Get told today that the cons wont sign me back to work!!! I cnt live on SSP when the stupid government wont help me financially!!!
Cons told me he wants to see me weekly in clinic to check up on me and make sure im doing ok..yh great...cnt afford transport though!!!
Got to have yet more blood taken tosee why body not obsorbing amonophylline. .. Untill the work this out...got to struggle on low theraputic level!!
Cons struggling to see why the medication im on is allowing me to have a fantastic few hours over lunch time but when 1700ish hits everything goes downhill. .. PF crash, i can barly talk, cant sleep in bed and have to resort to sofa to be complely up right, end up beig couch potato as struggle to walk anywhere and wake up many time in the night coughing / weezy or having attacks and then waking up in am feeling like ive had 10rounds with Mike Tyson!!
Ive actually had enough of asthma now...
O and then i hear someone in the hospital waiting area saying how they 'dont understand why asthmatics moan so much, not like its life limiting' well here u go little old man have my bloody lungs for a week...actually make that 24 hours and see how u cope!!!
Sorry people but today has upset me!!! :'-(
18 Replies
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Can't help with any of that but massive sympathy and hugs, you must be so frustrated and stressed! xxx
Aw, not surprising you're fed with all that today.Hope it all gets sorted soon.You can get help with transport costs but only on low income/certain benefits, not sure of details though. What hospital are you at? I wonder if the little old man had self inflicted COPD?
Thanx guys!
Not stressing yet, give it a few days once its al sunk in and il be like some stressy goof ball!!
And weston general, there care is fantastic in an emergency...and on the wards...they know me well now lol
and no doubt it was a self inflicted COPD and i bet they get everything given to them on a plate to!!!
*roar*
Charlie - have they checked your cortisol levels? If you're on Pred, have they checked your absorption (particularly is your amiowhatsit results suggests poor absorption)?
how do I get that checked...can I just go tot he GP or will it have to be done by my cons in hospital?! I might request it, I looked at the ""symptoms"" online to, and scarily I have rather a lot of them!
Sorry to hear you are going through this. I agree...Asthma is hideous!
As for the cortisol, its just a simple early morning blood test. If it suggests anything out of the normal range then your cons will prob ask for a synachen test, which looks further into the response etc. What symptoms are you suggesting?
Massive hugs as you sound as though youre really going through the mill.x
Hey!
Symptoms are: fatigue, muscle pain/weakness/cramps, low bp, low blood sugars, weight loss, abdo pain, lightheaded/headrush, shakiness, difficult trying to sleep at night etc...i thought all these were also symptoms of the steroids aswell though hence done nothing about, ive had them for roughly 3/4 weeks and theyve progressivly got worse!
Do i need to be off steroids to have the test done??!!
Charlie - My daughter didnt come off the steroids to have the cortisol test as shes on long term maintenence dose. They check for cortisol, the body's natural steroid as opposed the steroids that you are receiving as treatment plan.
I dont know what symptoms my little girl felt as she is too little to tell us. All i do know is she got grumpy, had dodgy blood sugar levels, slept more during the day, lost LOADS of weight and muscle tone and just didnt look like her anymore
If I was you, Id either give your cons a call and run things past him, or pop along to your gp and mention it there. Some of these side effects can indeed be from using Pred but its always a good idea to get it checked out.
Let us know
Take care, emily x
Oh charlie_warlie you sound like you are having such a terrible time of it all lately as well. I feel like i can totally emphasise with the way you are feeling. i got told today that it would be better for me if i can get my asthma classed as a disability and go on permanent sick, but as you say how can anyone live on SSP which would have to do for few month before you can claim disability benifits.
I do hope that you soon get everything sorted and the cons will sign you of the sick so you can get back to work.
i will join you in screaming and stamping your feet and crying! I am fedup of my lungs! They are damaged and they are being grumpy. Why has september come a whole three weeks early??!
I do not want to be ill just yet i was enjoying the summer and being well. Elderly people live better lives than i do. I have to use a walking frame and i am only 25. Brittle asthma is so annoying and when it is out of control it takes forever to get it back in control!
Grr!
Hugs to you charlie! You have my full understanding. The government penalise you for being ill or disabled and they have no understanding of anything. Can you ask for medical transport?
Plumie
i will join you in screaming and stamping your feet and crying! I am fedup of my lungs! They are damaged and they are being grumpy. Why has september come a whole three weeks early??!
I do not want to be ill just yet i was enjoying the summer and being well. Elderly people live better lives than i do. I have to use a walking frame and i am only 25. Brittle asthma is so annoying and when it is out of control it takes forever to get it back in control!
Grr!
Hugs to you charlie! You have my full understanding. The government penalise you for being ill or disabled and they have no understanding of anything. Can you ask for medical transport?
Plumie
Stupid cnt get disabitility!
I sypathise with u plumie, im 20 and using crutches to walk coz im so exhausted with my asthma and becuase of the pred i have terrible muscle weakness and pains in my legs making it hard for me to walk!!
My resp nurse has tried fighting with the gvnmt to get a section on disability forms for asthmatics who are having a rubbish time for 6-12. Months and then to have it reduced of stablised...but unfortunatly she keeps failing!!
Shame though coz that would be perfect for people like us!!!
Cortisol level ok by the way people! Acording to doc in a and e 'its my body going onto shock for reducing steroids to quickly and i will need to stay on them longer now' damn u doc i want to get off the steroids!!! Im walking like ive had a toilet accident becuase of them weak and painful leg muscles now...
ok lets take step back...just have the doc from a and e ring me...they got my bloods wrong...my cortisol level is in fact 72 so very low...they have just apologies prefusly and told me i now need to get in contact with my gp asap to work out away forward as they are think i may have addisons...so that on top of asthma, o you gotta love it hey!!!
x
Oh no, all you need, something else on top of asthma! Hugs and hope they can get at least something under control soon. xxx
This is SO not fair. Sending you many hugs and wishing you well.
xx
If only the silly GP had listened to what i was telling them last week istead of him saying its steroids and im just worried bout your bones...maybe i wouldnt have needed to visit the hotel de la hospital last night then...gggrrr!!!
Charlie- we've just been through the same with my daughter. We too had call from hospital after a routine blood test. Her cortisol levels were a mere 16.
After alot of to-ing and fro-ing, the consultant feels it's steroid induced. Although due to now dodgy thyroid levels too we are waiting for the app with the endocrinologist to determine if Addisons or not!
Feel free to pm me anytime. Let us know what your gp says today.
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