Stop the ride I want to get off

Has anyone ever got to the point where the endless battery of tests just wears you down and you want to say stop the ride I want to get off. Having been through all the asthma ones sometimes more than once the never ending PF recording that I was doing because although not demanded it made the people at the RBH happy. Due to the tummy thing I have had test after test looking for a cause, MRI's CT's various ""scope"" tests and then they tell you that it is not the ""gold standard test"". There is no doubt it happened they have lovely CT pictures of one of the worst cases of Ischaemic colitis they have seen but they still don't know for certain what caused it. Now they think something went wrong in my brain when I was very ill and because I was so poorly it was not noticed and as I recovered it was put down to muscle weakness, I do want to know what went wrong and where and I do want it fixed if possible but frankly I am sick of tests and hospitals of probes.

Anyone else ever felt like this, I feel guilty that i am not leaping about with joy at being refered for yet more tests. I have physios and OT's helping me and assessing me, I have just been through the very confrontational DLA application which was fine they awarded both higher rates but the explantion letter and the forms made me confront my limitations now.

Sorry for the ramble I know I should be grateful that I have the all the resources of the NHS working to help me, but I am tired and just want a break from it all.

4 Replies

  • Hi Bex, sorry you are having such a rough time. I do know how you feel. My asthma is brittle and, like you, have had numerous admissions, tests etc. It has now (fingers crossed/touch wood) become alot more stable and, although I am on nebs still, I am only admitted about once a year with my chest. However, I am currently undergoing tests for something unrelated to my asthma that has arisen. I know I should be grateful that I am still here but instead I am really angry and ****** off ! that I should have something else wrong with me. Life just isn't fair! You do get fed up having loads of medical treatment and then when you find out that there are other problems that are unrelated you kind of feel like you have had a raw deal! It's sometimes difficult to keep going.

  • Hi

    I can really sympathise with you. Like you I'm going through various tests at the moment and although I want the answers am throughly fed up with the amount of time I spend visiting hospitals (especially as its 4 different ones)

    I was told its normal to feel down every so often and wouldn't be right if I didn't. Quiet a few people who use this site have other conditons in addition to asthma. Only time I get fed up is when the asthma stops me having tests or treatment for other conditions.

    It does you good not to dwell on things and get it out your system. I know I've used the boards here to help when I feel like this especially as their are loads of people who have been in similar positions and have great advice.

    Hang in there and hopefully you'll get some answers. Is it possible you could take a break from the tests? or would it just be putting off the inevitable.

    Take care and hope you feel better soon


  • I can def relate as I go for asthma and my heart I seem to spend more time at the hospital out paitents than do in my own flat and for other things the staff in the out paitents must be sick of the site of me I somtimes walk through with my head down cause I think they are thinking omg she is back again and it is not a nice feeling

  • Hiya bex First of all big hugs as i know exactly where you are coming from but with different issues.

    IN the last yr i have been diagnosed with insulin dependent diabetes,cushings syndrome and im currently under investigation for anaemia that isn't resolving with max meds, a lump in my abdomen that no one can work out whjat it is and wont operate cos im too high risk and cardiac problems that are causing me to pass out at the moment, after an MRI at RBH it looks like dilated cardiomyopathy but need more tests to confirm so more waiting. last week i had a CT scan this week more bloods and a colonoscopy next week more bloods and a psych appt its never ending.

    I dread people asking me how I am as if i told them the truth they would wish they hadn't asked so i change the subject or just say plodding on! My kids are scared to plan anything in case Mums ""IN "" again and i really dont know what the bloke on my husbands station think of me and the stress i cause him.

    I would just love to have one day with no testing, injections, tablets ,nebs, and symptoms just to feel ' normal""

    As for DLA i just re applied and spent days in tears after as doing those forms really makes it hit home hoe cra**y thing are atm.

    I am now making myself have 1 treat a week be it a bit of pampering, a meal out,a new book things that i enjoy that make me feel a bit more human.

    Thinking of you and anyone else going through the same thing


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