💬 Discussion Topic: Insights and Adv... - Research Opportun...

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💬 Discussion Topic: Insights and Advice for Our Former Selves

AnnaHU profile image
AnnaHUHealthUnlocked
8 Replies

Embarking on a health journey is a transformative experience that often involves self-discovery, challenges, and triumphs.

Imagine having the opportunity to go back in time and share valuable insights with yourself at the start of your health journey.

By reflecting on the advice we would give to our former selves, we not only acknowledge the progress made but also contribute to a collective dialogue that can inspire and guide others on their paths to better health.

In the replies below, please share the advice and wisdom you would offer to your former self, reflecting on the lessons learned and how they have shaped our ongoing pursuit of well-being.

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AnnaHU profile image
AnnaHU
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8 Replies
Bassetmommer profile image
Bassetmommer

If I could go back, the one thing I would have done differently was pushed harder for testing for what was going on with me. Back then, when I first started having issues with pain in my back and feet, I was told I was fat and to lose weight. I was so stupid that I did not push harder. For three years, she di did not test me until my hands curled up. I was also PRESCRIBED 1800 mg of ibuprofen every day for three years for the pain. If I knew then what that would do to my kidneys, I would never have taken it. After finally being tested, I have severe Psoriatic arthritis. And now, end stage renal disease.

After a clot in my arm, I was put on blood thinners for 17 years. I demanded to be tested since there had been no reoccurrence of clot issues. And after many tests, it was determined that I do NOT have any anticoagulant issue. 17 years of monthy labs and taking rat poison.

I trusted the healthcare system and it failed me.

curly-quavers profile image
curly-quavers

Hello anna. I think looking back at my situation over the years and finding you cannot cope with normal day to day activities to seek help and acknowledge the symptoms and act on it. I used drink to block out things, but it just got worse. I could not face the doctor or talking to anyone of the heartache I was feeling. But as my health started to effect me in different ways I had to go to the doctors to ask for help. Anti depressants were given and this was the start of this long journey.

This medication was strange as I would forget things like put the cooker on and leave my food burning inside, or things that go in the cupboard I would put in the fridge. I could not be bothered getting dressed or doing my hair, until my son would say something. After 9 months of this I had enough and after a few months I had a call back from the doctor and I explained things and so my meds were changed. I am on my 3rd medication and the dose was increased after 9 months as I went out and had a panic attack. I will be on medication long term now as I have left things too long.

So my advice would be, dont try do this alone. Get help and dont feel taking medication is some sort of failure in being able to cope with life, because there are times things just get to you deep inside and your body shuts down. Take time out from everything, time, space, sleep medication, rest is what you need, it may take months, it may take years, but it is time for you to try get through this time. Mental health cant be rushed.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

OOPS

It should read YOU'R' former self!

I would have stood up to the Encrinologist in refusing to take METOPROLOL. I did say "no" to it.

I proved 1 year 6 months after my stroke that it made me breathless. Left my heart rate @ 186 avg day. And pauses at night. A 24-hr heart monitor proved it. Bisoprolol a bit better @ 156bpm but left there still uncontrolled.

Then I went privately to H/Specialist. A CCB did the trick after 2 years 3 months.

But damage has been done to my heart.

CCB 120mg Diltiazem for heart rate controlled

BB low dose Bisoprolol for BP. controlled

Yippee.

cheri JOY. 75 (NZ)

focused1 profile image
focused1

It is difficult because unless you have the funds to pay then you are at the mercy of being on waiting lists . I doubt whether apart from keep phoning the hospital to reiterate that I was available 24/7 , could go anywhere at anytime for surgery I could have done anymore . I managed to get a place on a hospital forum zoom chat but I feel we were all telling similar stories of long waits which resulted in our condition being worse when we finally got treatment . Our conditions varied and it was therapeutic to hear that we weren’t alone but it resolved nothing . The positive for me is after surgery I embarked on my own journey unsupported as I didn’t have a follow up appointment after my operation to get my weight to an acceptable level. I lost 18kg and after 5 years I maintain at about a 12 kg loss so you have to be in charge of yourself . My medical issues aren’t really the story here but the common factor of waiting too long on medication, not being able to plan a holiday or apply for another job , move house because of the unpredictability of your medical conditions and maybe that phone call for a pre op is draining and dragging you down . Unsure after several chats on this panel with no answers or practical solutions. Just obvious common solutions and sadly a overdose of empathy.

myllo profile image
myllo

Hi Anna,

When initially diagnosed with Calr+ ET , I tried hard to follow an anti inflammatory diet and accepted the daily aspirin prescribed. I wish I had known that it is policy in the NHS to automatically prescribe hydroxycarbamide when you hit 60 years old! There was not a comprehensive evaluation carried out . I wish I had pushed for that . The hydroxy was really destructive to my health but didn’t even reduce my platelet levels much despite increasing dosages. Thankfully I took myself off them and I should have had a frank talk with my MPN nurse before I reached that stage. So research your own condition, don’t just accept the “cheap as chips” prescriptions often handed out. Reach out to your health professionals to move forward. Hopefully they will listen.

Teaching profile image
Teaching

I would have have lived a healthier lifestyle as a teenager. I would have spoken out when I was being maltreated...... I would have chosen to stay with my biological parents instead of someone else that inflicted a lot of injuries on me. I would have changed a lot of things about me.

DandyButch profile image
DandyButch

Sadly, nothing has changed or improved since I had my first experience of mental health issues. Even when it happened, I new it was my hormones. I was about 32 years old.

Any doctor I spoke to, ignored my suggestion that it was hormonal. It took me about 7 years of persistence to prove that I had had a premature menopause, and was told it is like coming off heroine. Don't I know it.

Move the time on 30 years. I now have hypothyroidism and the standard treatment

actually made me worse, and my mental health plummeted.

Once again, I told every medical professional that it was because the levothyroxine wasn't working, regardless of test results. Again, I was basically ignored.

I am not a stupid person, and have researched things before coming to a conclusion of my own health, with no help from NHS, only barriers.

I am still amazed at the lack of joined up thinking within the NHS in that one illness which is not diagnosed properly can have profound effects on every other part of your body. They treat the symptom and not the cause.

I despair. No wonder so many people do not get better, because the undiagnosed health issue causes more problems, and damage, which may never be resolved, even with the correct diagnosis and treatment. Damage done.

There is a fixed protocol within the NHS regarding referrals. If you do not come within the criteria, you are not referred. Computer says no.

Unless the correct tests are carried out, no diagnosis can be made. You are at your GP's mercy. Again, the NHS limit expansive testing due to cost, which is counterproductive. Surely, a holistic view of the person, given any symptoms, is better, not just for the patient, but for the resources of the NHS, and consequently the wider family members, work colleagues, and indeed the country as a whole.

I feel that I have learnt, that nothing has changed, or improved in over 30 years.

Pip70 profile image
Pip70

My advice is not to put off the stuff you want to achieve til later in life(so glad I travelled/climbed/jumped/dived etc In my 20’s)and not left til retirement cos now I am unable to walk outside let alone climb and jump…🤣 and only 54 x

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