For the advanced Nurse Practitioner from my local GP to call. I guess it's a triage to see if I'm GP worthy.
Trouble is I'm so exhausted by having to fight for EVERY diagnosis, treatment and any support, that I'm not sure I can be bothered anymore.
Do I really care that its 6months since urgent referral to cardio and for a spiromitor test, by the hospitals own doctors and I've heard nothing? Do I care that I still cant catch my breath? That I puff about like an overweight gran, not an underweight 43 year old? That I'm so exhausted by the smallest things that I just live. I'm not alive. That bending and lifting or holding things up triggers the worst pain I've felt. That talking with my best friend for an hour leaves me exhausted and collapsed on the floor, unable to see for the electric saw floaters that will lead to a migraine? That my BP is 159/63 and then 85/60 when It has always been 120/80.
Obviously i still care a little, because I'm ranting. But mostly, now, I just want the universe, to let me go. And I feel less and less sad about it.
NEVER LET A DOCTOR WRITE CHRONIC FATIGUE SYNDROME ON YOUR FILE AS ITS ALL THEY SEE. EVEN WHEN THEY KNOW THEY HAVE GOT IT VERY, VERY WRONG!!!
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woodlandwonders
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I am so sorry you are feel so frustrated and low at the moment.
I acknowledge the feeling of wanting to give up and throw the towel in. However I have learned that it's how I feel in the moment and this moment will pass.
The storm clouds pass.
Have you got anybody close to you that you can talk to about how you are feeling?
This is similar to me I was diagnosed cfs/me 10 years ago and have been ignored since... turns out my symptoms are actually CAD and I need stents in my coronary artery’s! They think I’ve been like this for a long time! But I was diagnosed cfs and ignored even when I had palpitations and chest pain which was actually angina!! They only sat up and took notice when I had a big angina attack at Christmas and since then I have changed GP and been looked after really well. She’s been really supportive and very quick getting me sorted. Don’t give up x
I am so sorry you had to go through this too, I wouldn't wish it on anyone. And so happy you finally got help. I hope life will be better for you now x
It was on the 10 year point that I found out it was an infectious disease called Q feaver. It had so long being ignored as CFS/ME, that its had a go at several internal organs and even my bone marrow. It now hides deep in joints, mutated, confusing my immune response.
Now I'm in the system trying to mop up the mess its caused, it's still a struggle to get people to see past the CFS with symptoms. I dont think they understand the disease so they ignore it and say "oh I see you have cfs"
I wish my Infectious Disease Consultant could treat me for everything. The first thing he said, after "we will find out what is wrong" was that "Chronic Fatigue is an umbrella of symptoms, not a disease, which people cant be bothered to find the cause of"
Q Fever (bacterial infection caused by inhaling livestock dust) was one of the biggest worries the adults in my family had - I grew up on a cattle ranch in the US Desert SouthWest where it is endemic. Too right Q Fever lurks in the body and likes to pop back up for a debilitating visit!
Very similar problem here. I have fibromyalgia for 30 + years and T 12 syndrome. GP couldn't see beyond that so my severe breathlessness was always put down to musculoskeletal until I had a heart attack. Even early this year when I had 5 months of extreme breathlessness it was again called muscular but at least this time I did get tests.
As I'm sure you know from experience , when you get longterm ill things seem to disappear. In my case, friends, home, partner, a career that I loved, plans for fostering, hobbies. And it is hard to find new things to fill these voids. Especially when you feel Ill all the time
My 2 friends, who have stuck with me, my oldest friends of course, are both high function autistic. So emotional stuff.......na, not so great. This is how it went...
Me: I'm kinda giving up a little bit
Them: I dont blame you. Im surprised you've lasted this long. It's a bit of a s**t , unlucky life you had.
Luckily i love them, their no filter minds and I can still laugh
Which i guess is why I'm putting my darkest thoughts out to strangers. Lovely strangers. With filters x
That phrase “The wistful longing of our former lives and the grief for the future we thought we would have” as made me take a deep breath, Covers my feeling on occasions. Thank you.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
and say "oh I see you have cfs"
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