Today I used the ambulance service for the first time to take me to an appointment with the respiratory physio. The ambulance service was wonderful both ways. People used to looking after the fragile. Only reservation is they said be ready 7.30 (appointment 9.30) . They came 8.45. Getting up at 6 to be ready 7. 30 was not easy. Only mid morning appointments from now.!!!
Then the appointment. I had a one to one with the respiratory physio for 1 hour. I I was referred by my consultant h because I hyperventilate a lot. She asked lots of questions, listened, and made suggestions. Then she has given me some exercises. I came away thinking the nhs is wonderful.
I’m three years into this Sarcoidosis disease. And on the whole can only praise the nhs for their care. At the moment I’m fighting lengthy prednisalone withdrawal symptoms. The nhs seem to have really supported me . I’m lucky too as my gp is very supportive too. I’ve reduced from 5mg to 3mg but I can only walk for 11 minutes without stopping. A previous 7 minute walk takes 30 minutes with lots of breathing stops. When I can walk 15 minutes without stopping I’ll cut to 2mg. If anyone on the forum has any hints, would love to hear them. If you think a respiratory physio would help, ask your gp or consultant.
I’m really enjoying all the poetry , so well done all of you for keeping my spirits up.
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Jomo46
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You certainly seem to be well looked after Jomo which is good. Things seem to be going quite well in the whole.
Sarcoidosis is such a complicated disease but I’m glad you seem able to cut down on the steroids. Pete isn’t able to do that though he has tried. He’s happy to take 2x5mg tablets every morning and they help.
I do wish you well and hoping for later appointments in the future. Lol. Xxxx
Thanks sassy. I beginning to feel like I’m in a big family with this forum. Everyone is so supporting. Tell Pete I hope he has a good day. - and you too.
You are so lucky to have a supportive gp. We had one until 3 weeks ago. He decided to retire after being a popular gp. He was brilliant with my condition he gave us ad family so much help. So waiting to hear who our new doctor going to be. Hate change having to get used to another go I get worked over change my anxiety kicks in so hoping he or she will be as good as our last gp.
You could try joining a singing for lung health group to help you strengthen and control your breathing. The British Lung Foundation lists groups all over the country, including my own in south Cheshire: no experience needed, no need to be able to sing well, just join in as best you can. All the best.
It's lovely to know you are getting the help you need.
Being able to walk for 15 minutes is quite a target. Just an idea: you know you can do 11 so why not do 12 in the morning and your 11 in the afternoon. then if not too tired the next day try 12 morning and afternoon. Next day 13 then 12 and so on. Any day that leaves you too tired then stay at that one less minutes for a few days. You may find half minute increases are enough.
It's all about a balance between pushing yourself to increase stamina and pushing too far and fast for your poor tired body.
When I did 11 minutes it was approx 1 minute stop. 2 minutes stop. Then a big stop and let breathing go to calm relaxed breathing which can take 5 minutes. Then I did the 11 minutes. It’s as if I need a warm up. In the recent past I have found on continuous walking, that it improves after 7 minutes.
I think your idea is a good one. I’ll try it thanks
I found it difficult to get transport. Asked a lot if people without success . I had used this when i had a broken leg 10 yrs ago but could not remember the name or number. Eventually struck gold. I had to go 28 miles to Salford for spine specialist. 2 trains and 25 min walk either end. The walk defeated me! Taxi fare there and back £100 so i was pleased to get the ambulance transport eventually. Second opinion at Oswestry was even further away so doubly welcome. A ll the drivers are volunteers and they are brilliant. The last one i met was the driver who i first met 10 yrs ago. He remembered me ! ? ? He has since raised £50,000 for this ambulance service and been given an honour for it. The MBE i think. Well deserved.Not only drives people around all day but organises disco events in evenings to raise money for the service.
Glad to hear that you got the transport and you arrived safely Jomo46, now I know they are volunteers it makes you appreciate the early hour they are getting up to take people everyday and not even being paid for it, I really must look this service up and donate something.
Well it seems like you have had very good care from the nhs which is nice to know. Im sure you can get your predisalone dose down just take it slowly, you will do it, exercise is the key Im sure. Take care x
I think there is a volunteer service and a nhs one. The nhs one is called PTS. Or patient transport service. You can find system under google PTS nhs. I was in a well equipped ambulance, with a driver and other, in the back with two patients. When you book them they give quite a detailed questionnaire. We were never left alone. The level of service was superb. If you don’t qualify for that, the details of the volunteer service is on the same google page. I agree volunteers can do a wonderful job in all situations. When people have to work TIL 70 the country will have lost an amazing workforce and even the grannies for picking up children from school.
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