catch up. i get my groceries delivered to me, and get anything else i need to buy delivered. the local chemists deliver my prescription medications to me. any errands i try and do via the phone or online, or a friend or family member will go do it for me. as i pay all my bills via direct debit and use online banking, i dont have many errands to do in person every month. used to have loads but over the past year i've been doing all i can to minimise the effort of sorting them all out etc. i dont have children and so this reduces my outdoor chores quite a lot, well at the moment. at one point i'll probably have them as i want kids eventually. i like to socialise but most of it is at church at the moment (after mass, we have coffee and a chat with my pals and get a lift back home),or after badminton (as i need a break before i can make the journey home, (even though it is only round the corner) so we go up to the social room and make ourselves tea (or in my case, juice so i dont dehydrate. i've been banned from dehydrating fluids after exercise by my badminton pals cos i freaked them out by fainting... oops ) and my pals usually come to me so i dont have to go out . and socialise loads via the internet and mobile telephone- can talk for hours, as long as i talk laying down to stop me fainting! and generally i've been coping better lately cos i now have a carer a few hours a week (in addition to what mum does for me, cos i have to pay and can only afford a little). it's great to have regular care now so get washed and dressed, get my housework done and any local chores (like popping to local shop for more toilet paper, or to post a letter etc), it means i dont have to do as much that stresses out my autonomic nervous system so *touch wood* i dont faint as much as i used to and generally feel a little less exhausted. i expect thats why i'm able to do the badminton- 6 months ago (before care started) i was always so exhausted that even breathing seemed like strenuous exercise! oops, sorry for the essay! the more tired i am the more my mind rambles and posts get longer and longer and longer...... oh, and just realised i forgot my evening meds. ooops..... fi xx