I’m so glad you feel a bit easier today. Maybe it’s all the work in the garden you’ve been doing that caused it especially if the soil is very dry.
I put a lot of the symptoms I have down to SF but especially breathlessness which comes on quite quickly when I’m walking up a slight incline or after I’ve eaten a meal and then do something active it seems to stop me in my tracks. It’s so frustrating because I didn't have this problem before the stroke but when I explained this to my GP he could find no reason for it.
Hope you liked the photo of Malta I added last night. I had forgotten how hot it was there last year until I looked at the photos I had taken. I think we should all move there if only for the weather. It’s raining here today.
Now is it the SF that brings on the problems or do the problems bring on the SF.
When SF has descended I quickly become barely able to walk. I am quite a fit person (huh, thats done me a lot of good, not) but if less fit I am sure breathlessness would quickly follow.
After 41 months I had hoped for some improvements and certainly a settling of everything so I could learn to cope. But it doesnt seem to go like that. I suppose I am using the "old me" to deal with "new me" problems. These bad spells are just depressing. I read my stroke diary and I know I am far less ill than I was, but somehow it doesnt feel like it.
I dont think GPs have the necessary experience to deal with us. We need separate stroke follow up medics. And that would ease the pressure on our overworked GP surgeries. We are the forgotten cinderella illness.
Hi Colin, I have had Rheumatoid Arthritis since my early 30s, so have learned to deal with the pain + discomfort that it brings. I've probably tried every trick in the book to alleviate the pains, but nothing beats anti-inflammatory meds and a good rest!! Be kind to yourself today, and surely you will feel much better tomorrow xx
I’m not sure if it is the SF that brings on the problem.
I find I get a strange feeling in my knees and lower legs ( a bit like having heavy legs and a bit hollow) which is quickly followed by breathlessness. I don’t know what it is but I put it down to SF. It’s the weirdest feeling and I’ve had it about 6 months at least.
I have found recently that if I do too much in a day I get bad SF and start to make mistakes, can’t make decisions very easily. I’m still having periods of tinnitus but seem to be able to cope with this now - I am probably ignoring it more now which is a good thing I think.
I agree with you about GPs not having enough experience to deal with us. I have been referred to a stroke specialist by my GP to get some help with my emotions which are still causing me problems, although they are now less frequent than they were, so hopefully it might not take too long because for me this is the biggest problem I have.
Well now I feel like I’ve had a winge - I’m sorry to offload.
I have a small bit of arthritis in fingers which is nothing to do with stroke, just old age. I think the "shoulder" thing is a bit different. Its a duller pain and its there all the time, just varies as the day ticks by. I am in a bad place again today, as the pain is as bad as Tuesday. I couldnt get off to sleep Wednesday night. Ibuprofan doesnt work for me, so its paractemol today. Wife wants me to see doctor but I cant get in the car let alone drive, so a bit stuck. Things could be better by the week end.
i dont know about the srange leg pains, but all the other horrors are typical of us SS. Which doesnt make it any less painfull for you.
I am 40 months on and thought I was pretty much over the emotional stuff. But no, for three days running I am crying and us men dont cry, do we. As soon asthe tears subside i want to be sick.
Now something constructive. I have purchased a tinnitus relaxer. £23 plus postage. It plays white noise overlaid by a choice of sounds. I use waves on the beach. I set it to play for 30 minutes and it works everytime for me. It is a pretty cheap tinny thing run on batteries. My "tinnitus" is intermittent, which might be a contradiction of terminology. My friend has heavy duty tinnitus and has a fabulous sound system tinnitus relaxer and speakers built in to the pillows. She also has sound cancelling headphones, which I find excellent. This equipment was paid by the insurers coz the tinnitus was cauused by an accident on a tram.
SF does interact with our wellbeing, and I am unsure which is the cart and which is the horse. My attitude is to try and ignore as much as possible, This isnt good if anything gets bad enough for medical treatment as i have ignored all symptoms !
My pulse rate would dip and leave me breathless. I wanted a pacemaker by the doctors deflected my interest and they have turned out to be spot on. My pulse has gradually settled. I wonder if your breathkessness is connected to pulse rate ? Just a thought
Things do improve over time. Its just hard to see it when one of the problems is getting at us.
Hi Colin - I can sympathise with your wife's suggestion to see the doctor, does your GP practice do home visits or telephone consultation? We've used this service when I've been unable to get my husband to the surgery. He's not a big chap, but I'm quite small, and there have been times when I just couldn't physically get him in the car! I understand that you're trying to cope with this independently, but it's lingered around for a few days now, and as we approach the w/end, options become more limited (something we've come up against in the past). The persistant pain is naturally going to get you 'down', then you will probably have even worse SF, and so the cycle continues. I hope you can sort something out soon, you need a break, take good care, Nic
I’m going to look on line for a tinnitus relaxer, I’ve had tinnitus most of the afternoon/ evening and it’s driving me mad. Altering the volume on my hearing aid doesn’t seem to help today. Oh well not to worry.
Sorry to hear you’re having a couple of bad days due to all the rubbish emotional issues we get. I find it hard to explain to my husband why I feel so tearful when really there is no reason for it, it just happens and I have no control over it. Thankfully it’s becoming less frequent but I still have no control over it.
I’ve not thought about checking my pulse when I get breathless to see if its fast or slow but will do now. I don’t think it gets faster because you can usually feel that in your chest. I’m waiting for an appointment for the hospital to do with my emotions and the effects of the stroke so will ask them about it.
Youre right things do improve over time, when I look back in my diary at some of the entries I’ve made I can see how things have improved but it takes sooo long you need to be very patient.
u r spot on about the week end. i am trying to see the effect on sf but part of the day i am too far gone to work it out. i dont want to face more medical stuff. yes its head in the sand time. maybe trying to type left handed will convince me.
i like to think of my life as one long break, just me being postive.
pulse rate is not thought about, especially low pulse,yet it is easy to check. often bp goes up and pulse falls. when mine falls to 40ish then i am in trouble. 60 is the normal minimum. my norm is 58 to 62 which is lower than most people.
one online supplier has the name of connevans, they were ok for me.
b4 stroke i never cried. now 40 months on i still get some tears. i cant do a funeral yet. it has slowly improvd and isnt a major prob right now.
i am so phased by all the hospital visits so i now run away from more visits.
i am going thru very bad days. so like the first weeks after stroke. takes ages to dress and i have to get rose to help. shave took 40mins and is the worst shave ever. i am trying to laugh at it.
i have hurt my right arm. i have left sided weakness and the clash of two ailments is difficult. the pain gets quite exciting and i start to will it to worsen as i should then pass out.
sorry about the typing. its left handed and my lef hand doesnt approve
It it sounds like you are not so good at the moment and maybe you will have to bite the bullet and visit your GP like Nic suggests. I know you’re not keen on that but sometimes we just need to run our symptoms past them to make sure nothing is seriously wrong, especially as it feels to you like the first few weeks following the stroke.
I wonder if you have overdone it when you’ve been gardening. It might explain the problem with your arm.
I’ve had another day of tinnitus for some reason, even with my hearing aid in the noise has been overpowering. I’ll check out the device you use tomorrow, hopefully it will have settled down by then. Can’t seem to think straight when the noise is there for so long.
Have a good sleep tonight, you might feel a bit easier tomorrow.
You are of course correct. I should go to GP. For the past four days there was no way I would make it in to a car. The pain really was extreme. Thought with all the stroke pains I would now cope better with pain, but no i cant cope with that level of pain.
This morning it has eased. Thank heaven. Wonderful. I could pick up my tea mug. What is now good is that i can use my left hand without the right arm screaming.
The tinnitus relaxer helps you relax or better still to fall asleep..
I need to have relevant naps during the day, in order that SF keeps to manageable levels. So I have the relaxer on and I drift off for at least a half hour. Like wise getting to sleep at night. When the tinnitus starts up then getting to s;leep is very hard.
My hearing aid makes things far worse so I leave it off most of the time. I have one ear that does hear quite well. Also I seem to get inflamation in the dodgy ear. I did go to the GP nurse about this and she gave me different drops which helped. However the follow up appointment, to talk through whether wax is forming etc, well the appoinment was cancelled when the GP nurse was ill.
BTW I am not sure whether or not I have tinnitus. I use the word to describe noises in my hear that disturb me. Mine is a sort of mechanical hum. Full blown tinnitus is much worse than what i am suffering. Mine does go away part of the time.
Right, now a bit of determination sets in. I am going to plant out runner bean plants with my left hand. The plants are far too tall and should have gone out many days ago.
I like the sound of the relaxer you have, it sounds as if it would help when the tinnitus gets too much. I have to say it doesn’t stop me from sleeping at night which I’m pleased about. I’m a bit of a worrier if I don’t sleep properly - think that’s a side effect of the stroke.
The hearing aid I have has white noise as well as the hearing aid side of things and you turn the volume up until it’s about level with the tinnitus noise. It then cancels out the tinnitus - really clever don’t you think.
From the way you describe the noise you hear I think you may have tinnitus, it tends to to be a mechanical sort of humming and mine always sounds the same, it gets louder if I feel a bit stressed or anxious but the tone is always the same and always in the left ear only. It’s worse indoors as well I suppose because when you’re outside there are lots of different noises around.
Hope you haven’t overdone it planting out the runner beans today. It’s been a lovely sunny afternoon here.
I have good news, we've found a fix for the profile images. We need to make some changes and update the site in order for them to start working again, this will be done tomorrow morning around 9am. The site will be down for a short time whilst we make chages, but after that the images will be working again! You may need to re-upload an image once the changes have taken effect.
I'll update you all tomorrow once the changes have gone live.
It’s a while since we posted so we have missed a lot of your news. However, it’s good to see the photos appearing! ??. Maybe I can catch up with your progress in the coming weeks. Our photo was taken at a nephews wedding just a few months after John’s Stroke and he was exhausted. We’d just flown back from Spain and travelled from Durham to Manchester next day! Hope you’re all moving forward on this journey of recovery?