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those with long term/ unpredictable illnesses

(14 Posts)
superbagpuss Sat 27-Dec-14 11:42:50

I have been recently diagnosed with arrhythmia heart and postural hypertension I think ( my heart beat is off and my blood pools in my feet when I stand for 10 minutes so I collapse)

when I have both together I cannot stand and feel pants

I have no indication when this may happen and when I have a bad day

do I never book anything again as I don't know how I feel?

do I get a little stick to lean on?

do I go out for the day and get a wheel chair if needed? this seems a little bit much

how do other people manage? my DC are little and I don't want them to miss out because of me

superbagpuss Sat 27-Dec-14 16:06:11

anyone?

mrspottasbubble Sat 27-Dec-14 16:18:42

I have psoriatic arthritis and things have had to change for the kids here sadly. With the planning of stuff I never ever promise anything to anyone any more as until it's under control I can't guarantee if I can do it. Rubbish really!

MuscatBouschet Sat 27-Dec-14 16:20:22

I can't give you advice on your specific condition but do have a life limiting medical condition. I remember what it was like to be diagnosed and feel like I'd never be able to have a normal life. But over time you do come to terms with these things and figure out ways to cope with them. There are forums all over the Internet for most medical conditions where people come together to give each other support and advice. Do see whether there is one for you.

If you need to sit down most of the time then you'll have to become very pushy in asking people to give up their seat or share a table. Crutches and wheelchairs sound like excellent ideas. Or why not buy one of those portable stools that you see people with? Sure, you won't be able to play football with your kids, but you will most likely be able to see them grow up and support them in almost everything they do. This is surely a blessing?

LadySybilLikesSloeGin Sat 27-Dec-14 16:23:48

Ds has hypermobility syndrome and can't walk further than a few meters without pain. You need to apply for DLA, this will help. I make sure he has rest stops (a lot of them) so try to do this for you, remember to factor in time for this when you're going out. If you ever need the bus, make sure you get a seat too.

2kidsintow Sat 27-Dec-14 16:25:50

My friend has POTS, and another has CFS and Fibro. THey have both bought themselves small mobility scooters so they can still go out and about, in the case of my POTs friend, without collapsing while standing at the tils.

OhYouBadBadKitten Sat 27-Dec-14 16:49:39

I have PoTS it is really well controlled by ivabradine for me. Can't praise the med highly enough, they transformed my life. Symptoms are now quite rare and tend to only happen if I have an infection or if a medication doesn't agree with me.

superbagpuss Sat 27-Dec-14 17:08:18

thank you for your replies

I've only been having symptoms for about 6 months and in may I ran 5k so its been a huge shock

any more advice or stories from others would be helpful

superbagpuss Sat 27-Dec-14 17:10:06

and I know that am very lucky in that it can be managed and I can still drive and work etc. its just the silly things I worry about like a trip to a theme park or a day out in London

OhYouBadBadKitten Sat 27-Dec-14 20:18:27

If you can get the right treatment you won't need to worry. Are you under a cardiologist?

OddBoots Sat 27-Dec-14 20:28:26

Keep on with your life as much as you can but don't be afraid to get and use the equipment you need - I spent years afraid I wouldn't cope with things so I really restricted myself. I've had one of these rollators with a seat and it has helped so much knowing I could sit whenever I needed to and this particular one folds narrow so if I want to I can use it one handed and get through narrow gaps.

superbagpuss Sat 27-Dec-14 20:50:02

thank you for the advice

I have a cardiologist, she wants to see if I can manage with lifestyle changes first before trying drugs

OddBoots Mon 29-Dec-14 08:42:26

"just the silly things I worry about like a trip to a theme park or a day out in London"

Just returning to this thread because I had a day out in London for the first time yesterday since getting my frame (see previous link) , we did the Science museum and the frame was no problem at all, I had to wait a while for a lift to have room but then that is the case with buggies too. I've also been in email contact with a west end theatre as I am going in the spring and they are happy to look after my frame for me during the performance.

I've not used my frame at any theme parks but I have used a stick with a seat so I could sit when queuing and that was no problem. Because of my condition (and I'd imagine yours too) I couldn't go on a huge number of rides but I could be with my DC and DH as they queued and meet them at the end - I've done that at all the big Merlin parks in the past. Now my children are older they go without me but I didn't want to miss out on taking them when they were little.

superbagpuss Mon 29-Dec-14 17:50:16

thank you oddboots

we had a day out today at a farm, some walking but lots of benches to sot on a some soft play so I could have a rest

I feel tired now and felt unsteady a couple of times but I managed grin.

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